Possible longer-term effects of pelvic radiotherapy

[D_Cymro]

I completed 7 weeks of daily RT last year as the final step in my therapy for prostate cancer. I am still experiencing some minor to moderate effects on my bowels and have been told that I can expect some improvement over the next 12 months. I am keen to discover what others have found to be helpful in reducing frequency of going to the toilet and flatulence. Otherwise I am fine and grateful to have been able to receive such excellent treatment.

[HarleyQuinn82 Community Pioneer]

Hi, I had great advice from a late effects consultant which seemed to really help, linseed. Helps bulk up stool. Also turmeric is a natural anti-inflammatory and really good for gut health.

Other thing I was advised was loperamide liquid as that way you can trial different doses and change by small amounts till you find what’s right for you. Chat to your team or GP.

If symptoms persist I would suggest finding a gastro who has an interest in PRD to make sure they rule other causes out if you have diarrhoea, urgency, frequency, excessive wind.

[D_Cymro in reply to HarleyQuinn82]

Thanks very much for this. Until recently I had been taking Lepicol, which 'encourages normal bowel movement'. I took this to mean it can work both ways. I stopped a few weeks ago to see if it was helping me or not. I haven't detected much change! I have taken 1 tablet of loperamide when I feel I don't have access to a toilet during the day, e.g. when I'm out walking, and it's given me confidence that I can control things. I may seek more medical advice if I don't feel I'm comfortable with the way I settle down to otherwise.

[abcd123z in reply to HarleyQuinn82]

HarleyQuinn82 - are you able to share details of your late effects consultant? I haven't been offered one and am really struggling.

[HarleyQuinn82 Community Pioneer in reply to abcd123z]

Which area are you from? I had a search yesterday for late effects clinics around the country and I will post the links I found. If not a late effects specialist even just finding a gastro who has an interest in PRD can he so helpful! 👍🏻

[abcd123z in reply to HarleyQuinn82]

Thanks so much for the quick reply! In Sheffield.

[HarleyQuinn82 Community Pioneer in reply to abcd123z]

publicdocuments.sth.nhs.uk/...

[abcd123z in reply to HarleyQuinn82]

Thank you - I also just found this following your post. I would say that I was surprised that no one at Weston Park had mentioned this service, except I'm really not surprised at all.

[HarleyQuinn82 Community Pioneer in reply to abcd123z]

It’s so sad that there isn’t more joined up working even within the sane trust 😞

[jude-the-obscure Community Pioneer]

Good advice from Harley Quinn. I use loperamide capsules to stop diarrhoea and I find long acting Mebeverine twice a day is a great help. In addition I take Colpermin three times a day and if bloating and pain are really a nuisance I take 1 Buscopan (Hyoscine). All prescribed by my GP . I take a tablespoon of milled linseed on my cereal every morning but was advise by my dietitian to start with a teaspoon and to gradually increase it.

Loperamide works well but can send things into reverse and make you constipated so you have to experiment with dosage. One small capsule will often be enough but for severe diarrhoea I take two and then one after every loose stool. I rarely need more than three . Talk to your doctor about your own situation as we are all different. I have never tried the loperamide liquid but is sounds a good idea as you can adjust the dose little by little.

Worth being prepared for things to change over months/ years and use symptomatic relief accordingly.

As you say we are alive ( me 10 years on from initial surgery, 9 years from radiotherapy and chemo.) so we just have to manage the unpleasant side effects of treatment.

Worth monitoring food intake too! I cannot tolerate anything in the onion family for example and that has happened in the last 5 years. Oranges and their relatives are also off my list!

I had IBS before my radiotherapy so I started off at a disadvantage!

Best wishes

[D_Cymro in reply to jude-the-obscure]

Thanks. I'm resisting changing my diet too much as I like vegetarian and spicy food too much! Good to hear about approaches other than loperamide. I was hoping that after the treatment side effects had died down I'd be essentially as before but it now doesn't look like that. It's also good to know that medics may be able to help if I feel I need more intervention at some point.

[SpaghettiBetty]

Hi D_Cymro ,

Have you tried keeping a food diary to see if anything triggers it? It may be that you’re more sensitive to certain things now. It’s handy to keep a food diary as this is what a dietician/gastro would probably ask for if you did decide to go down the referral route.

I’ve found that things like onions and broccoli can ramp up the gas and anything high in fat (cheese for example) can make things worse.

Liquid loperamide and the dissolvable tabs are great 👍

[SpaghettiBetty]

....I really struggle with fruit and particularly fruit juice gives me terrible diarrhoea. Bananas have the opposite effect though and have caused blockages before now!

I discovered, to have fruit in my diet, if I made up a smoothie (with half a banana) it would balance things out and my bowel would cope ok with it.

[D_Cymro in reply to SpaghettiBetty]

Thanks for the suggestion. I do eat a very varied diet and given that I fear that it's going to be rather difficult to pin things down. I fear that pulses (which I love) are not good for me at the moment but I would say that my main issue is variability rather than a shift one way or the other. It's rather irritating and I'm hoping that with the best part of a year of possible improvement ahead before I have to resign myself to being in a new place, I am cautiously optimistic. It's great to know what approaches I could try in the future, though.

Thanks again.

[happyonaboat]

I also had RT (2016) as treatment for Prostate Cancer, and have suffered with bladder and bowel problems ever since. It's difficult to get help and I have, for the most, tried to 'train' my body to function in a way that I can lead as normal a life as possible. I've had some success, although it's taken several years, and I still have some difficult days. I was also advised to try Normacol to help control my bowel function, and also advised to try the Low FODMAP diet in an effort to counteract the SIBO (SIBO causes me excessive flatulence).

[D_Cymro]

Sorry to hear of your problems. I'm finding variability to be more of an issue than a significant shift one way or the other (though usually towards looseness). Thanks for your advice on SIBO, which I was not aware of as a condition. It fits in with what I know causes me difficulties (red lentils in particular).

[SpaghettiBetty in reply to D_Cymro]

Not sure how I managed to forget about SIBO! It’s probably because I haven’t had a bout of it for a while (touch wood).

It causes me terrible wind and my gastro has prescribed me refaximin several times which I’ve had reasonable success with.

I also had problems with loose bowel which was down to BAD/BAM (bile acid diarrhoea/bile acid malabsorption). I would definitely encourage you to seek help if your symptoms persist or are interfering with your daily life.

[D_Cymro in reply to SpaghettiBetty]

Thanks. I've learned a lot since posting my original question about PRD, and although I would not describe my current symptoms as anything other than moderately irritating at times, I'm aware that things could well change over the next few years and it's good to know what approaches I could try from those who have experience. GPs can't be experts in everything - as I found out when I hurt my knee - so this forum is wonderful for me. For my part, I would be only too happy to share my own experience of being treated for an aggressive and advanced prostate cancer with surgery, hormone treatment, chemo and radical pelvic radiotherapy for the benefit of other 'survivors'.

[Memagh]

Hi, I can see from your posts that you're really not looking to change your diet but for me that's what has a made a massive improvement. Sadly I am now following an IBS type diet with very low fibre. Sweetcorn, mushrooms, onions, lettuce, cabbage, garlic, broccoli etc etc are terrible triggers for me. High fibre cereals, brown bread, lots of different seeds are also a big no. The list goes on! I am hoping that at some stage I will be able to re-introduce these back into my diet. Apart from food, peppermint capsules, high strength turmeric, pro biotics and decaffeinated drinks are truly my friend. I hope things improve for you soon.I've had 25 RT, 4 brachytherapy and 5 chemo.

[Jimbo65]

Good luck on your road to recovery. Talk to your team about diet and exercise. I found wheat to be a trigger for wind so I tend to eat gluten free where I can. Pilates is a good exercise regimen that can help with circulation as well as regaining strength and flexibility. Also don't forget pelvic floor exercise - it's a man thing too! I wish you all the best on getting your body back to a new normal.

[D_Cymro in reply to Jimbo65]

Thanks. I'm now able to do more exercise as the effects of my hormone treatment finally wear off, and that definitely helps. Very recently I compiled the latest stage of my trek round the coast of Wales - just over 100 miles with a loaded rucksack. I felt the mental challenge was much greater than the physical, and only needed to take immodium 3 times over the 12 days. I had to watch my diet to reduce my need to run behind bushes, but as they were plenty of those about I could enjoy the luxury of not being embarrassed about it.

[aliceoneill]

Hi D Cymro Great to get so many answers to your questions. I an new to the site and a little confused with the answers.

I have cervical cancer, had radiation and brachytherapy ,2016 but unfortunately it travelled to my lung. I was with my specialist this week and discussed constipation and then diarrhoea with no control. He felt sorry but nothing he could suggest as its not his field. I have to have high fibre for the constipation , if I stop that I will get a blockage. Anti diarrhoea tablets will cause constipation. My diarrhoea comes out of no wherevwith me being incontinent, I think they call irmt an overflow.

Going on holiday this week , travel makes it worse but I won't let it take over my life.

I fo a lot of excerise and that I believe helps a lot.

[D_Cymro in reply to aliceoneill]

Hi. Very sorry to hear of all the awful things going on for you. Although I have had some eye-watering doses of radiation when I had the area below my bladder treated - along with my lower bowel - and most of the lymph nodes in my pelvis (I requested a copy of my treatment plan, so I know!), I think I've been relatively fortunate in terms of side effects. I find that fermented foods like sauerkraut and miso (which you can drink in soup form) help to keep my insides as normal as possible, though I still get a lot of mucus, wind and occasional urgency. Lentils are often off the menu, particularly if I don't have access to a WC. Being active definitely helps.