Read an Excerpt
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. a 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 a 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 a 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. a hope that that they and others will be able to use the information here to receive the care they deserve.
Multiple reasons exist for receiving less than perfect care. Misunderstandings about cancer abound. Volunteer advice from the general public often encourages decisions that rely on mythology about cancer. Some providers deliberately exploit confusion about the nature of standard versus alternative therapy. Some patients don’t even attempt to receive care fearing that exorbitant costs will bankrupt their survivors. Still others abandon care because of a combination of depression and poor understanding about the benefits of treatment. Horrible legends about the feared shortand long-term side effects of radiation therapy and chemotherapy have paralyzed others who are unable to commit to a decision. Simple medications useful to treat common side effects aren’t used when they need to be. Information about new innovations is provided piecemeal to the general public, giving all of us a confusing picture about where the art and possibilities of oncology now stand.
