Big decsions regarding SRT/ADT due to... - Advanced Prostate...

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Big decsions regarding SRT/ADT due to BCR post RP

shihtzu124 profile image
8 Replies

My husband was had a robotic radical prostatectomy 1/2019 with no major complications or side effects. Gleason 4+3, negative margins and no positive lymph nodes. There was cribiform invasion of a nerve but all margins of the prostate and 0/13 LN were negative after surgery. His post surgical PSA was 0.01 and began uptrending a few years ago. It is now 0.17 on 11/2023. Was .06 on 6/2022. We are in discussion with a radiation oncologist at the University of Rochester who is recommending SRT along with 6 months of Orgovyx preceded by a Pet PSMA scan after PSA reaches 0.2. I am super nervous about both treatments as he is currently quite healthy and active. He enjoyed biking 1,000 miles last year and enjoys restoring our 200 year old colonial revival home. So current quality of like is very good. We travel to Florida for the winter and I would like him to get a second opinion at Moffitt Cancer center in Tampa. I am interested to hear about other folks who have had situations like his, particularly if you have had SRT and how you fared.

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shihtzu124
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GP24 profile image
GP24

SRT by radiating the prostate bed usually has no lasting significant side effects.

TJGuy profile image
TJGuy

So Stereotactic radiation is called SRT when it's to the brain and SBRT when elsewhere to the body.

ADT will dramatically reduce your husband's energy and strength/stamina throughout his entire body (all muscles) by approximately 1,/4 to 1,/3 in my case along with many other side effects. If you strength train you may be able to reduce the strength loss. Cycling ability will be reduced dramatically, loss of speed, hill climbing ability, and distance. You can consider a EBike to assist pedaling while under the effect of ADT.

Whole pelvic radiation treats a wide area and also has a fatiguing effect that lasted 2 to 3 months on me. It successful kill all the cancer in the area it covered.

I just had SBRT without ADT to a single lymph node and it's very recent but not experiencing any fatigue or effects on strength at all.

In 3 to 4 months will see the results of SBRT with followup PSMA scan and probably followup MRI.

I rode a fast metric century two days after SBRT.

j-o-h-n profile image
j-o-h-n in reply toTJGuy

Re: Amtrak metric century line.

What a coincidence I was on that fast train too........Scenic dining car most of the time.........

(After all, you don't pay for this stuff).

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/20/2023 5:42 PM EST

Geo99 profile image
Geo99

I have had a similar situation where I had radiation treatment 9 years ago for a 4 + 3 in my prostate. My PSA had been stable for all those years around 0.4 to .5. That was fine and then it started creeping up on within 6 months or so it was at .9. I did the gold standard psma scan and it found a single pelvic lymph node. I did 28 days of radiation and now I'm on orgovyx and abi.

Yes, the radiation plus meds took me down a few notches on the radiation side effects lasted for about a month. I've always lifted weights and been in great shape and I continue to do so. I have had fewer side effects than my doctor has ever seen on Abby and orgovic's so I will tell you it is definitely possible your husband may still ride with the Wind almost like always after he recovers from the radiation. I believe side effects from these meds are very random as far as each person goes. I feel pretty normal other than a few things hmm not working well anymore but hoping that's temporary. The harder part is to stay motivated to go to the gym regularly that's what I'm having a bit of a struggle with. Without any testosterone the motivation is the challenge for me.

Best of luck to you.

shihtzu124 profile image
shihtzu124 in reply toGeo99

Geo99, thanks so much for your response. It is really helpful to read other's actual experiences.

RMontana profile image
RMontana

I was operated and treated via SRT at Moffitt Cancer Center in 2020-21. My diagnosis was about the same, except that I had bladder neck invasion and one EPE with NEG margins...my SRT was carried out at a recurrent PSA of 0.13; mine never went away after surgery, obviously. I have a few articles on SRT that may interest you. If you are not dry when you are radiated you will never be dry, so keep that into account (no mention of continence is provided).

healthunlocked.com/active-s...

healthunlocked.com/active-s...

The radiation must follow a PSMA PET; glad to see that is the case (unless I misunderstood). The efficacy of PSMA at low PSA levels is much debated; here are some references that I have found.

healthunlocked.com/active-s...

As far as Moffit is concerned, I cant say that the treatment was bad; it was competent. My only regret with Moffit is that it does not treat the "whole man." It operates on PCa tumors and Radiates both initial and recurrent PCa scenarios, but for me it did not pay attention to my sexual health or continence outcomes. It lacked a 'team' approach to these QOL outcomes. This has been and continues to be my main complaint about Moffit. As an institution its about as good as you can get for "treatment," full stop. If you are worried about anything beyond that treatment you best do your homework and demand what you think you need, in order to get the total outcomes you want/ expect/ require. Rick

ron_bucher profile image
ron_bucher

I had "salvage" radiation to the local area without any ADT about a year or so after my prostatectomy. That gave me 7.5 years of undetectable PSA.

During radiation, I was able to play doubles tennis for 90 minutes with no problem. But 4 hours of golf riding a cart was too exhausting. So stamina was the challenge for me.

Use the best radiation oncologist you can find who has done at least several hundred cases.

Get the PSMA/PET scan first, then see what they recommend. We cant comment on thing that may not happen.

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