I have had a radical hysterectomy which found a serous polyp in the fundus. Since then I have had chemotherapy, which has left me exhausted.
Saw a different oncologist last week to discuss radiotherapy.
I have suffered with ibs for over 25 yrs, it affects my everyday life, in that ai have to go to the loo before I can start my day, otherwise it just happens.
Since my hysterectomy I've also experienced more urgency to pass water also waking up 2 to 3 times at night.
The Oncologist I spoke to said in light of the above, pelvic radiotherapy could leave me totally incontinent, which would be unbearable. But she has left the decision to me.
She also recommended brachytherapy, but as the polyp was in the fundus ( top of the womb) I don't see how that would benefit me!
Has anyone on the forum with severe ibs experienced any radiotherapy?
Thanks
Hi Grr
I understand where you are coming from.
My cancer was in 2022. I also had a grade 3 cancer. Once I had been through the surgery and the chemo the last thing I wanted to do was to do radiotherapy. I just wanted all the treatment to stop and didn't think I would get to the end. Being told it would be 25 sessions felt overwhelming.
Whilst it is true that in some people pelvic radiotherapy can have longer term effects, for many it does not and if they do have them they can be mild. I can understand the concern with already having IBS. I remember being told that they can not predict who will have mild temporary effects and who may go on to have longer term effects however IBS may in some people have some affect.
I have long term effects from my radiotherapy bowel and bladder. I have diarrhoea and go more quickly and more often. I follow a restricted diet to try to limit the effects. With my bladder I go more often and I have an irritated feeling a bit like before you get a UTI.
With a grade 3 cancer- whichever type there is a higher risk of recurrence which is why they recommend further treatment. Do you know what stage your cancer was and whether there was any LVSI? Where lymph nodes involved?
When chemo is recommended its to hopefully mop up any stray cells whole body wise. Whilst the cells may be so tiny they can not be seen on a scan- they could potentially travel through the body and set up elsewhere. If you had adjuvant chemo this would be what they were trying to do.
With adjuvant pelvic radiotherapy they are trying to mop up any stray cells within the pelvis. They are trying to prevent a recurrence in the pelvic area which is where many recurrences occur. For my it was targeted to the top of my vagina and to the lymph nodes.
I did not have brachytherapy as I was told that it was not necessary as I had no cancer cells found in my cervix. Where ladies do have it the purpose it to try to prevent recurrence in the vaginal vault. Whereas the pelvic radiotherapy covers the whole of the pelvis.
It is a difficult decision to make but having had a stage 1, grade 3 cancer and remaining free of recurrence at almost 3 years post treatment for me it has been worth it. Yes I do have long term effects but I do not have cancer. In the end I made the decision to have the treatment due to the look on the consultants face when I said I was considering not having it. She looked genuinely concerned. I did not talk percentages with my consultant but maybe that is worth asking. What are the chances of a recurrence for the serous grade and stage of cancer that you had- if you do or do not have the treatment. My consultant also said that it is better to have the treatment to try to prevent a recurrence than to try and treat one once it has happened.
It is a hard decision to make but I am glad I had it. Perhaps give the Support Line a call and talk it through with one of the nurses.
Jane
