Long term radiation damage

Hi!

So I had stage 2 cervical cancer with lymph node involvement 9 years ago. At the time I had radiation/chemo and internal radiation plus surgical removal of ovaries (I was 26). I am luckily discharged now. However I am really struggling to get support from my Doctors now I no longer have my oncologists who understood my case.

My question is; do you know of any support out there that can help with long term radiation damage? I had a bad effect to my bowels (have to poo now at least 5 times a day) but now it's started to get even more frequent.

I also have some other bits that have been around since I went through everything, but they are starting to get more aggreivated 

My doctors just don't want to know basically and I feel like i'm now on my own and no one understands having to go through all of this at 35 years old :(

Thank you

  • Hello and thank you for posting, I am so sorry you are going through these long term effects of radiotherapy and feel that no one can help. 

    The Pelvic Radiation Disease Association (PRDA) https://www.prda.org.uk/  are a small charity who give support and a voice for those with PRD (pelvic radiation disease) which is a late effect of radiation therapy. They are able to offer information and support to you and health professionals and they work as a resource to improve lives those who have been left with these sometimes debilitating side affects.

    I do wonder if you need to see a different GP and explain your situation, discuss the PRDA and maybe enquire into whether you need a gastro intestinal referral for your bowel issues.  Some hospitals do have late affects clinics which might be worth enquiring about, you could be referred to them.

    I've posted this link to some o the PRDAs resources in case useful.

    Also, this forum on Macmillan is for those who have got through cancer and maybe a support to you.

    This is Jos Trust ( the cervical cancer charity) link to life after cervical cancer. 

    Take care Conway, and I'm sorry I have not been able to help you more directly. You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah.

     

  • Thank you, I really appreciate your help.

    I've decided to try and switch Doctors Surgeries to see if I can get more help that way also 

  • Your original Radiotherapy department may have a Late Effects Service as they are being set up all over the country. It might be worth giving your original department or your local radiotherapy department a call. All Late Effects service are self referall not just Health Care professional referall.