A Patient's Guide to Managing Hormone-Refractory Prostate Cancer  

Chapter 5. Build a Winning Medical Team



Because of the complexity of the body and the complexity of this disease, no single individual can provide the amount of expertise you need to fight this battle. You are fighting a disease that requires a knowledge of the latest clinical research as well as the battery of currently available oncological weapons.

To illustrate the level of medical complexity facing you and your team, the National Library of Medicine reports that there are 75,000 medical research articles being published every week of the year! Go to their CancerLit database and type in the word “prostate” to see how many research articles are there. You will be told that there are more than 37,000 articles on this one subject. Most doctors don’t even attempt to keep up with the “literature.”

Even more problematic is the fact that there is no “standard” treatment for HRPCa. That is understandable when you realize that there is no such thing as a “standard form of HRPCa.” You are, unfortunately, confronted with a difficult medical problem. However, there is an effective way to approach this disease and its management.

Your treatment strategy requires a prostate cancer expert

This expert will help you set a strategy that will be implemented by you and your local oncologist back home, over months, if not years. Thus, it is not too important to have the person nearby. You will only be visiting this individual, perhaps, once a year to update your progress and treatment strategy. However, you will have questions, and you will need to communicate between those visits.

A true prostate cancer expert is an oncologist who works full-time in fighting prostate cancer. This is an individual who reads the applicable medical literature and makes use of the information to keep his treatments at the forefront of the science.

This expert is not just a researcher, but has a clinical practice. The patients are the evidence of the expertise.

You will usually find these individuals (both men and women) at a teaching hospital associated with a medical school in a good-sized city. The physician may be a urologic oncologist or a medical oncologist who specializes in prostate cancer. If you subscribe (free) to our support list, we will offer suggestions and ideas on finding such an individual. If you have a support group in your area, the members can usually suggest an expert.

It is all-important that you be comfortable in working with this individual. You should be able to get your questions answered fully and have your ideas treated respectfully. Your expert will need to agree to answer questions sent by e-mail or fax or phone. Somehow, you need to be able to stay in contact between visits.

It is quite likely that the first expert you visit will not meet your needs. If you don’t get along with that doctor, keep looking. Remember, you are the one whose life is on the line and the one who is paying the bills…or signing the insurance authorizations.

If the wife (or daughter or son) is the one managing the treatment, then the doctor should be equally compassionate and respectful in dealing with her.

Your local medical oncologist will implement your strategy

Chances are you began this odyssey with a urologist. Most of us did. However, urologists are trained as surgeons. As such, they do not have the range of capabilities you need in fighting this cancer. You need to have a doctor who is willing to use whichever treatment is best for you.

Like the urologist, the radiation oncologist is a specialist who might be needed during the course of the disease. But this is not the specialist you need on your team to fight this disease long-term.

You need to find a medical oncologist—often a hematologist/oncologist—to work with you locally. This individual will write most of your prescriptions and will treat you when you need intravenous drugs. This is the individual you call if you get into medical trouble.

This individual must be willing to work with your expert, since there is no chance that he will be a full-fledged expert in prostate cancer, much less HRPCa. If you diplomatically explain the involvement of the expert, you should have no difficulty in achieving cooperation.

In dealing with experimental strategies you will need to depend on your expert to validate the treatments to your local oncologist. Don’t expect your doctor to initiate a new treatment purely on your request. Work out any experimental treatments with your expert, and present these to your local onco as the expert’s recommendations.

One problem you may encounter with a local oncologist is a mindset that HRPCa is a lethal disease with a short survival span. He will often have a single treatment—mitoxantrone—in his medical armamentarium. You can avoid a conflict by having a treatment strategy ready from your expert. Be sure to allow your local oncologist time to review any information you provide and to contact the expert if necessary.

Provide the expert’s phone number and do not press for an immediate start of treatment; the oncologist then has time to consider the approach. After all, you want this individual to look out for your life; so give him time to think.

I generally ask an oncologist never to discuss survival time with me…I consider that to be solely the province of God. An oncologist who tells me I have “x” number of months to live will be embarrassed if I refuse to die promptly. I don’t want my doctor committed to a schedule for my survival. Most doctors will be relieved to have you take this position.

Get an internist to oversee your general health

Cancer and age carry the risks of other diseases, such as cardiac failure, diabetes, kidney failure, etc. You haven’t won the battle if you control the prostate cancer, only to find yourself felled by a heart attack, even another cancer. One of the prostate cancer experts has commented that half the men with advanced prostate cancer actually die of heart failure! This means that your medical battle has a wider front that must be watched.

The internist, or general practitioner, or family practice doctor, will watch your back, healthwise, while you are fighting prostate cancer. You will want this physician to understand your “medical team” approach to fighting this cancer.

You are the team manager

The team functions only as well as manager who leads it. You’ve selected the team; now you need to work with it effectively.

Communication is the key. You need to make sure that all your blood tests and medical reports are faxed to the other members of the team. Give the GP your cancer reports to keep him informed. See the next section on medical records.

Whenever I consult with my expert, I write out my questions and his answers in understandable form and give copies to the other members. Many doctors prefer to avoid e-mail for liability reasons; so I provide copies of communications as faxes or by regular mail.

I try not to surprise my local onco with exciting new treatments, unless he has the background explanatory information. I also avoid asking my GP for ideas on treating HRPCa; that’s the responsibility of my expert.

Finally, I keep up a fairly intense search for ideas myself, and I screen these with my expert.

With HRPCa you are under considerable pressure to find effective treatments. In a word, you have taken your life into your own hands. However, you need to be diplomatic with your medical team, no matter how much you want to live. If you alienate your doctors, you won’t get the open communication necessary to this process. It is your decision whether you wish to work with a particular doctor; don’t stay with one who doesn’t meet your needs, and don’t try to convince him to change. You don’t have time. Find team members you can work with; then do everything in your power to make that a successful team.

Continue with Chapter 6