rectal cancer watch and wait update

Hi all,

So I was diagnosed with stage 3 rectal cancer in November 2018, had chemoradiotherapy which finished at the end of January 2019. I was very lucky to have a complete response i.e the chemoradiotherapy got rid of the tumour from the rectum and the lymph nodes and went on watch and wait program.

I have recently had an MRI and colonoscopy which were clear and CEA was normal which means I am now clear for 2 years and 10 months since the end of chemoradiotherapy. I will have a CT to check thorax, abdomen pelvis at the 3 year mark in January 2022. I have essentially no symptoms or side effects that cause me problems, no pain and bowel function is normal, so so far it has been an absolutely terrific result for me.

Just a note on stuff I did with the agreement of my NHS oncologist which was beyond the usual NHS treatment to help 
improve my chances of a successful outcome.

1) I had chemotherapy. At that time this was not standard for rectal cancer watch and wait patients after a radiologically complete response  in the UK. The idea was to kill off any micrometastases. I spoke a few months ago to my oncologist and he said he was very glad we did this. I assume this is because he felt it improved my survival chances.

2) I was referred for bracytherapy boost, however the brachytherapy specialist decided not to do this as there was no evidence of disease at all in the rectum.

3) I followed the care oncology clinic profile of repurposed drugs against cancer, the idea being to reduce risk of recurrence.

4) I followed a diet and certain other lifestyle changes largely based on research from Dr Charles Fuchs of the University of Yale and other research mostly from Harvard and Yale specifically focussed on improving outcomes for colorectal patients.

This included things such as drinking coffee, not having sugary drinks, taking low dose aspirin, eating oily fish, eating tree nuts, vitamin d, regular exercise etc. I must stress that everything I did was with the agreement of my NHS consultant.

I am posting this just to give others who are considering watch and wait for rectal cancer the benefit of my experience down the line, but please note that it doesn't work for everyone. As ever your medical team will advise you.

Very best wishes to everyone who is having treatment for this disease.

  • Hi. My husband had same results but now, 6 months after the APR surgery his CEA went up. Did they ever track your CEA? 

  • Reading back on your discussion about meeting people at radiotherapy and the dynamics of everyone being there for the same purpose, to get well. Perfect strangers who we get familiar with from day to day and then one by one they come to the end of their radiotherapy sessions and certainly in my case they simply walked out of my life as quickly as I walked into theirs at the beginning of my treatment. Left wondering how the old man with the cap is now or if Janet ever managed her grand daughters wedding…

    I look back on those waiting room chats with a smile as that group saw past the illness. Cancer was not the focus of our conversation but if one of us was having a bad day we would come together to lift our spirits to move forwards.

    I wish those individuals had any clue how they spurred me on.