Post Salvage Radiation (SRT) ??Incontinence ??Toxicities S/T, L/T

[jjpeabody]

Iam winding down my hunting and gathering information process with 2 appointments left, Medical Oncologist and Urologist, with Radiation Oncology set and primed waiting to pull the trigger. I was hoping for some feedback regarding post SRT after RP experiences. If you care to post please include age at SRT, whether any incontinence/pads before SRT and what incontinence or toxicity S/T and L/T afterwards. Thank you very much, Jim

[jjpeabody]

Thanks for your reply Nalakrats. I haven't heard of the Space Oar used after surgery for SRT. I believe the radiologist did mention something about a rectum baloon, but not sure. He did say the bladder and rectum would receive some radiation. I expect responses would be like a bell shape curve, but still interested in hearing if anyone posts. Thank you, Jim

[JPnSD in reply to jjpeabody]

I just started my salvage radiation 18 months after RP...and my Doctors (Sharp and UCSD) both said space oar is appropriate if you have a prostate....not for salvage radiation.

[jjpeabody in reply to JPnSD]

Best of luck with you treatments JP! Jim

[Bethpage in reply to jjpeabody]

I'm not sure if this is what you're looking for jjpeabody, AND it's a late reply (I hope not too late) because I'm researching for both PCa and for CLL for my husband now, but husband had simple robotic laparoscopic (simple because biopsies from 2003 to 2014 were all negative, but had extreme BPH, in 2014 at age 71, just shy of 72). Had been on a catheter for 4 months prior to surgery because of BP, so continence came with pelvic floor therapy (very effective). Post simple resulted in rising PSA, so MRI-guided biopsy followed by salvage surgery in 2017 (age 74, almost 75). Pathology totally negative from salvage though 1 out of 4 cores of biopsy was positive). PSA started rising again 18 months after salvage surgery until it reached 1.0. Husband had 5 sensitive scans (including F-18 DCFPyl and Kwon's C-11 choline to find location of BCR - located in prostate bed). Next treatment June - August 2019 (age 76, almost 77) had 39 RT to prostate bed. PSA has been <0.1 since RT, but now has CLL from radiation. I researched SpaceOar _extensively_ for 1.5 years between salvage and RT. The manufacturer told me several times that there are ROs using SpaceOar post RP, but would never give me contacts. I was finally fortunate to talk to two well-regarded ROs that said that SpaceOar would _not_ be a good idea after RP because the gel disintegrates/degrades over a relatively short period of time and could potentially spread PCa cells as it does. RT: husband had a little easily-resolved constipation at the 8th week of RT that continued (still easily managed) for about a year. A couple of months shy of 2 years post RT, constipation totally resolved. His incontinence after surgery was conquered with PFT. Incontinence after second surgery resolved quickly. Within the first 6 months after RT, had stress incontinence. That resolved again with RT. Still experiences drips if he's very sick (hospitalized because of CLL 4X in 2020, but that is always managed with diligence re kegels and flicks). Husband is now 78, will be 78 in December. Two surgeries and 39 RT and so far he's gold. Waiting on the next PSA. The only time he has used pads was after first surgery.

[jjpeabody in reply to Bethpage]

Thank you for your reply Bethpage, your post is greatly appreciated and not too late. Dr. Kwon appears to be very highly qualified and experienced and I wished he was here in AZ. I meet with MO on 3/22 and will consider your post and the other posts from our friends on this message board. Also meet with Urologist on 3/23 to discuss current incontinence and kegels, and what i might expect post SRT. Your husband appears to be in the best of hands medically and with your loving support. Thanking you for sharing his relevant experience especially post RT. I hope for the best for you and your husband's continued success, Jim

[Steve507]

Age 62 RP 3-2019. Post RP SRT finished week 5. SE: I wiz a lot, daily diarrhea, and mild fatigue has just started. All easily manageable. 23 ZAPS completed, 15 more for 38 ZAPS in total. I had 1 90 day zoladex injection. Sweats. <0.01 Since Jan 10.👍

[jjpeabody in reply to Steve507]

Now that's what I'm talking about! Thanks for that information. I have about an hour drive one way to treatment if going with radiation. Good luck and success Steve, Jim

[Steve507 in reply to jjpeabody]

I haven't been impaired in any way since treatment so driving isn't an issue. I have to prep my bowel and bladder for roughly an hour or so before treatment, i.e., basically bladder full and bowel empty---if not then you won't be irritated until such time. I drink at least 2x the normal amount of water which is a good thing. Establish a routine for the desired effect.

[jjpeabody in reply to Steve507]

Important to know, thanks again, Jim

[JPnSD in reply to jjpeabody]

Calibrating the water routine for a full bladder is important and it took me a few trials...for me...empty bladder 1 hour before...drink 16 oz of water immediately...then 8 oz water 30 min later...seems to work.

[Hidden in reply to jjpeabody]

Similar situation as you...RP followed by RT. As others have said, SEs are manageable. I worked out and played ice hockey all thru the treatments. Just more fatigue and the urge to go.

I did go on pt disability. The claim was still open from my surgery and recovery and I figured why not...I never took time off before and I earned the extra rest.

Anyway, you'll do fine.

Take care!

[jjpeabody in reply to Hidden]

Thanks for reply XPOI, I enjoyed reading your profile info. Best of luck going forward, Jim

[Channelhomec]

Had salvage 15 months ago only problem was anel sensitivity possible hemroids take a stool softener getting better,now you pray it works age 67 >prostate removed 2013 >psa @salvage 0.14 had a positive margin pathology report apical margin .

[jjpeabody in reply to Channelhomec]

Sounds good for you Channelhomec, good numbers. Yes, I pray for your success and for us all. May we have peace in our fight. Thank you, Jim

[Ron53]

Had RP April 2018 and SRT Oct 2020 (age 67). At recommendation of RO, I took Ducolax each day, but diarrhea set in about week 3 and didn't have to take any longer. I had little fatigue, as some did kick in about week 3, but it went away a few days later and never returned. (was on ADT - Firmagon- leading up to and thru-out the procedure - so may have been from that). Main issue I had was preventing gas in system..RO/Tech was a stickler for no gas in system. Had to go home and come back later in the day a few times. Took GasX at RO's recommendation, but still had to deal with. I suspect it was my mis-management of my diet. As far as being dry, I was 99.9% dry six months after RP (no pads), but two cryotherapy events and a bladder biopsy, has set that back to having to use a pad (only one per day) once again ( slowly getting better). SRT did not seem to make it any worse. The worst part of the SRT for me, was for 7 weeks I had to be somewhere everyday at a certain time. It was like going back to work. Prayers for a successful event!

[jjpeabody in reply to Ron53]

Thanks for that very relevant information Ron, especially about the incontinence as this is a major concern, good to share. Best of luck for your continued success. Jim

[Blueslover]

It reduced my PSA to UD for 4 years. 6-7 years later having a lot of bladder problems, but guess I would do it again if that was the only choice for a possible 'cure'Hugh

[jjpeabody in reply to Blueslover]

Thanks Blueslover, I appreciate that information re late side effects and your overall feelings about the treatment. Wish you the best going forward. Jim

[keepinon]

I had RP a little over 2 years ago at age 65. Not a good post-op result. Gleason 9 and everything bad to go along with it. Post-op PSA was .9. Started Lupron and Zytiga right away but waited about 7 months for my incontinence to get better. At the time of SRT I was not using any pads, but by the end I was using 1-2. I was not very happy. Fortunately, my incontinence went back to where it was before SRT in about a month. I still leak once or twice a day, but not enough to need a pad. SRT was relatively easy except for going 38 times. Week 6&7 some fatigue set in but no big deal. I have been <.1 for 2 years now. Next month my 6 month Lupron shot will start wearing off and I will stop Zytiga. Then the nervous waiting starts.

[jjpeabody in reply to keepinon]

Thanks for the great information keepinon, the incontinence information is important to me in helping my understanding and decision process. I sincerely hope the best for you going forward and peace for you especially during this near term transition. Jim

[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 spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/26/2021 11:26 PM EST

[jjpeabody in reply to j-o-h-n]

...quickly john, I replied to your post but looks like I replied to my own post instead. Thanks again.

[jjpeabody]

Hi John, thanks for your reply. I will be meeting with a Urologist at Mayo to go over my concerns re incontinence and late side effects aided by the appreciated posts like yours on this board. My R.O. at Mayo has 25 years experience, not as "forecoming"/informative as I would like, but there is an expectation on my part that he is a good R.O. and is associated with Mayo. The M.O and urologist I plan to consult prior to SRT commitment appear top rated and recommended. Thanks for re-replying on this topic. Before my post I did a search but did not initially see a lot so went ahead and posted, I now see the "related posts" section below and have received good post like yours. "I once new a man in Abeline. He took all his clothes off and jumped in a pile of cactus. I asked him why. He said it seemed like the thing to do at the time."...kind of like SRT. Best of luck going forward John, Jim

[j-o-h-n]

Hello jj,

I once met a guy with a tattoo on his bald head of a very large Mermaid......I asked him why the tattoo? He said it was New Year's eve and seemed like a good idea at the time.....Hope all goes well for you.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/27/2021 12:07 PM EST

[SmpQuindio]

I am 61 yo, I had an open RP March 2016... (Gleason 4+3, N0M0)preop PSA 7.5. My PSA went down to zero then started creeping up to 0.5 at the beginning of 2020. The oncologist sent me to Salvage Radiation, after 36 sessions that ended in April 1 2020 my PSA has been undetectable for the last two tests, During the treatment I felt fine but for the last month I needed to be close to the toilet because the urge to go could come on suddenly. That lasted about 6 -8 weeks post treatment

Since Oct I have had rectal bleeding from radiation proctitis. I have been to the GI who has me on suppositories and they seem to be working. In all I consider those as minor short term inconveniences for a better long term outcome . I am not nor ever have been on ADT. Good luck I hope that you have a great outcome .. 👍

[jjpeabody in reply to SmpQuindio]

Thank you SmpQuindio for your reply, experience, and especially your overall evaluation of the treatment. It is definitely good information to know. Best of luck going forward and thank you, Jim

[bldn10]

FWIW I had SRT in 2016, 14 years after RRP and slowly increasing PSA. No issues during Tx and 2 years thereafter. Also no PSA! However, in 2018, much to my surprise, I began to have some leaking. Not terrible, not even using pads, just annoying. I assumed it would pass but it has not. Odd how it can 2 years for radiation damage to appear. Or maybe it's unrelated. The main point is that I was deemed to have systemic disease that would eventually kill me but it turned out I just had 2 spots in the bed that SRT seems to have eliminated. It's never too late!

[jjpeabody in reply to bldn10]

Thanks bldn10 for sharing your experience and thoughts. I am on Lupron at 5mths PSA <.1 and testosterone 21 and looking into having SRT to bed and PLN +ADT. I will be posting that final decision and the treatment as it happens. Good luck