I had two rounds of pelvic radiotherapy after a diagnosis of vulval cancer. 18 months after the second round my urethra has totally blocked ...by scar tissue?? I had to have a suprapubic catheter fitted in the middle of the night, it was horrendous. Is there any chance my urethra will heal and I can Dutch the catheter?
Dear Dannelchen
Hello and welcome back to our online community here at Macmillan, we hope you are finding it a supportive place to visit. My name is Gemma and I’m one of the Cancer Information Nurse Specialists at the Macmillan support line.
Thank you for reaching out to us this afternoon, we don’t underestimate how distressing this late effect of your pelvic radiotherapy may be. It’s completely understandable that you would want to know if it can be reversed. The honest answer is ‘sometimes’ and for some people. Usually scarring caused by pelvic radiation is a result of the healing from your anti-cancer treatments, and not something that would necessarily reverse on its own.
There are procedures that can be considered to ‘stretch’ the urethra, or indeed remove the portion blocked by scar tissue. Whether this is an option for you would depend on your own personal situation, and level of scarring.
As a support service separate to the healthcare teams, we are unable to give individualised advice or opinion, and always recommend reaching out to your own healthcare team for this. It may be worth considering asking for a referral to a urology specialist service to explore your options.
These late effects of pelvic radiotherapy are often termed ‘Pelvic Radiation Disease’. The Pelvic Radiation Disease Association are a wonderful charity who specialise in supporting people who think this may apply to them. They have produced their Best Practice Pathway, which sets out standards in how you can expect your side effects to be investigated and managed.
I see from your chats in our forums that you may be facing further surgery too, on this platform it can be difficult to fully understand what you are going through. If you think it might be useful to have a two-way conversation, feel free to give us a call or contact us via our web chat platform.
Ref/BG
