Follow up note

I originally posted a few days after my initial diagnosis with prostate cancer and you all provided extremely helpful advice. Thank you very much for that. I hope I can pay it back/forward in the future. Since that posting, I have had a second opinion with a very well respected surgeon and radiologist at BIDMC in Boston. They noted that I was a good candidate for active surveillance and would lean that way. The surgeon said he would do the surgery if I thought that was the better course (but did recommend active surveillance), the radiologist strongly advised against any type of a radiology treatment. My research on BIDMC shows that they have participated in several research studies related to active surveillance and have a one ongoing now -- the reality is that I am a very good candidate for that program. So I should not have been surprised by the surgeon's recommendation. This contrasts with my first surgeon's advice that he would strongly recommend surgery. Ultimately, I am electing to have surgery. This was not an easy decision and was the result of many hours of discussions with my wife and others. Below are some of the more important reasons:

Although I'm only 42, I have three children, the youngest of which is 10. If I did not have children or very young children, there is a strong likelihood that I'd consider AS for 3-4 years to round our my family. The reality is that there is a 99% chance I'm done having children (and can always bank sperm or remove with a needle in the future if necessary).

I know there is about a 70% chance (% various based on the study) that I'm removing a tumor that would never kill me. Could grow slowly or not at all, and if it did start to grow, there is a very high likelihood we would catch it before it spread. No one can put a % on "very high likelihood."

One main reason for choosing AS over surgery/radiation is to maintain my quality of life for a few (or many) more years. For me, I'm not sure there is that much improvement, it is really just moving things into different columns on all of the lists I made. AS has the following downsides: There is a 30% chance the tumor will grow and we will need to treat it in the future when I'm older and in worse health (I'm certainly not going to get in better health as I age). Also, I have a family history of PCa--which increases my anxiety. The anxiety of the 30% chance will really weigh on me emotionally (I know that will fade a little over time). The quarterly PSA tests will be a constant reminder that there is a cancer inside me waiting for the right time to start growing. I don't really care about the DREs anymore--they are no fun, but I've had so many they are routine. Annual biopsies and MRIs are not going to be fun and, again, will be constant reminders of what is inside waiting for the right moment to grow. I would be taking this on to avoid the side effects of ED and incontinence. I know enough not to believe the published percentages, but almost everyone (PC survivors) tell me that incontinence isn't really a problem (some pads maybe). I can live with that. As for ED, I'm putting the chances of an active sex life (with cialis/viagra) two years post surgery at about 70%. If I'm in the 30% that will not have an active sex life, I can live with that. I won't be happy about it, but I can accept that as the consequences as the price I had to pay to, hopefully, know with reasonable certainty that the cancer has been removed from my body.

I didn't really address the radiation/surgery decision, but there really isn't much there. I have studied both and came to the conclusion that surgery is the better choice. Part of that may be knowing that the prostate has been cut out, along with lymph nodes and a bunch of other stuff; rather than relying on scans and PSA tests to know that the prostate and cancer have been killed. The radiologist at BIDMC came as close as possible to saying that he would not perform radiation therapy on me.

I will keep you all updated on my progress. I have found that the stories and personal histories that people have posted here have been some of the most helpful information I have read.

- GRS