Long term side effects radiothearapy

Hi there!

yes!  I have bad back pain and odd twinges on right side groin too

just waiting in results for another mri on my back

the joys of the treatment I suppose xx

How long is it since your treatment ceased?

I have my next review in July,  but was told before that I can always book an additional appointment. 

Although the consultant examined me digitally and felt around all the abdominal and groin area on RH & LH side and was satisfied with everything. That was 1 month ago and at the time I had no twinges. 

I guess this is probably going to be on and off for a long time. 

Chemoradiation is powerful treatment. 

Hope all goes well with your MRI xx

Long term side effects can start many years after treatment. I know people that have side effects 15 years later. One of the best remarks made to me was ‘ it’s welcome to the new you.’ I am 3 years post treatment and have been discharged. After treatment my worst side effect was dystonic cramps very severe in my feet and legs, both legs and feet. I have reduced the length of time the cramps affect me not the frequency. I sleep very little always awaiting the cramps.

another effect happened between March and August last year , after my review in March. I had a minor stroke in June last year and on taken blood pressure drugs including a statin I felt something like a tiny pin prick in top half of my leg when walking. I took no notice until the third time it happened. It was a place I couldn’t see so with a mirror I looked for what was happening. I did not solve that issue but saw what I will call an horrendous rash( it is not a rash) all across my vagina area. Mortified I went to the doctor who called a senior doctor in and she was very thorough and sent me to the gynaecologist who sent me for an ultra sound scan, nothing found. Top gynaecologist sent me to Dermatologist, meanwhile whilst arguing with our senior male doctor at GP surgery about giving drugs out and no alternatives        He mentioned my ‘rash’ and said ‘ do you think it could be radiotherapy ? I said really after 3 years? He replied ‘ yes you had an extremely bad time and reaction, the worst i’ Ever seen.

finally got to dermatologist who asked me to wait as he’d asked another top dermatologist to join us as he wanted a second opinion.

i undressed, both dermatologists came in together and in less than one second they said in unison ‘ radiotherapy ‘.

it is burst blood vessels under the skin, it is inside of both the anus and vagina and on the outside of both. It’s like loads of joined spider webs. It is very unsightly. I cannot feel it and it does not hurt it is just there. Fortunately I cannot see it without a mirror but I did think that it would be awful for a young person to have this as it’s there for life.

another side effect is that my skin is very thin in the area and still breaks down. I use a barrier cream to protect the skin but when it breaks it hurts. My skin is extremely white and from diagnosis my consultant was more concerned about my skin than the cancer and I did have an appalling time for 6 months unable to sit or stand or wear any clothes for the whole 6 months. I was on high levels of morphine and had a complete mental breakdown. I am a strong business woman and my only thought was to get back to work which I managed after 8 months.

i am still alive and travel extensively in my work, finally got control of my BP, ditched the statin, nothing wrong with my cholesterol, and I am eternally grateful to our bowel screening service who found the cancer as I had no symptoms and would never have gone to the doctors. Sorry it’s so long.

Wow. 

All I want to say is Thank you for sharing your experiences!

I guess, after all you've been through, it has and continues to make you a stronger person. 

2017...................My original symptoms were those of Piles (Can't spell the proper terminology) After trying over the counter creams/gels and to no effect, I visited my GP who was unsure what the small external lump was round the anus. After a series processes it was diagnosed as T2 SCC which was the earliest stage of anal cancer and luckily hadn't spread. I was then put on a 6 week course of radiotherapy with chemoradiation weeks 1 and 6. 

Treatment completed Nov 2017 and was given the all clear beginning of 2018. 

Started with monthly reviews and now on quarterly visits. 

I just get alarmed when these twinges rear their ugly heads and of course I begin to think it's unrelated to the original diagnosis because of the area I encounter them (Lower RH abdominal) As I mentioned, my last review was April 9th this year and the consultant felt around the said area and found nothing to give her concern. 

Obviously, if it continues before my next visit in July, I shall book an extra appointment just to have it checked out .

Being an actor by profession ,we do tend to imagine lot's of things. Lol 

Once again, I wish you all the best and keep going!

Very Best Wishes 

John. 

Hi John, 

I completed treatment almost a year ago & have stiff, quite painful hips after sitting for any length of time, I also have coccyx pain & intermittent sciatica on my right side, all of these are alleviated by keeping moving, things just seem to cease up when I stop for even the shortest time! I also have these twinges you describe, on my right side it’s kind of in front of & towards the bottom of my hip bone, on the left it’s higher up, more towards my waistline on the side again though, the thing I can most liken it to is a stitch like feeling! I think we’ll all find it’s repercussions of the treatment but I’m going to mention this at my next appointment. I get my yearly scan on the 3rd June so keeping everything crossed for that. 

For once a furtive imagination isn’t a great thing eh? Lol

Nicola. 

Good to hear your 'good news' John.   What a good subject to bring up about the late effects of pelvic radiotherapy, not something I was told about!

However I am more than grateful to be here 22 months after the end of treatment, recent MRI and examinations all clear.

Like Justcoping I have very thin skin.  I was told I was given a very high dose of radiation and still experience soreness at times.   I have over the past few months had similar twinges in the back and hip area and more recently had sciatica which was helped by exercise.   My other problem is a slightly erratic bowel.

I don't know if I would have had the aches and pains anyway as part of the ageing process.   I consider myself a young 74 year old!    A few years ago I didn't expect ever to feel old but certainly do now at times!   Having said that I am not giving in!

Hope to hear more news from you and good luck with the acting.

Hello There. 

Firstly I'm so pleased to hear you're clear of that monster and keeping on with your life. 

We have to!

I'm most suprised you weren't made aware of long term side effects. 

I tend to get these twinges which I compare to a quick stabbing pain, which subsides and hangs about in the background waiting to attack again! At first I thought it was appendix! I have since been advised that I would certainly know if it was appendix problems!

I guess it's something we learn to live with and accept. 

My trips to the loo can sometimes clock up to 3 times & always in the morning!

Mind you, as my Mum always used to say "It's good to be regular"

I see your a Yorkshire Man. I'm originally from East Yorkshire (Hull)

Good Luck with everything and Take care .

Best wishes 

John 

Hi All,
Here we are  almost 18 months clear of the disease...
I was fortunate to have had a place on the Plato trial which has helped with the side effects being less severe.

More recently i have experienced really painful wind at night and some urinary incontinence. Not a large amount but i have taken to wearing  panti liners
My trials nurse has referred me to our local hospital that has a nurse who deals with the long term side effects of Pelvic Radiotherapy, who i saw 2 weeks ago. She was very thorough in her examinations and ordered several blood test, amongst others that were linked to a lactose Intolerance that hadn't been looked at since 2009 and finally a repeat Colonoscopy!!!
Has anyone else had a repeat Colonoscopy?? she explained that it was to look for any damage to the small bowel area, but i am really worried..
 Sue

Hi Sue. 

Firstly Glad to hear you're clear of the cancer .

As far as I know, I never had a colonoscopy (Although I probably did, along with everything else) In the "Tests" processes I had a sygmoidoscopy which I have to say was an extremely unpleasant experience and carried out by a rather unfriendly person. 

It's only natural to feel worried about having a secondary examination, but at least they're being thorough!

As I mentioned, the side effects I've been experiencing are frequent loo visits, predominantly in the morning, and twinges in the lower RH side of the abdomen. My consultant examined the said area, along with the "Digital Examination" and found no swellings. 

Keep everyone posted...We're all here to support each other!

Best wishes 

John 

Hi Everyone. 

Further to my comments about Long term side effects of chemoradiotherapy. 

Whenever you get any twinges or pains. How long do you find they last for?

For me, the current RH side of abdominal twinges have lasted for almost a week and they come and go, moving about but stem from the one area, but are not agonisingly painful, just a numb nagging sensation. 

Sorry to harp on about it,  but who, if anyone, has or is experiencing this in the same area as myself? 

Does it raise a serious concern for you? 

Best wishes 

John