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Don S lives in California, USA. He was 51 when he was diagnosed on November 24, 2008. His initial PSA was 6.2 ng/ml, his Gleason Score was 6 (3+3) and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

I just received my diagnosis 2 days ago (November 24,'08), though I have been anticipating this day for several months.

The first indications that there was a problem occurred in June of this year when my routine PSA came back at 3.9 (up from my usual 2.5 or less). My doctor asked me to repeat it, but I procrastinated and didn't check it again until September, at which time it came back at 4.9. I'm not sure why my doctor didn't send me to a urologist at that point, but instead asked me to recheck my PSA one more time. In October it had risen to 6.2 and I was referred to a urologist. The urologist noted some slight enlargement of my prostate on the right side, but without any palpable nodules. He told me that with my PSA level and my age, that statistically I had a 46% chance of having prostate cancer. I went home and began obsessively researching the subject on the internet. I was alarmed to read that a change of greater than 2.0 ng/ml in the PSA in one year's time is a poor prognostic indicator, as mine had risen more than 2 points in 4 months. I also discovered that a free PSA of less than 10% is also more indicative of cancer....mine was 8%. By the time I went in for he biopsy a week later, I was fairly certain I knew what the outcome would be.

I got the results of the biopsy one week later--cancer in 3 out of 8 samples taken, with Gleason Score of 6 (3+3). Two of the lesions were located in the right lobe, and were significant in size, (3.5mm and 5mm), while there was a tiny portion of a sample from the left side that came back positive, but too small to grade. I am now at the very beginning of deciding on a course of action.

I have a unique background that makes this process a little easier in some ways, and a little more difficult in others. I have been HIV positive for 27 years, which of course includes 15 years in the early days of the epidemic when there were no medications to treat the disease. Back then it was fully expected that all people with HIV would die in a short period of time, and I was told I had about a year to live when I got my first diagnosis. I am, therefore, no stranger to living with the uncertainty of what tomorrow may bring. Of course I did live long enough to see the development of effective treatments to hold the disease at bay, and my health has been very stable. I have my blood drawn and have seen my doctor every three months for more than two decades now, and long ago lost my jitters about getting my latest test results. I expect that will have some carry over for this latest challenge. Prostate cancer has such a high rate of treatment success if caught early that I'm not really all that hung up on thinking it might ultimately be responsible for my demise.

Truthfully the thing that has me the most freaked out at this point is the possibility of losing my sexual functioning. I am currently in the process of separating from my partner of 8 years. Among other problems, we had almost no sex life for a number of years, and I was very much looking forward to getting back out there, resuming a normal sex life, dating, and ultimately finding a more compatible mate. The prospect of impotence makes that feel overwhelming and difficult from where I sit today.

I saw my urologist this morning for the first time since getting my test results two days ago by phone, to talk about treatment options. Of course, he offered his strong recommendation that given my age I should act now rather than later to do something definitive. However, I do have an added factor that could have contributed to the rapid rise in my PSA that may offer just as quick a solution to slow down progression. I was found to have a very low level of testosterone many years ago - something quite commonly found in long term survivors of HIV. My doctors had place me on testosterone injections 16 years ago, and I have been doing them every 2 weeks since that time. My urologist told me that although testosterone doesn't cause prostate cancer, it does feed it. I believe that it is possible that my PSA rose so rapidly as a result of my continued testosterone use. The first thing I plan to do, then is to discontinue this, and allow my testosterone to settle back down to it's usual "low normal" state. This, alone, my urologist believes may lead to a reduction in my PSA and buy me more time.

I am a physician myself (psychiatrist), and although trained in traditional western medicine, I also believe strongly in alternative and holistic approaches to disease. I made an appointment with an MD who is holistically oriented who has cured several people I know second hand of various cancers, and would like to consult with him before making any major decisions to take a traditional approach. My urologist agreed that if I discontinue the testosterone injections, and am followed closely, I would likely be fine for at least a year without pursuing surgery or radiation There are no guarantees of course, but he told me I had only a 20% chance of advancing disease to a degree that I needed to worry about. What I am thinking today (and this could change daily for a long time, I realize), is that I will wait and see what my PSA is in a couple of months after stopping testosterone and pursuing alternative approaches. If my PSA has fallen by January I will continue this approach as long as my PSA does not rise. If, however, my PSA continues to climb, I will most likely give in and have surgery.

I'm glad I stumbled upon this site while doing my research. I have learned a great deal from reading many of your stories, and welcome any words you think might be helpful in my situation.

 

UPDATED

January 2009

 

 

As I stated in my original post, I was considering holding off on surgery or radiation, and following the recommendations of the holistic MD I had consulted. His protocol was quite complex and involved a very restrictive diet, injection of immune boosters, and a host of supplements. Although I originally made the decision to commit to this approach, my enthusiasm very quickly diminished. I found the diet to be extremely difficult, as it included such things as eating raw liver daily every 3rd month, and the supplements were quite expensive (Over $1,200 worth of special enzymes every 3rd month). I also found that as time went on, I began to really question putting myself through this rigorous regimen when there was no data to support the effectiveness of such an approach. Whereas I originally thought I wouldn't mind following his program for months while not knowing if it was having any beneficial effect, I found myself increasingly uncomfortable knowing I had cancer in me while not doing anything proven to remove it.

My main concern about the surgery was still the possibility of long term impotence, and I had been told by more than one expert that the chances of long term complications is reduced in proportion to the experience of the surgeon. I, therefore, decided to consult one of the top surgeons in the field, Dr. Timothy Wilson at the City of Hope Hospital near Los Angeles. I saw him a few days before Christmas, and hearing that approximately 80% of his patients in their 50's recovered sexual functioning after surgery, I felt somewhat more confident that surgery may be the answer. I have mulled it over since then, and have finally made the decision to have the robotic prostatectomy. I am currently looking into insurance coverage and will then go ahead and schedule the surgery. Although I had initially thought I wanted to try to control the cancer by natural means, I ultimately found the uncertainty of such an approach more anxiety inducing than I could tolerate. Rather than walking around for an indefinite period of time knowing I had prostate cancer, I found myself anxious to put it behind me by having the surgery, so I can get on with my life.

That's if for now. I will update once I've had the surgery and give a report on how it went.

 

UPDATED

June 2009

 

 

On the advice of a number of men from my prostate cancer support group, I made an appointment to see a urologic oncologist at UCSF, named Dr. Shinohara who does a unique study that is able to image the cancer within the prostate. It took me three months to get in to see him since he is the only doctor in the area that does this procedure. The results of his study were alarming, as he discovered a large area in the apex of the prostate that was highly vascular, suggesting a higher grade cancer. Also, the area was pushing right up against the edge of the prostate, and appeared somewhat irregular in one spot, suggesting the possibility of capsule break through. He recommended a repeat biopsy to look more closely at this area, and after waiting another month for this procedure, my results came back revealing 2 areas with gleason 4+3, and one area with gleason 3+4. Two other areas remained 3+3.

The recommendations for treatment at this point changed as a result of the more aggressive cancer, and my stage changed from T1c to T2c, as my disease is bilateral. [the T2c staging is a pathological staging; the clincial staging would still be T1c] I met with another specialist for treatment recommendations and also with a radiation oncologist and have been told that I need to decide between basically 3 different treatment protocols, depending on how aggressively I want to treat my cancer.

The most aggressive would involve hormone treatment, followed by whole pelvic EBRT to zap the lymph nodes just in case there is any cancer there, and finally brachytherapy. The least aggressive would involve brachytherapy only. An intermediate option would involve prostate specific targeted EBRT, with or without hormones, followed by brachytherapy. I was told the decision is entirely up to me and depends on whatever level of risk I am willing to live with. For example, there is only about a 10% chance that I have lymph node involvement, so it is up to me whether I want to zap the lymph nodes which can lead to a great many complications with bowels and diarrhea.

At this point I need to weigh out all my options and go back to ask some more questions of my doctors, but I am pretty convinced I am going to opt for the intermediately aggressive option of EBRT to treat any cells that may have escaped from the capsule, followed by brachytherapy. Depending on the answers to some of my questions I still want to ask I may, or may not do a short course of hormone therapy.

In any case, I will decide on a treatment plan within the next couple of weeks and procede with treatment over the summer.

Don's e-mail address is : DJSchwarcz@mac.com