HealingWell
Search Close Search
☰

New member ... biopsy back.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/8/2022 9:05 PM (GMT 0)

PhillyBob said...
AZRR - thanks for the thoughtful reply... I plugged my #'s in the MSK tool and it spit out basically the same result as yours ... I follow your thought process and how you arrived there...

I feel much more optimistic since my original post in large part because of the support and info in the replies I received.

Thank you.

(My biopsy results tele visit was rescheduled for next week with the URO)

I know exactly how you feel. My biopsy and diagnosis was less than two months ago. And, to be completely honest, I have my brief moments of mild depression over dealing with this, as probably most of us do. Spent my entire life healthy and with no underlying major problems or illnesses. And now this? This wasn't even a "wake-up" call that I could attribute to something -- like clogging my arteries by eating crap food. But here's how I've come to terms with this (sort of): it almost certainly isn't going to kill me, and my body (no matter how well I've treated it) wasn't designed to function perfectly forever. I can't expect to be 63 years old and have nothing go wrong. And you know what? It could be a heckuva lot worse. It could be an uncurable cancer -- my step-mom died from multiple myeloma and there was pretty much zero that could be done. At least with PCa it's not usually a death sentence. For me, the really hard part has been processing the facts. But after you process the facts about all of this, you'll feel better. I'm not saying that PCa isn't a big deal -- it certainly is -- but caught early enough (and both yours and mine were) it's not the Big Kahuna.
Posted 6/1/2022 8:33 PM (GMT 0)
An update from me:

Epstein confirmed my original 3+4 and I have a low Decipher score of .26 (.4% and 1% risk of mets at 5 and 10 yr respectively after treatment, 2.1% risk of PC mortality at 15 yrs and 13% risk of adverse pathology if RP'd)

I've met with Fox Chase regarding HDR and an SBRT expert from a regional institution. I do not want to name him as he actually "strongly" suggested I meet with the surgeon he's sent his local friends and family to and I had a tele-visit with him. After seeing my Decipher report the SBRT RO was almost assumptive in surgery being the right fit for me but of course said I'm a candidate for SBRT or HDR and very likely any of those choices would be a success considering the Dr's I would be choosing from.

His thought was that at 55 yrs old with an active sex life, surgery performed by an expert will very likely result in a positive urinary and potency outcome. His concern with SBRT or HDR is more the unknown effect on sexual performance down the line (10 to 20+ yrs).

I know this is an outlier, but I spoke with a college friend of mine who 3 weeks ago had an RP from an expert surgeon who used an amniotic patch/membrane around his nerve bundles. He literally had sex 3 days after the catheter was removed - and he's not one to exaggerate. A study I read said the average with this approach is 3 months.

https://link.springer.com/article/10.1007/s11701-022-01370-4 (I can't figure out how to make this a link)

His surgeon was in Miami which isn't the most convenient for me - anyone heard of a surgeon using this technique? He had to actually pay out of pocket for the membrane - his insurance didn't cover it.

So I've gone from mentally just picking between SBRT and HDR to now seriously considering surgery. I guess it's better to have options but....

Thanks for all the input.
Posted 6/1/2022 8:51 PM (GMT 0)
"His concern with SBRT or HDR is more the unknown effect on sexual performance down the line (10 to 20+ yrs)."

that's a good one! a scare tactic we don't hear that often

i'd be more concerned about immediate ED and incontinence from surgery. i'm more than 12 years past BT and IGRT (A LOT OF RADIATION) and i only have mild ED that cialis totally fixes. and if anything sexual performance has improved for me, and i have never once been incontinent
Posted 6/1/2022 9:14 PM (GMT 0)
Is it a scare tactic when it comes from a RO who is very much a leader in SBRT?

I was certainly surprised!
Posted 6/1/2022 9:20 PM (GMT 0)

OP said...
I know this is an outlier, but I spoke with a college friend of mine who 3 weeks ago had an RP from an expert surgeon who used an amniotic patch/membrane around his nerve bundles. He literally had sex 3 days after the catheter was removed - and he's not one to exaggerate. A study I read said the average with this approach is 3 months.

Yes, I had an umbilical cord allograft during my RP a few months ago. I mentioned it here a few times, but I only ever received one response! Follow this link to my initial mention of this innovation:
https://www.healingwell.com/community/default.aspx?f=35&m=4280305
I wish you all the best with your prostate treatment.
Posted 6/1/2022 9:32 PM (GMT 0)

PhillyBob said...
Is it a scare tactic when it comes from a RO who is very much a leader in SBRT?

I was certainly surprised!

the "unkown effect" vs the known effect. you're right it was just a stupid statement
Posted 6/1/2022 10:58 PM (GMT 0)
PhillyBob - it is an odd position for a SBRT RO to take unless he sees something in your data set that worries him which would be nice to know. He could just be one of those doctors that is uneasy about really long term effects of radiation for younger men. On the other hand, if he is worried about how you will feel about ED in 10-20+ years, he is not worried about your immediate future which is good.
Posted 6/1/2022 11:11 PM (GMT 0)
PB, certainly that is an interesting comment from an RO.

I'm one who had RALP at a bit over 56, and I've had really good results. That being said, I've often thought that if SBRT had been better established at the location where I was treated at the time, I would likely have gone that route.

It's true, we don't know what effects radiation has 20 years down the road. Might I suggest that as we and our spouses age, possible ED is much less of an issue. If ED was my primary concern at 55, then, even though surgery is much, much better than it used to be, I'd likely go RT to avoid the immediate potential issue....and if the downside is risking ED in my 70's--well, unless I'm planning on establishing a new romance with a much younger woman, then I'd say so what.
Posted 6/2/2022 12:30 AM (GMT 0)
Hi Bob, I’m now five years post SBRT and enjoy the same urinary and sexual function I had when I was diagnosed. I only pee when I want too and have no trouble starting and stopping mid stream and I sleep through the night. Sexual function is great and no medication necessary. From discussions with my radiation team my results are typical and not exceptional. That said; when we share our personal experience each of us is a data point of one.

No matter what treatment you find best for your situation I believe the best practitioner and team can make a big difference in outcome.
✚ New Topic ✚ Reply
12