I am a prostate cancer survivor and I'd like to guide you through some steps in dealing with this disease in a positive intelligent way.
I'll start with the items most important to becoming a cancer survivor.
1. DO NOT rush to make a treatment decision. Take your time & get a second or even third opinion. Johns Hopkins indeciates that Prostate Cancer is slow growing and affords you the time to make the best decision for YOU.
2.Maintain a positive attitude without which your body will not maintain peak performance in helping you to resist or eliminate the cancer growth.
3.Find an oncologist that will listen (really listen) to you and your concerns and respond to those concerns. One that does not hurry you out of his / her office and one that you really feel comfortable with.You are going to be close to that Doctor for a long time.
4. Make sure your Doctor is part of a qualified group so there is always coverage when you need it-even on weekends at night.
5.Find a friendly, supportive office where Doctors, Nurses, Technicians and Administrators make you feel welcome and it ceases to be a frightening experience to go for a follow up examination or for treatment.
6.Make sure your Doctors and office are qualified-check with other Doctors and patients for recommendations.
7.If you are concerned or disagree with the direction your Doctor is taking with you treatment-GET A SECOND OPINION.
8.You are, under law, entitled to all of your test results, and you should from day one maintain your own file of all reports (PSA, CAT Scans, PET Scans, Blood tests, Body Scans, Surgery, etc.) Maitain the file in chronological order. It is important for you to understand your disease and have a complete record of data for the following reasons:
B.Adding a new Doctor to the team from another specialty.
C.Need information upon entering a hospital
D. Keeping track of your own disease.
9.Very early in your efforts to make a decision about how to fight your disease you MUST get your significant other (Wife, Girl friend, etc) involved.Surgery, Radiation, Hormone treatment, etc will affect your sex life and you should, together, make a treatment decision that can and will affect both of you.
I will share my story so that you can see that I've made many mistakes which I would like to help you avoid. I'm not a Doctor, but I am a Prostate Cancer Survivor.
When I was told that my PSA numbers, as a result of my annual physical, were elevated I was not really concerned. However after the mandated biopsy of my prostate indicated Cancer, I became very concerned.
My internist recommended that I see a Urologist who described what Prostate Cancer was all about and the treatment methods that were available at that time (1990). He described Radical Prostatectomy, seed radiation, external radiation, hormone treatment, etc.
The two preferred and tested methods of treatment were the radical prostatectomy and external radiation. After checking with the American Cancer Society I got their assurance that if at all possible, the gold standard was the radical prostatectomy.
To say I was afraid there would be an understatement. I still remember the night that I dreamed that I was in a coffin and my family and friends were seeing me off.
I spent a great deal of time looking into surgery verses radiation. the side effects on both were not pleasant. Both offered the major problems of incontnence and accessibility to get or maintain anection. In addition radiation could burn the rectum and bowel. This was prior to the fitted casts used today to fairly direct the radiation beams to exactly the right area.
After extensive consideration I chose the Radical prostectomy to be done at NYU Medical Center in New York City, because it was a teaching hospital and they followed Johns Hopkin's Patrick Walsh's nerve sparing surgical techniques.The head of Surgery said I made the right choise, because he could guarantee success.
I had surgery and for 2 years my PSA was at zero. At the beginning of the 3rd year my PSA rose to.019. I asked the surgeon what that mean- He said your cancer is back. He suggested I go for radiation.
It appears that my cancer had been on the border of the prostate and had moved outside the prostate envelope.Had I knew then, that all reports were available to me, I might have chosen a different treatment option.
I went to 3 local radiation centers to discuss the surgeon's advise-it appeared to me that the risks (discussed above) could have been greeded than the rewards.
I chose instead to go to a Naturalist Doctor who used vitamins, vitamin C drips and supplements to fight cancer. I chose a highly recommended Doctor, in Westchester, NY.
I went to this Doctor for 3 years. My PSA was slowly rising but not dramatically. I was on some 60 pills daily and a vitamin C drip once a week.While the Doctor (he was a licensed physician) added more & more pills to my program, my costs were increasing and mostly not covered by my health insurance. I spent an average of $ 500 per month for vitamins and supplements.
In the late 1990's I had twisted intestine surgery. The surgeon casually discussed my situation and he strongly suggested that I combine my Eastern Medcine concepts with Western Medicine. He recommended an Oncologist that would welcome discussing the best of both approaches.
The Doctor I chose is a reasonable, intelligent and knowledgeable Oncologist. We discuss treatment options and jointly agree on the right approach for me. As an example, when I first joined him, he suggested hormone treatments to bring down my PSA numbers. After discussing the benefits / drawbacks we agreed to avoid hormone treatment as long as possible.
I go every six weeks for a PSA test and CAT or PET scan every six months. My Doctor feels, though
my PSA number has been rising (now at 23) he is not going to treat the number, since all the scans are clean
I feel well and can function fully. Essentially I have a chronic but not life threating disease that requires no more attention than High Blood Pressure or Diabetes.