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.
Hi , I had a complete response to my rectal cancer which was very similar to yours, I am on watch and wait, and currently in the process of looking to have papillon treatment to bring the risk of cancer coming back,down .from 25 percent to below ten percent,if you click on my name you can see my journey so far. Cheers .John.
"While most do not, tumors regrow in 20%-30%, and when they come back, they tend to be aggressive, with poor outcomes. Patients in those situations would have been better off with upfront surgery.
The problem right now is that there’s no way to predict who will be cured by neoadjuvant therapy and whose tumor will come back, said Philip Paty, MD. FACS, a colorectal surgeon at Memorial Sloan Kettering Cancer Center, New York.
“There are some who are probably harmed by the watch-and-wait paradigm. The risk of local regrowth is hardbaked into [the model]; we haven’t been able to eliminate it,” he said at the annual clinical congress of the American College of Surgeons."
Sorry I can't give you any words of wisdom but I can suggest that you repost your entire post to our Ask a Nurse page and hopefully one of the nurses will be able to answer some of your questions, please allow 2 working days for a reply.
Wish you well with your treatment which way you go.
hi jogey, i am only posting what i have been told by professor myint at clatterbridge hospital where they do the papillon treatment, when i had my complete response i contacted mr myint to ask whether i could have papillon if my cancer was to return, and he said that i should have it straight away, and he then said that the percentage of cancer returning was twenty to twenty five percent, and if i had papillon this would drop to nine percent,i can't say whether this is the right path for everyone,people have surgery and cancer never comes back, people have surgery and it comes back within a year,some i just feel that after having been given the response i had, and one that i had prayed for, i am willing to give it a shot, and if i get another year or two of normal life then i will take that,you can get to caught up in all the paradigms, or protocols, or percentages, i just want to try and enjoy a bit of normal life, until the day that its not normal, in the cancer world no one can give you a concrete answer to anything , and only you can make the decisions rightly or wrongly. cheers john.
I was diagnosed with stage 3 rectal cancer 5 years ago, I had 25 sessions of radiotherapy combined with Capecitabine tablets, waited 8-10 weeks for the tumour to shrink and had an operation to remove the tumour 12-15 inch of bowel and over 20 lymph nodes. I was told the tumour had reduced remarkably before my op. I was told that depending on the health of the surrounding bowel tissue they would rejoin the bowel. I was lucky that they were able to do this, the pain post- op was bad but no different to any other major operation. going to the toilet afterwards was not painful. my normal toilet habits have always been irregular so I can only say that everyday was different and I had to rush to the toilet every so often, probably at least 3 times a week at first. I am now 5 years on and still have emergency 'find a toilet' moments.it took a few months to come good after the operation but that again is normal for me. I am female so cant help with the male side of things but I don't think they would need to go anywhere near your prostate, but that's me guessing. I had keyhole surgery and only have a small scar in my right groin and the entry cuts for the instruments. these were glued closed so no stitches. I understand that you want the tumour out but I also think you should listen to your surgeon. Be careful when looking on US sites as their procedures are different to the UK and also there are cost issues in the US. I am still cancer free and I would say not fully back to my old self but I am 70 so that could be down to getting older. good luck with your treatment and stay positive. Ask what markers have shown on your CEA blood test . I think the norm is 0-10 mine was 0.9 at the last test in September.
Dear jogey, thank you for sharing your information. I am very sore with what I thought were piles and have turned out to be a rectal cancer, I have had 2,weeks of a 4 week course of chemo and radiotherapy, the sornes is so bad I have been taking oramorph for break though pain as well as tramadol and paracetamol I am so tied with this pain I also have idiopathic pulmonary disease which is why they won't operate, my hb is low and I find it difficult to breath even with oxygen can you suggest anything that may help,
I'm sorry you are having such a difficult time with it. I have to apologise but just don't have any knowledge of how to deal with this so can only wish you luck with it. Perhaps you could repost on this site to the Macmillan nurses who will have the knowledge to help you.
