Diagnosed today w/ PCa. Seeking feedback w/ treatment I think I want

I'll share my RARP experience. I am a couple years younger than you, and last year I went through the same thing, with the same worries about ED and incontinence (things that aren't guaranteed to NOT happen with radiation by the way). I didn't have a single second of either.

I spent four months preparing for surgery, hammering my pelvic floor, my core and both a the same time to the point my pelvic floor therapist said she'd never felt a stronger pelvic floor on a man (you can assume how she FELT that...).

While getting into better shape, especially that pelvic floor, doesn't guarantee outcomes - it does improve them. If they can spare any of your nerves then you greatly increase your chances of ED if you prepare. As for incontinence, the pelvic floor work helps you deal with losing the one extra sphincter that men have to preserve continence and essentially just end up with what women have and they use their pelvic floor to control it.

I've never had a single accident, never a single flaccid moment when I didn't want one. I think you do yourself a disservice to not explore the best path your doctor recommends - especially at just 57. I was 54, I was told that RARP was far more recommended for men our age than radiation because we will recover faster, have better chance at fewer side effects and that radiation's side effects could rear it's ugly head in our lifetime.

That's my $0.02, happy to discuss in private messages if you wish.

I had a prostatectomy in 2010 and Salvage radiation in 2014 when it came back. The only side effects I’ve had is incontinent six years after the radiation, which has gotten worse over time.

In 2017 I had a laminectomy and they had to open me up from L1 to L7 And put in a metal plate. I still have some nerve damage in my right arm and leg, but the partial numbness is sort of convenient when I have my monthly blood tests.

Sorry to hear you’ve had so many side effects from radiation. We seem to hear about them in here, but I hear from so many people in the nine online meetings I go every month. Very few have anything but cystitis. Some people do have the kind of problems you’re encountering, however.

The spine surgery Kept me from doing stuff a lot longer than the prostatectomy. You do have to really take it easy after having that surgery.

@thig350

I'm 59 and recently diagnosed. I'm 3+4 (small patterns of 4) and have done a lot of research on both. Consulting with RO's at two of the best medical centers in the country (MD Anderson & Sloan Kettering and would highly recommend you do that if you can).

What they have told me is bowel cancer risk for average person is 1%. With radiation it's 2% --- so doubled but still extremely small. SBRT technology plus use of gel spacers significantly lower radiation to other areas.

Extremely tough decision I know but I'm leaning radiation as recovery etc much easier and RO's telling me my chance of recurrence is sub 10% and treatments now exist should you have recurrence in many instances.

Don't take the "one and done" line from a surgeon without investigating further at some top flight institutions. Good luck....know firsthand this is a tough decision!

@survivor5280 Thank you for sharing your experience. I've learned alot since my initial post on this thread.... Because of my age of 57 I can see leaning towards removal because I am concerned that radiation could cause me problems down the line.... I really don't want to be in my late 60's or early 70's and need to deal with the radiation side effects plus whatever else life is throwing at me at that time. That said, radiation is very effective and from what I have learned, there is a little bit of "overspray" of radiation that hits the area around the prostate which would in theory zap any miniscule cancer cells that if I had opted for surgery may be missed until later on when I would then need salvage radiation, which I may have avoided if I just went with radiation in the first place... I don't want to have surgery to avoid radiation only to then have radiation anyway! Oh my, I'm really thinking this whole thing into a pretzel 🤣

@thig350

Here’s what Stanford found when it comes to secondary cancers from radiation.

It may not be as bad as you think.

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.
https://med.stanford.edu/news/all-news/2022/070/prostate-radiation-slightly-increases-the-risk-of-developing-ano.html

@thig350 You are not going to avoid salvage radiation by having radiation as your primary treatment; you simply WON’T be able to have it if your primary treatment fails.
And radiation (all types) fails just as much as surgery so do not view it as superior as far as outcomes are concerned.
SBRT would be an option if your cancer recurs, but you’d probably need ADT as well.
My decision to have surgery was, in fact, because I COULD have SRT if needed…and I did.
Phil

@thig350 You are thinking correctly now since any treatment is a choice between bad and worse. As far as radiation definitely get a Prostox test if considering this option. If it shows high risk you have a 70%+ chance of late toxicity; at low risk it drops to less than 10%. As Jeff mentioned the overall population risk of developing another cancer is 1 in 40. This becomes 1 in 33 with radiation. Treatment area has gotten very precise, so no overspray. At Grade 3 there is intentional treatment of the prostate bed, local lymph nodes, etc. since there is a good likelihood of small amounts of cancer being present. These are treated at a lower dose (Gys). It is done by using a wider field on some of the fractions.

As heavyphil mentioned most under 60 opt for surgery so they have the option of salvage radiation later. Being younger there is also better recovery. Your concern is valid since undetectable cancer outside the prostate (or poor margins where a little detectable is left) are the main causes of recurrence after surgery and the percent is significant. If you opt for surgery, the most important decision to minimize side effects is the selection of the surgeon. Read all of wheel1s posts. You want the latest surgical technique with nerve sparing to minimize side effects which are usually permanent ED and incontinence. I would be seriously tempted to spend the $35K (including travel) to have it done at the German clinic he used. If you look you should be able to find the same technique in the USA. The decision on a surgeon is going to impact the rest of your life so spend the time to verify and make the right one.

@thig350
wheel1 and me use same surgeon....
I had state-of-the-art surgery and a surgeon who was well versed in Single Port surgery along with the Retzius sparing technique for removing the prostate. I wish that every one who decide to do surgery will find surgeon who can perform it.
I hope this technique will be soon a standardized protocols for every person who decided to undergo prostate removal surgery.

@heavyphil That was my rationale as well, and what I was consulted to do by 9 doctors: get it removed and you can still do radiation later if you need to.

The one thing that people also forget is that the only way to know the true state of your prostate is to have it removed and get pathology, something that no longer is an option after radiation. My path upgraded my scores in several places, and it 100% confirmed I made the right choice to remove it first.

To each their own, no treatment is risk or stress free, but I think when you are under 60 the choices are often clearer today than 20 years ago and certainly you are in a better place to recover than you will be at 70.