Whole pelvic salvage radiation

[twostrats]

I'm curious how those who have had whole pelvic salvage radiation are doing a few years later

[Radtech40]

Dad had it and was in quite a bit of pain for 5 days after but here he is 2 years plus later and none of the pelvic mets have activated again and it worked well.

[twostrats in reply to Radtech40]

Thank you Radtech40

[TylexGP]

While my HDR Brachytherapy and Whole pelvis EBRT were my primary Tx. I am 2 years out and currently have negligible side effects . I do have persistent ED but attribute that to the ADT I received for 2 years.

[twostrats in reply to TylexGP]

Thank you

[Jancapper]

ditto TylexGP but I am only 13 months out

[twostrats in reply to Jancapper]

Thank you Jancapper

[efsculpt]

Started Lupron, Zytiga, Prednizone. Three months into that two year treatment, I had a G-68 PSMA Pet scan at UCSF. That revealed 4 lymph nodes up by the ilium artery split ( cancer can "leap frog"). Had 8 weeks of whole pelvic radiation at Stanford. Finished the L/Z/P. Four years now inactive cancer.

Upon ending the L/Z/P I got edema below the waist. I am not sure if it is damaged lymph nodes, going off prednizone too rapidly, or damaged adrenal glands. It is much better now but I do wear compression socks.

Fatigue in the afternoon.

Testosterone very low.

[twostrats in reply to efsculpt]

Thank you efsculpt

[TuffNuttoCrack in reply to efsculpt]

I have edema in upper things and jelly belly. No radiation. Zytiga and lupron, exercise regularly. Gets worse with walking. Some say enough venous insufficiency, lyphadema pt person says not lymphedema.

Expensive lymphedema compression machine does not work, just makes belly bigger

[marlins1]

Got whole pelvic/leupron 6mo shot after BCR 2018. So far , so good. PSA staying at <.04. Check every 6months. Not much changed. Some leakage still persists, maybe a little worse. Pretty happy so far, but always vigilant.

[twostrats in reply to marlins1]

Thanks Marlins1 good for you

[DennisDworak]

I had imrc pelvic radiation in 2003 8 years after my RP. Went ok with no initial SE. but it didn’t cure me at all. Had chemo & Zytiga & prednisone with a still rising PSA. So had a PSMA scan that found 2 hot lymph nodes. Had SBRT to them and they were killed and I am now in remission. Has been a Long 28 years of treatments. I do have radiation proctaphathy that came on about 8 or so years after my initial pelvic radiation. And that is uncontrollable bowel movements at times.. makes for a somewhat poor QOL and I have to wear men’s depends all the time. And can’t really travel anywhere like I would like to in my retirement. Pitts.. with all the new tools they have available now I definitely would not do pelvic radiation again It gave me a very poor quality of life. Just my .02 cents worth. Good Luck

[twostrats in reply to DennisDworak]

Thanks DennisDworak

[Ramp7]

A year after my surgery PSA 0.1. Opted for radiation to pelvic bed. I had a little fatigue. But played golf, worked, stayed active. That was 14 years ago. Still here.

[twostrats in reply to Ramp7]

Thanks Ramp7 so keep feeling better

[Hawk56]

Had PLN radiation therapy in July 17, no issues during or after.

Clinical history

[London441]

I had it after RP in 2019 showed seminal vesicle invasion and a positive node. Also 6 months abiraterone and 18 months ADT.

At this writing I am undetectable over 4 years post op, 3 1/2 years post radiation, 3 years post ADT and 30 months post full return of testosterone. I experienced no side effects from the radiation.

My heart goes out to guys who had poor results with it years ago, but no greater advances in medicine have been made than in radiation. Much stronger doses can be delivered-and much more precisely-than before.

Your first shot is always the best one.

[Nusch]

I’ve had whole pelvic radiation two years ago. No side effects, still on Lupron (one last shot end of October) and undetectable PSA.

[Bruce66]

I had 2 mo pelvic bed four years ago after RP and persistent elevated PSA. Didn't feel a thing before or after. I was working in maintenance at the time, would go over my lunch break. No fatigue, no nuttin'. Don't know how much good it did as I'm still on Lupron and now Xtandi, but it wasn't a big deal, for sure. I notice no lingering side effects thus far. I hope you have better luck than I did.

[Blueslover]

Had whole pelvic salvage radiation as my surgery 4-5 years previously had a dirty margin.No immediate after effects but a dreadful case of radiation cystitis at least 8-10 years later. Also, ongoing urine and fecal incontinence for life I guess .

The radiation did lower my PSA to zero for about 4 years, after which I went on Lupron which I am still on, along with Darolutamide later. Thankfully now told I am in remission!

Hugh

[ron_bucher]

I had salvage radiation in 2009. It gave me 7.5 years of undetectable PSA.

My side effects were very minimal - very slight weakening of rectal muscles but no need to wear anything special, just can't "hold it" as long as before when my bowels get the urge.

Keep in mind that the state if the art has improved significantly over the last decade or two in minimizing damage to healthy tissue. Make sure your radiation oncologist has done it for at least several hundred prostate cancer patients.

[jmarsh]

I had RP in 12/21. PSA started rising shortly after. Found a lymph node on subsequent PSMA PET scan. Started Lupron and Abiraterone in June 22. Did 33 whole pelvic salvage radiation treatments in July/August of 2022. Still on Lupron and Abiraterone for another 9 months and PSA is undetectable so far (Yay!). During treatment period, I had some real urinary and bowel urgency. This cleared up a couple of weeks after. Remaining SE's from radiation are irregular bowel habits; more constipation than urgency (which is good, I guess) and a little intermittent rectal bleeding. Seems to be radiation proctitis, but not a big issue so far and hoping that stays at bay. Hoping I am cured, but time will tell. Good luck to you!

[Chugach]

I’m 7 years in stage 4 and Doing good. The whole pelvic radiation was an early first of many steps. This last spring, had some time up proton beam radiation to the prostate again.

[Bdale]

I had Pelvic radiation starting in April of 2020, not sure if it was full pelvic, but it was 38 sessions after my LRP. I felt great during the sessions and still feel fine.

[j-o-h-n]

Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/03/2023 5:34 PM DST