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 Jogey and welcome to the Cancer Chat community.

    I'm so pleased that your treatment was successful and that you've almost been cancer free for 3 years now. It must be a wonderful feeling.

    I just wanted to thank you for taking the time to share your knowledge and experiences with us. I'm sure our members will really appreciate your input and will take your advice on board as they embark on their own journeys with this diagnosis.

    Wishing you a wonderful Christmas and all the best with your CT scan next month.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thanks so much Steph and happy holidays to you too.

    Best wishes,

     

    Jogey

     

  • This is a year late but I just came across your post! 
     

    I am about to start chemoradiotherapy for rectal cancer with a suspicious looking lymph node. They spoke to me about the watch and wait but also cautioned that because I'm just 45 they wouldn't want to risk leaving tiny amounts of cancer and it coming back to haunt me so I'm waning towards doing the LAR surgery and being sure but let's see how I feel after the next 5 weeks. How was the chemo/radio for you? I'm not sure what to expect.

    KPE

  • Hi Pevans,

    Really wish you success with your treatment whichever way you decide to go.

    As for chemoradiotherapy I actually didn't find it bad at all. I didn't really like taking the chemo tablets but no big deal. The radiotherapy was absolutely painless for me I'm pleased to say. The main difficulty was that you had to have a full bladder, but they could keep you waiting for a long time and if you had to go to the loo, you then had to drink water again and wait in the queue. But to be honest a pretty minor problem. At one point I got pretty bad diarrhea but again no big deal. There were a bunch of people all having radiotherapy with me and you kind of got to know them as you waited. Some of them were real characters and it was actually quite interesting, a bit like going to a new pub where you don't know any of the regulars. All in all looking back, although it is obviously stressful and frightening for anyone having cancer, chemoradiotherapy was really OK and it was lifesaving in my case.

    Just one thing I will share with you from my own experience, my NHS hospital completely failed to discuss with me the likely side effects on male fertility of having chemoradiotherapy )and possible strategies to have children in the future) and the whole topic was only raised by myself after I had already started chemoradiotherapy. So if you want to have more children and you have not already discussed this with your medical team it might be a good idea to discuss this with them before you start chemoradiotherapy.

    Take Care,

     

    Jogey

  • Sorry I am a bit late in joining this conversation but do you mind me asking how many rounds of radiotherapy you had and if you were bothered with external burns to the skin?

  • Hi Shalaway,

    I had five and a half weeks of radiotherapy and that was it. I wasn't bothered at all by 
    external burns on the skin. 

    Hope this helps.

  • Do you mind me asking if you were cancer free after your radiotherapy? I hate this waiting and wondering period before the first scan.

    How are you keeping now?

    Best Wishes

  • I was very lucky that I got what is known as a clinically complete response and was cancer free after radiotherapy. 

    I am now still cancer free after four years and have no symptoms, feel very fit and well and lead a normal life, so again I've been extremely lucky.

    However, there was a small slightly abnormal area on my last MRI. The concensus of the radiologist and the multi-disciplinary team was that this is not cancer, but out of caution they have ordered an extra MRI in six months.

    It is always very stressful waiting. I really hope your treatment goes very well.

    Take care.

  • Thank you for your reply.

    I hope my resullts are as positive as yours, its certainly an encouraging outcome to be aware of when we almost anticipate the worst.

    I wish you well and I am very pleased that you have that future MRI for reassurance.