I had salvage radiation in 2014 after failed RP surgery in 2013 at age 69 for Gleason 9 PCa.
I’ve also had radiation of pelvic lymph nodes in 2015 , right femur in 2017, and a rib and clavicle in 2018.
A few years ago incontinence developed. I tried clamp, sling and AUS. The latter caused sepsis and had to be removed. Came close to dying! So foley cath was installed. Then a couple months later I had blockage in right ureter and sepsis so stent was inserted in ureter. After that I got osteomyelitis in pubic bone which was stopped with 8 weeks of antibiotics via IV six of those at home. So I now have stage III kidney disease!
Urologist tells me my urethra is badly scarred from radiation causing UTIs . As a result I get leakage around catheter necessitating the use of many briefs and pads daily and I get painful burning spasms. He tells me I’m not a candidate for Supra pubic catheter as it won’t stop leaking or UTIs .
So PCa has become a secondary issue for me as it’s been quiescent with psa at <.1 and T at <3.0. Thank God!
My story illustrates what the long term effects of radiation can be. I’m 80 and this is my life now. I would just say that radiation shouldn’t be taken lightly.
Bob
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Break60
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Thanks for sharing. I too have experienced the long term effects of radiation. I have been trying to warn the members of the forum about this. It is the radiation of the prostate bed that causes the problems.
Everything I’ve read about my experiences seems to indicate that the UTIs caused by a scarred urethra are not abnormal. In addition Foley catheters do in fact cause UTIs since they are foreign objects inserted in the body. I’m thinking that the scarring makes it impossible for the foley to fit tightly against the catheter tube permitting urine to flow outsides the tube.
I have devised my own sRT delay mechanism and knock on wood has been working for the latest 26 months. Detailed documentation in my thread entitled: "An engineer's Bicalutamide maneuvers" with monthly updates.
Magnus I had probably the most radiation you can get at the first attempt to stop my tumor against my rectum. Most of the guys had 2 or 3 locations I had 4 different locations each time and was told I could never have anymore ever. Yes I have rectal bleeding if I have a hard stool or soft stool. I have urethra issues that flowmax handles so far. There was no option given to me to replace radiation. What do you think anyone could do besides radiation. Surgery was not an option so they said. Finished radiation April 2019 and finished adt Feb 2020.
Sounds like I have something to look forward to. Shit. I had a look inside my urethra with a scope after some bleeding got my attention. It’s ugly. Looked like wheat flowing in the wind. Oh well I was given 8 to 10 to live in 2018 so if I make it 14 years like you I’m happy.
The objective of salvage radiation is cure. The objective of those other treatments after failed RP is disease control. I see from your profile you had radiation in 1992. Radiation today , 30 years later, is vastly improved. And salvage radiation is not comparable to radiation as primary treatment. You're comparing apples and oranges.
I agree I had salvage radiation to my hip area in 2014, vast improvement. But the long term effects are still the same, incontinence, leaking, blockage from scarring to etc.
Another thing is to get the best imaging you can because biopsy alone won’t tell you if your cancer has already spread beyond the prostate. My doctor was unable to get clear margins because the tumor was too close to the bladder neck. You need to give yourself the best chance for a cure without having to resort to SRT. Just my opinion. I’m no doc !
Sorry to hear of all the complications; we have similar histories and I’m one year younger with worsening incontinence. In 2019 I experienced blood In my urine. A TURP revealed moderate to severe bladder radiation cystitis. 5 years post prostate bed IMRT. The gift that keeps on giving? I’m sure the multiple trans urethral procedures exacerbated the incontinence. Your difficulties in attempting to deal with your incontinence have caused me to rethink AUS. Think I’ll stay with the Depends.
I have the cystitis as well and my urologist said to not do the turp like you suggest. I’m still only 5 years into this crap and nearly 4 years post radiation. You are the first confirmation of the no treatment to the problem I’ve heard. Thanks
I didn’t have a non SOC dose of IMRT to prostate bed . I did have a large total dose on pelvic LNs but it was low dosage per tx to ensure peripheral areas weren’t treated.
Thanks....makes "common" sense.....not always clear exactly what treatments have been done when posts describe horrendous complications from treatment.
Similar to what my hubby (80yo) has been enduring for several years, now. The leakage around the catheter started recently and further reduces his QoL because he gets wet again. For him, the pelvic radiation led to tremendously ugly late and long-term side effects. Greatly limited activity, social life, and so on for the past 7 years and only getting worse. But what other option(s) did he have. ADT was intolerable too.
I hear you! I’m wet all the time . It really is embarrassing and limiting. Mine gushes out primarily when I sit . Tried changing size of cath and amount of saline in balloon . I was hoping that suprapubic cath would help but my Uro refuses to try it as my bladder is too messed up.
Thanks for your response. Hubbyy isn't on ADT for years now; it's mainly the radiation cystitis triggered issues. Lots of discomfort. Not optimistic; uro never offers hope.
Yes, no doubt, and I would have gone to a place with the most experienced doctor. My catastrophe was caused by terrible, egotistical urologist surgeons, and inexperienced egotistical radiologists at Walter Reed.
I went to one of the best and I remember the discussion with the surgeon. He actually called me at night. He said I can do it but it will be bloody and probably a colostomy. Now make your decision.
radiation is the issue I lost my father due to that. His hemoglobin started getting low and doctors said it’s normal after such treatment even hematoligist all looks okay and once my father got covid and it’s recovery he was diagnosed with blood cancer and he suffered so much after that. He never deserved all that . When from start he showed his prostate problem and doctor prescribed him a pill stating there is no issue let’s just keep track regularly then suddenly Doctor calling him and stating he got prostate cancer start of last stage 4th
Sorry to hear of your issues, Break60 (and others). Are there folks out there who have had radiation but a decade later still have not developed any urinary problems? Or is it inevitable to have problems, sooner or later?
Of course there are. Those who don’t have problems don’t talk about it.
Also, improvements in radiation technology are producing better results. To use your 10 year reference, there is already significant advancement since 2014.
It’s the most common of knowledge that radiation has improved in several ways in the last 10-20 years. The patients doing well not reporting is simple human nature.
Of course we only 'know things" by searching out and reviewing studies...and there are many re late toxicity after RT. Try Google and pubmed...don't need to question others here though some will also provide links to such studies.
Gleason 9 and prostate removed? Maybe Radiation might have been best first option. We had 39 EBRT as first choice treatment. Cure was not an option we were informed by Urologist so we dodged a bullet with RP off the table. No treatment comes without risks. I am sincerely sorry that you were not informed of big risk of incontinence with RP. And that you are suffering now.
Our Oncologist said it was a smaller risk of incontinence, with RT and so far no issues with incontinence.
More good luck than anything else. Now I understand that removal can result in so many complications. That little acorn size gland controls so much! Incontinence was his major concern. I am grateful and feel much concern for men who are suffering after RP. Some have low Gleason and are being guided to removal. It is horrible. Researching options for all treatment now. We do not take just one opinion anymore.
I did a lot of research but made a decision to “ get this out of me now!” without worrying about the long run. Lots of guys do this. And surgeons love it!
You bet they do. Ours asked what insurance we had! Here in Australia many use the public system. He operated at his favourite private hospital. He gave me a written report which contradicted his verbal advice. After the bucks bigtime as close to retirement. My faith in medicoes was dented. I volunteered at a public hospital and we were fortunate to see a good guy at our local cancer centre who spoke clearly about our options. I found it hard to ever trust a doctor again after the blatant misinformation we were given. 😥
Yep, when I refused RP almost 24 years ago my urologist came unglued. He went ballistic but calmed down a bit before I left. I had a Gleason 3+3 and wanted to wait but he refused my request for another biopsy a year later. There were two things back then that are different than now. The surgical procedure has improved. Back then I was told I had a 35% chance the cancer would return. I was also limited on the doctors and hospitals that my insurance allowed.
Sorry to hear about such severe side effects. But just to give some balance to all the negatives. I had Salvage Radiation 2018 to bed and Pelvic Lymph nodes. 6 years later, very little side effects. Perhaps urinary incontinence slight worse- 1pad/day. PSA stable at < .02
well that right there is scary. I made decisions uninformed about any long term side effects like that. I have done both proton and IMRT 6 years apart and I dont have any problems yet. Wish I knew some way to mitigate those SEs from coming on!
Sorry to hear this, Break60. I’m 76, had 39 sessions of radiation to my pelvic area 5 years ago, developed some radiation cystitis (which a surgeon showed me on a screen during a cystoscopy prior to installing an AUS) and in the past year developed a mild form of hematuria (a few drops of blood occasionally in my urine, first once every couple of months, then every couple of weeks). I’m now getting hyperbaric oxygen treatments, which are likely/expected to heal the damaged tissues in the bladder. The hyperbaric treatments are tedious (2 hours per session) but painless. Perhaps hyperbaric treatments can help you?
Never say never, I've had radiation treatments three times:
March 2016 SRT to Prostate Bed- IMRT 39x 70.5 Gya
July 2017 PLN IMRT - 45x 45 Gya
April 2023 PLN SBRT - 5x 40 Gya..
To date, no issues.
As london441 says, may be testimony to the advances in radiation oncology since around 2014. My radiologist (same one for all treatments) used her laptop to show me the treatment with the software used for planning. While I may not have understood the technical aspects, this layman grasped the complexity of the 3D imaging,, different beams, different strengths', different times, from different angles, the adjustments with imaging done just before treatment and during....you get the idea .
Does that mean some years down the road I'll have problems, who knows.
So, to those pondering a treatment decision these days involving radiation, ask your radiation oncology team to explain and show you how far the technology for both planning and treatment have come. It may factor into your decision.
Hello, I think you make a valid point. I remember being told once, and this is for those thinking about radiation , I have had head and neck cancer, IMRT, and proton for a prostate tumor , in addition to SBRT to bone mets. The quote came from a leading physician at MD Anderson. He said, while you maybe be able to buy the equipment you have to know how to make it dance. Not saying this is bullet proof but something to think about for the new guys. I did not stay local. I live in Georgia...MD and Ut Southwestern delivered mine. There are great research centers everywhere....Also , I am sure many have stayed local and done well, I just play the odds....Everyone take care, Blue Skies and Always a Tailwind ...Sky King and Penny (woof)
I had 37 rounds of radiation for prostate cancer. No effects until 5 years later. Radiation proctitis (dead cells) in both large and small intestines. Diet change, align pre & probiotics, and daily Metamucil. Limit 1/4 cup salad to avoid intestine irritation. Beware radiation damage can occur 5 to at least 10 years post treatment.
I guess I'm lucky considering, had radiation cystitis, got HBOT so far so good, two years. Had scared ureters, Dr. Jill Buckley at UCSD reimplanted them after shortening them up, supposedly she can rebuild the whole thing, At this point no bleeding no incontinence. I'm 79 and can do just about anything I want, go Jeeping, work in my garage. Hope it continues, I've gotten religion during this process, think that helps too,
First and foremost I am really sorry that the effects of radiation are impacting your lives. I really wish I could wave a magic stick and at least lessen the impact on you and your love ones.
We have all had to make decisions along this uncertain path and have had many forks in the road along the journey. I assume we all made the best decisions we could at the time based on the technology, medical advice and life style choices available to us. Unfortunately there is no Time Machine available to go back to those times with our 20/20 hindsight and have a “do over.”
Most of us at the time those decisions were made were at least partially motivated by the desire to extend life. Just the fact that you are writing on this forum to perhaps forewarn the next generation to consider your experiences in their decision making is really a testament that your goal of extending life was successful.
Sometimes we just have to play the hand we are deal based on our decisions. I guess I really am asking if you did not decide to do radiation back then and along your journey what were the other options you chose to not do at that time and why.
SOC in 2013 was RP, IMRT with HT if psa rose to .2 twice in a row. (My LNs were clear so I didn’t have IMRT to pelvic LNs until 2015) . OR seeds, OR IMRT. With Gleason 9 I was given the option of IMRT OR RP. Seeds were not an option due to prostatitis and BPH for many years before dx with Pca.
I also had many issues, ended up getting an ileal conduit which actually solved many issues. It took some getting used to but definitely a better quality of life!
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.
Agree with j-o-h-n on have a SPACEOAR if you have radiation. Sure it saved me from many complications. The downside of radiation for me was that it caused my myelodysplastic syndromes (MDS), a blood cancer. If I had know about that possibility when I started radiation, I still would have done it.
I had EBRT plus LDR Brachytherapy about 12 years ago. The treatments turned my bladder into a catcher's mit or the Uro called it "Atonic." I've been using intermittent catheterization for several years now with some hematuria and urgency but overall doing ok. Only ine UTI so far. It's a pain having to carry catheters around with me everywhere but tolerable. I absolutely didn't want a Foley because of the infection rate.
Hmmm…Interesting. I am about a month out from SBRT to two lymph nodes, one abdominal, one inguinal (sp?). Five intensive days to one node, then five to the second node. I have started having a LOT of trouble getting a urine stream started, and must continually push to keep it going - even with a pretty full bladder!
Have a MO appt this week; RO a coupla weeks later. Think I will bring it up to them and see what they say.
FYI when imaging showed two suspicious iliac LNs in 2015, I had IMRT to ALL pelvic LNS . If you have Pca in two you are likely to have Pca in all LNs. I’m surprised you’re being advised to have SBRT in an area so close to other organs. Is that SOC now?
Hi. No clue. I even asked if SpaceOar Gel would be warranted, as on node was somewhat close to my bladder. I was informed that it would not be needed, and the linac CT-Varian machine could handle it okay. Hope so! I get a PSA test to see if the SBRT knocked it back, and meet with the MO this coming Thursday and I will address the urinary issues then. If the PSA results are not great, a whole other discussion needs to take place.
I was steered toward radiation but I was scared by stories like yours. I chose HIFU instead. 7+ years later I am doing OK but not in the clear. My PSA has crept up to 2.8. I was recently prescribed finesteride but had to stop it after developing dramatic dental problems.
thank you for this “cautionary tale”…..further radiation may be recommended for me in the near future and I’ll have to decide whether it’s worth the risk or to stay with ADT ( potential to “cure” the PCA and develop a whole new problem set)….. won’t take the decision lightly.
Side effects?. I had five Radiation treatments in 2023 after a hematuria in my Bladder/Prostate and I felt this helped greatly in killing the agressive prostate cancer cells. My PSA recently went down to mid seveties from over 100. However, since the treatment my Penis has swelled up and I was told "may happen after Radiation - wear tight briefs!" After about a fortnight (?) the swelling went down but has since returned and also to my Scrotum. I have bilateral nephrostomies and so don't pass much urine through my Penis. Kidney flow is good usually RHS twice volume of LHS. I do pass a little urine and there is a taint of blood each time. However I daren't go back on blood thinners. As I had a DVT in my groin pre the Radiation giving me an expanded left leg I went to A&E to get advice on these symptoms which seem to affect my walking ability. No advice was given. Some reduction in the "privates" does happen during the night but as soon as I'm mobile it swells back up and is a worry for possible infection possibilities. I shower daily but the swelling makes it imposible to pull back the foreskin to thoroughly cleanse. I use teaspoon handle to somehow help get the shower water to flush. Not read anyone else has problem?
I had an immunotherapy go south last year. Lots of downstream problems. Cancer spread, Lymph nodes in back swelled up closing off ureters. Had nephrostomy tubes until about 6 weeks ago, may need stents. Lymph nodes near illiac crest swelled and closed off right femoral vein, had trouble walking. Eventually discovered DVT in femoral vein. by the time it was found, it was over 2 feet long. They removed the large clot. Am still on Elequis(blood thinner) and wear compression stocking. Walking is ok now. After DVT groin swells during day along with penis and scrotum. Like you it goes down at night. Local urologist doesn't know cause. I suspect that the stent they put in femoral vein when clot was removed may be putting pressure on lymph node affecting drainage and flow of lymph. Just a guess and I'm not a doctor. So far doctors haven't been much help. This week hope to consult a vascular specialist. The swelling is really uncomfortable.
PSA had gone from about 35 before immunotherapy to 285. At the same time the above was going on, had Actinium and Lu177 treatments with Orgovyx(3). PSA is now around 1.
Firstly can I say that I really hope your situation will improve from where you are at present. Sounds like you have been through the mill so far and we all hope there is some reprieve heading your way.
Secondly, and I hope that I am reading your post correctly. This issue you are experiencing is only to do with having salvage RT after RP. It is not applicable to a person who decides not to go down the RP path but rather just the RT and ADT path. I certainly hope that this is the case otherwise it causes us to all to second guess our decision making when it comes time to choose between RP and RT.
From my understanding, todays RT is so well targeted that the risk of damaging other organs has been greatly diminished. It has come a long way since 2014.
Yes it’s SRT which causes the problem since you’ve got no prostate to protect the bladder after RP. Plus I had positive margin and extra capsular extension near bladder neck. So SRT needed to extend further and in fact focused more on bladder neck; so I was destined to have the problems I’m having without knowing it back in 2014. I guess I should be grateful to be alive . I should not have opted for RP!!
I had surgery for prostate cancer in 1997 when I was 59 years old. 5 years later I had 35 radiation treatments because my psa was increasing. I was on a study and had to void my bladder before each treatment instead of drinking 8 ounces of water like everyone else. I wear a pad for minor leakage which usually happen when I lift something heavy. I really don't know how the study turned out but it partly worked for me.
I am saddened to hear about your difficult journey. I too had a G9 diagnosis but fortunately was a candidate for brachy. I was also prescribed also "aggressive" pelvic IMRT. Nevertheless, I opted for RT over surgery. Unsurprisingly, our medical system (Canada) did not offer a hydrogel spacer to limit radiation of the colon. I have no doubt cost played a role in their decision process and even now it is considered an experimental procedure here, despite the data from the USA. So much for universal knowledge. The treatment has been successful, so far and I am grateful. The collateral damage is RT proctitis which causes periodic bleeding. Although the doctors and technicians are fantastic, there was little discussion of the possible treatment side effects. I am not complaining but I empathize with your condition.
Had radiation also 32 rounds as spread to spine and thigh - had to drink vast amounts of water and lie deadly still - dont ejaculate anymore - vibrator only currently and I have size B breasts - how wonderfull Cancer is !!!!! - I guess we should be happy to be breathing though - kindest to all warriors
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