My Notebook

This Notebook Belongs To

________________________________

2 Cancer Notebook

Cancer Notebook 3

Let’s discuss your Plan of Care and

Possible Appointments:

Navigation

Navigator Name and Contact Information

____________________________________________________________________________________________

Medical Oncology Consultation

Orientation/Education to the Infusion Center and Treatment Appointment

Infusion Center Appointment

____________________________________________________________________________________________

Radiation Oncology Consultation

CT Simulation Appointment

Radiation Treatment Appointment

____________________________________________________________________________________________

UPDATED: April 2019

Tallahassee Memorial Cancer Center

850-431-ICAN (4226)

4 Cancer Notebook

Cancer Notebook 5

My Health Care Contact Information

Resource Phone Number Comments

Tallahassee Memorial HealthCare 850-431-1155

Tallahassee Memorial Cancer Center 850-431-4226

Primary Physician

Surgeon

Dentist

Cancer & Hematology Specialists:

Dr. Tim Broeseker, Dr. Amit Jain,

Dr. Janice Lawson, Dr. Jeannine Silberman,

Dr. Karen Russell, Dr. Jayan Nair,

Dr. Mitchell Peabody, Dr. Jorge Perez

850-431-5360

Tallahassee Memorial Cancer Center

Outpatient Infusion

850-431-1712

Radiation Oncology:

Dr. Philip Sharp, Dr. Raj Bendre, Dr. Ovidiu Marina

850-431-5255

GYN Oncology Specialists:

Dr. Amanda Stephens

850-431-4888

Billing Department 850-431-6253

6 Cancer Notebook

Cancer Notebook 7

Your Cancer Center

Team

Administration/Management

Kathy Brooks, RN, BSN Administrator 850-431-4226

Jennifer Armstrong, RN, BSN Infusion 850-431-1712

Lynna’ Graves Radiation 850-431-4226

Sonia Lee Cancer & Hematology 850-431-5360

Judith Clayton, RN, BSN Cancer & Hematology 850-431-5360

Patient Navigation

Amy Anderson, RN Cancer Patient Navigator 850-431-3433

Dana Miles, RN Cancer Patient Navigator 850-431-2465

Amanda Hardwick, MSW Cancer Patient Navigator 850-431-4922

Annie Wood, MSW Cancer Patient Navigator 850-431-1680

Annette Garriagn, RN Cancer Patient Navigator 850-431-2345

Ali Kelly, RN, BSN Cancer Patient Navigator 850-431-0566

Sandy Grischy, RN, BSN, CHPCN Smoking Cessation 850-431-7600

Carrie Thornal, MSW Cancer Patient Navigator 850-431-0496

Survivorship

Lynn Caley, RN, BSN Cancer Patient Navigator 850-431-0581

Dietitians

Candi Boucher, MS, RD/N, CSO Oncology Dietitian 850-431-5532

Elyzabeth Anderson, PhD, RD/N, CSO Oncology Dietitian 850-431-3205

Research/Clinical Trials

Brittany Stith, RN, BSN Research Nurse 850-431-0673

Karen DeCardenas, RN, BSN Research Nurse 850-431-0644

8 Cancer Notebook

Cancer Notebook 9

Introduction ................................................................13

Acknowledgements ......................................................... 17

Organizing My Care .........................................................23

Organizing My Care ......................................................25-26

My Doctor Visits and Test .................................................27-30

Patient Navigation Services ....................................................

Health Care Contact Information ................................................

Medication Record .......................................................... 31

Allergies ....................................................................33

Symptoms Log ...........................................................35-36

Monthly Planner ..........................................................37-40

Notes ...................................................................41-42

Understanding My Diagnosis .................................................43

Understanding My Diagnosis - Cinical Trials .................................45-46

Welcome to Pre-Act .........................................................47

Hereditory Cancer ........................................................49-50

My Plan of Care .............................................................51

Surgery Options and Postoperative Care ....................................53-54

Breast Cancer-Related Lymphedema ..........................................55

Medical Oncology ........................................................57-59

Radiation Oncology ...................................................... 61-62

My Thriving .................................................................63

Coping with Cancer ......................................................65-67

Tips for Caregivers ....................................................... 69-71

Hand Washing ..............................................................73

Nutrition ...................................................................75

Cancer, Sex, and Sexuality ....................................................77

Quit Smoking ...............................................................79

Medical Music Therapy ....................................................... 81

Integrative Services ..........................................................83

Community Cancer Support ...............................................85-86

Cancer Resources ........................................................87-89

Journal .................................................................91-94

My Finances/Insurance ......................................................95

My Finances and Insurance ...............................................97-104

Notes ................................................................. 105-107

Glossary and References ....................................................109

Glossary and References ..................................................111-119

Table of Contents

10 Cancer Notebook

Cancer Notebook 11

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple Love

It cannot shatter Hope

It cannot corrode Faith

It cannot destroy Peace

It cannot kill Friendship

It cannot suppress Memories

It cannot silence Courage

It cannot invade the Soul

It cannot steal Eternal Life

It cannot conquer the Spirit.

Author Unknown

12 Cancer Notebook

Cancer Notebook 13

Introduction

14 Cancer Notebook

Cancer Notebook 15

This is your One Notebook, designed with you

and your family in mind. Tallahassee Memorial’s

Cancer Center has a Patient and Family Advisory

Council (PFAC), made up of patients and families

that have used our services. The members of

our PFAC felt that everyone needed a central set

of comprehensive information and educational

materials available for their personal use. They also

believed that you should have the opportunity to

“personalize” this Notebook, by making it a three

ring binder so that you can add things yourself

(such as lab reports, pathology reports, etc.),

as well as making available individual speciﬁc

handouts.

This Notebook and speciﬁc handouts are also

available in an electronic format for you on the

TMH Website, www.tmh.org. As your journey

continues we hope that you will build on this

information and ﬁnd it extremely useful and

valuable. You will be provided additional materials

by dierent members of your healthcare team.

For example, if you require chemotherapy, a nurse

will give you a speciﬁc handout on your chosen

chemotherapeutic agent. Also, tumor site speciﬁc

information will be provided to continue the

“personalization” of this notebook. We encourage

you to use all of the resources available, including

the National

Cancer Institute website, www.cancer.gov, the

American Cancer Society website, www.cancer.

org, and the American Society for Clinical

Oncology website, www.plwc.org.

Cancer is a disease that will require you to become

involved in the making of many decisions and to

help chart the course for your care and healing.

We would also like to thank our PFAC Membership

and many other individuals and sta that have

worked to provide you with this notebook.

If we can be of any service, please do not hesitate

to ask. Your feedback is always welcome to assure

that we keep you in the center of our care.

About Your One Notebook…

16 Cancer Notebook

Cancer Notebook 17

Tallahassee Memorial Cancer Center is the

longest continuously accredited Comprehensive

Community Hospital Cancer Program (CCHP) in

Florida and the only such program in the Big Bend

region. It ranks among the elite 134 CCHPs in the

country that have achieved accreditation with

commendation, a top honor awarded through the

American College of Surgeon’s Commission on

Cancer Care.

The Angie Deeb Cancer Unit is a dedicated

oncology unit with inpatient beds and chair

outpatient suites. It is the only dedicated oncology

inpatient unit in the region.

The Radiation Oncology Department uses

leading edge technologies and board-certiﬁed

radiation oncologists (physicians). Services include

intensity modulated radiation therapy, brain tumor

stereotactic radiosurgery, interstitial brachytherapy

or “seed” therapy for prostate cancer and

mammosite partial breast irradiation for breast

cancer.

The Sharon Ewing Walker Breast Health Center

is the only breast health center in the Big Bend

region that provides a wide array of diagnostic

and support services for the detection and

treatment for breast cancer. Services include

navigational services, digital mammography, and

genetic education for those at risk for cancer, early

diagnosis breast cancer counseling, assistance

with scheduling tests, surgery and therapies, and

personal ﬁttings for breast forms, mastectomy

undergarments and lymphedema garments.

Navigation Services for information regarding

cancer navigation services, please call 850-431-

ICAN (4226).

For tumor site speciﬁc information, please refer

to the NCCN Practice Guidelines in Oncology in

the folder of your notebook. If you did not receive

these guidelines, you can ﬁnd them at http://www.

nccn.org. By selecting NCCN Clinical

Practice Guidelines in Oncology, you will be

directed to a registration page that will allow you

to access the guidelines for speciﬁc cancers. These

pages will be very useful to you as you go through

your diagnosis and treatment.

The latest early detection, diagnostic and

cancer treatment options are available included

image guided neurosurgery, da Vinci® robotic

surgery, endoscopy, X-rays (CT and MRI),

Mammotone® breast biopsy system, breast

reconstruction and specialization in lung cancer

care.

For more information about the Tallahassee

Memorial Cancer Center, please call 850-431-ICAN

(4226) or visit TMH.ORG/Cancer.

Acknowledgements/ Information

18 Cancer Notebook

Cancer Notebook 19

Tallahassee Memorial Cancer Center

1775 One Healing Place, Tallahassee, Florida

Located near the corner of Miccosukee and Surgeons Drive

Phone 850-431-ICAN (4226)

We are pleased to announce that the following services are now being performed at our new

Cancer Center facility:

TMH PHYSICIAN PARTNERS

• Radiation Oncology Specialists

• Cancer & Hematology Specialists

• Gynecologic Oncology Specialists

• Surgical Oncology Specialists

TALLAHASSEE MEMORIAL HEALTHCARE – OUTPATIENT SERVICES

OP Infusion

Navigation and Counseling Services

Survivorship Programming

Nutrition Assessments

Music Therapy

Animal Therapy

Cancer Research and Registry

TALLAHASSEE MEMORIAL

CANCER CENTER

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20 Cancer Notebook

Cancer Notebook 21

Tallahassee Memorial Cancer Center –

Things to Know:

• Parking is available for both patients and

visitors, surrounding the center

• Wheelchairs are available for use

• Smoking is not allowed on the Cancer Center

grounds

Support Services:

• Music Therapy (upon request)

• Social Worker/Patient Navigator

• Registered Dietitian/Nutritionist

• Spiritual Counseling (upon request)

• Warm blankets and pillows

• Complimentary WiFi

Visitors and Guests – Things to Know:

• Bathrooms are available for visitors by the

elevators on the ﬁrst and second ﬂoor

• Food and beverages may be purchased each

day at the ﬁrst ﬂoor café, until 1:30 p.m. You

may bring snacks or lunch from home

• Out of respect for our patients, please refrain

from bringing food with strong odors

• Out of respect and safety for other patients,

we ask that there be only one visitor per

patient at a time

• Children under the age of 16 are not permitted

within the Center

• Cell phones are permitted, however we ask

that you keep them on silent and speak quietly

to avoid disrupting others

• We ask that you do not wear strong perfumes

or colognes, as treatments may make some

patients sensitive to smell

• Out of respect for our patient population,

please refrain from entering the center if you

are ill

For Our Infusion Patients:

Preparation For Your Visit:

• Our Outpatient Infusion Center cares for many

conditions including (but not limited to) the

treatment of cancer

• Please bring your medications (e.g. all home

medication, “as needed” medications, vitamins,

supplements etc.) or a list of all medications

and list of all prior surgeries with you when you

come to your appointment

During Your Visit:

• Upon arrival at the Tallahassee Memorial

Cancer Center, you will check in at the

Registration Desk on the second ﬂoor.

• During infusion, each patient will be in their

own

• individual space with a recliner, television,

privacy

• curtain and a chair for one visitor

• Bathrooms are available before, during and

after treatment

• Patient snacks and drinks are available, upon

request

• A light lunch is served every day for patients.

In order to accommodate dietary restrictions,

you may bring lunch or snacks from home

• Out of respect for others, please refrain from

bringing food with strong odors

• Television – please be courteous to others by

keeping the volume at a low level or by using

your own headphones

• Cell phones are permitted, however we ask

that you keep them on silent and speak quietly

to avoid disrupting others

• To help improve the patient experience, you

may be mailed a brief survey

• Before leaving, you will be asked to schedule

your next appointment. If not already, patients

receiving chemotherapy, will be provided with

education by a Nurse on course of treatment

and Potential side eects associated with

chemotherapy

New Patient Information

22 Cancer Notebook

Cancer Notebook 23

Organizing

My Care

24 Cancer Notebook

Cancer Notebook 25

Learning you have cancer can trigger a wide

range of emotions, including shock, fear,

numbness, sadness, and even anger and

betrayal. You may feel overwhelmed by your

emotions or by having to make numerous

decisions about your care. You may ﬁnd it

dicult to absorb so much new, and often

confusing, information.

Tallahassee Memorial Cancer Center experts

created this notebook to provide you with tools

and information you need to take an active role

in your care. The more you learn about your

cancer and the available treatment options,

the better prepared you will be to handle

the challenges ahead and to make informed

decisions about what is right for you. We hope

this notebook helps you during your personal

journey.

Don’t be afraid to reach out to others during this

dicult time. Your family, friends, your doctors

and health care team, local cancer support

groups and other organizations can provide

much needed support and encouragement and

play a vital role in your recovery.

The information in this section will help you plan

and prepare for your treatment. However, it is

not meant to replace the individual attention,

advice, and treatment plan of your oncologist

and medical team.

Notebook Tips

• Keep a list of all of your doctors (a form is

provided in this notebook)

• Take this notebook to every doctor’s

appointment and test for your reference.

• Keep records of all your visits on the form

included in this section (doctor, laboratory,

X-ray, etc.) Include:

• who you spoke with

• the date and time

• your questions and the answers

received

• Record the results of your tests and

procedures

• Make note of any X-ray ﬁlms you receive

and where you take them so they do not

get lost.

• Use the charts and forms included in

this notebook to keep track of medical

appointments and important information,

such as your medical history and

medications*.

• Record any reactions you have to

medications and treatments, as well as

unusual symptoms and report them to your

doctor.

• Jot down notes and questions on the blank

pages.

* In the beginning, you will be ﬁlling out many

papers when you visit doctors and other health

care providers. This section includes a blank

medical history form and medications list you

can complete and take with you to your visits.

The forms are not meant to replace the papers

you will be asked to ﬁll out at your medical visits,

but they will help you remember important

information.

Your Health Care Team

You will have dierent types of doctors, nurses

and other health care providers taking care of

you throughout your course of treatment and

afterwards. Your health care team may include a:

Primary care doctor: the doctor you see for

regular medical care.

Surgeon: the doctor who specializes in surgical

procedures for cancer.

Pathologist: the doctor who examines tissue

samples under a microscope to see if they

contain cancer or abnormal cells.

Medical Oncologist: the doctor who specializes

in chemotherapy or hormone therapy to treat

cancer.

Organizing My Care

26 Cancer Notebook

Radiation Oncologist: the doctor who

specializes in radiation to treat cancer.

Dentist: The doctor you see for the diagnosis,

revention, and treatment of diseases of the

teeth, gums, and related structures of the

mouth, ncluding the repair or replacement of

defective teeth. A periodontist is a dentist who

specializes in diseases of the gums and other

structures surrounding the teeth.

Cancer Navigators: Through patient navigation,

a registered nurse or social worker actively

guides patients through the health care

system. The navigator makes sure patients get

needed resources and support. The navigator

can eectively help patients to avoid ﬁnancial,

physical, social, or educational barriers to care.

The Survivor Navigator will follow up and be

a point of connection as you continue your

journey.

Chemotherapy/Biotherapy Oncology Nurse:

the nurse specially trained to administer

chemotherapy and biotherapy medications.

Oncology Nurse: the nurse specially trained to

care for cancer patients.

Oncology Social Worker: the social worker who

specializes in providing counseling and other

mental health services for cancer patients.

They also refer patients to other support

services and can provide information about

helpful community resources.

Registered Dietitian/Nutritionist: the health

care professional who can recommend diet

changes to help you get the proper nutrition

before, during and after your treatment.

Your Right to Know:

You have the right to know-in a language you

understand-as much as you want about your

medical condition. However, you need to let your

health care team know how much information

you really want and when you are ready for the

information. It can be a lot to take in at once.

You will receive information from many dierent

people and sources. It is important to keep notes

during your visits and to compare information

you receive. If you have questions or receive

conﬂicting information, share it with your doctor

who will be your main source of information.

Developing a good relationship with your doctor

is an important part of your care. Your doctor

should make you feel at ease when sharing

information, asking questions or expressing

concerns.

You will feel more conﬁdent and secure in

the choices you make if you understand the

recommendations and explanations given

to you by your doctor and other health care

professionals. If you have questions, don’t

be afraid to ask. Many people seek a second

opinion before deciding what to do about their

course of treatment. Most insurance companies

cover second opinions, but check with yours to

be sure.

Lab and Test Results

You will undergo a number of tests and studies

throughout the diagnostic and treatment

process. You will also consult with several

physicians. It is very important to keep track

of your test results and the physicians and

providers for your visit.

The following tips will help reduce the stress of

lost or delayed records and provide you with an

ongoing record of your care.

• Ask that a copy of each test report be sent

to you and all the providers on your list.

• File the reports in this notebook with the

most recent report in front.

The types of reports you may receive will vary

according to your type of cancer. The types of

reports you may receive include but are not

limited to:

• Mammogram and Ultrasound reports

• MRI, CT, and PET reports

• Blood tests

• Electrocardiogram (EKG)

• Pathology reports (often two or three

dierent reports)

• Operative/Surgical reports

Cancer Notebook 27

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

My Doctor Visits and Tests

28 Cancer Notebook

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

My Doctor Visits and Tests

Cancer Notebook 29

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

My Doctor Visits and Tests

30 Cancer Notebook

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

Date: ____________________________________

Of Doctor’s Visit

Or date of test, procedure, or examination

____________________________________________

Name of Person I spoke with or Name of

laboratory, radiological, or other exam

____________________________________________

Name of Doctor’s oce or Doctor who ordered

examination

Results:

_____________________________________________________________________________________________

Question Answer

_____________________________________________

My Doctor Visits and Tests

Cancer Notebook 31

MY MEDICATION RECORD

Prescriptions,

Supplements & Herbs*

Dose/Strength

Times

Per Day

Purpose

(ex.: blood pressure,

cholesterol, pain, etc.)

* List allergies on following page.

32 Cancer Notebook

Cancer Notebook 33

ALLERGIES

Allergies Type of reaction

SURGERIES & PROCEDURES

Surgical Procedures Date

Notes

34 Cancer Notebook

Cancer Notebook 35

SYMPTOMS LOG

Keeping track of how you are feeling, especially the side eects related to medications and treatment can help your discussions with your healthcare

team. Be sure to always discuss your symptoms with your medical team.

Date/

Time

Location

(Part of

body

eected)

Symptom/Side

eect

Severity

1-10

(10 = most

severe)

Action/medication

taken

Called

doctor

or

nurse?

Action

plan for

relief

Relief

yes/

no

Number

of Hours

of relief

Notes

36 Cancer Notebook

SYMPTOMS LOG

Keeping track of how you are feeling, especially the side eects related to medications and treatment can help your discussions with your healthcare

team. Be sure to always discuss your symptoms with your medical team.

Date/

Time

Location

(Part of

body

eected)

Symptom/Side

eect

Severity

1-10

(10 = most

severe)

Action/medication

taken

Called

doctor

or

nurse?

Action

plan for

relief

Relief

yes/

no

Number

of Hours

of relief

Notes

Cancer Notebook 37

Monthly Planner

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

38 Cancer Notebook

Monthly Planner

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

Cancer Notebook 39

Monthly Planner

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

40 Cancer Notebook

Monthly Planner

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

Cancer Notebook 41

Notes

________________________________________________________________________________________________

42 Cancer Notebook

Notes

________________________________________________________________________________________________

Cancer Notebook 43

Understanding

My

Diagnosis

44 Cancer Notebook

Cancer Notebook 45

Voluntary Participation

During the course of your treatment you may be

provided with an opportunity to enroll to one of

the clinical trials or registry studies our cancer

center has to oer. Participation in clinical trials

is always voluntary. You will not be enrolled in a

clinical trial without your permission.

What is a Clinical Trial?

A clinical trial is a research study designed

to answer one or more questions about how

a certain drug, treatment or medical device

aects a disease. Some clinical trials compare

existing treatments to determine which is

better. The current, approved treatments are

called the “standard treatments.” Sometimes

clinical trials are used to study dierent ways

to use the standard treatments so they will be

more eective, easier to use, and/or decrease

side eects. There are potential beneﬁts to

participating in a clinical trial, as well as potential

risks.

These beneﬁts and risks are dierent for each

clinical trial. You should discuss them with your

own doctor, as well as with the clinical trial’s

research team.

Is Participating in a Clinical Trial Right for Me?

The treatment you receive during a clinical trial

may help you. Clinical trial participants receive

either the standard of care (what scientists

and researchers consider the most eective

known treatment available) or the new drug or

treatment being considered. Newer therapies

may lead to better results. On the other hand,

they may not be any better, or even as good as,

standard therapies already available.

Participating in a clinical trial will require some

extra time on your part. The research team will

want to monitor you closely during the trial

and collect follow up information. This care is in

addition to the care you will continue to receive

from your oncologist and medical team.

Am I Eligible for a Clinical Trial?

Not everyone is eligible to participate in every

clinical trial. Each clinical trial has criteria about

who can participate, such as the stage of your

cancer, previous treatment history and other

medical conditions. These factors are not meant

to reject participation; they are used to ensure

that researchers will be able to answer the

questions they plan to study. Your doctor will

determine if you are eligible for a clinical trial

after a physical examination and a review of your

health history and medical records.

Considering a Clinical Trial

If you are eligible for a clinical trial, members of

your research team will meet with you to discuss

a number of issues as part of the informed

consent process. They will also provide you

with a written document called an informed

consent form. You will be given time to read

this document and talk it over with your doctor,

family or friends before deciding if you want

to participate. The consent form will answer a

number of questions, including:

• What is the purpose of the clinical trial?

• How long will the trial last?

• What is required of you to participate in this

study?

• What treatments or drugs will you receive

during the trial?

• What treatments, tests and/or procedures will

be required during the study? How many and

how often?

• Which treatments, tests, medications and/or

procedures will be paid for?

• What are the risks and beneﬁts of participating

in this research study?

• What treatment would be recommended for

you if you do not participate in the trial?

Understanding My Diagnosis –

Clinical Trials

46 Cancer Notebook

Questions to Ask About Clinical Trials

• Why is this study being done?

• What is likely to happen in my case if I decide

to participate/not to participate?

• What are my other options (standard

treatments, other studies)? What are their

advantages and disadvantages?

• What were the results of any previous studies

of this treatment?

• What kinds of tests and treatments does the

study involve? How often are they done?

• Will this require extra time commitment on my

part?

• Will I continue to be under the care of my

doctor, or will I be seeing a dierent one (or

both)?

• Will I have to travel somewhere to receive

treatment? Will I be compensated for travel

expenses?

• How could the study aect my daily life?

• Will I still be able to work/go to school?

• What side eects might I expect from the

study treatment? (Remember that there can

also be side eects from standard treatments

and from the disease itself.)

• Will I have to be hospitalized? If so, how often

and for how long?

• Will I have any costs? Will any of the

treatments be free? Will insurance cover the

rest?

• If I am harmed as a result of the research, what

treatment will I be entitled to?

• How long will the study last?

Can I choose to continue to get this treatment,

even after the study ends?

• Are there other sources of information about

the study (for example, the Internet)?

• Are there others participating in the study I

should speak to?

More Information on Clinical Trials

You can ask your doctor or health care team

for speciﬁc information regarding clinical trials

available in your area.

You can also contact the National Cancer

Institute (NCI) at 1-800-4-CANCER or

clinicaltrials.gov for a comprehensive list of

ongoing clinical trials.

Cancer Clinical Trials

A clinical trial is a research study designed

to answer one or more questions about how

a certain drug, treatment or medical device

aects a disease. There are potential beneﬁts to

participating in a clinical trial, as well as potential

risks.

These beneﬁts and risks are dierent for each

clinical trial. You should discuss them with your

own doctor, as well as with the clinical trial’s

research team.

You can ask your doctor or health care team

for speciﬁc information regarding clinical

trials available in your area. You can also

contact the National Cancer Institute (NCI)

at 1-800-4-CANCER or clinicaltrials.gov for a

comprehensive list of ongoing clinical trials.

For more information, please contact:

Brittany Stith, RN, BSN, OCN

850-431-0673

Brittany.Stith@TMH.ORG

Karen deCardenas, RN

850-431-0644

Karen.deCardenas@TMH.ORG

Cancer Notebook 47

Oncologist-approved cancer information from the American Society of Clinical Oncology

PRE-ACT (Preparatory Education About Clinical Trials) is an educational program designed to provide

general information about clinical trials. PRE-ACT was developed with support from the National Cancer

Institute (NCI) to help patients better understand what clinical trials are and how they work. PRE-ACT

delivers clinical trial information through a series of short videos. You may view the entire library of these

videos, or choose to have PRE-ACT personalize your videos based on your feedback.

To receive personalized videos, you will need to create or login in your Cancer.Net account. Having an

account allows you to stop and return to the process as often as you need.

A Cancer.Net account requires you to provide an email address, username, and password. This

information is only used for accessing speciﬁc Cancer.Net features, such as PRE-ACT, and you will not

receive emails from ASCO.

We appreciate your interest in PRE-ACT and hope to provide you with useful information that may help

you in considering all of your treatment options.

Please click “Start” to begin the PRE-ACT educational program. If you already have a Cancer.Net account,

please click the “Returning Visitor” button to log in and continue.

Links:

http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/pre-act

Welcome to PRE-ACT!

48 Cancer Notebook

Cancer Notebook 49

Overview

Cancer is a relatively common diagnosis in the

general population, and the majority of cancers

are not due to inherited (genetic) factors. When

cancer develops because of genetic factors, or

mutations, individuals carrying these genetic

mutations present wrth often very high risks of

cancer. In addition the cancer tends to occur at

a younger age than in the general population.

While hereditary cancer syndromes account for

a minority of cancer diagnoses, rt is important

that they are identiﬁed as general population

screening is not adequate.

What Percentage of Cancer is Hereditary

Cancer?

Underlying etiologies of cancer are generally

thought to fall into three dierent categories

including:

• Sporadic - the cancer is likely due to

several factors (largely environmental) with

increasing age being the largest risk factor

• Familial/Multifactorial - Where there is a

clustering of cancer in the family likely

due to several genetic and environmental

factors shared amongst family members

• Hereditary - the cancer in the family is due

to a single gene alteration predisposing

members of the family Who carry the

alteration to a signiﬁcantly higher risk

of cancer than observed in the general

population

Genetics and Inheritance of Hereditary Cancer

Genes are the instructions for the body; they

provide the cell with information about how to

grow, develop, and perform its normal functions.

When a gene’s code contains a change, called

a mutation, the nom1al cell function is impaired.

Thus in some instances, gene mutations can

lead to disease. Hereditary cancer syndromes

can be due to mutations in many dierent genes

and these mutations predispose individuals to

increased risks for cancer.

Each person has two copies of every gene. One

copy is inherited from their mother, and one

copy is inherited from their father. Mutations

causing hereditary cancer syndrome can be

passed down through the family by both men

and women. The risk to children of an individual

with a hereditary cancer syndrome depends

on the function of the speciﬁc gene carrying a

mutation.

For many hereditary cancer syndromes, genetic

testing is available to help conﬁrm Whether

a family has a mutation in a known gene. If a

mutation is found, this conﬁrms the diagnosis

of a particular hereditary cancer syndrome and

allows other at-risk relatives to be tested for the

speciﬁc mutation.

Hereditary Cancer

Brought to you by the Notional Society of Genetic Counselors , Cancer Special Interest Group

HEREDITARY, 5-10%

FAMILIAL, 10-20%

SPORADIC, 75-80%

FACT SHEET

To ﬁnd a genetic counselor near you, go to www.nsgc.org

50 Cancer Notebook

Medical Management

There are interventions available for most

individuals with a diagnosed hereditary cancer

syndrome to address the increased cancer risks

by following specialized cancer prevention and

early detection guidelines. These interventions

can often include a range of recommendations

and options,such as regular screening,

preventive surgery and certain medications.

When possible, individuals with hereditary

cancer syndromes should seek management

with physicians or centers Who are experiences

with this condition.

When to consider Evaluation for Hereditary

Cancer

Reviewing family history information with a

genetic counselor can help determine the

chance that a family has a hereditary cancer

syndrome that may be predisposing individuals

to cancer.

Features in the family history which may suggest

a hereditary cancer syndrome:

1. Several family members with the same or

related forms of cancer, often in multiple

generations

2. Cancer occurring at a young age of onset

3. Individuals with bilateral or multiple

primary tumors

4. Rare cancers or cancer in the less

commonly aected sex (such as male

breast cancer)

5. A lack of environmental risk factors

Genetic Counseling

The diagnosis of a hereditary cancer syndrome

can be complex with the features of a family

history possibly representing multiple hereditary

cancer syndromes (and therefore other genes).

In addition the cancers in a family may be due

to a combination of genetic and environmental

factors. For this reason, a detailed review of

the family history by a genetics professional is

important before pursuing any type of genetic

testing. Genetic test results can be complicated

and are most useful When interpreted by a

genetics professional in the context of an

individual’s complete personal and family history.

It is important to consider both the pros and

cons of genetic testing before pursuing such

tests. A genetic counselor can help to identify

and explain issues that should be considered

regarding genetic testing. A genetic counselor

also can help determine Which, if any, genetic

tests may be helpful for a family.

To locate a genetic counselor near you, please

visit www.nsqc.org and click on the ‘Find a

Genetic Counselor’ link.

Genetic Discrimination

The Genetic Information Nondiscrimination

Act (GINA) was signed into federal law in

2008 . GINA prohibits health insurers and

most employers from discriminating against

individuals based on genetic information

(including the results of genetic tests and family

history information). According to GlNA health

insurance companies cannot consider genetic

information to be a preexisting condition, nor

can they use it to make decisions regarding

coverage or rates. GINA also makes it illegal for

employers to use genetic information in making

decisions about hiring, ﬁring, promotion or terms

of employment. It is important to note that GINA

does not oer protections for life insurance,

disability insurance, or longterm care insurance.

More information about GINA can be found

by contacting a local genetic counselor or by

visiting www.ginahelp.org.

Tallahassee Memorial Clinical Genetics Center

If you are interested in having a consultation to

discuss your personal and/or family history of

cancer and genetic testing options please ask

your physician for a referral to the Tallahassee

Memorial Clinical Genetics Center. This clinic is

staed by Laura Martin, MD a clinical geneticist

and Katie Farmer, MS, CGC a certiﬁed genetic

counselor.

Tallahassee Memorial Clinical Genetics Center

3333 Capital Oaks Drive

Tallahassee, FL 32308

Ph- 850-431-4041

Fax- 850-431-4471 for referrals)

To ﬁnd a genetic counselor near you, go to www.nsgc.org

Cancer Notebook 51

My Plan of

Care

52 Cancer Notebook

Cancer Notebook 53

Depending on the type and stage of your

cancer, you may need surgery to eectively treat

your cancer. The following information covers

dierent surgery options your doctor and health

care team may discuss with you. It also includes

tips on how to care for yourself after surgery. If

the information included here diers from what

your individual surgeon recommends, follow

your surgeon’s directions. If you have questions,

don’t hesitate to ask your doctor or health

care team. In certain instances your doctor

may recommend that you have neoadjuvant

chemotherapy. Neoadjuvant chemotherapy is

chemotherapy given before surgery to shrink the

cancer, which may allow a person with a larger

cancer to have to surgically remove the tumor or

improve the results with other surgical options.

The information in this section will help you plan

and prepare for your treatment. However, it is

not meant to replace the individual attention,

advice, and treatment plan of your oncologist

and medical team.

Surgery

During a surgery, a surgeon will remove the

cancer and a small amount of normal tissue

surrounding it. The amount of tissue removed

depends upon the size of the cancer. The

surgery is usually done on an outpatient basis.

The tissue removed during the surgery will be

sent to the pathology lab after surgery. The

pathologist will make a detailed description

of what the cancerous cells look like and how

they react. The pathologist will also determine

if there are cancer cells at or very near the edge

(or margin) of the tissue removed. If cancer cells

are found at or near the edge, the surgeon may

recommend a second, larger surgery if that is

the best option.

If no cancer cells are found at or near the edge,

you may start radiation therapy once you have

healed from the surgery or have completed

your chemotherapy, if chemotherapy is

recommended.

Lymph Nodes

Lymph nodes are small bean-shaped structures

that run close to your vascular system (arteries

and veins) and are part of the lymphatic system

running throughout your body. An important

part of your immune system, this elaborate

network of vessels and nodes helps ﬁght

infection and clean up waste products made by

the body. However, if cancer cells invade these

lymph nodes, they can spread to other parts of

the body.

Wound Dressing and Drain Care after Your

Surgery

When you go home, you may have a dressing

over your incision or wound where the surgery

was done. You may also have Jackson-Pratt

drains (JP drains) for a few days or week after

your surgery. Below are some general care

guidelines. Your surgeon will give you more

speciﬁc instructions on how to care for your

dressings and drains. (If these instructions dier

from what your individual surgeon recommends,

follow the directions from the surgeon’s oce.)

• Check your incisions every day. If your

incision/wound is healing well, without

drainage, then you do not have to place a

dressing over it.

• If you do have dressings over the incision/

wound, make sure that the dressing stays

clean and dry. Change dressing daily or as

needed. If there is a change is the amount

or color of drainage, contact your surgeon.

• Your surgeon will let you know if you can

take a shower. If you are allowed to shower,

wash incision/wound gently with soap

and water. Avoid rubbing the incisions or

soaking in the bathtub. Pat them dry and

do not use ointments,creams, or lotions on

the incision.

• It is normal for your incision to bruise,itch,

burn, feel tight, or have some swelling. If

you notice a change in the appearance of

the incision/wound, call your surgeon.

Surgery Options and Postoperative Care

54 Cancer Notebook

Symptoms to watch for include:

• redness around the wound

• leakage of clear,bloody, or white ﬂuid

• large amount of swelling

• excessive warmth around the wound

• fever

If any of these symptoms develop, or you notice

a change in your incision/wound since discharge,

contact your surgeon.

Activities after surgery

The time it takes to return to normal activities

after surgery depends on the type of surgery

performed. Always discuss with your surgeon

before resuming any activity.

General guidelines

When you ﬁrst return home, you should be able

to do much of your own personal care, such as

bathing, dressing, preparing simple foods, etc.

You may ﬁnd that you need to take rest breaks

between activities, but you should not stay in

bed for prolonged periods during the day. A

short walk each day will help your recovery.

You can resume light household and work

activities such as simple meal preparation,

folding laundry, using your computer and

completing paperwork as you feel ready. Avoid

activities that require moderate to heavy

lifting (grocery shopping) or pushing/pulling

(vacuuming) and repetitive motions. A good

rule during this time is to listen to your body, do

what is comfortable, and stop and rest when you

feel tired.

Driving

Your surgeon will let you know when you may

be able to resume driving. You should not be

driving as long as you are on pain medications.

A pillow or seat belt positioning device may

help cushion or adjust the seat belt to a more

comfortable position when you drive.

Returning to work

Most people are ready to return to work within

several weeks after their surgery. Again, this time

frame depends upon the extent of the surgery

and the type of work you do. Another option

may be to return to work part-time, gradually

adding additional hours as you feel ready. Your

doctor will help you determine what is best for

you.

Cancer Notebook 55

Lymphedema is an abnormal accumulation of

lymphatic ﬂuid in the space between the cells

just under the top layer of skin aecting the

arm(s) and chest most often. This abnormal

accumulation of ﬂuid in the arm(s) and chest can

be the result of changes done to the lymphatic

system as the result of surgery and/or radiation.

We do not know why one woman may develop

lymphedema after breast cancer treatment while

another, who has the same treatment, may not.

Sentinel lymph node biopsy has been proven

to lower the risk of developing lymphedema;

however it does not prevent it entirely.

Increased risk factors for upper extremity

lymphedema should be identiﬁed:

• Breast surgery with axillary lymph node

dissection

• Obesity is a well known contributing

factor to the development of lymphedema

ALL PATIENTS WITH AN AXILLARY LYMPH

NODE DISSECTION SHOULD BE REFERRED TO

A CERTIFIED LYMPHEDEMA THERAPIST.

Basic guidelines might lower your risk of

developing lymphedema:

• Avoid injury/Infection. Have blood drawn,

IVs and shots done in your unaected arm.

• Clean and protect skin and nails, using

lotion, sunscreen, and insect repellent.

• Avoid constriction or squeezing of the

arm. Have blood pressures taken on the

unaected arm. Avoid tight orbinding

clothing or jewelry.

• Wear a compression sleeve, garment,

or bandages when you ﬂy and perform

strenuous exercise or activities.

• Increase the level of exercise gradually

and build up duration of any new activity

slowly.

Signs of lymphedema:

• Swelling in the breast, chest, shoulder, arm

or hand

• Area feels full or heavy

• Skin changes texture, feels tight or hard, or

looks red

• New aching or discomfort in the area

Lymphedema treatment:

• Treated by an Occupational or

Physical Therapist with special

training in Lymphedema (Certiﬁed

LymphedemaTherapist)

• Complete Decongestive Therapy (CDT) –

compression sleeve

• Manual lymphatic drainage (MLD) – is a

type of massage

REFERENCES:

National Cancer Institute at the National

Institutes of Health (PDQ Study)

American Cancer Society

Oncology Nursing Society

Living Beyond Breast Cancer

National Lymphedema Network

Breast Cancer-Related Lymphedema

56 Cancer Notebook

Cancer Notebook 57

Medical oncology is the study and treatment

of cancer using chemotherapy and hormone

therapy. A medical oncologist is an internal

medicine doctor with special training in cancer

treatment. Many medical oncologists are also

specialists in hematology (study of the blood).

Their responsibilities may include:

• Managing the care of cancer patients

needing chemotherapy and hormones,

• Referring patients to and consulting with

other physicians and health care providers

for additional tests or procedures, and

• Referring patients to community resources

and clinical trials as appropriate

Chemotherapy

Chemotherapy or “chemo” treats cancer using

dierent chemicals (medications), which are also

known as:

• Anti-cancer drugs

• Anti-neoplastic agents

• Chemo drugs

• Biotherapy

• Hormones

Usually given in combination, these drugs target

cancer cells that are growing or dividing. They

can also aect normal, healthy cells.

Since cancer is a word to describe many

dierent diseases, there is no one type of

treatment that is used universally. Chemotherapy

is used for a variety of purposes:

• To cure a speciﬁc cancer.

• To control tumor growth when cure is not

possible.

• To shrink tumors before surgery or

radiation therapy.

• To relieve symptoms (such as pain)

• To destroy microscopic cancer cells that

may be present after the known tumor

is removed by surgery (called adjuvant

therapy). Adjuvant therapy is given to

prevent a possible reoccurrence.

Chemotherapy Terms

Chemotherapy encompasses a wide variety of

therapy treatments. Terms such as “adjuvant,”

“neoadjuvant,” “consolidation,” and “palliative”

often add to the confusion surrounding

chemotherapy if not properly deﬁned and

explained. The purpose of this page is to

increase the level of understanding about

various chemotherapy protocols currently used.

Adjuvant chemotherapy - Chemotherapy given

to destroy left-over (microscopic) cells that may

be present after the known tumor is removed

by surgery. Adjuvant chemotherapy is given to

prevent a possible cancer reoccurrence.

Neoadjuvant chemotherapy - Chemotherapy

given prior to the surgical procedure.

Neoadjuvant chemotherapy may be given to

attempt to shrink the cancer so that the surgical

procedure may not need to be as extensive.

Induction chemotherapy - Chemotherapy given

to induce a remission. This term is commonly

used in the treatment of acute leukemias.

Consolidation chemotherapy - Chemotherapy

given once a remission is achieved. The goal of

this therapy is to sustain a remission. This term

is commonly used in the treatment of acute

leukemias.

Maintenance chemotherapy - Chemotherapy

given in lower doses to assist in prolonging a

remission. Maintenance chemotherapy is used

only for certain types of cancer.

First line chemotherapy - Chemotherapy that

has, through research studies and clinical trials,

been determined to have the best probability of

treating a given cancer.

Second line chemotherapy - Chemotherapy

that is given if a disease has not responded

or reoccurred after ﬁrst line chemotherapy.

Second line chemotherapy has, through research

studies and clinical trials, been determined to

be eective in treating a given cancer that has

not responded or reoccurred after standard

chemotherapy.

Medical Oncology

58 Cancer Notebook

Palliative chemotherapy - Palliative is a type

of chemotherapy that is given speciﬁcally

to address symptom management without

expecting to cure the cancer.

How Chemotherapy medications work

Chemo drugs work actively against rapidly

dividing cells in the body, such as:

• Bone marrow, which produces red and

white blood cells and platelets

• Hair follicles

• The lining of the mouth, throat,stomach,

intestines and rectum

Chemotherapy drugs are not selective. They

cannot tell the dierence between cancer cells

and healthy cells, and they may destroy both.

Fortunately, normal cells recover and cancer

cells die. While the normal cells are recovering,

you may experience some side eects. Most of

these side eects can be prevented or lessened

with drugs and other treatments. Your oncology

nurse will discuss these with you.

How they are given

Chemotherapy drugs are given intravenously

(through a vein) or orally (by mouth) and

travel throughout the body. They may be given

before (neoadjuvant therapy) or after (adjuvant

therapy) surgery to treat primary cancer.

Chemo is given in cycles, which include

alternating treatment periods and rest periods.

This gives normal cells a chance to recover,

but does not give cancer cells enough time to

multiply. Each treatment may take a few hours,

depending on the type of drugs used and the

length of time it takes to administer each drug.

Treatments may be repeated every one to four

weeks, three to six months, or longer depending

on your treatment plan.

Side eects

Chemotherapy side eects can range from

minor to life-threatening conditions depending

on the chemo drug used, the dosage, and a

person’s overall health. Medical professionals will

inform you about all the potential side eects

of any treatment they prescribe before you give

your consent. These side eects are discussed in

detail in the “Chemotherapy and You” book that

you will receive.

Dierent people have dierent reactions

to the same chemotherapy. If you undergo

chemotherapy, you will not know how you will

react or what side eects you will experience

until a few days after your ﬁrst chemotherapy

session. Listen to your body, pay attention

to what you are feeling, and always report

symptoms to your doctor or nurse. Your initial

experience will help you prepare for and cope

with future chemotherapy sessions.

Hormone Therapy

Some tumors use estrogen and testosterone,

in women and men, to survive and grow. These

tumors are called hormone-fed or hormone-

responsive tumors. To determine whether a

tumor falls into this category, a pathologist

analyzes a sample of the tissue. If the tumor is

found to be hormone-response, your medical

oncologist likely will recommend hormone

therapy in order to decrease the hormone level

in your body by blocking the tumors route to the

hormones it wants and needs for growth.

Cancers most likely to be hormone-responsive

include:

• Breast cancer

• Prostate cancer

• Ovarian cancer

• Uterine cancer

Some forms of hormone therapy are also used to

treat such cancers as lymphoma, leukemia, and

multiple myeloma. Sometimes, hormone therapy

also is used to shrink tumors before surgery so

they are easier to remove. Medical oncologists

may also recommend hormone therapy after

treatments have ended to try to keep cancer

from recurring.

Cancer Notebook 59

Medical oncologists may recommend hormone

therapy to prevent cancer from growing,

especially in postmenopausal women since their

cancer cells often have receptors that attract

estrogen and /or progesterone. Pre-menopausal

women may also be prescribed hormone

therapy following surgery, chemotherapy, or

radiation therapy.

Hormone therapy treatment options are

available in several forms including surgery,

radiation, and drugs.

Possible surgeries include: removal of the

testicles, removal of the ovaries, or removal of

the adrenal gland.

Radiation therapy can stop hormone production

in the testicles, ovaries, and adrenal and pituitary

glands.

Drug therapy can be used to block the access of

cancer cells to your body’s supply of estrogen

or testosterone. Some drugs may be taken in pill

form, as an injection or intravenously.

Other treatments

Monoclonal antibodies: Targeted therapies

The antibody is given to some cancer patients

who produce an excessive amount of a protein

on their cancer cells. It helps to prevent the

cancer cells from growing and dividing. The

antibody can be given alone or in combination

with chemotherapy. Your physician will discuss

this therapy with you if you are a candidate

Bisphosphonates

These are drugs are given to those whose

cancer has spread to their bones. Pamidronate

(Aredia) and Zoledronic acid (Zometa), the

two most common bisphosphonates, are given

intravenously every three to four weeks to

strengthen the bones and relieve pain. They also

help lower blood calcium levels that sometimes

increase when cancer spreads to bones. Too

much calcium (hypercalcemia) can lead to

changes in mental status, nausea, vomiting,

constipation, bone fractures, kidney stones, and,

in severe cases, coma.

60 Cancer Notebook

Cancer Notebook 61

Initial Consultation

After registering at the front desk, a member

of the nursing sta will record your height

and weight and ask you about your medical

condition. Since each patient and disease is

dierent, your physician will review your records,

x-rays and pathology. Your physician will then

talk with you about your past and present health

history and examine you. Treatment options

will be discussed. If you are eligible for and

considering a research study (available at TMH),

members of the research sta will meet with you

to explain the study and to answer any questions

you may have. Prior to the beginning of radiation

therapy, you will be asked to sign a consent form

for treatment. The purpose of the consent form

is to ensure that you understand what to expect

from the treatment.

If further tests are needed, these will be

scheduled, and an appointment will be set for

treatment planning simulation.

Any questions you may have about insurance,

social security or Medicare will be taken care of

by a Patient Account Representative in our front

oce.

Simulation (Treatment Planning)

“Simulation” is not a treatment but an important

part of the treatment plan. It involves taking

special x-rays and measurements which are used

by the treatment team to outline the area of the

body that is to be treated so that the radiation

beam is properly positioned.

Simulation may take up to an hour and you will

lie on a ﬂat, narrow table. The area of the body

to be treated may be outlined with a temporary

skin marking. In a few days, these marks may be

replaced by a small, permanent ink dot (tattoo)

placed in the area of your treatment. This tattoo

further guarantees the accuracy of treatment

and saves time when and if you need to be

re-marked. Sometimes, special molds may be

made to assist in positioning during treatment.

A limited CT scan of the area that is going to be

treated will be performed during the simulation.

This is used to help the doctor see the area that

is being treated. Treatment will not start on the

same day as the simulation. You will be given an

appointment to return a few days later to begin

your radiation therapy.

Treatment

Radiation therapy uses high-energy radiation to

damage cancer cells so they do not continue to

grow. The radiation is aimed at the tumor and

the area close to it. Radiation treatments are

usually given ﬁve days a week, Monday through

Friday, but this may vary. Your physician will

discuss the treatment plan which applies to

your situation and the number, frequency and

schedule of treatments will be conﬁrmed.

Upon arriving each day, please register at

the front desk. Due to limited seating in

our treatment waiting room multiple family

members are asked to remain in the front

waiting room.

Delays may occur due to emergencies or

machine checks, but treatment appointments

usually remain on schedule, so it is important

to arrive on time, 10-15 minutes before your

appointment. If you need to come at a dierent

time please notify the therapist a day or two

before that treatment in order to avoid a long

wait. If for any reason you are unable to keep

your appointment, please call Radiation Therapy

at 850-431-5255 and state that you are under

treatment so that you will be transferred to the

appropriate extension.

Inpatients will be treated at a time convenient to

both patient and radiation therapist.

On the ﬁrst treatment visit, the radiation

therapist will show you the treatment room and

review your treatment schedule. A port ﬁlm

(an x-ray picture of the area being treated) will

betaken and then checked by your doctor to

ensure that the treatment is accurate. Additional

port ﬁlms will be taken at least weekly. These

ﬁlms are not intended to monitor the shrinkage

of the tumor, but to ensure that the radiation

treatment is being delivered to the appropriate

site.

Radiation Oncology

62 Cancer Notebook

The treatment is painless and similar to having

an x-ray picture taken. The table may be

uncomfortable but it is important to lie very

still. You will be left alone in the treatment room

during the actual treatment but the therapist can

see you on a TV monitor and can talk with you

and hear you through an intercom system.

Physical Evaluation

Treatment side eects depend on the area being

treated. We will discuss these with you and

help manage these side eects. The nurse and

physician will meet with you at least once per

week during your course of radiation therapy.

You will have the opportunity to ask questions

at that time. Tell the radiation therapist or your

nurse if problems arise at other times. If further

explanation is necessary, your nurse will refer the

problems to your doctor.

Skin Care

Good skin care is important. Daily baths or

showers are recommended with mild soap.

Lotion, creams, powders, oils and antiperspirant

type deodorants should not be applied in the

areas being treated without a recommendation

from your nurse or physician. Sun exposure

should be limited during treatments and for

several weeks after completion of treatment.

Discuss any skin problems that arise with your

nurse. You will be given speciﬁc instructions

about skin care for the area that you are having

treated.

Cancer Notebook 63

My Thriving

64 Cancer Notebook

Cancer Notebook 65

While your focus will be on your physical

health and all your tests and treatments, it is

important not to forget about your emotional,

psychological and spiritual health. They can

aect your physical health and play an important

part in your recovery. Remember that health

is not necessarily the ABSENCE of disease; in

fact, the following are some healthy ways to live

WITH disease.

1. The Emotional “Roller-Coaster”

• It may help you to know what to expect

when you ﬁrstlearn of your cancer. Many

people experience strongfeelings: shock,

fear, anger, disappointment, numbness.

Many are irate, disarmed, brokenhearted,

furious,speechless, overwhelmed, out of

control.

Keep in mind that there is no “right way” for

you or your family to feel about your diagnosis,

and that your family and friends will each have

a dierent way of handling news about your

cancer. For example, even though breast cancer

is increasingly treatable, it is not uncommon

upon diagnosis to fear death. Coping with

cancer involves ﬁnding people with whom

you can share these feelings, and honestly

communicate with others who can provide you

with up-to-date information. Also, some more

tips:

• Learn to ask for help. For example, have

family membersor friends help you get

your house ready before you havesurgery

or chemotherapy.

Rather than trying to “hide” your condition

from your family (as if they don’t already sense

something is wrong), include them in your

journey by assigning them tasks to help you,

such as cooking or yard work. Use these times

together to answer their questions and to

provide them with assurance.

Try to ﬁnd someone you can reach out and open

up to. It should be someone with whom you feel

safe sharing your thoughts, fears, anger and

hopes. Support groups also oer a safe place to

share your thoughts and emotions.

2. What legal issues do I need to discuss with

my family?

When you’ve been diagnosed with cancer, you

want to concentrate on getting better and

coping with your treatment. It’s also a good idea

to make some important decisions with your

family and doctor while you are still feeling well.

Things you may want to discuss include:

• An Advance Directive This document

contains written instructions specifying

the type of future medical treatment to be

used in the event you become unable to

speak for yourself.

• A Durable Power of Attorney for Health

Care This legal document authorizes

another person to make health-care

decisions for you if you became physically

or mentally unable to make these decisions

yourself.

• You can secure a form for this purpose

from your healthcare provider or call-

1-888-594-7437 to receive Five Wishes, a

living will form that is now recognized in

36states.

3. Coping with Fear and anxiety = Learning to

Manage Stress

The fear of cancer reoccurring is also a natural

and very powerful response. After a cancer

experience, your sense of self is altered forever.

You know that you are not protected from losing

your health. You may feel fearful, anxious or

uneasy for a long time after your last treatment.

It is important to deal with these feelings so that

cancer doesn’t rob you of living your life to the

fullest. Here are a few helpful tips:

• Talk about your fears and other feelings

with someone you trust. Being dishonest

and NOT talking about your feelings can

produce an atmosphere of uncertainty and

increased anxiety.

Coping With Cancer

66 Cancer Notebook

• Take control of your life. Be aware of the

cancer, but don’t let it dictate the way you

live. For example, monitor your rest and

relaxation; listen to your body, knowing

that crises drain our energy, while exercise,

sleep and nutrition are excellent resources

for managing stress.

• Learn to say “No;” learn to laugh at

yourself;

• Redirect your anxiety into energy for

taking action.

• Become knowledgeable about your cancer.

Knowledge is power.

• Remember to have regular check-ups, and

learn to trust your healthcare providers.

• Understand that there will be days where

you will have fearful thoughts. But also

know that there will be days where you

don’t.

• Focus on the here and now. Enjoy each day

and remember that life is a precious gift.

4. Depression

It is common for cancer patients to experience

some form of depression during their diagnosis

and treatment. This is called situational

depression. If you feel you are becoming

depressed, please tell your doctor, nurse or

therapist. They are there to help you and can

oer suggestions to get you through this

dicult period. Knowing that it is part of the

journey may help you discover your own ways of

dealing with the sadness, tears and occasional

guilt that accompanies this “dark night of the

soul.”

5. Spirituality: Suggestions for strengthening

hope for you and your loved ones.

• Maintain a healthy balance between

optimism and reality. Share a sense of hope

with one another.

• It is common to want answers for

questions like: “Why me?” and “What did

I do to deserve this.” Use these searches

to develop a deeper relationship with God

and/or your clergy.

• Find and use additional resources to

deepen your sense of meaning and

purpose to life.

• Find support in prayer and/or religious

faith, or in your philosophy of life.

• Reﬂect on what has helped you cope

with previous crises in life. How did that

experience impact your values, faith and

sources of comfort? How were you able to

“grow”through those experiences? Some

people actually become stronger.

• Learn from the stories of other cancer

survivors. Both you and your loved ones

are encouraged to participate in support

groups. How did they develop new coping

skills?

• Find creative ways to bring pleasure to

each day. Appreciate the beauty and

wonder present in daily life. Some believe

it is a gift from God.

• Find inspiration and hope in the things that

bring you joy(i.e. reading, music, family,

etc.) Talk about these with friends and

family who will listen to you.

The late Victor Frankl, M.D., once said, “People

who ﬁnd meaning in their lives tend to be

stronger survivors.” Eleanor Roosevelt, former

First Lady of the U.S. said, “You gain strength,

courage and conﬁdence by every experience in

which you really stop to look fear in the face.”

6. Should I join a support group?

People diagnosed with cancer, and their families,

face many challenges that may leave them

feeling overwhelmed, afraid and alone. It can be

dicult to cope with these challenges or to talk

to even the most supportive family members

and friends. If this is the case, you and your

family may want to join a cancer support group.

Cancer support groups can help you and your

loved ones:

• Feel less alone.

• Improve your ability to deal with the

uncertainties and challenges that cancer

brings.

• Meet others experiencing the same

problems and fears and discuss ways to

cope.

• Find a conﬁdential atmosphere where

you can discuss the challenges of your

illness or of having a loved one with cancer

without feeling judged.

Sometimes, others who have been through

similar experiences can explain things dierently

than your health care providers. Be aware,

however, that others may share information or

experiences that do not apply to you. Never

replace your doctor’s advice with that given by

another patient.

Cancer Notebook 67

7. Getting a good night’s sleep

Despite exhaustion and fatigue from treatment

and stress, between 30 and 50 percent of cancer

patients report problems falling asleep. It may

be helpful to:

• Keep a record of your sleeping patterns for

two weeks. When do you go to bed? Do

you fall asleep immediately? When do you

wake up? Are hot ﬂashes waking you up at

night? Is pain interfering with your ability

to sleep?

• Share this record with your doctor and

come up with a“sleep plan.” This may

include medication and lifestyle changes.

The National Cancer Institute recommends the

following to help promote rest and treat sleep

disorders:

Create an environment that decreases sleep

interruptions by:

• Lowering noise

• Dimming or turning o lights

• Adjusting room temperature

• Placing pillows in a supportive position

• Wearing loose, soft clothing to bed

• Eat a high protein snack two hours before

bedtime.

• If you can’t fall asleep or stay asleep,

leave your bedroom and engage in a quiet

activity in another room. Don’t let yourself

fall asleep outside the bedroom. Return to

bed when you are sleepy.

• Maintain a regular wake-up time.

• Distract your mind. Try reading, watching a

video, or listening to books on tape.

• Avoid caeine within four to six hours of

bedtime.

• Avoid the use of nicotine close to bedtime.

• Don’t drink alcoholic beverages within four

to six hours of bedtime.

• Avoid strenuous exercise within six hours

of bedtime.

8. Do I need medication?

There are many situations throughout your

recovery process where medication may be

warranted. Any symptom that is interfering with

your quality of life should be discussed with

your doctor or health care provider. These may

include:

• Anxiety

• Bone loss

• Constipation

• Depression

• Hot ﬂashes

• Insomnia

• Nausea/vomiting

• Pain

You are your best advocate, so don’t be afraid to

speak up and talk with your doctor.

ON COPING…

God, please give me the strength to ﬁght and

the strength to heal. Please keep watch over my

children; allow them the courage to endure the

stages of my healing. Thank You for Your loving

support and for the encouragement from those

around me. And guard my sense of humor so I

can maintain balance. Amen. (Katherine Welsh,

Survivor, Pray It Forward: A Gift from a Cancer

Survivor; Ligurion, Oct.2008)

68 Cancer Notebook

Cancer Notebook 69

Home > Coping With Cancer > Caring for a

Loved One > Tips for Caregiving

Printed from http://www.cancer.net/coping-with-

cancer/caring-loved-one/tips-caregiving

This section has been reviewed and approved by

the Cancer.Net Editorial Board [2], 04/2015

Listen to the Cancer.Net Podcast: Tips on

Caregiving [3], adapted from this content.

Key Messages:

Caregiving often involves dierent types of

support and tasks, which can be overwhelming.

There are several ways to help manage all

the duties of a caregiver to help you provide

eective care.

Suggestions for being an eective caregiver

Caring for a person with cancer may seem

complex and like too much to cope with at ﬁrst.

Depending on the person’s needs, you may

provide dierent types of support, such as:

• Emotional support

• Help with medical care

• Assist with ﬁnancial and insurance issues

• Serve as the communicator between the

patient and the health care team

You may ﬁnd the following tips can help you

become a successful caregiver:

Remember that caregiving is a team eort [4].

A caregiver is a member of an important team

of family members, friends, volunteers, and the

health care team. Each member of the team

oers dierent skills and strengths to provide

eective care.

If you are the main caregiver, help each team

member express concerns, opinions, and

emotions. Also, make sure that the person with

cancer has a central role in all discussions and

decisions, if possible. It is very important for the

person with cancer to feel like an active member

in their care.

CancerCare provides a special website for

caregivers called My Cancer Circle [5]. This

website can help

caregivers organize the family and friends who

want to help. Find other online communities for

support [6].

Create a list of tasks. Caregiving, like any

responsibility, involves tasks of varying

importance. Start by making a list of all of your

caregiving tasks. Then, use it to decide how

to divide the tasks between friends, family,

professionals, and other volunteers.

Be proactive. Being proactive means taking

charge and planning as much as possible to

prevent last-minute emergencies. This can

also help provide a sense of control and order.

Create schedules that list which relative, friend,

or other volunteer is available when and for

what tasks. Make sure that all of the caregivers

involved have some time to be away without

feeling guilty or concerned [7]. Long-distance

caregiving takes even more planning. Find out

more about how to be an eective long-distance

caregiver [8].

Be a problem solver. To be a good problem

solver, identify problems, ﬁnd out what is

needed, and follow through. Do not be afraid

to seek advice and help from others. Look for

creative solutions that work for your and the

person you care for.

Try to stay positive. Having a positive attitude

can help set the tone for all that you do. You

may not have control of what happens to you,

but you can change how you react. To help you

cope, talk with other members of the caregiving

team. You may also wish to talk with friends,

religious or spiritual advisors, counselors [9],

and health care professionals.

Know yourself. Recognize your own strengths

and weaknesses as a caregiver. This allows

you to set boundaries and know when to ask

for help. Setting limits can help you and the

person you care for. The person you care for

can exercise some independence, while you get

a break. It is important to recognize when you

need a break so you don’t feel burned out. Read

more about how caregivers can take care of

themselves [10].

Tips for Caregiving

70 Cancer Notebook

Consider professional and volunteer services.

These services include professional home care,

home-delivered meals, and help with everyday

activities. Some community agencies have

volunteers who can help with transportation or

advocate for health insurance or other beneﬁts.

A local hospital or community social worker [11]

is a great source for referrals to programs in your

community. Learn more about dierent care

giving options [12].

Caring for the emotional well-being of the

person with cancer

It’s important to help the person you care for

maintain a sense of control. A cancer diagnosis

may make him or her feel little control over life.

A simple step would be to ask if you can help

with a speciﬁc task or decision

instead of doing it on your own.

Communicate. One of the caregiver’s most

important jobs is to communicate openly with

the person who has cancer. Choose a time that

is convenient for both of you to talk. Provide

assurance that he or she will be a central part

of all discussions and decisions. Be open to the

person’s feelings and opinions and allow enough

time to fully explain your feelings.

Accept the limitations of a person who is

seriously ill. A person who just received

chemotherapy may not be able to taste a meal

you worked hard to prepare. Or, a person on

pain medication may not notice all of the small

things you do. Also, be aware that caregiving

tasks may change as the person’s health

changes.

Include the person with cancer in activities

that provide meaning or pleasure. Even if the

person with cancer is no longer able to actively

participate in activities he or she enjoys, look

for other ways to encourage involvement. It is

important to help the person stay connected to

the world beyond the cancer and to maintain a

sense of normalcy.

Participating in medical and physical care

Gather details about the patient’s diagnosis,

treatment, and prognosis, which is the chance

of recovery. As a caregiver, learn more about

cancer, including the patient’s type of cancer

[13]. Many patient advocacy groups [14] also

can provide information related to speciﬁc

cancers. Ask the doctor about other trusted

resources. In addition, you may want to keep

a record of medical appointments, test results,

medications and dosages, symptoms and side

eects, questions, and names and numbers for

resources. Find out more about managing a

patient’s care [15].

Be an advocate. Take an active role in the

patient’s medical care. If possible, go with him or

her to all medical appointments. It is helpful to

write down questions for the doctor beforehand

and to write down answers. In addition, give the

doctor any new information that helps him or

her make informed decisions. Learn more about

communicating with the doctor [16].

Learn how to provide proper physical care.

Some patients may need you to provide physical

care such as bathing, dressing, feeding, using

the toilet, and grooming. For help, talk with

the health care team, watch health care videos,

or read manuals or books that explain how

to do these tasks. You may also want to hire

professional help for these tasks if possible.

Addressing legal and ﬁnancial issues

Ask for an insurance case manager. Many

insurance companies will assign a person to help

manage insurance concerns for a person with

a serious illness. This person can help you learn

what is covered by insurance, how to handle

insurance issues, and ﬁnd home care. Learn more

about health insurance [17].

Cancer Notebook 71

Determine ﬁnancial status. Providing care for

a person who is seriously ill can be ﬁnancially

challenging. Ask who will perform medical

services and how speciﬁc services, such as

medications or therapy, will be paid. Knowing

the ﬁnancial status of the patient can help guide

future health care choices. Some community

organizations may provide ﬁnancial assistance

for caregiving-related and treatment issues [18].

Have legal documents in place. Legal

documents called advance directives [19] are an

eective, legally binding way to communicate a

patient’s wishes. A health care proxy is a person

who can legally make health care decisions on

another person’s behalf. A health care proxy can

be designated to speak for the patient when he

or she cannot.

Early on, each patient should decide who will

be a health care proxy. He or she should also

tell professionals involved in care who their

health care proxy is. A patient may also need

documents, such as a durable power of attorney

for health care and a living will.

72 Cancer Notebook

Cancer Notebook 73

74 Cancer Notebook

Cancer Notebook 75

A cancer diagnosis is a life-changing event that

aects many aspects of your life. Nutrition is

no exception. It is normal to have new concerns

about nutrition after a cancer diagnosis.

Eating well will help keep you strong and supply

you with the nutrients your body needs. You

may, or may not, have nutrition related problems

before, during, or after your cancer treatment.

Nutrition needs and potential side eects vary

from person to person based on: (1) Diagnosis

and location of disease, (2) Previous Medical

History, and (3) Type of Cancer Treatment

(radiation, surgery, oral medications, or infusion

cancer drug therapy).

Getting adequate nutrition and hydration can

help you to:

• Support your immune system

• Obtain weight goals (should you gain, lose,

or maintain your weight?)

• Maintain muscles and strength to

improve independence and completeyour

recommended therapy

• Maintain energy levels and reduce fatigue

• Lessen side eects of treatment and

prevent treatment delays that can

becaused by side eects

• Improve recovery time and healing

Tallahassee Memorial Cancer Center has

Registered Dietitians that specialize in Oncology

Nutrition are available to help you with your

individual journey. They can help you decide

which foods would be best for you given your

current or expected issues. Request a visit with a

dietitian if you have questions or concerns.

A dietitian can help with these topics:

• Weight loss

• Weight gain

• Change in appetite

• Nausea / Vomiting

• Diarrhea

• Constipation

• Fatigue

• Trouble swallowing

• Sore mouth

• Sore throat

• Taste changes

• Hydration

• Supplements

• Food safety

• …And More

As part of your comprehensive care at

Tallahassee Memorial Cancer Center, Registered

Dietitians are available on-site to provide you

with education and support.

Ask a member of your healthcare team if you

would like to meet with an oncology dietitian.

Nutrition During My Cancer Treatment

What do I need to know?

76 Cancer Notebook

Cancer Notebook 77

When you ﬁrst learned you had cancer, you

probably thought mostly of survival. But after

awhile other questions may have started coming

up. You may be thinking “How ‘normal’ can my life

be, even if the cancer is under control?” or even

“How will cancer aect my sex life?”

Sex and sexuality are important parts of everyday

life. The dierence between sex and sexuality is

that sex is thought of as an activity—something

you do with a partner. Sexuality is more about the

way you feel and is linked to your need for caring,

closeness and touch. Feelings about sexuality

aect our zest for living, our self-image, and our

relationships with others.

Keep in mind that sexual touching between you

and your partner is always possible, no matter

what kinds of cancer treatment you have had.

This may surprise you, especially if you are feeling

down or have not had sex for awhile. But it is true.

The ability to feel pleasure from touching almost

always remains.

You may feel uneasy talking about sex with a

professional like a doctor or even with a close sex

partner. Many people feel awkward and exposed

when talking about sex. Even so, bring up the

topic of your sex life with your doctor or another

member of your health care team. You have a right

to know how your treatment will aect nutrition,

pain, and your ability to return to work. And you

have the right to know the facts about your sex

life.

Keeping Your Sex Life Going Despite Your Cancer

Treatment

Here are some points to keep in mind as you

continue your sex life during or after cancer

treatment:

• Learn as much as you can about the eects

your cancer treatment may have on sexuality.

• Keep in mind that, no matter what kind of

cancer treatment you have, you will still be

able to feel pleasure from touching.

• Try to keep an open mind about ways to feel

sexual pleasure.

• Try to have clear, two-way talks about sex

with your partner as well as your doctor.

• Boost your self-esteem. Remind yourself

about your good qualities. Eating right and

exercising can help keep your body strong

and your spirits up. Listen to inspiring music,

look at beautiful scenery, surround yourself

with armative friends, do what it takes to

be uplifted. Practice relaxation techniques

and get professional help if you think you are

depressed.

Professional Help

The ﬁrst step in ﬁnding help for a sexual problem

is to talk to your doctor. If your cancer specialist

can’t help you, ask your family doctor or other

member of your health care team. If needed, ask

for a referral to someone who specializes in sexual

problems. Call the patient navigator at 431-ICAN

(4226) to ﬁnd resources. Get the help you need,

sexual intimacy is an important part of life which

can continue very meaningfully after a cancer

diagnosis.

Suggested Readings

• Woman Cancer Sex by Anne Katz (2009)

• Man Cancer Sex by Anne Katz (2009)

• The Lovin’ Ain’t Over: The Couple’s Guide to Better Sex

after Prostate Disease by Ralph and Barbara Alterowitz

(1999)

• Intimacy After Breast Cancer: Dealing with Your Body,

Relationships and Sex by Gina M. Maisano (2010)

• Gynecological Cancer Guide: Sex, Sanity and Survival by

Margaret Heernan and Michael Quinn(2003)

• Men’s Health: Your Prostate Sex Gland and Cancer by

Anthony Saura (1998)

• Sexual Function in the Prostate Cancer Patient by John P

Mulhall (2009)

• Breast Cancer Husband: How to Help Your Wife(and

Yourself) during Diagnosis, Treatment and Beyond by

Marc Silver (2004)

• A Gay Man’s Guide to Prostate Cancer (Journal of Gay

& Lesbian Psychotherapy Monographic“Separates”) by

Gerald Perlman and Jack Drescher(2005)

Suggested Websites:

• http://www.cancer.org/docroot/MIT/MIT_7_1x_

SexualityforWomenandTheirPartners.asp

• http://www.cancer.org/docroot/MIT/MIT_7_1x_

SexualityforMenandTheirPartners.asp

• http://www.livestrong.org/we-can-help/fertility-

services/

Cancer, Sex and Sexuality

78 Cancer Notebook

Cancer Notebook 79

Quitting is important for anyone who smokes

tobacco – even people who have smoked for

many years. For people who already have cancer,

quitting may reduce the chance of getting another

cancer. Smoking has been linked to cancers of

the lung, larynx, pharynx, esophagus, kidney, oral

cavity, pancreas, bladder and cervix.

Quitting smoking is not easy, but it can be done-

many millions of Americans have stopped –and it

could be the most important thing you will ever

do for your health. Your body begins to heal itself

rapidly when you quit smoking. Levels of carbon

monoxide and nicotine decline,sense of taste and

smell improve, and breathing becomes easier, all

within 72 hours.

Quit Tips

Don’t be discouraged if your ﬁrst attempts to quit

aren’t successful. Many smokers have to try several

times before quitting permanently.

No one approach is right for everyone. Experiment

with dierent ones until you ﬁnd the one that

works for you.

• Set a quit date and stick to it. Try to choose a

time where outside stresses will be minimized.

• Add walking or other exercise to your daily

routine.

• Eat regular meals to keep your blood sugar even.

Hunger may increase the urge to smoke.

• Avoid or limit sugar, alcohol and caeine,which

can also increase the urge to smoke.

• Drink lots of water.

• When the urge to smoke comes, breathe deeply

for a few minutes.

• Put the money you would have spent on

cigarettes in a jar each day you don’t smoke, and

use that money to buy a reward for yourself.

• Enjoy being a non-smoker.

Ways to Get Help

Ask your doctor about medicine or nicotine

replacement therapy, such as a patch, gum,

lozenge, nasal spray of inhaler. Your doctor can

suggest a number of treatments that help people

quit.

now oers Quit Smoking Now (QSN) classes at

the Tallahassee Memorial Cancer Center.

The Quit Smoking Now program is a 6 week

program, designed by an ex-smoker that provides

you with support, guidance and resources to help

you quit. You can ﬁnd the dates and times of QSN

on the Cancer Center page of www.tmh.org in the

Survivorship Program and Events tab. Register by

calling 850-224-9340 or ﬁnd another class oered

in our area by calling 1-877-848-6696 or online at:

http://www.ahectobacco.com/calendar/

It addresses the many issues related to quitting

smoking, such as:

• Coping with anger, sleep problems and cravings,

which are common for those who quit smoking.

• Managing stress

• How physical activity and healthy food choices

can make quitting smoking easier.

• How to prevent relapse (taking up smoking

again)

• What to do when you have friends and family

who smoke around you

• Identifying and controlling your smoking/

tobacco “triggers”

Call the Florida Quitline @ 1-877-848-6696

or go online at ﬂoridaquitline.com. The Florida

Quitline was established to help those with

a desire to free themselves from cigarettes,

smokeless and all other forms of tobacco

successfully reach their goal and oers all of

its services free of charge in both English and

Spanish.

Call sta at NCI’s Smoking Quitline

(1-877-44U-QUIT) or instant message them

through Live Help (http://www.cancer.gov/help)

They can tell you about :

• Ways to quit smoking

• Groups that help smokers who want toquit

• NCI publications about quitting smoking

• How to take part in a study of methods tohelp

smokers quit

Go online to Smokefree.gov (http//:www/

smokefree.gov) This is a federal government web

site. It oers a guide to quitting smoking and a list

of other resources.

Quit Smoking

80 Cancer Notebook

Cancer Notebook 81

Medical music therapists at TMH use evidence-

based music interventions in the clinical setting to

enhance emotional well-being, physical abilities,

and cognitive skills of TMH patients.

Beneﬁts for Cancer Patients

Music therapy has been shown through research

to be eective at addressing both physical and

psychological factors associated with cancer

treatment. Speciﬁcally, medical music therapists

can assist patients at TMH by:

• Improving quality of life,

• Increasing relaxation and assisting with sleep

and rest,

• Enhancing mood, alleviating depression and

anxiety,

• Providing counseling and assistance with coping,

and

• Decreasing perception of pain

Research shows that addressing psychological

factors through music therapy has the potential

to aect physical symptoms associated with the

treatment of cancer.

Ways to use Music to Enhance Wellness

The following are ways in which anyone can

incorporate music into their daily life to help

enhance general well-being:

• Making music for stress relief/enjoyment

• Music-listening to assist with relaxation

• Music-assisted exercise

Medical music therapists are available to consult

with TMH patients on these techniques and other

ways to use music to improve wellness.

How to Contact a Medical Music Therapist

Medical music therapists at TMH are available

from 9:00 am to 5:00 pm, Monday through Friday,

and at other times by appointment. To contact a

medical music therapist, please call 431-7468.

Music Therapy Resources

The medical music therapy program at TMH is

the result of collaboration with the Florida State

University College of Music. Find out more about

the program at:

http://musictherapy.fsu.edu/tmh/

The American Music Therapy Association website

provides information about the music therapy

profession and how to ﬁnd a music therapist:

www.amta.org

Patient Comments

Below are patient’s comments about the medical

music therapy program at TMH:

“This was a super experience for me. Had I known

you had music therapy, I would have asked daily.

Very uplifting. The music was great. I liked each

second. Thank you so very much for sending a

music therapist my way. My spirit was lifted high…”

“It really helped take my mind o the pain in my

legs, being way from my family, and the loss of my

friend I had in my accident…”

“Music therapy really brought smiles to our faces

and also brightened our day. Thank you very much

for your services…”

“The music therapist was very inspiring, not only

in her singing and playing, but also in her words of

comfort…”

“You’re great! It was very uplifting and enjoyable…”

“The music therapist remembered my husband’s

request from a previous visit, learned the songs,

and played them at the subsequent visit- very

impressive! The sta seems to appreciate the

music, too. Creates a positive environment. Thank

you…”

Medical Music Therapy

82 Cancer Notebook

Cancer Notebook 83

Mind, Body and Spirit services are recognized,

embedded, and integrated into the overall care

of our patients and families. These include such

services as:

• Spiritual Care

• Music Therapy

• Art Therapy

• Animal Therapy

• Yoga

• Nutrition/Dietary Consultations

To access the services and resources, please call

850.431.ICAN (4226) or submit your request to

one of your healthcare providers.

Integrative Services

84 Cancer Notebook

Cancer Notebook 85

Tallahassee Memorial Cancer Center: Cancer

Wellness & Support Group for Individuals &

Caregivers

Meets the 2nd and 4th Thursday of each month at

Tallahassee Memorial Cancer Center, 5:30-7 p.m.

850-431-4226 (press 5 for a Patient Navigator)

Tobacco Free Florida – Quit Your Way – Group

Quit

Group Quit is the in-person option of Tobacco

Free Florida Quit Your Way services and is open

to the general public. Free nicotine replacement

patches, gum, and lozenges available (while

supplies last and if medically appropriate). Call

850-224-9340 for current schedule.

Ukulele Choir

Our Music Therapist will lead this group session.

No prior music experience is needed, beginners

are welcome and encouraged to attend. Ukulele’s

are provided to use during group sessions.

Meetings will occur on the 1st and 3rd Thursday

of the month, please contact 850-431-7468 for

meeting time.

Tallahassee Memorial: A Women’s Place

Prosthesis and Bra ﬁttings. Contact: 850-431-4928

FORCE

Do you have a BRCA mutation or another gene

mutation associated with increased breast and/or

ovarian cancer risk? Here’s your chance to meet

others who know what you’re going through, to

ask questions, learn or just listen in a safe and

supportive environment. You are not alone. Join

us and live your life empowered! Contact Katie

Farmer at katie.[email protected]g or 850-431-4041

Chicken Soup

A 40+ women’s support group of breast cancer

survivors and newly diagnosed women. Meets the

1st Wednesday of the month at New Bethel AME

Church in Quincy. Contact Catherine Moore before

attending @ 850-627-7818

Sisters Alive/Soul Survivors

All women’s support and educational group. Meets

the 2nd Saturday of every month at 9:00 am at

the American Cancer Society Leon Unit. Contact

Harriette Hudson, 850-656-2512

Ovarian Cancer Survivors Group

Caring and support for survivors, families, and

friends. Meets the 2nd Monday of every month

at 5:30 pm at the Tallahassee Memorial’s Cancer

Center. Contact: Kathy Neill, 850-322-5897

The Leukemia & Lymphoma Society

An agency oering support, education, advocacy,

and ﬁnancial assistance for cancer patients.

Contact: Maria Avenancio, 800-785-0733

Better Breathers

Men and women survivors of and/or living with

lung ailments. Meets the 1st Tuesday of the month

at 1:00 pm at Capital Regional Educational Room.

Contact: Patty Ballantine, 850-386-2065 ext. 1141

Lee’s Place

A grief and loss counseling center for children,

adults, groups, and families. Contact: Brenda

Robalais, 850-841-7733

Wakulla County Cancer Support Group

Meets to discuss individual concerns and life-style

guidelines for the prevention of cancer. Meets the

3rd Thursday of each month at 7:00 pm at the

Crawfordville United Methodist Church. Contact:

Marge Kinder, 850-926-6050

Caregiver Support Group

Support group for anyone caring for a loved one

with a chronic illness. Meetings are held the 2nd

Friday of every month at Broadview Assisted

Living. Contact: 850-431-5037

Multiple Myeloma Support Group

Support for patients, caregivers, family members

and friends who have been aected by multiple

myeloma. Meets the 4th Monday of every month

from 5:30 to 7:30 pm at Westminster Oaks Campus

in the Pool Clubhouse. Contact: Julia Pallentino,

850-933-7274 or arnpplaw@comcast.net

Community Cancer Support

86 Cancer Notebook

Reach to Recovery

American Cancer Society program for breast

cancer survivors.

Contact: 1-800-ACS-2345

Look Good, Feel Better

American Cancer Society program where women

undergoing cancer treatment can learn make-

up and hair techniques from a licensed, trained

cosmetologist. Lunch is provided, free of charge,

at each session. Held every other month at

Tallahassee Memorial Cancer Center.

Contact: 1-800-227-2345

I Can Cope

American Cancer Society program that oers

Educational classes online that provides reliable

information, peer support, and practical coping

skills. Available for patients, family and friends. Go

to www.cancer.org or 1-800-ACS-2345 for more

info.

Cancer Notebook 87

The following pages include a list of Web sites and

other resources that can help you in your search

for information.

Adjuvant Therapy.com: Information about

therapy choices. www.adjuvantonline.com

American Institute for Cancer Research (AICR):

The AICR fosters research on diet, physical activity,

and cancer prevention, and is a good site for

information about nutrition. http://www.aicr/.org

American Cancer Society: Cancer information

covering medical information, treatment decision

tools, news updates, and support resources. www.

cancer.org 1-800-ACS-2345

American Lung Association: http://lungusa.org

American Society of Clinical Oncology: Has

goals of improving cancer care and prevention and

ensuring that all patients with cancer receive the

highest quality care. www.asco.org

1-703-299-0150.

American Society of Plastic and Reconstructive

Surgeons: To advance quality care to plastic

surgery patients by encouraging high standards of

training, ethics, physician practice and research in

plastic surgery. www.plasticsurgery.org

Asian American Network for Cancer Awareness,

research and Training: Cancer information in

Asian languages. www.aancart.org

Breast Cancer.Net: Features articles about

treatment and support. www.breastcancer.net

CancerCare: Provides free, professional support

services to anyone aected by cancer. Services

include counseling, education, ﬁnancial assistance

and practical help. www.cancercare.org 1-800-813-

HOPE.

CancerCare Linking A.R.M.S.: Oers qualiﬁed

low-income, under-insured or uninsured people

diagnosed with breast cancer ﬁnancial assistance

grants to cover the costs of oral chemotherapy

and hormonal therapy medications, pain and anti-

nausea medication, lymphedema supplies and

medical equipment through a partnership with

Susan G. Komen for the Cure®. www.cancercare.

org 1-800-813-HOPE.

Cancer Hope Network: Matching patients and/

or family members with trained volunteers

Throughout the US who have recovered

from similar cancer experiences. www.

cancerhopenetwork.org

CancerNet: National Cancer Institute site with

treatment information, clinical trials, research

and literature. http://cancernet.nci.nih.gov/

cancertopics/types

Cancer Portfolio: Collaborative site of UK and US

researchers. www.cancerportfolio.org

Cancer Control and Research Advisory Council-

http://www.mott.usf.edu.ccrab

Cancer Information Services:

http://cis.nci.nih.gov

Cancer Survivor Network: Oshoot of American

Cancer Society speciﬁc to issues of people who

have cancer. www.ascsn.org

CaringBridge.org: provides free website to

connect people experiencing a signiﬁcant health

challenge to family and friends. www.caring

bridge.org

Celebrating Life: Site for African American

women with breast cancer.

www.celebratelife.org

Centers for Disease Control and Prevention,

Comprehensive Cancer Prevention and Control-

http://www.cdc.gov/cancer/index.htm

CenterWatch Clinical Trials Listing Service-

Provides information on clinical trials and

speciﬁc studies currently being conducted. www.

centerwatch.com

Colorectal Cancer Information Links-

http://www.cdc.gov/cancer/linksalt.htm#colorectal

ConnieCaps, Inc. Founder Linda Blakely provides

stylish, handcrafted hats free of charge to cancer

patients who have lost their hair. Visit www.

conniecaps.org, and reference referral number

TMH-7105.

Cancer Resources

88 Cancer Notebook

Corporate Angel Network: Provides air

transportation to treatment centers. www.

corpangelnetwork.org 1-866-328-1313

Cure Breast Cancer: News, treatment information,

patient stories. www.curebreastcancer.org

CURE Magazine: Free magazine for cancer

patients, survivors, and caregivers

www.curetoday.com/subscribe 800-210-CURE

Facing Our Risk of Cancer Empowered, Inc.

(FORCE): provides information for women whose

family history or genetic status puts them at

high risk of ovarian and/or breast cancer. www.

facingourrisk.org 1-866-824-7475

Fertile Hope: provides reproductive information,

support and hope to cancer patients whose

treatments present the risk of infertility. www.

fertilehope.org 1-888-994-HOPE.

Fertile Action: Speciﬁcally, we Educate, Advocate,

Support and Provide Financial Aid to women

touched by cancer. Fertile Action promises to

protect every woman’s vision of her future as a

mother. www.fertileaction.org

Florida Cancer Clinical Trials Cooperative, Inc.

(FCCTC): http://www.ﬂoridacancertrials.com

Gilda’s Club: Promises meeting places where men,

women and children living with cancer, along with

their families and friends, can join with others to

build a network of social and emotional support.

www.cancercare.org or 1-800-GILDA-4-U.

Gillette Cancer Connection: Good site for

newly diagnosed women. Information for

partners and family members as well. www.

gillettecancerconnect.org/women

Hope for Two…The Pregnant with Cancer

Network. Resource providing pregnant women

diagnosed with cancer information, support and

hope. http://hopefortwo.org

Inﬂammatory Breast Cancer Research

Foundation: dedicated to researching the causes

of Inﬂammatory Breast Cancer (IBC), an advanced

and accelerated form of breast cancer usually not

detected by mammograms or ultrasounds. www.

ibcresearch.org 1-877-786-7422

John Nick Foundation: Information on male

breast cancer. www.johnwnickfoundation.org/

malebreastcancer.html

Kids Konnected: Provides friendship,

understanding, education and support for kids and

teens who have a parent with cancer or have lost

a parent with cancer. www.kidskonnected.org or

1-800-899-2866.

Living Beyond Breast Cancer: Newsletter,

information on quality of life. www.lbbc.org/

default.html

Lots of Helping Hands: online caring

Communities that help restore health and

balance to caregivers’ lives. Our service brings

together caregivers and volunteers through

online Communities that organize daily life during

times of medical crisis or caregiver exhaustion.

Caregivers beneﬁt from the gifts of much needed

help, emotional support, and peace of mind, while

volunteers ﬁnd meaning in giving back to those in

need. http://lotsahelpinghands.com/

Mautner Project, The National Lesbian Health

Organization: provides education, support and

other services to lesbians with cancer. www.

mautnerproject.org 1-866-MAUTNER

Max Foundation: Dedicated to improving quality

of life and survival rates of patients with blood

related cancers. www.themaxfoundation.org 1-888-

462-9368

MD Anderson Cancer Center: Up to date

information and news on cancer. www.

mdanderson.org

Medline Plus: Health information from the Library

of Medicine and National Institute of Health. www.

medlineplus.gov

Memorial Sloan Kettering Medical Center: www.

mskcc.org

Mott Cancer Answers: Free cancer information

service. Staed by experienced registered nurses

who can provide information related to cancer.

1-888-MOFFITT (663-3488)

National Breast Cancer Coalition: Grassroots

organization with a mission to eradicate breast

cancer through action and advocacy. www.

stopbreastcancer.org 1-800-622-2838

National Comprehensive cancer Network:

treatment guidelines, supportive care www.nccn.

org/patients/patient_gls.asp

National Cancer Institute: Treatment information,

literature, statistics.

http://www.nci.nih.gov

Cancer Notebook 89

National Cancer Institute Cancer Fact sheets:

provides an index of all the National Cancer

Institute Cancer Fact Sheets. www.cancer.gov/

cancertopics/factsheet

National Cancer Institute’s Cancer Information

Service: provides information and resources to

patients, the public and health care providers.

www.cancer.gov 1-888-644-6226.

National Center for Complimentary and

Alternative Medicine at the National Institute

of Health: provides information on complimentary

and alternative health care. www.nccam.nih.gov

1-888-644-6226

National Lymphedema Network: www.lymphnet.

org 1-800-541-3259

National Marrow Donor Program: Helps

people who need life-saving marrow or blood

cell transplants. Oers transplant support, unit

matching, education, resources, and ﬁnancial

assistance. www.marrow.org/patient 1-888-999-

6743

National Patient Air Travel HELPLINE: provides

air transportation to treatment centers. www.

patienttravel.org 1-800-296-1217.

National Women’s Health Information Center:

http://www.4women.gov

Oncology Nursing Society: Patient and family

information. www.ons.org/patientEd

Ovarian Cancer Information Links: http://www.

cdc.gov/cancer/linksalt.htm#ovarian

Partnership for Prescription Assistance: Provides

information on how to ﬁnd pharmaceutical

manufacturer assistance programs. www.pparx.org

1-888-512-3861.

Patient Advocate Foundation: Provides legal

and advocacy help with disputing insurance claim

denials and oers co-pay relief program that

provides ﬁnancial assistance to eligible patients

who are being treated for breast cancer. www.

patientadvocate.org 1-800-532-5274.

Prostate Cancer Information Links: http://www.

cdc.gov/caner/linksalt.htm#prostate

Sisters Network, Inc.: provides outreach and

education on the impact of breast cancer

in the African American community. www.

sistersnetworkinc.org 1-713-781-0255

Skin Cancer Information Links: http://www.cdc.

gov/cancer/linksalt.htm#skin

Susan G. Komen Foundation: Promises to

save lives and end breast cancer forever by

empowering people, ensuring quality care for all

and energizing science to ﬁnd the cures. www.

komen.org 1-877-GO KOMEN (1-877-465-6636).

Tallahassee Memorial HealthCare-A Woman’s

Place: Local shop for bras/prosthesis or partial

breast prosthesis after lumpectomy. Also can be

measured for lymphedema garments.

850-431-4926.

Y-me: information and support, founded by breast

cancer patients. www.y-me.org

YWCA: Oers ENCOREplus® beast and cervical

cancer program that provides outreach, education

and screening mammograms to women who are

most in need and lack access to breast health

services. www.ywca.org 1-202-467-0801.

The information provided in this section will help

you plan and prepare for your treatment. However,

it is not meant to replace the individual attention,

advice, and treatment plan of your oncologist and

medical team.

90 Cancer Notebook

Cancer Notebook 91

Journal

________________________________________________________________________________________________

You gain strength, courage, and conﬁdence by every experience in which you really stop to look fear in

the face. You must do the thing you think that you cannot do.

Eleanor Roosevelt

92 Cancer Notebook

Journal

________________________________________________________________________________________________

I am always doing that which I cannot do, in order that I may learn how to do it.

Pablo Picasso

Cancer Notebook 93

Journal

________________________________________________________________________________________________

The world is not conclusion; a sequel stands beyond invisible as music but positive as sound.

Emily Dickinson

94 Cancer Notebook

Journal

________________________________________________________________________________________________

If you do not hope, you will ﬁnd what is beyond hope.

St. Clement Alexandria

Cancer Notebook 95

My Finances /

Insurance

96 Cancer Notebook

Cancer Notebook 97

If you have health insurance:

Always bring your health insurance card to every

doctor or medical visit.

Notify your insurance company according to their

guidelines. For most policies, you must call to

pre-certify any inpatient hospital admission. Some

require an authorization for any service costing

over a set amount, such as $500. Knowing your

policy’s guidelines and making that phone call will

save you money and hassle.

Health insurance is like house or car insurance

in that dierent policies cover dierent types of

beneﬁts. It is important to fully understand what

your policy covers.

Be aware that some health plans may not pay for

some special medical consultations. Other plans

may pay for them, but you may have a higher

co-pay than for a regular visit. If you have any

questions, call your insurance company. Try to

talk with the same person each time you call if

possible.

Do not let your health insurance policy expire. New

insurance may be dicult to obtain while you are

in treatment. Pay premiums in full and mail them

in plenty of time to arrive and be processed before

the due date. Some policies have a grace period

for late payments; however, if you require care

during the grace period, any late payments may

complicate authorizations.

Call your employee beneﬁts administrator to

request a copy of your complete insurance policy.

Ask for the entire detailed beneﬁt description,

usually called a “Summary Plan Description,” not

a brief overview or informational brochure. This

document may have a number of pages, and your

employer ill give you a copy upon request.

Put aside some time to review your health policy

line-by-line, and highlight relevant sections. Closely

read any sections on exclusions and exceptions.

Understand the dollar amount of your policy’s

“out-of-pocket maximum.” If you have questions,

ask your employee beneﬁts administrator for

clariﬁcation. Find out how to call a “claims

assistant” at your insurance company. These

people can help you with accurate information if

you have questions about coverage or a speciﬁc

claim.

If you have a hard time sorting out what has

been paid and what has been applied to your

deductible, call your insurance company’s claims

assistant and ask that a “Claims Summary” be

mailed to you. This should list dates of service,

billed amounts, how much was applied to your

deductible, and how much your insurance

company paid.

Try to establish a warm human connection when

you call to talk with a claims assistant. “Thanks so

much for your help,” will get you further than “I’m

so frustrated with this whole thing I could scream.”

“Explanation of Beneﬁts” (EOB) letters need

special attention. Never throw them away. They

include important information. An EOB may

indicate a payment, a partial payment or a claim

denial.

When you receive an “Explanation of Beneﬁts”

(EOB), carefully read every line including all foot-

notes. Also, read any printing on the back of the

EOB. Watch for language such as, “Please contact

your provider to resubmit the claim with a valid

diagnostic code. If this information is not received

within 90 days of your receipt of this request,

please consider this claim denied.” Be sure to meet

these stated guidelines on time.

“Pre-authorization” letters also need special

attention. Watch for language such as, “This

authorization does not guarantee payment.” Call

your insurance company if you have any questions.

Dealing with insurance matters can be frustrating.

Take things one step at a time. Take a break. Ask

for help if you need it.

If you phone your insurance company for any

reason, enter each telephone call into this

Insurance Tracking form.

Write down the name, title and phone number of

anyone you speak with. Note what was discussed,

mailed or promised.

This will help you remember the details of each

call.

My Finances and Insurance

98 Cancer Notebook

Setting up a system to manage paperwork:

Identify a small work area and stock it with a

stapler, yellow highlighter, pens, stamps, blank

insurance claim forms and ﬁle folders. Setting

up this space can be a good job for a friend who

wants to help.

Remember to document, document, and

document. Create a “paper trail” to keep a record

of telephone and mail contacts. The tracking forms

at the end of this section will help.

Be aware that you will receive a variety of mail,

such as insurance pre-authorization notiﬁcations,

authorizations and bills from various sources.

A strategy some people ﬁnd useful is to put a

basket by the front door for all treatment-related

envelopes. Then schedule an hour or so once a

week to sit down and open each envelope. Read

the material line-by-line and use your highlighter

to note important information. This may be a task

you can turn over to a family member or good

friend.

As insurance “Explanation of Beneﬁts” (EOB)

forms arrive, attach the EOB to its related claim

form, the original bill and any record of your own

payments.

Write the claim number and policy number on

every document. Include the procedure code if

one is given.

If you are required to ﬁll out a form and return it,

always make a copy for your ﬁle.

If the document is especially important and has a

deadline hand-carry it to the post oce and pay

for delivery tracking, such as certiﬁed mail with

the green “return receipt requested” post card or

a computer-based “Delivery Conﬁrmation” with a

tracking number.

Submit claims for all medical expenses even if you

are not sure if a particular expense is covered.

What to do if an insurance claim is denied:

If a person has health insurance and a particular

claim is denied, you can take the following steps to

resolve the problem:

In all interactions with the insurance company

about a claim, keep copies of all correspondence

and note the claim number and policy or

procedure code on all correspondence. Also

note the name of any customer service or claims

representative spoken with on the telephone.

Call the insurance company to ﬁnd out why the

claim was denied. If it is still unclear, study the

explanation of beneﬁts form. In some cases,

the denial may be the result of a claim being

improperly documented, such as a particular

service being inadvertently omitted.

Check the facts. Review the policy to make sure

that pre-certiﬁcation, authorization and other

procedures required by the insurer were followed.

For example, claims for prosthetic bras, implants

and wigs require a copy of both the prescription

and the bill.

Enlist a doctor’s help if fees, charges or procedures

are questioned. Most physicians and their sta are

experienced in working with insurance companies

and can help answer questions. Ask the physician

to write a letter to the insurance company

documenting and/or justifying the charges, and be

sure to keep a copy.

If the claim is denied because the insurance

company states that a particular treatment is

experimental or under investigation, enlist a

physician to provide assistance. If he/she can

give the insurance company evidence that the

scientiﬁc literature supports the use of a particular

therapy for a particular patient, then the procedure

cannot technically be labeled as experimental.

To accomplish this, ask the doctor to help obtain

peer review study reports and support letters from

other oncologists performing the same procedure.

National patient support organizations can also

help.

Ask for a formal review of the denied claim.

Often, claims that were denied initially are paid in

subsequent reviews. If this fails, ask for an appeal

of the review using outside oncology experts to

review the medical records and claim.

If these steps fail to yield reimbursement for a

claim that a patient and her physicians believe is

justiﬁed, a ﬁnal recourse would be to contact a

lawyer. National patient support organizations can

help identify lawyers in each state who specialize

in cancer-related insurance issues. Information

courtesy of the Susan G. Komen Breast Cancer

Foundation,www.komen.org or 1-800- I’M AWARE®

(1-800-462-9273)

Taxes

Medical costs that are not covered by insurance

policies can sometimes be deductible. Tax-

deductible expenses might include mileage for

trips to and from medical appointments; out-of-

pocket costs for treatment, prescription drugs or

Cancer Notebook 99

equipment; and the cost of meals during lengthy

medical visits away from home.

Obtain publications related to medical deductions

from the Internal Revenue Service and from the

state where you ﬁle your taxes. Find out if there

are special rules for people who are self-employed,

have a business or domestic partner, or other

special situations.

Publications are mailed free upon request and

usually arrive within two or three weeks. You can

also view them online and print them.

Internal Revenue Service publications are avail-

able by phone at 1-800-829-1040 or online at

www.irs.ustreas.gov.

If you use a tax advisor or ﬁnancial planner, consult

with that person after your diagnosis.

The “Expense Tracking” form at the end of this

section can be used to help document out-of-

pocket expenses as you go.

COBRA (Consolidated Omnibus Budget

Reconciliation Act)

If you have a group health insurance plan through

an employer with 20 or more employees, this

federal legislation may enable you to keep your

group coverage plan in the event of job loss,

reduction in work hours, transition between

jobs and certain other cases. Coverage may be

available for 18 months. Qualiﬁed individuals are

required to pay the entire premium cost that the

employer had been paying, plus a few percent.

This may be quite expensive, yet is still less costly

than obtaining individual insurance outside of a

group plan.

Rules for COBRA are complex. Ask your employer

for written information. You can obtain further

information and a fact sheet from the U.S.

Department of Labor Employee Beneﬁts Security

Administration. Call 415-975-4600 or visit www.

dol.gov/dol/topic/health-plans/cobra.htm.

Under the Paid Family Leave Act,

disability compensation may be extended to cover

individuals who take time o of work to care for

a seriously ill spouse, parent, domestic partner or

other reasons. The Paid Family Leave insurance

program, also known as the Family Temporary

Disability Insurance program, is administered by

the State Disability Insurance (SDI) program. An

estimated 13 million California workers covered by

the SDI program are also covered for Paid Family

Leave insurance beneﬁts. The rules are complex,

so check into whether you have job protection or

return rights, whether beneﬁts are taxable, and

other issues.

Disability Beneﬁts 101

(www.disabilitybeneﬁts101.org) is a knowledgeable

source if you need more help understanding your

beneﬁts.

This comprehensive website oers information

on disability beneﬁts, State Disability insurance,

health insurance, Medi-Cal, Medicare, COBRA and

a variety of additional programs administered

by state, federal and private organizations.

The organization’s purpose “is to take a broad,

customer-centered view, focusing on the linkages

among programs” and how programs interact with

each other, discussing them “under one roof, in

plain language.”

The Americans with Disabilities Act

The Americans with Disabilities Act (ADA),

enforced by the Equal Employment Opportunities

Commission (EEOC), prohibits all discrimination

related to a disability, a perceived disability, and

a history of disability. Employers must make

reasonable accommodations in the workplace

for qualiﬁed individuals with a disability. They are

required to treat all employees fairly and equally

and cannot ask employees personal questions

other than job-related medical questions. The ADA

also protects an employee whose family member

has a disability.

The Family and Medical Leave Act of 1993

The Family and Medical Leave Act (FMLA)

protects employees when they take leave because

they are ill or are caring for a spouse, child, or

parent who is ill. Through the FMLA, employees

receive:

• A total of 12 weeks unpaid leave

• Continued beneﬁts during leave

• The option to use vacation and sick leave during

medical or family leave

The FMLA has speciﬁc requirements. For example,

the employer must have more than 50 employees.

And an employer does not have to hold a position

open if an employee uses more than 12 weeks

of leave in a year. Because states and districts

operate dierently, contact your local attorney

general’s oce or an employment lawyer for more

information.

The Job Accommodation Network provides free

information about the ADA and the employability

of people with disabilities.

100 Cancer Notebook

If you begin to feel overwhelmed about ﬁnances:

Even in the best of healthy times, money is

a dicult area for many of us. In our culture,

personal money issues are not usually discussed

openly with friends or family. We may feel that we

are supposed to “make it” on our own and never

ask for help.

To need help is simply part of being human. Break

the silence. Ask for assistance. Take action in small

but steady steps.

Hospitals and physician oces usually have

employees who specialize in insurance claims,

reimbursement and public beneﬁts. They may

be called ﬁnancial counselors, case managers

or ﬁnancial assistance planners. Hospital social

workers may be able to suggest ﬁnancial options

and can oer emotional support as well.

Seek assistance from a community volunteer, an

advocacy organization, a family member or friend.

Taking Charge of Money Matters is a workshop

developed by the American Cancer Society and

the National Endowment for Financial Education.

This two hour workshop addresses money issues

that arise during or after a person’s cancer

treatment. Specially trained and experienced

facilitators lead the workshop. Guest speakers

may include insurance specialists, Social Security/

Medicare/Medicaid representatives, licensed

certiﬁed ﬁnancial planners, hospital billing

representatives, attorneys and others. To ﬁnd out

if Taking Charge of Money Matters is available in

your community or by telephone conference, call

1-800-ACS-2345. You may want to have someone

attend with you or go in your place depending on

how you are feeling.

Getting the most from a service:

What to ask-

No matter what type of help you are looking for,

the only way to ﬁnd resources to ﬁt your needs is

to ask the right questions. When you are calling

an organization for information, it is important to

think about what questions you are going to ask

before you call. Many people ﬁnd it helpful to write

out their questions in advance and take notes

during the call. Another good tip is to ask the

name of the person with whom you are speaking

in case you have follow-up questions. Below are

some questions you may want to consider when

calling or visiting a new agency to learn how they

can help you:

• How do I apply for your services?

• Are there eligibility requirements? What are

they?

• Is there an application process? How long

will it take? What information will I need

to complete the application process? Will I

need anything else to get the service?

• Do you have any other suggestions or ideas

about where I can ﬁnd help?

The most important thing to remember is that you

need to be willing to ask for help to receive

it. Asking can be the hardest part of getting help.

Cancer is a very dicult diagnosis and disease, but

there are people and services that can ease your

burdens and help you focus on your treatment and

recovery.

The information on “Getting the Most from a

Service” was adapted with permission from

CancerCare, a national nonproﬁt organization

that provides free professional support services

for people with cancer and their families. Find out

more about CancerCare by calling 1–800–813–

HOPE (4673) or visiting www.cancercare.org.

Tips for Organizing Financial Information

Approved by the Cancer.Net Editorial Board,

06/2015

After a cancer diagnosis, many people ﬁnd that

becoming well organized helps them gain a sense

of control over all the information they receive,

including ﬁnances. The following suggestions may

help as you start to track your costs and set up a

personal system of organization.

Cancer Notebook 101

Create a ﬁling system that works for you. Find

information quickly and easily by using a ﬁling

cabinet or simple desktop divider with individual

folders. This system also helps keep important

information in one place. File new information as

soon as possible, so it doesn’t get misplaced. Your

ﬁles may include:

• Notes made during doctors’ appointments

• Copies of your laboratory test results

• Your insurance information

• Contact information for your doctor’s oce,

medical center, insurance company, support

organizations, and others

• Bills

• Explanations of beneﬁts (EOB) materials

that describe what beneﬁts your health

insurance paid for each service

• Receipts for health care expenses

Use technology as an organizational tool. Some

people prefer to use a computer to keep track of

important information. Creating a spreadsheet

with columns for the appointment date, doctor’s

name, amount paid, status of the insurance claim,

and other important notes can help you quickly

see the status of payments for medical services.

It is also possible to track ﬁnancial information

related to your cancer care online or using an app.

Request a case manager. Ask your health

insurance company if you can have a case

manager. This way you can talk with the same

person each time you need to call. Keep current

copies of all insurance policies and refer to them

by name and number in any communications

about insurance coverage.

Take good notes. Maintain a written record of

all conversations you have with an insurance

company representative, including the date, name

of the person you spoke with, and what was said.

Put the newest records at the front of your ﬁle

so you have a clear and up-to-date list of these

discussions.

Keep track of all unreimbursed medical expenses.

This information may include the dates of each

service, the amount paid, and the name of the

provider. You may be able to claim these expenses

for tax purposes. (A tax professional can provide

advice on current rules and eligible expenses.)

Plan for changes in income and expenses. Try

to decide ahead of time how to adjust your

budget to deal with any loss of income because

of less time at work or expenses not covered by

insurance.

Ask for help. A trusted friend or family member

is a great resource if you need help keeping track

of your regular monthly bills. You might also want

to consider using a bill-paying service to ensure

payments are made on time.

Additional Resources for Financial Assistance

Financial Assistance Programs for Chemotherapy

Medications and Treatments

A social worker is available for consultation

during your cancer care at Tallahassee Memorial

HealthCare. Talk with your doctor and nurses

to request a referral to meet with the Oncology

Social Worker. Here are some of the ways a

social worker may be able to assist patients while

receiving cancer treatment:

1. Transportation issues

2. Financial assistance

3. Insurance issues

4. Medication assistance

5. American Cancer Society and other

community resource referrals

6. Assist with obtaining durable medical

equipment for patients use at home as

needed.

7. Arrange home healthcare services for

patients as needed.

American Cancer Society 1-800-227-2345

24 hours, seven days a week - cancer information,

support and community resources. www.cancer.

org

This respected organization oers a range of

information, resources and publications. Local

units provide practical and emotional services for

cancer patients, including transportation to and

from medical appointments, support services, and

wigs and head coverings for women in treatment.

Sta can accept calls in Spanish and distribute

most publications in Spanish.

102 Cancer Notebook

Costs Related to Clinical Trials

National Cancer Institute

https://www.cancer.gov/about-cancer/treatment/

clinical-trials

Some states require health plans to cover patient

care costs in clinical trials. For more information,

see the National Cancer Institute’s information at

the web site address listed above.

General Financial Assistance Information

Abbott Patient Assistance Foundation

Provides medical nutrition products (Glucerna,

Jevity, Ensure, Juven) to individuals who cannot

aord to purchase Abbott products.

1-800-222-6885, option 5

Brenda Mehling Cancer Fund

Provides ﬁnancial assistance for patients ages

18-40 who are going through treatment. Grants

are awarded to cover a variety of expenses. Please

email organization through www.bmcf.net

Capital Area Community Action Agency

The CACAA is a government funded ageny that

provides rent and utility assistance. Call to set up

an appointment. May only request assistance once

a year.

850-222-2043; 309 Oce Plaza Dr, Tallahassee

Catholic Charities

Rent and mortgage assistance. Must call M-F, 9am-

11am.

850-222-2180; 855 W. Carolina St, Tallahassee

www.ccnwﬂ.org

Department of Social Service This agency of

your local county sometimes has emergency funds

for rent, food, utilities, prescription drugs and

medical expenses for those who are not eligible

for other programs. Transportation services may

be oered or mileage reimbursed. Funds are often

limited. Information can be obtained by contacting

your state or local Department of Social Services.

Check your local telephone directory for their

phone number.

Financial Planning Association

Connects people with certiﬁed ﬁnancial planners,

based on speciﬁc needs of client.

1-800-322-4237 www.fpanet.org

Fundraising Some patients ﬁnd that friends,

family and community members are willing to

contribute ﬁnancially if they are aware of a dicult

situation. Contact your local library for information

about how to organize fundraising eorts.

Healthwell Foundation

Provides ﬁnancial support to patients diagnosed

with chemotherapy-induced anemia and

neutropenia, breast cancer, carcinoid tumors,

colon cancer, glioblastoma, head and neck

cancer, and non-Hodgkins lymphoma. Please

contact organization for updated list of covered

conditions.

1-800-675-8416 www.healthwellfoundation.org

Leukemia & Lymphoma Society Information

specialists provide accurate, up-to-date disease

and treatment information. Available Monday

through Friday from 9 a.m. to 6 p.m. ET. Callers

may request the services of a language interpreter.

Toll-Free: (800) 955-4572 www.lls.org

Lifeline and Link-Up Florida

Public assistance programs that provide

reductions in cost for monthly telephone bills

and telephone installation fees. Call to determine

eligibility.1-800-540-7039 www.ﬂoridaopc.gov/

Pages/Lifeline.aspx

Low Income Home Energy Assistance Program

For people with diculty paying for utilities.

850-222-2043 www.liheap.org

Lymphoma Research Foundation (LRF)

Provides support and education for lymphoma

patients and families.

1-800-235-6848 www.lymphoma.org

Medicare

Medicare is a federally-funded health insurance

program that covers most Americans over age

65 and some people with disabilities. It provides

for basic health coverage although not for all

medical expenses. Co-payments and deductibles

may be required. Basic beneﬁts are determined

by Congress and are the same across the country.

Private supplemental insurance “Medigap” policies

increase the range of coverage. Contact Medicare

for information on eligibility, explanations of

coverage and related publications.

Call 1-800-633-4227. www.medicare.gov

(Some publications are available in Spanish and

Spanish-speaking sta is available.)

Cancer Notebook 103

National Leukemia Research Association

Provides ﬁnancial assistance to leukemia patients

of all ages for x-ray therapy, chemotherapy,

leukemia drugs; and leukemia laboratory fees.

1-516-222-1944 www.childrensleukemia.org

National Transplant Assistance Fund

Provides fundraising assistance to cancer patients

in need of transplants. Also provides limited

ﬁnancial assistance.

1-800-642-8399 www.transplantfund.org

Patient Assistance Program

A subsidiary of the Patient Advocate Foundation

(see entry under “Insurance Advocacy”) providing

ﬁnancial assistance to patients who meet certain

qualiﬁcations. May help pay for prescriptions and/

or treatments. Helps patients who have insurance

including Medicare and Medi-Cal. This assistance

lets patients who have chronic, life threatening

and/or debilitating illnesses aord the out-of-

pocket costs that their insurance companies

require. Telephone counselors screen for

eligibility. Once eligibility has been deter-mined, a

comprehensive application is processed. Patients

are assigned their own call counselor who will be

available to answer questions. Once the individual

is approved for the program and depending on

the level of need, payments may be made to the

doctor, to the pharmacy or to the patient directly.

1-866-512-3861 email: pap@patientadvocate.org

Sarcoma Alliance

Hand in Hand sarcoma alliance oers ﬁnancial

assistance for second opinion consultations by

reimbursing expenses related to travel, phone bills,

costs of evaluation, and related expenses.

1-415-381-7236 www.sarcomaalliance.org

Insurance Assistance

Center for Medicare & Medicaid Advocacy, Inc.

Provides advocacy and legal assistance to help

the elderly and people with disabilities obtain

Medicare and necessary health care.

1-860-456-7790 www.medicareadvocacy.org

Adrema

Contracted through TMH. Helps TMH patients with

an active account apply for disability or Medicaid.

850-431-5220

Programs of Assistance at Hospitals

Some hospitals have programs through which

uninsured and low-income patients may qualify

for assistance with their hospital expenses. Ask to

speak with a hospital ﬁnancial counselor or social

worker about application procedures.

Social Security Administration

Takes applications for Medicare, Social Security

Insurance (SSI) and Social Security Disability

Insurance (SSDI). Apply with Social Security if

your doctor feels that your disability will last one

year or more. Applications can take three to four

months for processing.

1-800-772-1213 https://www.ssa.gov/

applyforbeneﬁts

United Way

This national organization’s information service

can refer you to an agency that may provide

ﬁnancial help for rent, food and other basic

necessities. To ﬁnd the United Way serving your

community, visit their web site (listed above) or

check the white pages of your local telephone

book. www.unitedway.org

Veteran’s Administration

Eligible veterans and their families may receive

cancer treatment at a Veteran’s Administration

Medical Center. Some publications are available in

Spanish, and Spanish-speaking sta is available in

some oces.

1-877-222-8387 www.va.gov

Patient Advocate Foundation

Provides education, legal counseling, and referrals

for cancer patients and survivors Professional case

managers and attorneys specialized in mediation,

negotiation and education will advocate on behalf

of patients. www.patientadvocate.org/help.

phpconcerning managed care, insurance, ﬁnancial

issues, job discrimination and debt crisis matters.

1-800-532-5274

Pharmaceutical Financial Assistance

Information

.Capital Area Community Action Agency

Prescription assistance. Call or stop by between

8:00am and 10:00am with ID and copy of

prescription(s).

301 Oce Plaza Dr, Tallahassee

850-222-2180

104 Cancer Notebook

Chronic Disease Fund, Inc.

Provides co-payment assistance for

pharmaceutical products for patients with private

insurance or Medicare Part D. Currently only

breast, colon, and non-small cell lung cancers and

multiple myeloma are covered. Check website for

more information.

1-877-968-7233 https://pnp.mygooddays.org/

Heathwell Foundation

Addresses needs of patients who cannot aord

co-payments, co-insurance, and out-of-pocket

medical expenses.

1-800-675-8416 www.healthwellfoundation.org

MedBank US

Provides drug discount cards that allow patients

with little or no prescription drug coverage to save

15%-40% on name-brand and generic prescription

drugs.

912-356-2898 www.medbank.org

National Organization for Rare Disorders

(NORD)

Helps uninsured and underinsured individuals

secure life-saving or life-sustaining medications

including Trisenox, Theracys, and Matulane.

Covered conditions may change. Visit website for

updates.

1-800-999-6673 www.rarediseases.org

NeedyMeds.org

Provides access and information on patient

assistance programs for virtually all brand-name

and generic medications.

www.needymeds.org 800-503-6897

Partnership for Prescription Assistance (PPA)

Matches patients to programs oering free or lo-

cost prescription medicines.

1-888-477-2669 www.pparx.org

Walmart $4 List

An extensive list of generic medications oered

for only $4 per month. https://www.walmart.com/

pharmacy Supplies and Equipment Financial

Assistance Information

The Beau Beau

“Beautiful Scarves for Beautiful Heads.” Sells

fashionable scarves for women and girls with

medical hair loss. 941-362-0850 www.4women.

com

Breast Cancer Network of Strength

Aliates throughout nation provide support

groups, early detection workshops, wigs and

prostheses for women with limited resources. Visit

website for chapter locations.

1-800-221-2141 (English); 1-800-986-9505

(Español) www.y-me.org

The Caregivers Marketplace

Oers cash back program for eligible products not

typically covered by insurance or Medicare. Apply

online for faster enrollment.

1-800-888-0889 www.caregiver.org/caregivers-

marketplace

Heavenly Hats Foundation

Provides free hats to cancer patients nationwide.

1-920-434-4151 www.heavenlyhats.org

Where There’s A Need, Inc.

Provides hair scarves for women and children who

have experienced hair loss due to chemotherapy

and radiation cancer treatment or other medical

conditions. Specializes in scarves for children,

babies, and young adults.

718-529-3638 www.wheretheresaneed.org

Cancer Notebook 105

Notes

________________________________________________________________________________________________

106 Cancer Notebook

Notes

________________________________________________________________________________________________

Cancer Notebook 107

Notes

________________________________________________________________________________________________

108 Cancer Notebook

Cancer Notebook 109

Glossary &

References

110 Cancer Notebook

Cancer Notebook 111

3-dimensional conformal radiation therapy:

A procedure that uses a computer to create a

3-dimensional picture of the tumor. This allows

doctors to give the highest possible dose of

radiation to the tumor, while sparing the normal

tissue as much as possible.

A

Abdomen: The area of the body that contains the

pancreas, stomach, intestines, liver, gallbladder,

and other organs.

Active surveillance: Closely monitoring a

patient’s condition but withholding treatment

until symptoms appear or change. Also called

observation, watchful waiting, or expectant

management.

Adenocarcinoma: Cancer that begins in cells that

line certain internal organs and that have glandular

(secretory) properties.

Adjuvant systemic therapy: Treatment given

in addition to surgery and radiation to eliminate

tumors that may have spread to other sites.

There are two types, chemotherapy and hormone

therapy.

Adrenal glands: A pair of small glands, one

located on top of each kidney. They produce

steroid hormones, adrenaline, and noradrenaline,

which help control heart rate, blood pressure, and

other important body functions.

Agonist: A drug that triggers an action from a cell

or another drug.

Alopecia: Hair loss.

Amenorrhea: The absence or suppression of the

menstrual period.

Anastomosis: A procedure to connect healthy

sections of tubular structures in the body after the

disease portion has been surgically removed.

Androgen: A type of hormone that promotes

the development and maintenance of male sex

characteristics.

Anesthesia: Loss of feeling or sensation. Local

anesthesia may be induced into a speciﬁc region

of the body, such as the breast, by injection of a

drug (a local anesthetic) into the area. General

anesthesia involves the entire body and may be

induced by drugs injected into a vein or inhaled.

Angiogenesis: Blood vessel formation, which

usually accompanies the growth of malignant

tissue.

Anti-androgen: A substance that prevents cells

from making or using androgens (hormones

that play a role in the formation of male sex

characteristics).

Anti-carcinogen: Referring to an agent that

counteracts carcinogens (cancer causing agents).

Antioxidant: Referring to an agent that

counteracts oxidizing agents. Oxidizing agents

are always present in the body and are beneﬁcial.

However, when large amounts of oxidants are

present in cells they can cause damage, especially

to DNA, which can lead to cancerous growth.

Antiemetic: A medicine to prevent nausea and

vomiting.

Anus: The opening of the rectum to the outside of

the body.

Areola: The more darkly shaded circle of skin

surrounding the nipple.

Aromatase inhibitor: A drug used to lower the

amount of estrogen in the body, so that the cancer

cells cannot grow.

Asbestos: A natural material that is made of tiny

ﬁbers. Asbestos can cause several seriousdiseases,

including cancer.

Aspirate: To remove ﬂuid and a small number of

cells.

Atypical hyperplasia: Overgrowth of mildly

abnormal but noncancerous (benign) cells within

the breast milk ducts.

Axilla: The underarm region.

Axillary lymph nodes: The lymph nodes under

the arm.

Axillary sampling (axillary dissection): removal

of some or all the lymph nodes in the armpit.

Glossary

112 Cancer Notebook

B

Benign: Not cancerous. Does not invade nearby

tissue or spread to other parts of the body.

Biochemical-free survival (also known as

PSA free survival or biochemical failure-free

survival): Length of time after treatment during

which no detectable tumor marker (prostate-

speciﬁc antigen; PSA) is found. Can be reported

for an individual patient or for a study population.

Biochemical progression (or recurrence): The

ﬁnding of an increasing amount of prostate-

speciﬁc antigen, detected by comparison to its

prior value, following initial treatment.

Biological Therapy: A therapy that targets

something speciﬁc to the biology of the cancer

cell, as opposed to chemotherapy, which attacks

all rapidly dividing cells. Often used to describe

therapies that use the immune system to ﬁght

cancer (immunotherapy). Trastuzumab (Herceptin)

is an example of a biological therapy agent.

Biomarker: A distinctive biological or biologically

derived indicator used to measure or indicate an

event, eect or progress of a disease or condition.

One example of a biomarker is prostate-speciﬁc

antigen (PSA).

Biopsy: The removal of cells or tissues for

examination by a pathologist. There are many

dierent types of biopsy procedures. The most

common types include: (1) incisional biopsy, in

which only a sample of tissue is removed; (2)

excisional biopsy, in which an entire lump or

suspicious area is removed; and (3) needle biopsy,

in which a sample of tissue or ﬂuid is removed

with a needle. When a wide needle is used, the

procedure is called a core biopsy. When a thin

needle is used, the procedure is called a ﬁne-

needle aspiration biopsy.

Bone scan: A test done to determine whether or

not there are any signs of cancer in the bones. A

small amount of radioactive material is injected

into the bloodstream. It collects in the bones,

especially abnormal areas, and it is detected by

a scanner. Collections on bone scan may result

from cancer as well as benign bone diseases like

arthritis.

Brachytherapy: A type of radiation therapy in

which radioactive material sealed in needles,

seeds, wires, or catheters is placed directly into or

near a tumor. Also called radiation brachytherapy,

internal radiation therapy, and implant radiation

therapy.

Breast conserving surgery: Surgery that removes

only part of the breast; the part containing and

closely surrounding the cancerous tumor.

C

Cachexia: Loss of appetite and weight

experienced by many cancer patients.

Calciﬁcations: Deposits of calcium in the breast

that appear on a mammogram. Microcalciﬁcations

sometime can indicate precancerous or cancerous

cell growth.

Cancer: A term for diseases in which abnormal

cells divide without control and can invade nearby

tissues.

Carcinoma In Situ: Cancer that involves only the

place in which it began and that has not spread or

invaded surrounding tissues. Carcinoma in situ is

an early stage tumor. In situ means “in place”.

Catheter: A ﬂexible tube used to deliver ﬂuids into

or withdraw ﬂuids from the body.

Centigray (cGy): One centigray describes the

amount of radiation absorbed by the tissues.

Chemoprevention: The use of natural or synthetic

substances to reduce the risk of developing

disease.

Chemoradiation: Treatment that combines

chemotherapy with radiation therapy. Also called

chemoradiotherapy.

Chemotherapy: A drug or combination of drugs

given in cycles. These drugs kill cancer cells in

various ways.

Chest wall: The muscles, bones, and joints that

make up the area of the body between the neck

and the abdomen.

Chromosome: Part of a cell that contains genetic

information. Except for sperm and eggs, all human

cells contain 46 chromosomes.

Clinical progression: The worsening of a disease

characterized by increased tissue or organ

damage, biochemical markers and/or worsening of

symptoms.

Colorectal: Having to do with the colon or rectum.

Colostomy: An opening into the colon from the

outside of the body. A colostomy provides a new

path for waste material to leave the body after

part of the colon has been removed.

Cancer Notebook 113

Comorbidity: The condition of having two or

more diseases at the same time.

Complimentary and Alternative Medical

Therapies (CAM): Forms of treatment that are

used in addition to standard treatments. These

practices are not considered standard medical

approaches.

Concurrent therapy: A treatment given at the

same time as another.

Conformal radiotherapy: Radiation therapy

shaped to increase precision of the radiation

beam.

Contralateral: Having to do with the opposite side

of the body.

Contrast material: A dye or other substance that

helps to show abnormal areas inside the body. It

is given by injection into a vein, by enema, or by

mouth. Contrast material may be used with x-rays,

CT scans, MRI, or other imaging tests.

Craniotomy: An operation in which an opening is

made in the skull.

Creatinine: A compound that is excreted from the

body in urine. Creatinine levels are measured to

monitor kidney function.

CT scan: A series of pictures created by a

computer linked to an X-ray machine. The scan

provides detailed internal images of the body.

Also called computerized tomography and

computerized axial tomography (CAT) scan.

Cyst: A ﬂuid-ﬁlled sac.

Cytoxic: Toxic, or deadly, to cells (cell killing).

Often used synonymously with chemotherapy.

D

Diagnosis: Identiﬁcation of a disease from its signs

and symptoms.

Diagnostic Radiologist: A physician who

specializes in the study and application of imaging

technology, such as ultrasound or CT, to diagnosis

and treat disease.

Dialysis: The process of cleansing the blood when

the kidneys are not able to ﬁlter the blood.

Diaphragm: The thin muscle below the lungs and

heart that separates the chest from the abdomen.

Digital Rectal Examination: DRE. An examination

in which a doctor inserts a lubricated, gloved

ﬁnger into the rectum to feel for abnormalities.

Distant metastasis: The spread of cancer from the

initial or primary site of disease to another part of

the body.

Dosimetrist: A person who determines the proper

radiation does or treatment

Duct: A pathway in the breast through which milk

passes from the lobules to the nipple.

E

Erectile Dysfunction (ED): Erections insucient

for penetration or intercourse.

Estrogen: A female hormone produced by the

ovaries and adrenal glands. It is important to

reproduction and may stimulate some cancers to

grow.

Evidence-based: Term used to describe medical

tests, procedures, and treatments that are based

on sound medical scientiﬁc research studies.

External radiation therapy: A type of radiation

therapy that uses a machine to aim high-energy

rays at the cancer from outside of the body. Also

called external beam radiation therapy.

F

Fat necrosis: A noncancerous tissue change in

which the tissue responds to trauma with a ﬁrm,

irregular mass, often years after the event. The

mass is the result of fatty tissue dying, following

either surgery or blunt trauma.

Flow cytometry: Is a technique for counting and

examining microscopic particles suspended in a

stream of ﬂuid.

Frozen section: Process where a portion of tissue

from a surgical biopsy is frozen so that a thin

slice can be quickly cut and analyzed to see if it is

cancerous or not. Frozen section results are only

preliminary and always need to be conﬁrmed by

other methods.

G

Genes: The part of a person’s cells that contains

all the DNA information that determines how they

grow and develop, and how their body works. The

information in a person’s genes is inherited from

previous generations on both sides of a person’s

family.

114 Cancer Notebook

Gene mutation: A “mistake” or “alteration” of the

information contained in a gene.

Gleason score: A system of grading prostate

cancer tissue based on how it looks under a

microscope. Gleason scores range from 2 to 10 and

indicate how likely it is that a tumor will spread.

A low Gleason score means the cancer tissue is

similar to normal prostate tissue and the tumor is

less likely to spread; a high Gleason score means

the cancer tissue is very dierent from normal and

the tumor is more likely to spread.

Grade: The grade of a tumor depends on how

abnormal the cancer cells look under a microscope

and how quickly the tumor is likely to grow and

spread. Grading systems are dierent for each

type of cancer.

H

Hematuria: Blood in the urine.

HER2/neu (erbB2): Protein that appears in high

numbers on the outside of the breast cancer

cells of about 20 to 25 percent of breast cancer

patients. Tumors with high levels of HER2/neu are

eective targets for the biological therapy drug,

trastuzumab (Herceptin).

Hormone therapy: Treatment that adds, blocks,

or removes hormones. For certain conditions

(such as diabetes or menopause), hormones

are given to adjust low hormone levels. To slow

or stop the growth of certain cancers (such as

prostate or breast cancer), synthetic hormones

or other drugs may be given to block the body’s

natural hormones. Sometimes surgery is needed to

remove the gland that makes a certain hormone.

Also called hormonal therapy, hormone treatment,

or endocrine therapy.

Hormones: Chemicals produced by various glands

in the body, which produce speciﬁc eects on

speciﬁc target organs and tissues.

Hormone receptors: A cell protein that binds

a speciﬁc hormone. A high number of hormone

receptors often indicate that a cancer cell needs

the hormone to grow.

Hormone receptor test: A test used to measure

the amount of certain proteins, called hormone

receptors, in cancer tissue. A hormone-receptor

positive cancer needs hormones to grow. A

hormone-receptor negative cancer does not need

hormones to grow.

Hormone Replacement Therapy (HRT):

Postmenopausal hormones used to relieve

menopausal symptoms.

I

Immune system: The complex group of organs

and cells that defends the body against infections

and other diseases.

Incision: A cut made in the body to perform

surgery.

Incontinence: Inability to control the ﬂow of

urine from the bladder (urinary incontinence)

or the escape of stool from the rectum (fecal

incontinence).

Indemnity policy: Prepayment insurance plan

providing services or cash indemnities for medical

care needed in times of illness or disability.

Induction therapy (First line therapy), Primary

therapy or Neoadjuvant therapy): Initial

treatment used to reduce a cancer. Induction

therapy is followed by other treatments such as

radiation therapy, chemotherapy, or surgery to get

rid of cancer that remains.

Inﬂammation: Redness, swelling, pain, and/or

a feeling of heat in an area of the body. This is a

protective reaction to injury, disease, or irritation of

the tissues.

Informed consent (risks and beneﬁts): The

process through which a patient learns about

the possible beneﬁts and side eects of a

recommended treatment plan and then accepts or

declines the treatment. The patient is usually asked

to sign a consent document, and may decide to

stop the treatment at any time and receive other

available medical care.

Intensity-Modulated Radiation Therapy (IMRT):

A type of 3-dimensional radiation therapy that

uses computer-generated images to show the size

and shape of the tumor. Thin beams of radiation

of dierent intensities are aimed at the tumor

from many angles. This type of radiation therapy

reduces the damage to healthy tissue near the

tumor.

Intraductal: Within the milk duct. Intraductal can

describe a benign or malignant process.

Intravenous (IV): Being within or entering the

body by way of the veins.

Cancer Notebook 115

Intravenous Pyelogram (IVP): A series of x-rays

of the kidneys, ureters, and bladder. The x-rays

are taken after a dye is injected into a blood

vessel. The dye is concentrated in the urine, which

outlines the kidneys, ureters, and bladder on the

x-rays.

L

Laparoscope: A thin, tube-like instrument used to

look at tissues and organs inside the abdomen. A

laparoscope has a light and a lens for viewing and

may have a tool to remove tissue.

Laparoscopic prostatectomy: Surgery to

remove all or part of the prostate with the aid of

a laparoscope. A laparoscope is a thin, tube-like

instrument with a light and a lens for viewing. It

may also have a tool to remove tissue.

Lesions: Area of abnormal tissue.

Libido: Sexual desire; sexual drive.

Life expectancy: Measure of time, usually in

years or months, to deﬁne the average survival of

groups of people.

Linear accelerator: The device used during

radiation therapy to direct X-rays into the body.

Lobectomy: Surgery to remove a whole lobe

(section) of an organ (such as brain, liver, lung,

thyroid).

Local treatment: Treatment that focuses on

getting rid of the cancer from a limited (local)

area.

Lump: A piece or mass of indeﬁnite size or shape.

Lumpectomy: See breast conserving Surgery.

Luteinizing hormone-releasing hormone

agonist: LH-RH agonist. A drug that inhibits the

secretion of sex hormones. In men, LH-RH agonist

causes testosterone levels to fall. In women, LH-RH

agonist causes the levels of estrogen and other

sex hormones to fall.

Lymphadenectomy: Surgical removal of the

lymph nodes that drain the organ to be removed..

Lymphatic system: The network of lymph nodes

and vessels throughout the body.

Lymphedema: A condition in which extra lymph

ﬂuid builds up in tissue and causes swelling. It

may occur in the arm or leg if lymph vessels are

blocked, damaged, or removed during surgery.

Lymph nodes (Lymph glands): Small clumps of

immune cells that act as ﬁlters for the lymphatic

system. Clusters of lymph are found in the

underarms, groin, neck, chest and abdomen.

Lymph node status: Indicator of whether or not

cancer has spread to the lymph nodes. Lymph

node-positive means that cancer has spread to the

lymph nodes. Lymph node-negative means that

cancer has NOT spread to the lymph nodes. See

Lymph nodes.

M

Magnetic Resonance Imaging (MRI): An imaging

technique that uses a magnet linked to a computer

to create detailed pictures of parts of the body

like the liver, brain, lung, chest or any other organ

suspected of having cancer.

Malignant: Cancerous.

Mammogram: An X-ray or picture of the breast

either on ﬁlm (standard) or stored directly onto a

computer (digital).

Margins: The area of normal tissue surrounding

the cancerous tumor after it has been removed

during surgery. A margin is clear (also known as

uninvolved or negative) if there is only normal

tissue (and no cancer cells) at the edges of the

tissues removed. Clean margins indicate that the

entire tumor was removed. With involved (also

known as positive) margins, normal tissue does

not completely surround the tumor, and therefore

the entire tumor was not removed.

Mastectomy: Surgical removal of the breast. The

procedure depends on the patient’s diagnosis.

See Total Mastectomy and Modiﬁed Radical

Mastectomy.

Medical Oncologist: A physician specializing in

the treatment of cancer using chemotherapy and

hormonal therapy.

Metastasis: Refers to cancer that has spread from

the original (primary) tumor to distant organs or

distant lymph nodes.

Metastasis-free survival: The percentage of

subjects in a study who have survived without

cancer spread for a deﬁned period of time. Usually

reported as time since diagnosis or treatment.

Can be reported for an individual or a study

population.

116 Cancer Notebook

Microcalciﬁcations: Small, clustered deposits

of calcium in the breast, which may be seen

on mammogram. These may or may not be

associated with the breast lump. Approximately 20

to 25 percent breast cancer.

Modiﬁed radical mastectomy: Surgical removal

of the breast, the lining of the chest muscles and

some of the lymph nodes in the armpit. Used to

treat early and locally advanced breast cancer.

Monoclonal antibodies: Immune proteins that

can locate and bind to cancer cells wherever they

are in the body. They can be used alone, or they

can be used to deliver drugs, toxins or radioactive

material directly to tumor cells.

Multimodality therapy: Use of two or more

treatment methods (i.e., surgery, radiation therapy,

chemotherapy) in combination or sequentially to

achieve optimal results.

N

Needle localization: Insertion of a very thin

wire into an abnormal area of the breast, used

to highlight the location of a nonpalpable lesion

so that it can be removed during open biopsy or

breast conserving surgery.

Neoadjuvant therapy: See Induction therapy.

Neoplasia: Abnormal growth.

Neoadjuvant Hormonal Therapy (NHT):

Hormonal therapy administered prior to deﬁnitive

therapy.

Neoplasm: Excessive number of cells in a mass

that can be either benign or malignant.

Nephrectomy: Surgery to remove a kidney or

part of a kidney. In a partial nephrectomy, part

of one kidney or a tumor is removed, but not an

entire kidney. In a simple nephrectomy, one kidney

is removed. In a radical nephrectomy, an entire

kidney, nearby adrenal gland and lymph nodes,

and other surrounding tissue are removed. In a

bilateral nephrectomy, both kidneys are removed.

Nerve-sparing radical prostatectomy: Complete

removal of the prostate performed with the

intent to preserve the set of nerves to the penis

that aect the man’s ability to have an erection

and that is in close proximity to the prostate

gland. Some tumors can be removed using a

nerve sparing technique. Nerve-sparing surgery

sometimes preserves the man’s ability to have an

erection after radical prostatectomy.

O

Oncology nurse: A nurse who specializes in caring

for people who have cancer.

Oopherectomy: Surgical removal of the ovaries.

Orchiectomy: Surgery to remove one or both

testicles. Also called orchidectomy.

Organ: A part of the body that performs a speciﬁc

function. For example, the heart is an organ.

P

Palliative therapy (Palliation): A treatment given

to relieve symptoms (like pain) without curing the

disease.

Partial mastectomy (Breast Conserving

Therapy, Lumpectomy, Wide Excision, or

Excisional Biopsy): Surgery that removes only

the part of the breast containing and closely

surrounding the cancer tumor.

Pathologist: A doctor who identiﬁes diseases by

studying cells and tissues under a microscope.

Pleural eusion: An abnormal collection of ﬂuid

between the thin layers of tissue (pleura) lining the

lung and the wall of the chest cavity.

Pneumonectomy: Surgery to remove the entire

lung.

Positive surgical margin: The term used by the

pathologist to describe the ﬁnding of cancer

cells at the cut edge of the radical prostatectomy

specimen. A ﬁnding of a positive surgical margin

may place a patient at increased risk for cancer

recurrence.

Predictive factors: Factors, such as hormone

receptor status, which help predict the kind of

treatment that will be most eective for a speciﬁc

cancer case.

Predispose: To make more susceptible to a

disease.

Prevention: The elimination of causes of disease

from the population, so that risk of disease is

either eliminated (as in the case of many infectious

diseases today), or postponed until later in life

(with heart disease and various cancers).

Primary therapy: See Induction therapy.

Primary tumor: The original site of the cancer.

Prognosis: The expected or probable outcome or

course of a disease; the chance of recovery.

Cancer Notebook 117

Progesterone: A hormone that helps prepare your

body for conception and pregnancy and regulates

the monthly menstrual cycle. Also plays a role in

sexual desire.

Progression-free survival: The duration that a

patient is alive without any objective evidence of

disease progression.

Progression (local and/or metastatic): A change

in the status indicating continuing growth or

regrowth of the cancer.

Prophylactic mastectomy: Preventative surgery

where one breast or both breasts are removed

in order to keep cancer from developing. When

both breasts are removed, the procedure is called

bilateral prophylactic mastectomy.

Prostate-Speciﬁc Antigen (PSA): A substance

produced by the prostate that may be found in an

increased amount in the blood of men who have

prostate cancer, benign prostatic hyperplasia, or

infection or inﬂammation of the prostate.

Prostate-Speciﬁc Antigen (PSA) failure: The

state in which the serum level of PSA does not

respond appropriately to therapy; this could

be failure to drop or to stabilize or could be a

continuous rising level.

Prosthetic, breast: An artiﬁcial breast form that

can be worn under clothing after a mastectomy.

Protocol: An outline or plan for use of an

experimental drug, treatment or procedure in

cancer therapy or diagnosis.

Q

Quadrantectomy: Surgery where one quadrant

or 25% of the breast is removed. See Breast

conserving therapy.

R

Radiation Oncologist: A physician specializing in

the treatment of cancer using high energy X-rays.

Radiation Therapy (Radiotherapy): Treatment

given by a radiation oncologist using radiation to

kill or damage cancer cells in the area exposed.

Radiation may come from a machine outside the

body (external beam radiation therapy), or it may

come from radioactive material placed in the

body near cancer cells (internal radiation therapy).

Systemic radiation therapy uses a radioactive

substance, such as a radiolabeled monoclonal

antibody, that travels in the blood to tissues

throughout the body. Also called radiotherapy and

irradiation.

Radical nephrectomy: Surgery to remove

the entire kidney, the adrenal gland, and other

surrounding tissue. Sometimes nearby lymph

nodes are also removed.

Radical prostatectomy: Radical prostatectomy

is the complete surgical removal of the entire

prostate gland that may be performed through an

open incision or through a laparoscopic approach.

Radiotherapy: See Radiation Therapy.

Reconstruction: A way to recreate the breast’s

shape after a natural breast has been removed.

Various procedures are available, some of which

involve the use of implants. May also be referred to

as reconstruction mammoplasty.

Rectum: The last several inches of the large

intestine. The rectum ends at the anus.

Recurrence: Return of cancer. Local recurrence is

the return of cancer to the same breast or chest

wall. Distant recurrence is the return of cancer to

another location such as the lungs or liver. See

Metastasis.

Registered Dietitian: A health professional with

special training in the use of diet and nutrition to

keep the body healthy. A registered dietitian may

help the medical team improve the nutritional

health of a patient.

Regression: The shrinking of a tumor.

Remission: A temporary or permanent

disappearance of the signs and symptoms of

cancer.

Risk (of disease): Probability of disease

developing in an individual during a speciﬁc time

period.

Risk-beneﬁt ratio: The relationship between the

possible (or expected) side eects and beneﬁts of

a recommended treatment or procedure.

Risk factor: Any factor-from a lifestyle choice

(such as diet) to genetic make-up to an

environmental exposure (such as radiation)-that

increases a person’s risk of developing a certain

disease.

S

Screening: A test or procedure used to detect

cancer or a precancerous condition in an

apparently healthy person without symptoms. The

goal of screening is to identify a disease in its early

stages to improve the likelihood of cure and/or

prevention of complications from the disease.

118 Cancer Notebook

Secondary primary tumor: A second cancer

that arises in a dierent location from the ﬁrst.

Dierent from a local recurrence, which is the

return of the ﬁrst cancer.

Second-line therapy: Can include deﬁnitive and

palliative treatments. Includes any treatment that

is oered following evidence of disease recurrence

or progression after initial treatment.

Side eect: A problem that occurs when

treatment aects healthy tissues or organs. Some

common side eects of cancer treatment are

fatigue, pain, nausea, vomiting, decreased blood

cell counts, hair loss, and mouth sores.

Simulator (for Radiation Therapy): A clinical

X-ray unit used to deﬁne the exact treatment area

for radiation therapy.

Sonogram: A computer picture of areas inside

the body created by bouncing high-energy sound

waves (ultrasound) o internal tissues or organs.

Also called an ultrasound.

Staging: Performing exams and tests to learn the

extent of the cancer within the body-its stage.

Knowing a cancer’s stage helps to determine what

treatment may be necessary and how eective

this treatment may be in getting rid of the disease

and prolonging life.

Standard treatment: the usual treatment currently

in widespread use and considered to be of proven

eectiveness on the basis of previous experience.

Stem cell transplantation: A method of replacing

immature blood-forming cells that were destroyed

by cancer treatment. The stem cells are given

to the person after treatment to help the bone

marrow recover and continue producing healthy

blood cells.

Stem cells: Cells from which other types of cells

can develop.

Supportive care: Care given to improve the

quality of life of patients who have a serious or

life-threatening disease. The goal of supportive

care is to prevent or treat as early as possible the

symptoms of the disease, side eects caused by

treatment of the disease, and psychological, social,

and spiritual problems related to the disease or its

treatment. Also called palliative care, comfort care,

and symptom management.

Surgeon: A doctor specially trained to remove

or repair a part of the body by operating on the

patient.

Surgery: A procedure to remove or repair a part of

the body or to ﬁnd out whether disease is present.

An operation.

Symptom management: Care that prevents

or relieves the symptoms of disease or the side

eects of treatment. Symptom management does

not attempt to cure a disease but can improve a

patient’s quality of life. It attempts to meet the

physical, emotional, spiritual, and practical needs

of patients by helping to relieve pain, depression,

or other problems. Also known as palliative care,

comfort care, and supportive care.

Systemic treatment: Treatment of the whole

body with substances that travel through the

bloodstream and aect cancer cells all over the

body.

T

Targeted therapy: Treatment that works by going

to the genes and proteins in cancer cells to stop

their growth and spread.

Testosterone: A hormone that promotes the

development and maintenance of male sex

characteristics.

Thoracoscope: A thin tube-like instrument used

to examine the inside of the chest. A thoracoscope

has a light and a lens for viewing and may have

tool to remove tissue.

Thoracotomy: A surgical procedure used to open

the chest.

Total androgen blockade: Therapy used to

eliminate male sex hormones (androgens) in the

body. This may be done with surgery, hormonal

therapy, or a combination.

Total mastectomy (Simple mastectomy):

Surgical removal of the breast but no other

tissue or nodes. Used for the treatment of ductal

carcinoma in situ and, in some instances, recurrent

breast cancer. Also the procedure used in

prophylactic mastectomy.

Transfusion: The infusion of components of blood

or whole blood into the bloodstream. The blood

may be donated from another person, or it may

have been taken from the person earlier and

stored until needed.

Transplantation: The replacement of tissue with

tissue from the person’s own body or from another

person.

Cancer Notebook 119

Transrectal ultrasound (TRUS): TRUS. A

procedure in which a probe that sends out high-

energy sound waves is inserted into the rectum.

The sound waves are bounced o internal tissues

or organs and make echoes. The echoes form a

picture of body tissue called a sonogram. TRUS is

used to look for abnormalities in the rectum and

nearby structures, including the prostate. Also

called endorectal ultrasound and ERUS.

Tumor: An abnormal growth or mass of tissue

that may be benign (noncancerous) or malignant

(cancerous).

Tumor grade: Describes how closely a cancer

resembles normal tissue. The higher the grade, the

less it resembles normal tissue, and the faster the

cancer’s rate of growth is likely to be.

U

Urologist: A doctor who specializes in diseases of

the urinary organs in females and the urinary and

sex organs in males.

V

Vaccine: A substance or group of substances

meant to cause the immune system to respond to

a tumor or to microorganisms, such as bacteria

or viruses. A vaccine can help the body recognize

and destroy cancer cells or microorganisms.

W

Watchful waiting: Closely monitoring a

patient’s condition but withholding treatment

until symptoms appear or change. Also called

observation.

Wedge resection: A surgical procedure to remove

a triangle-shaped slice of tissue. It may be used

to remove a tumor and a small amount of normal

tissue around it.

X

X-ray: Radiation that can be useful, at low levels,

in the diagnosis of cancer and, at high levels, in its

treatment.

120 Cancer Notebook

Cancer Notebook 121

122 Cancer Notebook

Cancer Notebook 123