My wife was diagnosed with metastatic melanoma more than a year ago and after being dissatisfied in very short order with the treatment and atitudes she received arranged to see Craig Nichols (one of LA's docs) which is probably why she is alive today. His advice regarding exercise was to do whatever she could do and that is was beneficial.
His approach was very aggressive about excision of anything possible by surgery along with IL-2/Interferon treatment. It made much more sense that what she had been hearing elsewhere. Advanced melanoma has always been a death sentence and it seemed like of lot of doctors had the feeling that nothing they did made any difference so you might as well not make yourself sick with the treatment and just cross your fingers that the fates or genes made you one of the lucky ones. Despite having a lot of immune response and infiltration of the tumors I doubt she would be alive if she had followed that route.
There is a book called Survive Your Cancer by Barbara Brandon which is very good. Here is the advice about managing doctors and your treatment:
Channeling Your Fears into Action
1. TALK ABOUT YOUR CANCER.
Speak with your doctors, nurses, friends, and family. The more you talk about your illness, the more comfortable you become telling others and the easier it is for you to give your family what they want at this time--your openness. Talk to other patients about their experiences. If you don't know any cancer patients or survivors, look into joining a support group. Support groups provide a broad range of information and offer forums in which you can share your experience with other cancer patients, hear first-hand survivor stories, and learn more about your illness and possible treatments.
2. GET ON THE INTERNET or get to a library
Educate yourself about your particular cancer. It's been said that education is an integral part of the treatment process. Find out about new cancer treatments and acquire the information you need to become well-informed. On-line resources offer knowledge that is yours for the taking. It's all there for you in such reliable sources as the National Institutes of Health (NIH), the National Cancer Institute (NCI), Cancer Information Services (CIS), WebMD, and more, all listed in Appendix A, with their websites, to give you easy access with a click of your mouse. If you're more comfortable with print media, make the library your learning center, and avail yourself of the resources they offer. A word of caution though, with all that's out there, you must be sure to verify the information with a qualified specialist because some resources may provide inaccurate or out of date information.
3. FIND THE TOP TREATMENT FACILITIES.
Where you're treated, as much as how you're treated, has a great bearing on your recovery. The leading cancer treatment centers are located in major cities. For a cancer center to be a center of excellence, it must be able to provide comprehensive cancer treatments using all of the modalities, including chemotherapy, radiation therapy, and surgery. Sloan-Kettering in New York, Johns Hopkins in Baltimore, M.D. Anderson in Houston, and Dana Farber in Boston head the list of the top 50 centers in the country. With their concentrations of top doctors and 21st century medical technology, these facilities are at the forefront of the latest treatment protocols and exciting breakthrough research. The breadth of knowledge and depth of experience held by their medical teams are recognized worldwide. All 50 of the top-rated hospitals are listed in Appendix A. Scan the list to see which facility offers the best treatment for your cancer; check out the websites for the centers closest to you and discuss next steps with your family and your doctor. Unless you have a textbook cancer diagnosis, your treatment may involve some trial and error that could make a difference in your recovery. You'll need to consider the options available for your treatment, so that you can work with your doctor to choose the most effective treatment for your disease.
4. CHANGE YOUR FEARS INTO QUESTIONS.
Asking the right questions makes a world of difference in how much your doctors tell you. Go to your appointments with questions prepared. Doctors generally do not volunteer information. Whether out of concern for a patient's emotional well-being or a "father knows best" attitude, unless you ask, chances are you won't get all the information you need. While they may not be as forthcoming as you'd like them to be (one in three doctors admits to withholding information from their patients), they will answer your questions if you ask them. In fact, many doctors welcome questions. It shows that you understand and are not going to be taking a passive role in your treatment. For more information on questions to ask your doctor, or see Chapter Six.
5. USE THE PROPER MEDICAL TERMINOLOGY.
Want to know the secret to getting your doctors to tell you what they know? Talk their language! When they hear you using medical terms and the kinds of questions you're now asking, some may even think you have medical training or are in a medical-related field. I know because that's exactly what happened in my case. The Internet is your best resource for becoming familiar with cancer terminology.
6. OBTAIN YOUR MEDICAL RECORDS.
Where is it written that you aren't supposed to get a copy of your medical records? Very few people I know actually ask for copies, yet these documents are vital to your understanding of your health. Medical records provide you with the data necessary for you to research your type of cancer. They give you additional information to discuss with your doctor, and they offer insight into your diagnosis, including information your doctor may be withholding from you. In addition, your medical file enables you to bring new specialists up to speed quickly, expediting your care. Getting these documents to a new doctor can take some time, especially if you've been to several specialists and have undergone tests at different locations. Personally, I favor bringing, mailing, or faxing these records to any new doctors myself, because it significantly reduces the time it takes for your doctors to receive them--sometimes by weeks. Some doctors will read your records for the first time while you are sitting there; others will have taken the time to acquaint themselves with your history before you arrive. They're the doctors who make my "A" list.
7. WRITE YOUR OWN MEDICAL HISTORY.
Maintain a chronology of your cancer. Every doctor you visit has a form to fill out, with questions on personal and family health, as well as medical history. Wouldn't it be wonderful if there were one uniform questionnaire that ALL doctors used? And wouldn't it be great if our information were stored in a secure, password-protected file that our doctors could access with our permission? Perhaps some day. Because that's not likely to happen any time soon, the next best thing is to have prepared copies of your medical history, listing all of the pertinent data called for on form after form. Keep several copies on file at home. Let your family know you have them and where they may be found. Take a copy with you when you see new doctors, and/or fax a copy to the office so the doctor has your file when you come in. For suggestions of what to include in your medical file, see Chapter Six.
8. BE DIRECT AND PERSISTENT.
Doctors may dislike discussing cancer as much as everyone else. They will often defer to specialists and they will order tests, but they are often vague about actual diagnoses. They may speak in gentle codes that sometimes vaguely identify your condition. For example, a doctor might say, "you ought to have this mole checked" without volunteering that he is looking for cancer. You need to ask, "Do you suspect cancer?" If a doctor is vague, press for a direct answer. You have your questions and you want answers. Try framing the question another way if you're not getting a satisfactory answer. If your call is not answered in an acceptable time period, call again. Cancer doesn't take a holiday. Find out how to reach your doctor during off hours if the need arises. There should be a process by which you can be assured of reaching someone on your medical team during these times.
I know now that I should have asked more questions when my oncologist discussed my chemotherapy treatments. He prescribed the combination "CVP"--Cytoxan, Vincristin, Prednisone. Prior to receiving treatments, no one spoke to me about what was to happen or the possible reactions. I was merely given a sheet of paper by the chief nurse in Infusion Therapy, with general information about the treatment's side effects. That covered, she went on with her other duties. Chemo was a daily routine for her and her staff--certainly not the scary new world it was for me. I read of several possible side effects, including extreme nausea. I never experienced nausea, but I did experience extreme fatigue that hit me like a Mac truck. I was unprepared for it, as it wasn't listed as a side effect. It was only after I talked to my doctor that I learned that fatigue was a common effect of the medication. Rather than accepting one-pager explanations, I should have asked specifically about the side effects that I might experience. Asking the right questions might have prepared me to manage the fatigue.
9. TRUST YOUR INSTINCTS.
If you are concerned that a spot or a lump might be cancerous, don't wait for it to grow. Seek diagnosis and treatment right away. More than once, I've gone to my dermatologist about suspicious spots on my face. Twice she found pre-cancerous lesions that had to be removed. If your doctor believes that the abnormality is benign, but you are concerned that it is malignant, ask your doctor if there are additional tests that can provide more definitive results. Doctors and tests are fallible, and if you are convinced that your health is in danger, act on your instincts and go for that second opinion.
Took me years of chronic illness and experience to learn those lessons. I think for athletes it is even more important to trust your instincts about your body. You spend countless hours learning to listen to your body while training and I think that same skill works to heighten your sense of abnormality within your body as well. The only symptom my wife really ever had was a persistent feeling that something wasn't right, so it pays to listen to yourself.
Good Luck.