I was diagnosed with a stage 3B rectal cancer in November, 2018. It was 10cm from the anal verge, was 4cm in length and was
T3A, N1, M0. Moderately Differentiated.
Since then I have had long course chemoradiotherapy with capecitibine. I have recently had MRI, CT, PET and flexible sigmoidoscopy to assess results. Fortunately the scans and sigmoidoscopy seem to be showing an excellent response to chemoradiotherapy with no tumour left in the rectum or in the lymph nodes. It is a likely clinically complete response, but I am awaiting four biopsies taken at sigmoidoscopy to confirm this. The surgeon told me that if these are clear he will meet with me to discuss whether to not operate and just watch and wait (which means he operates if the cancer comes back, but doesn't operate at all if it doesn't).
However recent research at Memorial Sloane Kettering Hospital in the US implies that long term disease free and overall survival is better with surgery (and a pathologically complete response) rather than watch and wait and the rate of distant metastasis is lower with surgery. I would therefore rather do the surgery, but have heard there are very serious side effects.
Can anyone tell me if they have had a mid to high rectal cancer removed by surgery, what are the short term or long term side effects of the surgery, including pain, issues with going to the toilet, and male sexual side effects as well as any other side effects.
I just wanted to thank you very much for telling about me Professor Sun Myint and the possibility of a bracytherapy boost.
I have now had a confirmed clinically complete response and they offered me either watch and wait or surgery. In the end I decided to go watch and wait. I then remembered your post and googled Professor Sun Myint and read his research on brachytherapy boost in cases of clinically complete response greatly reducing chances of local recurrence. This now looks extremely valuable to me as a way of boosting my chances of survival and also avoiding an operation. I then showed my oncologist in my hospital in Essex Professor Sun Myint's paper and he referred me to be assessed by him for Brachytherapy on July 17th so I am heading up to Liverpool to do this.
I don't know if Professor Sun Myint will assess me as suitable for this treatment but I certainly hope so.
In his paper he says "Our data suggest that CXB can reduce local regrowth to 11% compared with around 30% after EBCRT alone."
That's just an enormous benefit to me as it could save my life and also save me having quite a disabling operation.
So thanks so much for sharing this information it has really helped me in a critical way.
I want to share with you the other thing I have arranged at my hospital in order to improve my chances after a clinically complete response.
My hospital doesn't normally give watch and wait patients who have had a clinically complete response systemic chemotherapy but I asked my oncologist about this. He said he wasn't aware of evidence that this would increase my chances of survival but he said he would have a look at the latest research. He has now come back to me and said that there is new research that shows this does increase the chances of long term survival. I assume it reduces risk of spread of disease. But he also said the research shows that the results with 3 months chemotherapy are just as good in terms of increasing my chances as the traditional six months of chemo. He also said he discussed this with another consultant who said that he does chemo for watch and wait patients who had a clinically complete response in his private practice.
I have now started chemo as I think it is another weapon against the disease that could be useful in helping me survive long term. It is Xelox which is an infusion of oxalyplatin together with capecitibine tablets. It's not much fun, but I started on Saturday and it's not been too bad so far. If Professor Sun Myint assesses me as suitable for brachytherapy on the 17th July I will probably break off chemo, do the brachytherapy, and come back to the chemo after that.
If any of this is useful and you have any questions please don't hesitate to message me.
Thats fantastic news and thank you for sharing. I hope you continue to cope with the chemo well (the 3 months v 6 months was called the Scot trial) -there are lots of posts on here about it but please keep your hands and feet well moisturised and let the nurses know if you start to encounter any side effects.
