Hi. I have to decide whether to have External Beam Radiology following hysterectomy etc. But I am fearful of having bowel problems ie diarrhoea/ runny stools, especially as I have weak bowel control at the best of times.
I would love to hear from anyone who is or has experienced this problem and how they cope with it. Many Thanks
Hi Billings
I understand it can be a difficult decision to make.
I actually took a list of questions into my consents appointment and went through them one by one with the consultant. It did help as focussed the conversation on what I wanted to know rather than the generic information. Maybe this is something you could think about. Write down your worries and get them ready to talk through.
I remember being told that many people can have side effects during treatment but for most they will resolve within a few weeks of radiotherapy ending. Sometimes people do have effects that can persist and my consultant said that it is really hard to predict who will get them.
During radiotherapy I did have diarrhoea and also nausea- but once the right combination of medication was found- it enabled me to finish the treatment. I found my radiotherapists supportive. The planning appointment before radiotherapy ensures that the areas treated are as precise as possible.
My tummy effects started within a few days and persisted. It helped by following a restricted diet- low on fibre, bland foods etc. A lot was trial and error. I also had some bladder irritation- felt a bit like when you are getting a uti.
Macmillan toilet card and leaflet – Macmillan Orders This link takes you to some info and also a toilet card. If you take the card with you when you need to go out, most places will understand a let you access their toilets.
For me I was concerned about the side effects but I was more concerned with avoiding a recurrence. I remember being told it was far easier to prevent a recurrence than to treat one once it had happened.
For me the acute effects took a few months to start to settle. I had support from Pelvic Radiation Disease Association
I did develop some food intolerances particularly lactose, dairy and fibre. During my 12 weekly check ups I had support from my CNS to manage my diet. I kept a food diary and bowel chart to work out what triggered symptoms.
I am almost 3 years post treatment now. (Surgery, Chemo, Radiotherapy)- I do have some Late effects but do not regret having the treatments. They are on the whole manageable. I have had no recurrence.
Through my time on here I have spoken with many ladies who have had the treatment and feel like things have got back to normal within a few weeks of finishing. There have however been others that have lingering effects. With time it seems that some ladies do recover with time and where there are symptoms, they are manageable. For people who do have Late effects then there are late effects clinics that can offer support. There may also be some treatments that will help.
It can sometimes feel a difficult decision to make regarding having further treatment. Are you able to talk through your worries with your CNS? If it would help, perhaps give the Support Line a call.
External beam radiotherapy | Macmillan Cancer Support
The above link has more info.
Hope this helps a bit
Jane
