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Late effects of radiotherapy

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KarG
Late effects of radiotherapy

Hello,  I’ve just registered to join this forum.  Over the last few years I’ve read many of the posts and felt the empathy and support that comes through from all the contributors.   I’ve finally made the move to write my own message.  Firstly, I should say that I feel I am very lucky, a survivor - so far at least!  I was diagnosed way back in 2001.  The staging before my Wertheims hysterectomy operation was Stage Ib1.  However the analysis afterwards showed that lots of lymph nodes were affected and also my womb.  I had chemotherapy and radiotherapy without any real problems although I did start to feel quite sick towards the end of the radiotherapy treatment cycle.  I bounced back quickly - I was only 41 when I had the operation.   Eight years later, in 2009 I had a recurrence - cancerous para aortic nodes.  The only indication of this was incredible back pain, by this time I had of course been signed off as clear of cancer. The surgeons operated and I had another cycle of chemo and radiotherapy.  

 

 Since that time I have been healthy, stayed very active and basically got on with life.  I don’t see the consultant any more having long ago agreed with him that I should contact the team at the hospital if I felt ill again.   I have, however, in the last 8 years or so, begin to have lots of bowel problems, ‘urgency’ (very urgent !), severe diarrhoea, bloating and extremely painful stomach ache which doesn’t seem to be triggered by anything in particular except perhaps oily or spicy food.   When I had my operations over 10 years ago nobody mentioned the possible long term side effects of radiotherapy and I suspect that that is what is causing my problems.   I got hold of the really helpful Macmillan booklet about it and although I’ve tried to draw my GP’s attention to it and asked about bile acid malabsorption, etc. she seems to think this isn’t the cause as my symptoms are what she calls ‘episodic’ rather than regular.  I’ve read that some women posting on the forum have actually been referred to post radiotherapy specialists and even had a confirmed diagnosis that their problems are caused by late effects of their radiotherapy treatment.  - My question therefore is - were your symptoms an every day problem or did they hit you randomly ?   I’ve had a gastroscopy which showed a completely healthy stomach ! and am waiting to have a gall bladder scan but somehow I don’t think that it will provide any answers.   I’d really welcome your views if you’ve had similar experiences.  

Karen

WendyJE

Hi, I can't comment really as I'm only just coming up to a year post treatment but I have also used the pelvic radiation disease website, they also have a forum you can join. Just thought it worth mentioning if you've not come across it yet.

Hope you get some answers x

No missed or abnormal smears. Odd symptoms started in April 19.

Diagnosed with Adenocarcinoma 2b with one lymph node involved on 1/7/19.

Started 11 weeks of chemo on 15/7/19.

Started 25 external radiotherapy on 26/8/19.

2 brachytherapy and end of treatment on 6/10/19. 

 

KarG

Thanks, yes, I have looked at that website.  It’s really helpful.  I’m really wanting to find out whether other women’s experiences of late rsdiotherapy problems are happening everyday or, perhaps like me, hitting me unexpectedly without any obvious pattern.  Many thanks 

Karen

Memagh

Hi Karen,

You really have been on a journey. It does sound like a type of PRD (pelvic radiation disease). I just thought I'd reply as I suffered with severe stomach pain, bloated stomach, blood in stools and bad bowel urgency for a period of three months. The only way I managed to get on top of things was to follow an IBS/low fodmap diet. There are lots of women left with IBS type symptoms after pelvic radiotherapy. I don't follow the diet completely but I am much better than I was. Some very random foods can cause my problem to flare up: Lettuce, apples, pears, doritos, ice-cream, chocolate, spicy food, greasy food, etc. I tend to wait until the weekend if I want to try something new in case it doesn't agree with me. This may not be at all helpful to you but it might be worth a try. 
x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

KarG

Thanks Maria, that does sound like a good idea.  I did keep a food diary for quite a while but to be honest as there seemed to be no pattern emerging, I  gave up, perhaps I’ll try to be more methodical and cut foods out before re- introducing them one at a time.

best wishes

Karen

EmilyR

Hi, I am three and a half years NED.  My bowel was affected by the radiotherapy and when I have to go, I need to go quickly not to put too delicate a take on it!  About a year ago, this became episodes of diarrhoea with lots of quite bad pain, bloating, urgency, etc - exactly the symptoms that you are describing.  These symptoms lasted about four to six weeks before my GP finally ordered a colonoscopy which, thankfully, was clear and my oncologist and gynae cancer specialist both think it is late effects of the radiotherapy.  The good news is that, at least for me,I can go for a long time without these symptoms and then have another attack that can last any time for one or two days up to about a week but I have never had it as bad again (touch wood) as the first time.  I have never been able to pin it down to any particular type of food that might bring an attack on but it does seem to be linked with times of stress for me.  I hope yours will turn out to be manageable also.  There is hope. x

ladyfarmer
ladyfarmer's picture

Hi Karen

I am right there with you, trying to navigate through the late term after effects of pelvic radiation after almost 9 yrs after treatments and looking for answers and possible therapeutics to help with them. My gyn relies on exams and PAP results about 100% and although all have come back good as far as cancer, my vagina is like a war zone and the older I get, the more after effects I seem to develop. (I am 63 yrs old and was post menopause when diagnosed with cervical cancer 2B. I had what appears to be the "standard treatment" for 2B with no spread elsewhere; 25 ext beam radiation - 5 HDR brachytherapy radiation treatments - and 4 Cysplastin chemo treatments (supposed to be 5 but WBC went too low and they decided I didn't need the last one). The 1st 2 yrs it was OK. I had to dilate 3x a wk and had minor spotting that went away within minutes of dilation or intercourse. My main after effect was IBS which I was able to control with diet and Immodium and some vaginal shrinking and tenderness. At 3 yrs one of my PAPs came back inconclusive as the lab tech couldn't distinguish between radiation damaged tissue and dysplasia so my gyn sent me back to the Onc Gyn who ran a new PET scan to be sure there was no ther cancers (there wasn't) and decided - in order to avoid difficulty determining tissue evaluation in yearly testing - to do a radical LEEP and laser surgery in hospital out patient and removed ALL damaged tissues he could see, admitting that it was difficult to distinguish between the radiation damaged tissues and possible dysplasia. He also informed me that the procedure removed most of my mucosa and I would have bleeding with intercourse and dilation from there on. He was correct, but it was manageable. More than before but generally "spontaneous" when tissue was disturbed and then it would stop within a few mins and no more bleeding until it was disturbed again. I attributed it to the lack of mucosa and the delicate tissue having blood vessels so close to the surface. Fast forward about 5 yrs and my vagina appeared to shrink and narrow much more, making dilation difficult and somewhat painful, needing to force dilator to position, and bleeding increased, though still was mostly spontaneous and would stop and not recur until disturbed, again, but I started getting some cramping after, likely due to need to force the dilator. I was only about 6 mos out from my last good PAP so was fairly sure it was another late term after effect but also began to devlop what has now been diagnosed (by my gyn and PCP) as radiation cystitis via two sets of Urinalysis and Urine Culture showing no infection, bacteria, or blood. Diagnosing IC or Radiation Cystitis is apparently via elimination of everything else that would cause the same symptoms.  My exam and PAP a month ago came back good but report showed:

Negative for intraepithelial lesion or malignancy

Reactive squamous metplasia

Inflamation

Hyperkeratosis

Mixed Cell Pattern

My Gyn texted me "Perfect PAP again! See you next year. Stay safe and healthy!"

Previous PAPs said things like "vaginal atrophy", "Atrophic Pattern", "Atrophy With Reactive Changes", etc. The addition of Hyperkeratosis was new. So, I looked it up even though the Drs weren't concerned and it, too, is a common late term after effect of abdominal radiation and can occur mos or years after treatments, same as the cystitis.

So, now I'm not sure WHAT to do. Between the pain of the Cystitis (to say nothing of the frequent urgency 24 hrs a day and mild leakage), the IBS (which has switched from IBS-D to IBS-C for some reason though I am able to manage it with fiber), and the vaginal chgs with increased bleeding and discomfort to pain with dilation, I'm never quite sure which is causing my current ab pain. I have discussed it with my PCP and she yields to my GYN in regards to anything vaginal but said that there are meds to try for the cystitis and I can try herbal supplements as well but it's mostly a chronic condition in which you just try to manage the symptoms unless it is severe and there is a lot of blood in urine, etc, possibly indicating a hematoma (which I have none).

So, I completely empathize with what you are dealing with and the frustration of getting through the cancer successfully and yrs later having to manage late term effects from the treatments.  I, too, do not regret the treatments and am thankful for their success however after beating it I surely don't want to lose my quality of life by allowing these late term after effects to take over my life - which at present, they are. I guess it's classic PRD that I am experiencing but there doesn't seem to be a lot of therapeutics available to help sufferers unless they are experiencing severe or life threatening symptoms. Beisdes my empathy and well wishes for you, I am asking those long term survivors out there who may be experiencing similar conditions for ANY advice to help manage these late term after effects at least to the extent of not affecting quality of life. Thanks for reading and all of my thoughts and prayers to eveyone out there on this journey, regardless of where you are on it.

slicknic

Hello Friends - I have some pretty severe damage from the radiation and here's a few things I've learned:

- I had my gallbladder removed, so bile acid malabsorption was definitely on my radar. The med for it is a powder you drink every day. I had to start small and increase my dose because a full dose caused severe abdominal pain. But it worked! No diarrhea. Unfortunately, despite taking it in the morning and hormone replacement at night, they started to conflict and I was getting bad insomnia and hot flashes. So I had to stop and have been taking an Immodium every other day but still get "breakthrough" diarrhea that there seems to be no rhyme or reason for. 
- Check your iron levels! I have a GI bleed from the damage. I started feeling tired, then my legs were bugging me at night (anemia can cause restless leg syndrome) making it hard to sleep, then I started craving ice. Turns out I was severely anemic and despite trying hyperbaric therapy, colonoscopy with cauterization and pentoxifyline, we still can't get it to stop. So I'm getting 5 rounds of IV iron infusions every 4 months. I tried iron supplements but they tear up my stomach. 
- If you ever do lose control of your bowels, I highly recommend period underwear like Thinx. Does a great job of absorbing. 
Good luck!

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