How long after finishing your radioth... - Pelvic Radiation ...

Pelvic Radiation Disease Association

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How long after finishing your radiotherapy treatment did you start having PRD symptoms?

Sarah_PRDA profile imageSarah_PRDAPartner27 Voters
10
6 months - 1 year after treatment
9
Almost immediately
5
2-5 years after treatment
1
1-2 years after treatment
1
5-10 years after treatment
1
10+ years after treatment
0
not applicable/I don't have symptoms
18 Replies
jude-the-obscure profile image
jude-the-obscureCommunity Pioneer

Severe problems started about 5 years post treatment but IBS problematic before that and Diarrhoea every Sunday after 5 days treatment! (6 weeks RaRx in all)

SpaghettiBetty profile image
SpaghettiBetty in reply to jude-the-obscure

I find it impossible to say when ‘side effects’ from treatment stopped and ‘late effects’ started! I too had awful diarrhoea and IBS-like symptoms.

I had a Pelvic insufficiency fracture 4 months after treatment which according to my oncologist was “unheard of in someone age 30”!

ArtistFred profile image
ArtistFred in reply to SpaghettiBetty

I had same and I was gobsmacked when I got more pelvic insufficiency fractures back 7 years later...confirmed by an MRI as I recognised the pain. Bowels have been all over the place since I had the treatment (incl. Chemo, radio and Brachytherapy followed by hysterectomy) but since reducing my milk intake drastically at the end of last year, and making my own kefir, my symptoms are finally a little calmer. 🤞🏽

SpaghettiBetty profile image
SpaghettiBetty in reply to ArtistFred

I still get ‘twinges’ in the area where my fracture was if I’ve done too much walking/standing/lifting. Do you have regular DEXA (bone density) scans? I go every 2 years for one as they found I have osteoporosis due to the effects of treatment.

Great that reducing you milk intake has helped your symptoms. I am triggered by high fat foods but I had quite a bit of bowel removed so I don’t break down fats very well. I’ve not tried kefir before but I’m prone to SIBO (small intestine bacterial overgrowth) so not sure it would be wise for me.

Calm bowels sounds awesome 😊

HarleyQuinn82 profile image
HarleyQuinn82Community Pioneer

I think the bowel and bladder issues that started about 2-3 weeks into treatment never really went away, they just calmed down a little. However the back/leg pain, weakness and fasciculations started about 2 years after treatment.

Dogs_41 profile image
Dogs_41

My bowel incontinence has gradually worsened post radiotherapy 36 years ago and now makes me very anxious when going anywhere.

Romian profile image
Romian in reply to Dogs_41

Mine started right after radiation 23 years ago. Last year I had another radiation close to the first one location. It's not getting better. Now 7 months after radiation I an bleeding from the anus.

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to Romian

Hi Romian ,

If you haven't already, I would recommend speaking to your medical team regarding the bleeding.

We have a resources section on our website which includes guidance, for medical professionals, on managing gastrointestinal symptoms of treatment which you may find helpful to share with your clinical team.

prda.org.uk/wp-content/uplo...

Romian profile image
Romian in reply to Sarah_PRDA

Thanks a lot. I read the relevant parts of the practical management of GI symptoms. Very useful and in agreement with the treatment recommended by my physician.

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to Romian

I'm glad you found this useful Romian .

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to Dogs_41

Hi Dogs_41 have you seen a gastroenterologist who specialises in PRD? I see from your profile you've seen a colorectal team and your GP who have recommended certain treatments. If these aren't helping it may be worth getting referred to someone who specialises in PRD.

Happyretired profile image
Happyretired

Minor problems a few years after treatment however 16 years on I too have faecal continence issues that restricts my day to day life.

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to Happyretired

I'm sorry to hear that continence issues are restricting your daily life.

If you live in the UK and you would like to find a Gastroenterologist near you who specialises in PRD, the PRDA is happy to help.

Please get in touch and let us know your specific symptoms, your original cancer type and where you live.

prda.org.uk/get-in-touch/

andre-rieu-fan profile image
andre-rieu-fan

I had bowel urgency and incontinence from during treatment. Bladder leak was something I became aware of sometime within 6 months. Back pain - very severe - started early and an xray showed that 3 of the last 5 vertebrae were badly cracked. My age meant that some doctors talked about that as a cause, but I didn't have bad back pain before radiotherapy, I could take reasonably long walks and I didn't have the problems with lifting things which developed. I have not recovered from tenderness on pressing between navel and pubic mound. I am now slightly more able to contain bowel problems but only by eating a very bland (and frankly unhealthy) low residue diet. This is over 4 years from radiotherapy and brachytherapy. The quality of life I have now is very much lower than previously though I do have to remind myself that the cancer so far as I know is not visible.

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to andre-rieu-fan

Thank you for sharing your experience andre-rieu-fan

I’m sorry that your quality of life has been affected by the consequences of your treatment. You will find people with similar experiences in the community who I’m sure will be happy to chat if you write a post on the main page.

Skellige profile image
SkelligeCommunity Pioneer

Like several of you, I find it difficult to differentiate between the immediate symptoms, which were severe and sudden diarrhoea, exhaustion, and stomach pain. Later symptoms, popularly known the family as ‘Radio-tum, hit about a year later and manifested in a very slow gut, constipation, agonising wind and gut pain, followed by diarrhoea again (it does love that diarrhoea). Bouts could last a week... Thank heavens for that little Macmillan booklet on ‘late effects’

Sarah_PRDA profile image
Sarah_PRDAPartner in reply to Skellige

Thanks for sharing Skellige it's really interesting learning where people initially found out about PRD. The Macmillan booklets are really helpful, I'll pop the links here if anyone is interested in looking at them:

Managing the Late Effects of Pelvic Radiotherapy in Women

be.macmillan.org.uk/be/p-25...

Managing the Late Effects of Pelvic Radiotherapy in Men

be.macmillan.org.uk/be/p-25...

AlfredSaxon profile image
AlfredSaxon

I had External Beam Radiotherapy in 2015 following removal of my prostate in 2008. My problems started with bowel problems in 2017; this was passing of blood, increased wind and emptying bowels more frequently--this cured itself over a two year period. I now have radiation cystitis of the bladder resulting in blood in the urine, which I control with a product that I instill into the bladder with a catheter, and suffer some bladder incontinence