What happens next?

How timely! Today, Macmillan Cancer Support has put out a report about the lack of information cancer patients are given about potential (long term) side-effects of treatment. To my amazement, for the first time, I heard the statistics for the number of patients who have had pelvic radiotherapy (which is what I had): one in two of them suffers from long term bowel and bladder problems as a result. Well, that explains why Nurse asks, "Any problems with your bladder or bowel?" when I go for my check-ups. It also explains why she looks surprised when I reply that I haven't.

I've said it before, but I think it bears repeating: patients should be told of potential future side-effects when they agree to treatment. That would be informed consent. Not giving the full picture does not, in my view, constitute informed consent. When it was suggested I have radiotherapy, all that was said was, "You don't have to have it, but it would be a good idea, just in case." The only information provided that there could be side effects was provided in the small print of the consent form and when I asked about this, I was told, "Oh, some people get side effects so we have to tell you about it". The implication was that only a few patients experienced problems.

Would I have agreed to radiotherapy if I'd known the real risks? Under the circumstances - I was told it was "only a precaution" in my case and not strictly necessary - I would certainly have considered the options much more carefully than I did. "Bladder and/or bowel problems" may sound like something you could live with, but quality of life can be seriously affected by this type of health issue.

Could this be one of the last bastions of, "Doctor knows best"? Thank you for bringing this into the open, Macmillan Cancer Support - it's something patients need to know.