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Previous Cancer survivior (cholangiocarcinoma) and now prostate cancer
Prostate Cancer | Last Active: Mar 28 5:15pm | Replies (13)Comment receiving replies
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I did 9 as a "no stone left unturned" methodology. I did it because there are so many paths one can take on this that I wanted to talk to one of each discipline from three different cancer centers of excellence, so it became 9.
As to why I mentioned self advocacy is mostly from reading sites like this one, where so many people told me "urologists want to cut, oncologists want to radiate" (which was untrue in my case) and there are so many options, like TULSA, that I wanted to know the answers to. I had one chance to do this correctly. You read horror stories on these sites, I wasn't going to gamble.
This is just who I am. I don't just take news and wait for the outcome, I spend a lot of time and effort investigating every possible option and finding what, if anything, I can do to impact the outcome myself. When I got PC I was scared out of my pants, the thought of life with a dead fish in my pants and wetting myself was not what I considered "quality". I was literally booking professionals of all sorts, in and out of the medical profession, the day after I got my Decipher score and looked up what it meant.
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Very helpful. Certainly the same path I took with my cholangicarcinoma as it is relatively rare to begin with. You need to do everything you can to find out info and advocate on your behalf with such a diagnosis--at least I felt I did.
I am getting a second surgical opinion on the nerve sparing pursuit. My urologist, who does do surgery, just not Davinci, said based on the location of my malignant cores (these are on the outer most interior location) that one side could likely be salvaged while the other may not. For the same reason you stated (quality of life), and while it may be true, it behooves me to verify this with a second surgeon at a center for excellence (research hospital Indiana University) .
Why did I go straight to surgery? You didn't ask but I'll tell you. Because when you are diagnosed with such a rare cancer and you are told up front it is stage 4 and incurable, and then you beat it, you learn to recognize miracles and not play the odds. I would much rather have the cancer out of me while localized to prostate than having it metastasize. Could radiation do that--certainly possible. But then there goes my shot at surgery if it comes back. Additionally, he was almost certain I would have zero incontinence issues. As such, when you weigh the pros and cons of all the procedures, consider your own perspectives and history, life goals, and combine with science it becomes easier.
Your comment on tackling any ED issues down the road is well understood on my end as well. Of the possible rehabilitation processes and treatments, I am perfectly happy to entertain all and 'deploy' as necessary.