May 30, 2013 - 2:56 am
Let me first make clear that I chose to be treated by Drs. Who I knew might be inferior. I live in the Philippines, and there is no question that treatment here is below Western standards, so I have responsibility. And, probably the treatment I got would be quite similar to Western treatment, but there is no medical malpractice here and Drs. for sure run a lose ship. Even though the treatments may have been correct, I feel very strongly that the treatment is killing me and now I need to take control and go down a different path. 14 weeks ago I found out I had grade 4 Pca with many matastases. At that time, at 81, I was in super health, very strong and weighing 204 lbs. Now, I weigh 178 pounds, have no muscle, look thin and pale, and feel old and feeble. I feel that if I were to be hit with a disease like pneumonia, now I would be history because my immune system has been degraded by unending imaging, drugs and surgeries. Now, instead of showing glowing health, I certainly look like I have a terminal disease. The Pca has never at any time caused me any problem. No pain, no weak bones, nothing, but the therapy is killing me. Long ago, I read that one out of three patients with terminal cancer is killed by doctor induced death. The treatment kills before the cancer can.
I am sharing this to emphasize that with this disease, you must not only be very careful with the treatment you chose, but you must also be very aware of the side effects of that treatment and how these side effects may become very threatening if not dealt with.
My first treatment after biopsy was castration. Castration removes all testosterone from your system. To understand how serious this can be, first lets look at what testosterone supplementation can do. No athlete not on TS can compete with an athlete who is. Even in old age, a great body can be built with TS and an aggressive work out program. Without it, there is no chance. So TS can produce very remarkable gains. Now, when you remove TS, the exact opposite happens. As effective as TS is in building, the total removal of all Testosterone will be equally devastating to the body in a very quick and major way. Perhaps there is not enough understanding of this among Pca sufferers. Muscle tissue is lost rapidly, weight gain can come to the stomach area, the penis may decline in size, extreme tiredness is experienced, and it becomes harder and harder to get up off of the couch. Your strength simply disappears. This is one reason why exercise is so important, and also why it is now even more difficult to do.
In other words, when you remove testosterone from the body, it has very severe consequences that MUST be dealt with. What we are all talking about here is life extension, and ALL aspects must be considered, including the problems created by the treatment itself. In my case, there is no question that my health and immune system have been degraded in a very large way by treatment, and at the same time, the Pca has been very kind and benign, and never caused a problem. I have two Urologists who are best friends of each other. It is now obvious to me that they are very highly interested in transferring as much of my money to their bank account ASAP. Both encouraged me to take Zometa. I considered it to be Chemo and did not want to do it, but finally gave in. And, I ended up paying a very heavy price. I was deathly ill for three days. Really bad headache, nausea, hard to breathe, could not walk for fear of fainting, bone pain, difficulty eating, and fever. My wife read the pharmaceutical company’s brochure to see side effects and found this: DO NOT TAKE ZOMETA UNLESS YOU HAVE HAD AT LEAST ONE HORMONE THERAPY FAILURE. In other words, I had no business taking this in the first place, and, is it possible that two urologists would not know this? However, here a Zometa treatment costs $450, and the Drs get a cut, and I am sure they knew this.
In my case, it now looks like I would have been better off doing nothing at my age, just keep on with my steroids, my body building, healthy diet and life style. I may have gotten just as much time doing this as getting treatment. And, for sure, I would be a lot happier and healthier. I did not make that decision because I have a gorgeous 26 YO Pinay wife who encouraged me to do whatever necessary to be with here as long as possible.
So, my message is this: This is a very tough disease to deal with. Correct decisions are never easy, and the side effects of those decisions must be carefully scrutinized. All the wonderful old timers on this board who take so much time to contribute say: Always go to the very best doctors you can find. Always get several opinions. And, remember there may not be any easy decisions, and outcomes are never guaranteed are you are always at risk, and you cannot ever tell what traps may lie ahead for you. Love Rakendra
PS: It is now two months since my oriechtomy. My PSA was 200, it is now 9.8. Is that OK? By the way, immediately after my testicles were removed, a growth like a tumor began on the right stem that was left. It just kept growing and growing. Neither Uro had a clue or a treatment plan. It looked like a tumor that needed to come out. I got ultrasound and the diagnosis was consider testicular cancer. My Uro says no cancer possible because there is no testical and both tested no cancer. The Zometa has now reduced the size of this tumor by more that 60%. Any suggestions?