Surviving the Cancer System: An Empowering Guide to Taking Control of Your Care

Front Cover
AMACOM, 2009 - Health & Fitness - 274 pages

According to the National Cancer Institute, approximately 8.4 million Americans alive today have suffered from or currently suffer from cancer. Newly diagnosed patients and their loved ones are in for a long battle--not only against the disease but against a healthcare system that can be impersonal and frighteningly complicated to navigate. How can patients ensure they get the care they so desperately need? Informed patients are the best advocates for their own health--and inSurviving the Cancer System, renowned oncologist Mark Fesen arms readers with the in-depth information they need to take control of their own care. With his candid advice, patients will learn to:

*choose the right team of doctors and ask the right questions

* understand cancer as both a disease and a business

* develop greater understanding of a cancer diagnosis and what the prognosis might be

* evaluate treatment options

* establish proper communication with their oncologists

* prepare mentally and physically to fight the illness

* get the most from their insurance coverage--and what to do if they have none

At last, those coping with cancer can cut through the red tape and take charge of their own treatment--and their own health.

 

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Contents

Youre Fighting More Than an Illness
1
Dont Pay the High Price of Panic
8
How Your Oncologist Measures Up
16
Bonding with Your Oncology Team
29
Its Not Just One Disease
39
What Every Patient Should Know
48
Making the System Work for You
70
Innovations Promises and Pitfalls
88
How to Better Tolerate Treatment
145
How I Might Do It
156
Frequently Overlooked Problems
196
Why Its Not Always the Answer
212
How You Can Make a Difference for Cancer Patients
224
50 Questions and Answers What My Patients Ask
243
Resources
254
Index
265

Friend or Foe?
105
Tested Ways to Improve Survival Chances
119
When to Say Yes to Travel Work Exercise and Sex
134
About the Author
274
Copyright

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About the author (2009)

Chapter 1

Surviving the System: You''re Fighting More Than an Illness

Her name is Kelly and, in 1995, she was diagnosed with stage IV

lung cancer. What?, you ask. Shouldn''t an advanced lung-cancer

patient be dead by now?

Apparently not, because as I write this, she planning a trip to France.

I use her as an example, not just because she is one of the people many

would label "lucky," but because of the type of patient she is--the type of

patient I hope you would be if you were in her place.

When Kelly was diagnosed, she quit smoking. She established positive

relationships with her doctors, and she got the most mileage she could out

of the available therapy. As drugs and treatments changed, she moved to

different therapies. In short, she gave herself the chance to be lucky.

She could have sat in a bar and smoked herself to death. But she--

and you--will never find out if you are one of the patients with a long-term

chance unless you try. If you sit at the bar and smoke and die, you won''t

be alive in six months when a new and promising drug comes out.

In this book, you will learn that the type of care you receive has little

to do with the type of cancer you have and much to do with the type of

patient you are. That doesn''t mean that you have to be rich or brilliant or

contribute large amounts of money to the local clinic. You just have to be

prepared, have to have a cooperative attitude, and not look like a lawsuit

waiting to happen.

If the doctor is concerned that you or your family members are confrontational

or litigious, he may say, "Here are your treatment choices,"

without taking the risk of influencing you one way or the other.

You, on the other hand, should want to develop a relationship with

your doctor that makes her feel comfortable in the role of guide. This book

will show you how to accomplish that goal. It is intended as your road map

to some new and sometimes frightening territory.

The vast majority of patients think that cancer is one disease that can

just flow over your body and take your life. Not so. When lung cancer

spreads to your brain, it''s not a brain tumor; it''s still lung cancer.

Once you have cancer, you become part of a system. Think of it as

a musical production in which you are at the mercy of an orchestra of

highly skilled performers who must work singularly but in harmony

while led by the oncologist conductor. You might prefer to think of it as

an athletic event, a basketball game, maybe, with your oncologist as

coach. Regardless of the comparison you prefer, you are now part of a

system. This system can work for you or against you. There may be harmony

or discord. The right conductor-coach-oncologist can determine

that, and so can you. This book will help you become receptive to the

advice of your conductor/coach, as well as help you choose the right one

for you.

Many encyclopedic books on the market explain cancer in great detail.

Although we will look at the basics here, this book is your guide to surviving

the cancer-care system. If you''re tired of bouncing from one doctor

and one opinion to another, if you''re totally confused and unsure as to

where you should turn, you will find answers here. They may not be always

pretty or politically correct, but they are as honest as if you were sitting

here in front of me asking your questions in person. I hope that''s how

you''ll feel as you read this book.

I want to show you how the system works and where you fit into the

great play or ballgame that is cancer. We''ll discuss creative ways to get insurance

once you have cancer and weigh the differences between staying

in your own town or traveling to a major cancer center. We''ll also look at

the Medicare D plans, explore the hospice system, and define what''s really

meant when doctors or family members bring up "quality of life" issues.

I''ll also share with you my Fesen Will-to-Live Scale and offer advice

that has helped many of my patients navigate the cancer system.

You have to climb a lot of mountains to see the view. I''m in the unusual

position of seeing between 30 and 50 patients with different types of

cancer five days a week. I''ve been doing this for fifteen years.

In addition to my number of years as a practitioner and the number of

patients I''ve seen, this book is based on my experience. Just as important,

maybe even more important, it''s based on my level of training. That training

enables me to work hands on with not just breast cancer patients or

lung cancer patients, but patients with hundreds of different types of cancer.

It''s just me, not me and a fellow, not me and a committee.

Years of experience have shown that cancer care is often poorly organized

and frequently chaotic. Insured or not, rich or poor, the current

system focuses on care for which a provider can be reimbursed or for

which a researcher can add a number to a study. Many patients aren''t receiving

the coordinated comprehensive care they deserve. Care received

after a study is completed or a procedure is finished is often limited at

best.

Innumerable calls from friends, friends of friends, relatives, and distant

acquaintances have shown me that people are looking for direction.

People are looking for someone to give them truthful information. Even

if the news is bad, they want honesty. What is this disease that I have and

where should I turn? Whom do I trust? If a famous actor had the same pancreatic

cancer and he only took the herbal treatment, should I do so also? If

a research fellow at a major cancer center told me that there is nothing more

that can be done, should I give up?

A young man in his forties, a friend of my brother''s from a Chicago

suburb with several small children, called desperate to understand his very

deadly small cell lung cancer. Despite several months of oncology care,

he still had not internalized a good understanding of his situation. My goal

is to direct him to good local care, but the least that I want to do is give

him something that he is searching for--the gift of an understanding of

where he stands now. Honesty. Am I curable? Will I die of this soon?

A family friend in New Jersey has prostate cancer. He''s in his seventies

and has been to both his local urologist and to the "expert" at the major

cancer center. After he leaves the appointment at the center, he''s just

as confused as he was when he was diagnosed. Am I treatable? How long

will I live? Who will help me? What doctor do I see who will care for me during

this illness? These are the people for whom this book is intended. I

hope that that they and others will

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