Radiotherapy following hysterectomy and chemo

Hi - I had hysterectomy and then chemotherapy. Afterwards I had 25 sessions of adjuvant radiotherapy. It wasn't easy but it was doable. I got tired from the travelling, I had bad diarrhoea and some nausea. But I would do it again and trusted that the consultant would not have recommended it if it had not been necessary. It was all about giving myself the best chance to avoid a recurrence. I am now 4 months post treatment, bowels are settling with adjustment to diet, no nausea. I bit achy and fatigued still but could be from the chemo. I too have neuropathy from the chemo. I found chemo affected my whole body whereas the radiotherapy mainly was upset tummy.

Hi Griselda, I had a hysterectomy and then 25 radio plus 2 brachy as an insurance policy for a “technical” stage 2. Travelling back and forth 5 days a week (except for bank holidays) was tiring but ok - I drove myself for every radio session. I was warned that I may get some tiredness and bowel issues by the end of week 2, but was also given a leaflet with dietary suggestions to help minimise bowel disturbances. I kept a close eye on myself, but I actually didn’t get any bowel issues till week 4 - and it was only a bit of wind and urgency, and no diarrhoea. No bladder issues, no neuropathy (I don’t recall these even being mentioned as at all likely). The dietary restrictions were annoying but sensible and doable, the travelling dominated my life for the 5 weeks but was doable, and the few side effects tolerable. All a little bit of a nuisance at the time but I’m so so glad and grateful that I had it. I’m not sure that calling it an insurance policy goes far enough. Because to me it also brought peace of mind and confidence that I wouldn’t have had otherwise. Given my diagnosis (stage 2) I wouldn’t have wanted not to have had it. My treatment finished in May and the bowel side effects were gone within 2-3 weeks. Some tiredness persisted afterwards - but then again I did also have covid in August so could have been from that too. I do have osteopenia from the radio (was at risk anyway because of my hypothyroidism) but hopefully the calcium supplements I’ve been given will remedy that. I feel for you that you already feel a bit worn down from the chemo, and my situation wasn’t the same as yours. I hope you’re able to make a decision that’s right for you. 

Thank you for this and for being so positive. It is mainly the fear of cystitis, which appears to be a common side effect, that is making me pause and reflect on whether I need to do this. It is difficult to judge how many women do suffer from it as a side effect. That and bowel difficulties have been a dreadful problem at the end of the chemo and I am not fully recovered. The idea of starting it all over again is frightening. I am 79 and don’t want to spend my last few years with little quality of life caused by the side effects

Hi again Griselda, could I just ask where you heard or read that cystitis is a “common” side effect of pelvic radio? I understand it might happen but I hadn’t heard it being common. Before each radio treatment (which only lasts a few minutes) I was given a mini CT of my bladder to make sure it was at least 40% full - and my understanding is that the urine helps protect the bladder and also the bowel. If it wasn’t 40%, they’d send me to either drink some more or I’d lay on the table a bit longer for it to fill sufficiently.

It is mentioned in all of the advice on Radiotherapy from MacMillan and Cancer Research . My consultant also said it was a known

Side effect unfortunately.

Hi Griselda, I’ve just looked at what it says on the Macmillan site about side effects from pelvic radiotherapy and it says that “pelvic radiotherapy can irritate the lining of the bladder” and that this may manifest itself in six possible ways, one of which may be a burning feeling when passing urine. I cannot see any mention of it being a “common” side effect. A known possible side effect isn’t the same as saying it’s a common side effect. The Macmillan site also gives advice on what we can do to help minimise bladder irritation- drinking more fluids - more water in particular, limiting or even avoiding coffee. tea, hot chocolate, fizzy drinks, alcohol, acidic drinks and drinks with artificial sweeteners. So there’s things we can do to help ourselves. I’d imagine Cancer Research would say similar things. 

When one’s bladder is already irritated I guess it’s a numbers game so I can measure the risk against the benefit. They have to list all of the side effects, which then becomes off putting. Percentages would be interesting.

Thank you for responding so positively.