Hi have just found this site and hoping for advice.
My husband received 33 sessions of radiotherapy to the prostate bed for recurrence of prostate cancer.
Five months later, in March of this year he started bleeding from the rectum every time he has a bowel movement or passes wind, he is also having to go up to six or more times a day.
He also suffers pain on passing water and has been told he probably has bowel proctitis from the radiotherapy.
has anyone else had this or have any advice please. Would be grateful to hear how you are coping.
Many thanks
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Celticgirl1888
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Hi there, I had a similar experience. It is 30 months since my radiotherapy and my symptoms have moderated. Rarely any bleeding or pain passing urine. I haven't passed blood from the rectum but still have problems with my bowels.
I would urge your husband the get advice from his professional as soon as possible for reassurance and or treatment.
Hi. I had radiotherapy (33 treatments) targeted on my positive pelvic lymph nodes along with precautionary treatment of my prostate bed 3 years ago, after surgery and chemo. My bowels have been affected significantly along with my bladder. My urinary symptoms are worse and worry me more because they seem to be progressive, so I'm now seeing a urologist to see what can be done. I occasionally see traces of blood in my urine but not in my 'motions'. This community is wonderful in providing support and advice. Don't suffer in silence - you can get help.
Hi thank you so much for responding. It’s so awful that so many are suffering in this way, but if anything, at least my poor husband isn’t alone in this now.It is worrying and isolating when you think it’s only happening to you and everyone on here is so supportive.
We really appreciate everyone’s advice and support.
Hi, I had anal cancer and chemo + 30 radiation sessions in 2020. The cancer was killed but the burns from the radiation caused profuse bleeding and frequent bowel movements. Not to speak about the pain. I got very anemic, so I was prescribed 60 treatments in a hyperbaric oxygen chamber. You just lay down and breathe pure oxygen. It helped little by little and the bleeding stopped. This is the best and least invasive treatment, but the equipment is not available everywhere. Get a prescription and even if you have to travel daily 5 days a week, it’s worth. The bowel movement frequency and diarrhea can be managed a little by monitoring your food intake: no fiber, fat, no raw veggies and some low fiber fruit, no caffeine and milk because I am lactose intolerant. Not very hot drinks and of course nothing spicy. I always have Imodium instant dissolve on me. I have proctitis and not much can be done. If I have to go somewhere I don’t eat hours before, sometimes I have no food for 15+ hours. The record was 22 hours. Does not bother me. Good luck.
Hi Romian Thank you so much for sharing your story and your advice. Unfortunately HBOT is not available on the NHS can only be provided privately and is a long way away from our home so not accessible.
It does seem there is very little that can be done about proctitis. So far the medication hasn’t worked and we are a bit concerned about having the laser treatment that can cause more problems than it helps.
Like you, if we have hospital appointments and blood tests to go to we just don’t eat until we get home.
Just wondering if it’s safe to take Imodium on a daily basis because leaving the house is just impossible at the moment.
Yes, it is OK to take Imodium every day (or Loperamide as it is more correctly known). The GP vaguely suggested it for my husband's terrible diarrhoea and I was fearful of him getting constipated (which would not help) so, instead of telling me it was fine to have every day he let it drop and suggested nothing. Then a friend who has IBS told me she takes one or two every day. So we got my husband on to it and up to three a day before the diarrhoea settled. He now takes two every day and is much better. Still bleeding from the Proctitis though!
Thank you so much for responding. My husband is experimenting with the loperamide now and we are trying to get the balance right.
He has tried two a day but found he was becoming constipated and having to strain, which caused more bleeding. At the moment he is taking one every other day and that seems to be helping a little. But because of the constipation he is reluctant to take it every day. But he hasn’t been to the toilet again today, so I think it will take a while to get it just right for him. Likewise he is still bleeding from the proctitis. He is also having more leaking of urine, when prior to the radiotherapy he was absolutely dry. He has never stopped his pelvic floor exercises and still does them every day but it isn’t having any effect unfortunately.
It is pretty miserable for him at the moment although he doesn’t complain but he does get frustrated that nothing he does seems to work. I just hope that in time things will improve for him.
I am so sorry that HBOT is not covered by the NHS. In the USA it is. I am no longer there. I live in France now. I know of no other treatment.
According to the diarrhea group Imodium is safe even up to 8 a day. I take it as needed. For the HBOT to be effective you need really 60 treatments. I wonder what they do in the UK about diabetic non healing wounds. Most of the people treated were diabetic. This treatment is very popular with the holiwood crowd and the athletes, because it’s advertised as rejuvenating. There is private equipment in Beverly Hills and elsewhere where the rich go.
It’s not good over here they only approve HBOT for incidents of necessary life threatening decompression, believe it or not.
As for diabetic wounds that’s a really sore point.
We have a relative who has open ulcers caused by his diabetes and for which the treatment is not much improved from medieval times as far as I can see.
At one time our NHS was the envy of the world but unfortunately it’s falling apart now, very sad really.
I had radiotherapy to the bed of the prostate in 2015 and have suffered late side effects. Bowel proctitis was one problem, the usual symptoms, passing of blood, wind and more frequent emptying of bowels. The symptoms stared in 2017 and have taken about 3 years to abate, its virtually no problem now; I did not get any advice from NHS on medications that might help the problem; an examination of diet might be one route and late onset of glutin intolerence needs to be considered.
I have suffered from radiation cystitis, which damages the bladder and causes bleeding from the bladder ( somtimes serious) and incontinence. If your husband gets this condition there is product that can stop the bleeding, it was called Cystisat, its now called Hyacyst this being the commercial name, however the active product is Hyloronic Acid. Application is via thin catheter into the bladder, the product is 50ml of liquid. I have been taught to self applicate at home and do this every 6 weeks, its not a permanent fix so has to be done continuously--Your urology dept should know about the problem.
Patients do not receive enough information about the damaging effects of radiotherapy, particularly when considering using it on the bed of the prostate---a detailed discussion is required about side effects versus continuing surveillance, or taking the hormone based medication. There is too much of a rush to give patients radiotherapy. I hope this helps
Thank you so much for your response. It’s really helping to know my husband is not the only man on the planet to be going through this awful situation.You’re quite right about getting no advice from the NHS, neither did he.
The only information or advice we had was from contacting Prostate Cancer UK and speaking to one of their nurses.
It’s really good to know this bowel problem might eventually improve and he is suffering pain on urinating
which he says feels like peeing glass.
He still does his pelvic floor exercises and he was dry, but recently he has started to leak when he walks, so he is finding that a challenge at the moment.
AlfredSaxon, they certainly don't explain the terrible side-effect of radiation cystitis! My hubs had RALP (2014); IMRT (2016; and the radiation cystitis symptoms started appearing in 2019! He had several cystoscopies & removal of scar tissue. Things would improve for a while and then bleeding again. He's 79 & using 24/7 Foley, but just a couple weeks into this & yesterday lots of blood & small clots appeared in urine. ER was our only choice. Flushed bladder. Know it will return. Suprapubic catheter requires surgery, and I fear my husband wouldn't tolerate well at his age. Already weak from everything he's been through, has cognitive decline beginning, so fearful of anesthesia for surgery. It's an absolute nightmare for him -- and me, his only caregiver, married almost 59 yrs.
oh love my heart goes out to you both. It is awful isn’t it, just watching them suffer and feeling so helpless although we do what we can.
I don’t think the possible side effects are fully explained and once they start, there seems to be little knowledge about what to do to alleviate the symptoms.
It seems to be a matter of just go away and get on with it.
We send you and your dear husband our best wishes and prayers and hope that things will improve for you both.
Only people who experience this dreadful delayed effect can appreciate how horrible it is. There aren't any options, really, at least for a man my husband's age (79). Thanks so much for your understanding and good wishes, Irene
"Patients do not receive enough information about the damaging effects of radiotherapy, particularly when considering using it on the bed of the prostate---a detailed discussion is required about side effects versus continuing surveillance, or taking the hormone based medication. There is too much of a rush to give patients radiotherapy."
Hi I couldn’t agree more. My husband had a robot assisted radical prostatectomy in 2018.
Two years later with a rising PSA he was prescribed 33 sessions of radiotherapy to the prostate bed.
5 months after finishing the course he started having rectal bleeding and pain on urination.
He has been diagnosed with bowel proctitis and radiation cystitis. He now has urgency and diarrhoea all of the time and bladder leakage.
He has opted not to have any vowel treatment at this time due to the position of the lesions and the possibility of more tissue damage trying to rectify the damage already done.
They don’t give enough information about the possible side effects but I guess it still has to be done if there isn’t an alternative.
He is also taking Zoladex implants every three months, but thank God we keep on going the best way we can.
Hello, I had radiotherapy after prostate cancer surgery, and later had rectal bleeding which started 14 months after radiotherapy ended. I spoke to my GP who referred me to a consultant gastroenterologist who suspected the bleeding was related to the radiotherapy. I then had a colonoscopy, under local anaesthetic. During the colonoscopy they identified radiation scars which were causing the bleeding which they cauterised with a process called "Argon Plasma Coagulation" (APC). The bleeding stopped soon after that. I am now taking a daily stool softener (prescribed by my GP) and since the colonoscopy and APC I have not had a recurrence of the rectal bleeding. However, both the consultant, and people on this and similar forums, have told me that it can recur and if it does a further colonoscopy plus APC will be needed.
Hi AngusThank you so very much for your response. Chris has received an appointment for a gastroenterologist at the end of this month, so fingers crossed that Chris may be a candidate for APC.
Your story has given us some hope that it can improve and so glad it has been effective for you.
Hi just to say I agree with others who have said that not enough is said about the potential effects of radiotherapy v other options. My very active 79 year old husband had radiotherapy for prostate cancer in March 2020. He opted to go on a trial which meant he had twice the radiotherapy strength in half the time. Cancer cleared - PSA was not particularly high. In March this year started getting horrible symptoms which we thought were simple UTIs - burning pain when urinating, debris in the urine, urgency to go to the toilet. He then started having problems with his bowels as well until eventually urine and feaces were coming out of his rectum - this over the course of 8 months. By this time he was diagnosed with a colovestical fistula - a hole between his bowel and bladder. Despite efforts to clear the infections so he could have elective surgery he eventually had to have emergency surgery. The bowel surgery went well and he has a permanent stoma unfortunately the urology side not so well as it was found the kidney pipe was attached to the bladder and things did not go according to plan. Consequently 4 weeks in my husband is still in hospital having got a supra pubic catheter alongside his stoma. I’ve often wondered what we could have done differently once we found ourselves in this situation but I’m still not sure!
so very sorry to hear of this it must be so distressing and worrying for you both. Like you we have pondered whether radiotherapy was the right choice, but in reality there was no other choice.
My husband had a radical prostatectomy in 2018 and fir the first year PSA was undetectable but a year on it had risen to 0.2 and was declared a biological recurrence.
The only option was to have radiotherapy to the prostate bed and then hormone implants.
At this stage we don’t know whether the treatment has even been successful, but when presented with radiotherapy or nothing, of course we said yes, but it does really seem very hit and miss, literally.
I do so hope things start to improve for your husband, it is just awful that so many are suffering from treatment supposedly designed to help them.
Thank you for your reply. Yes I can see you had no options. I first read your post some months ago when I was trying to find out what was happening with my husband - there’s not much written up about it as far as I can see. I also hope that things improve for your husband. It’s very distressing to see them going through so much.
I really hope that things improve for our husbands in the coming year and I hope that everyone suffering with these awful side effects has a better year.
Hello. Although I am not a man I think that pelvic radiation for cancer has the side affects that he is experiencing. I bled terribly after my cancer treatment ended. It was so bad that I had to have 40 hyperbaric therapy treatments and that helped me a lot. I have times that cause me to have several bowel movements within a short period of time. Fecal incontinence was an issue also. I am 6 yrs post cancer treatment. Best to you. I hope you find some answers.
thank you so much for responding, sorry to hear you are also having these side effects. I am just amazed that so many people have been affected by this treatment and there seems to be so little known about treating the side effects. Best wishes.
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