Jim is sick said...
I saw my urologist last Friday. I brought along a lot of research from here and other places. He's ok with me doing AS. I asked about the follow up staging biopsy. He said "do you really want to go through that again?" I said, "no." He dismissed it as unnecessary. I asked about the staining of the biopsy to determine if it's possibly a more aggressive strain. Sorry don't have the info in front of me. He said "there is no data to support these claims." He is basically not interested in doing things that are not proven. I see his point I guess. I discussed with him my urinary symptoms to great lengths. I will have to do some backtracking a bit...
I have had urinary symptoms for about 5 years. Waking once per night to go. Slow starts. Weak stream. Frequency mostly, but sometimes urgency. I knew very well my fathers BPH history so I lived with it, knowing as soon as I went down the treatment road I would be on Avadart for the rest of my life. Well if you search for my first post here you can read, my story...
https://www.healingwell.com/community/default.aspx?f=35&m=1747689
So now I know I have low risk PCA, but it's not that simple. I know from my research that urinary symptoms before treatment are likely to still be there after the treatment. In the case of seeds they will get worse, and may or may not get better later. It's bad enough for me to be neurotic about the impotency issues, but I also have to try and make heads or tails of the urinary symptoms I am likely to make worse with treatment.
I have been moving away from HIFU because it retains some of the bad effects of RP, such as those associated with the removal of the prostate. The fact that you will pass some of the prostate tissue with urination.
I like the idea of seeds, but worry about the urinary symptoms getting worse and not being able to control them with medication.
I find myself back at proton therapy again and again. I don't know how I could swing 6-8 weeks in a place 4 hours from here and work too.
I was discussing my current urinary symptoms with him and he said "Are you sure you're not just thinking about the cancer?" Insinuating that I may be feeling things in my head, or making something out of nothing. I honestly replied "The cancer never worried me. It's the treatments that scares the hell out of me!"
So for the next 6 months I'm opting out of this insanity. I'm doing AS and not bothered in the least.
Jim,
I am posting a reply to you somewhat reluctantly as I can tell from your posts that you have a great deal of difficulty in handling your situation. Taking 6 months off is fine as long as you don't turn it into 6 years. Don't run away from your situation. When I was in my hospital room after my surgery, my roommate was an 83 year old man who had gone against his doctor's advice about his prostate for many years. He told me he hated doctors & hated hospitals & was afraid of confronting his situation. He was in the hospital because he had pain in his hip that had gotten so bad he could not walk. After being taken to the ER by ambulance he was admitted 3 days before I had my operation. The next morning his urologist came in & told him that he had cancer in his hip. It was spread from his prostate. My father died from PCa that had spread to his bones 17 years ago. He was not diagnosed until it was too late. It is an awful death! That happened a lot many years ago. It does not happen so much anymore. You need to educate yourself more about this disease. Read Dr. Walsh's book. I know you have gotten a lot of support for Active Surveilance from a lot of others on this forum. This is probably the best thing for you to do now. However, you cannot just forget about your problem. I went through 4 years of biopsies before my cancer was discovered. It was supposed to be a Gleason 6 mildly aggresive cancer in a very small tumor & it was Gleason 7 in 30% of the prostate. Every man is different & you need to follow up on your situation for the rest of your life. Those of us who have had surgery, radiation, HIFU or anything else will be as my uro put it "best buddies with our doctors" for the rest of our lives. It is just a fact & you need to confront it & not let your fears get the best of you. It is not fair but it is reality. There are many men on this forum who have gone through very bad times but many of us have been relatively unscathed & should be thankful to God for how lucky we are. Don't let this take control of your life, you take control of PCa. Active Surveilance is a tool for you to use but it is not just forgetting about your situation.