Hi my name is Graeme, earlier this year I completed 20 radiation treatments for prostate cancer.
I was warned on the side effects but all went well with the treatment and 6 weeks post I only had minor symptoms. However at around 2 months I started to have lots of problems going to the bathroom, control issues and some pain. I have since been back for blood and urine tests, CT scans etc. and the confirmation is I have radiation cystitis and proctitis. The Dr seem to think it would self resolve in 4 to 6 weeks, but I am 3 months down the track and nothing much has changed. I have some medication to help with the pain, which is both in the prostate area and also the rectum/anus. Dr have given some pain medication and I have booked a session with colon rectal specialist for next month.
What I don't know is how unusual is this? Is a late onset of side effects normal and if so how long should they last? Starting to impact my mental health and I have lost 5 to 6kg in weight as I am not eating.
Hello @Graemefitz and welcome to our community 😃
Late side effects aren't unheard of. You might be interested to read this booklet on radiation therapy, that includes a section on side effects and lots of practical advice.
How far off is your appointment with the specialist? Be sure to discuss with them everything you are experiencing.
Cancer Council Online Community Manager
Thankyou for the reply and extra information, especially the booklet.
I meet with the radiation oncologist tomorrow, 2 Dec, then the Colon specialist 8 Dec. I also made an appointment to go back to the GP on 10 Dec to try and pull all the information and advice together into one treatment plan. It does feel like I have been bouncing between specialists & no one looking at the whole picture.
I have also placed call for some peer contact support.
I visited the Colon specialist this week, wants to do a flexible sigmoidoscopy next week to look around and see what the problem may be. Hopefully after that we can agree a treatment plan. I updated the Radiation Oncologist and GP, hoping the GP would give me a holistic view, with all the problems, my lack of sleep, pain management and weight loss but he was less than helpful. Told me that I should relax and I am getting the best people involved in my treatment. Not what I was looking for after 4 months of pain and no resolution. So after this procedure next week I may start looking for a new GP.
Update post the flexible sigmoidoscopy. Found that I have a hole in the rectum, possibly caused by the radiation therapy or the space OAR gel is the current consensus. Not great news.
Next step is another MRI to assess the damage and confirm treatment options, on anti-biotics for now to avoid the spread of infection.
But I can now say I am no longer a fan or could recommend radiation therapy as a treatment option.
June 2021 update. A follow up procedure in January to open up the hole in the bowel and perform a drainage. More antibiotics post surgery was the treatment and what the colon specialist thought would be 4 to 6 weeks for the whole to close turned into 4 months.
The good news is that now resolved I have put back on weight and pain has gone and control has almost returned to normal.
Whilst the bowel is now resolved and things are relatively normal, my PSA numbers which had dropped down to 0.42 in February, jumped to 0.95 in May and 1.8 at the end of May. I have just had a PET scan & some good news, no spread of the cancer outside of the prostate. No confirmation of why the increase in PSA so further blood tests needed.
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