Late effects

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Hi all

I had chemo/radiotherapy last year that completed in May for anal cancer T2 N1 so am now 8 months post treatment. I think I was fairly lucky in the way I came through it -  it was not a good experience but I think judging from what some people say I was lucky not to have extreme problems. My 6 month MRI showed no evidence of disease. Great - although I can't feel excited as I know I can never again take things for granted! 

 I take Laxido pretty much daily as otherwise constipation causes painful toilet time but I range between diarrahoea on some days and acceptable kind of loose stools - better than constipation!!  I also have bladder leakage - not bad mind you but enough so that I need period pants or a pad. This is frustrating. I still feel fatigue on some days and now have started having an ache in my left hip/top of my leg that makes movement slower - so I often take paracetamol to help with that.  I have been referred to the 'late effects' clinic in Bath to assess.  I understand that some people develop pelvic radiation disease sometimes following treatment but from what I've read it all seems to be about 'managing' your effects.  I'd welcome anyone elses experiences/advice in all this!

Carole x

  • Hi Carole  sorry to read about your post Radiotherapy ‘left over’ issues.

    I have a completely different cancer (a very rare Skin Non Hodgkin's Lymphoma) so I have had a total of 45 Radiotherapy zaps as part of my treatment years (Between Sep 2013 to Oct 2015) and have been left with some long lasting medical ‘left overs’.

    Some of my treatment was in every lymph-node in my body so I li e with a reduced chance mine system so infections are part of life. Some treatment was in my Anal area so I have permanent damage resulting in various problems like not being able to sit long, bleeding that often means my FIT tests come back positive.

    To widen your search for people in the exact same position I would recommend you put this post up in the Anal cancer support group that I see that you have been active in for some time.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike - thanks for your reply.  I have read your experiences and have the utmost respect for what you have been through.  Mine pale into insignificance besides that!  I'll do as you suggest.  Thank you!

    Carole

  • Hello

    Please tell me about the late effects clinic in Bath. We live there too. Do you have to be refferred? My son's radiation treatment is about to start. He has finished chemo. We are worried about late effects of the radiation therapy and would be glad of some advice as tho what they might be and how to deal with them.

  • Hi Tannith B. 

    Its called 'late effects' after 9-12 mths I believe. However that said I believe the department at Bath also support people going through cancer treatment.  You don't say what type of cancer it was or which hospital is giving the treatment.  I had chemo/radiotherapy at BRI Bristol and the oncologist asked whether I'd like to be referred to the late effects clinic when I complained of fatigue/hip pain/bowel/bladder issues. The lady I was referred to was Hazel at BRI but when she phoned me she told me that Bath also run a clinic and so I went there.  To be honest I would think that if he hasn't had the treatment yet then its too early - you don't know what the effects will be.  It can be slightly different for everyone and the treating hospital team will manage all his symptoms throughout the treatment - and they are marvellous.

    I would suggest he joins the forum here specifically for his type of cancer and read up on tips to get through the treatment.  Radiotherapy is no easy thing but people going through the exact same thing will be able to give good support and advice.

    I wish him all the best for treatment.  At the end of the day the first goal is to get rid of the cancer and recover.  If you need any further info please feel free to ask.

    All the best

    Carole

  • Thank you. We live in Bath and he had several months of chemo at the RUH followed by surgery at the BRI just over a month ago. They didn't get everything out so have sent him back to the RUH for radiotherapy x 25. He has Thymus cancer so the radiotherapy will be to his chest. It is too rare for there to be much info on it on this site or elsewhere.

  • Hi - it sounds like he's been through a tough time already! I would also suggest phoning Macmillan and asking what help might be available for him.