Radiotherapy support

Hi Jane

I am due to have radiotherapy x25 then internal RTx2 after a high grade stage 2 endometrial cancer was successfully removed. I have had my chemo.

I'm really scared of the potential long term side effects of pelvic radiotherapy . It seems they are under reported. I have read lots of research ( not doom scroll!) to try and balance a decision in whether to go ahead. I've sent a list of questions to the oncologist. 

I don't have lynch syndrome but am awaiting a meer with genetics. Apparently at 48 this cancer was unusual 

Any advice/ research/ knowledge you have would be greatly appreciated. X

Or any advice from any one! X

Hi AL75, I had 25 x radio and 2 x brachy in 2022 for grade 1 stage 2. No side effects till half way through week 4 and then only mild (slight bloating and slight urgency). Digestion etc back to normal after a couple of weeks after treatment finished. No long term side effects and peace of mind that the area has been zapped which helps to temper any subsequent anxieties about recurrence, 

Thank you MarmiteFan59 

Did you have a radical hysterectomy too? 

I had a laparoscopic hysterectomy to remove uterus, ovaries, fallopian tubes and cervix. 

Thank you , so you had it all out too! Was your treatment to your lymph nodes? 

Hi again AL75, I was originally predicted grade 1 stage 1A so didn’t have any lymph nodes sampled when I had my hysterectomy. Because a few cancerous cells were found on top of my cervix, I was upstaged to a (technical) stage 2 and radio and brachy were recommended/offered as an insurance policy. It did cross my mind to wonder about chancing it without but then decided I’d rather have the peace of mind of knowing I’d done all I could to help prevent recurrence if any of my lymph nodes were affected. I have never regretted having it, though the travelling to and from each day rather dominated my life for 5 weeks. But I thought what’s 5 weeks in the grand scheme of things?! It soon went.

Thank you.

Did your oncologist talk to you much about possible long term side effects of pelvic radiotherapy? Did they factor in your decision? 

Yes indeed, of course - they have to explain the possible side effects - but they are only possible. For me, I’d rather risk the possibility of side effects and reduce the risk of recurrence. I was told that recurrence with this type of cancer is most common within the first three years, and I decided I’d rather do my utmost to prevent. And having the trestment has given me peace of mind which I wouldn’t have had if I hadn’t had it. 

Hi AL75

Well done for completing your chemo. I hope that you have not had too many effects and are recovering from the treatment.

I can understand your concerns about radiotherapy and I remember once I had got through the chemo, the last thing I wanted to do was to have another 5 weeks treatment. 

At my radiotherapy consents appointment I took a long list of questions with me and the consultant went through them one by one. I went ahead with it in the end because it was high grade. The consultant also said it was better to try to prevent a recurrence than to try to treat one.

I do however have long term side effects from the treatment- however they are more an inconvenience than anything else. I don't regret the treatment though.

Jane