New Diagnosis

Hi DPR70 and a warm welcome to the board.  I’ve been on this board since 2016 and seen both sides of the coin. Jogey is one of the biggest success stories for having a complete response to chemo radiotherapy followed by watch and wait and there have been others too however I’ve also seen people have a recurrence within a year and then have to have surgery? I’ve attached a link to one of his posts and if you then click on his name then his profile page will show more information.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/262980/rectal-cancer-watch-and-wait?pifragment-16476=1

I had chemo radiotherapy and it shrank my tumour by 75% so I still had the op. I found the 5 weeks of treatment to be very doable and I’ve attached a link to a top tips post that we did about it.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/227598/radiotherapy-care-top-tips

Personally I would give the chemoradiotherapy a go as any shrinkage is good and leads to a better chance of surgery with clear margins? 
Hope this helps

Karen x

Hi, I was diagnosed with rectal cancer almost 2 and a half years ago through my 1st bowel screening kit, I had had no symptoms, no bleeding or anything untoward so it came completely out of the blue. Luckily for me it was very early stage and had not spread anywhere. My bowel surgeon offered me a complete non reversal stoma and that after I would be completely cancer free, due to the Tumour being very low in my rectum no other option was available or a Trial named Aphrodite that was taking place at The Christie Cancer hospital, this involved almost 6x weeks of 5 daily high dosage radiotherapy and daily chemotherapy tablets  (Capecetabine) to coincide with the radiotherapy, after much deliberation with family I decided to go down the Trial route and started on 28th Nov 2023, it continued until 6th Jan 2024, I've been clear of cancer since then, receiving firstly 3 monthly sigmoidosopies and MRI + CT scans and now Twice yearly Sigmoidoscopy MRI & CT scan and just had my 2nd Colonoscooy in Dec all signs are still good, bloods all good and no sign of the tumour only scar tissue, I've now Ben discharged at Christie and handed back to my bowel surgeon who will now undertake 6x monthly scans and sigmoidosopies with an addition Colonoscooy every 2yrs.. It has left me with some issues of toilet urgency fatigue intermittent constipation and loose stools but it's manageable through medication, I'm so glad I took this option as its saved me from a stoma and in the long run I hope it's going to be rolled out and offered to patients with early stage rectal CANCER.On Jan 6th 2026 I will be 2yrs in remission. Sending your wife postive vibes and hope whatever decision she takes is the right one for her..

Thank you very much for this information. I have now found quite a lot of info about the Aphrodite trial.

your diagnosis sounds very similar to my wife’s which was also out of the blue via screening.

How did you feel physically during the nearly 6 weeks of daily radiotherapy?

Thanks again

Hello, I sailed through treatment until the last week or so when I had bloody diahorrea, no pain whatsoever just a sore bottom as predicted, they prescribed me Zeroveen which really helped, however 2 yrs down the line and still  experiencing bouts of diahorrea that's occasionally uncontrollable, bowel surgeon prescribed me anti diahorrea tablets but they make me so constipated it's so painful so I've sacked them off, so at moment I'm trying to managethe symptoms myself, it's massively impacted on my social life as I'm scared to go out incase I have an accident, up to now that's not happened but it's my biggest fear, I've got a Macmillan toilet card that I carry round and I use disabled toilets where I can, no ones challenged me yet but if they do I'll wave my card at them lol, also I find if we are out for longer than usual I always have moist toilet tissues in my bag , just in case toilets run out of toilet paper, that's my biggest fear, I do have spare clothes in the car as back up, but not needed as yet, I think more than anything it's  the thoughts in my head (What If something happens while I'm out) that fills me with dread, I hope you wife sails through her treatment, I rested up as the treatment did leave me tired and still does from time to time, everyone's different, I do still experience mucus in my stools but it's normal after Radiotherapy but never ever blood unless I'm constipated and I've been told by my bowel surgeon I have a Fissure that's causing the severe stinging through constipation. He prescribed ditiazem 2% cream that's sorted that out. Regards to your wife, wishing her a healthy happy outcome..

Thank you again.Much appreciated.

Wishing you well for the future 

Thankyou, I wish you and your wife all the best for the future, Regards Gill