What did you do? Regrets?

Maybe the right way, gary, is similar to our suggestions for how to do doctor consults: If you had radiation, don't talk about the side effects of surgery--and if you had surgery, don't talk about the side effects of radiation.

The OP question was specifically to ask us what treatment WE did--and how did it come out, and what regrets do we have as individuals.

Hi RobLee, I hope that life is now better for you than it was in the past. I always consider what you have been through when I read your posts.

Just a few minor points: Proton therapy for prostate cancer was FDA approved in 1988. Cyberknife was FDA approved in 1994. DaVinci surgery was FDA approved in 2000.

So, the "newer" RT treatments were available long before robotic surgery was. Now, they may not have been widely available, especially in the practices that you consulted with, but they are not "new".

Be well.

ASA, good point, but that's not what I actually meant. Newer in the field of radiation treatments, compared with IMRT and LDR brachy. My point was that they were reserved for G6-7 (AFAIK) though I've heard there have been trials involving higher risk cases. But honestly, no one at the time was forthcoming with much information regarding my case.

Thank you for the well wishes. To be honest, I honestly DO obsess about how things went down, but my wife and I are both in remission, so things certainly could have been a lot worse. So I need to constantly remind myself that I was indeed fortunate that BOTH were caught when they were, and not a few months later.

I chose proton beam radiation, and for me it was a very successful choice. My psa is now at 0.01, and I have no significant long term side effects. I had to mount an epic fight to approval from my insurance for proton beam treatment, but it clearly has been worth it. If I had to do it over, would definitely go proton, but would consider cyberknife as a reasonable alternative.

Had RP and heavily regretted it. It left me 100% impotent and with stress incontinece.
Was not my choice.
MK

I had surgery and I regret it. I had re occurrence right after, requiring radiation and ADT.

If I had to do it over again, I would have done radiation .. probably brachy.

I owe 2 inches of dangly fury, with no fury left.

Oh well... I stored my sperm so now the wife and I are hoping for baby #2 ... so I guess sex is just a part of my life that I'll have to put in the closet and be happy I'm still here for my family.

Zzarth

Zzarth, when was your recurrence? (reference)

Just 2 days ago, in another thread, Bobbisan posted this link to a short video by Dr Charles "Snuffy" Myers...known as a leading oncologist specializing in advanced prostate cancer cases; men travel from around the world to seek his 2nd opinion, although he has just retired from practice. He discusses a similar common case/scenario: https://askdrmyers.wordpress.com/2012/12/19/when-recurrent-pca-isnt-cancer/

Post Edited (Blackjack) : 4/3/2019 8:23:21 AM (GMT-6)

I regret not playing:
Numbers: 10 – 14 – 15 – 53 – 63
Powerball: 21 (PowerPlay 2X)

....back on March 20th.

When my GP suggested going to a urologist, I thought it was almost laughable, because my PSA was so low. It had been very slowly rising, but barely over 5.0 The results of the biopsy floored me. The highest number was 4+5=9, Stage T2a. I went the way of robotic, because I figured the cancer was still contained and it would be out of me. The worst side effect of the surgery for me was so minimized by the urologist I didn't even worry about it. I earned a new bellybutton. When I sit down it tries to pull in even further to the point of pain. A vacuum pump would not pull it out. Pulling it out to use a penis expander was painful during and after use, but I did it regularly for better than 10 months. At that point an expensive battery pump worked. A friend who had the old style surgery ended up with the return of cancer and had to get radiation. He did not have shortening, but had problems after the radiation I would not want either. I did some quick research before the surgery and did not come across anything that indicated more than 1/2" penis loss. This is a BIG PROBLEM! It is embarrassing to talk about, but anyone contemplating this should be told what can happen before they make their decision. I definitely have buyers remorse, but other than stressing to my doctor to save urethra length to the point of taking a chance with spreading the cancer, I don't know what I would do different. I am obviously not alone in my sentiments. I have not seen it posted, but using the toilet has become a different experience as well. At 14 months, still can only use the elongated toilet and try not to shoot under the lid onto the floor because of lack of control. Too short to use a urinal for first 7 months. Also, I have to pee more often now than before the surgery. I had nerve sparing on the left side nerve, but about too short for sex. I accepted the possibility of no sex pre-surgery, but not the true cause of it. I think more research needs to be done on how to grow or extend the urethra. I still don't understand the pulling effect when I sit down. I am convinced if my urologist had to live with this for even 6 months, he would have figured out a way to change the result!