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DiscussionDevastated by support group meeting: I'm doing everything wrong
Prostate Cancer | Last Active: 29 minutes ago | Replies (89)Comment receiving replies
Replies to "@fritzo Glad to hear it! And don’t obsess over the nuts and bolts of # of..."
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@heavyphil Yeah, I think the horse has definitely left the barn for me concerning surgery and who will do it. At this point, I've got to shut out the what-if's and the woulda-couldas because it almost drove me crazy this week.
I still don't appreciate the "support" group session this week that turned into a you must reconsider everything, cancel surgery and see if you can possibly do focal therapy before it's too late, your'e making a mistake you'll regret. I now know the moderator is very much anti-surgery. The group coordinator is definitely anti-surgery because he is still angry about having surgery long ago and the after effects. I know these things because we talked on the phone after the session. The presentation felt very anti-RP surgery. So, a perfect storm at exactly the wrong time for me.
I've now found out that I probably was not going to be a good candidate for Focal treatment, so I can now check that off the list.
Big picture, I actually did switch course pretty dramatically over these past couple of months. At one point, I was going to do IMRT. Since my Decipher score was going to require that I be on ADT for six months, radiation was out in my mind because I want to avoid ADT as long as possible.
Why surgery? It seemed like the initial surgeon and radiation oncologist were all saying the same thing you hear on the internet as far as advice for new patients....choose the treatment where the side effects bother you the least. In that equation, radiation wins. Surgery side effects suck instantly. Radiation side effects suck later, but at least it is delayed.
I decided that is the totally wrong approach. You should choose based on what treatment gives you the best options if there is recurrence. For me, it's recurrence., recurrence, recurrence. I can hope for "cure," but my head doesn't work that way. My head says be prepared for the worst.
The local radiation oncologist recommended I read Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer." Not too long after I finished the intro and a couple of chapters, I kept noticing that the various chapter authors were from Northwestern. I stopped and literally asked myself, "Why am I not going to Northwestern??? " which is relatively close to me)
I did lots of homework on surgical procedures and saw that the Northwestern surgeons were experts at some of the latest techniques. I picked the surgeon who probably does the most surgeries there and leads their fellowship program. So, a teaching surgeon has to stay current. I asked him lots of questions about the approach and was satisfied.
Yes, I wish I had more time to wait out the latest greatest. But, I feel like the center at Northwestern is very well regarded. My surgeon is top notch. I definitely know not to put false trust into doctors telling you everything (!), but at some point I have to put myself into their gloved hands (or perhaps just their robotic joystick controller hands).
Many thanks for all your support and great advice!!