Alternative to stoma

I appreciate your efforts in trying to reassure me but it doesn’t help

Much love to everyone going through this catastrophic human experience x

Hi Tom,

I was diagnosed in August 2023 with a very large, very low tumour – 4.7cm and 2mm from the anal verge.  Thankfully there was no spread – M0 N0 V0.  I was told that I would definitely be having a permanent stoma. I refused to accept this because it was not something I wanted and the decision was made before I had even commenced my treatment. I had 25 sessions of radiotherapy with Capecitabine (reduced dosage because I have DPD deficiency) and 3 rounds of Chemotherapy once my CRT had finished. In February this year I had an MRI and a CT scan to determine the effect of my treatment. I was told that there was still something showing on the scans, but it was too small to measure. However, because there was still something there, I would need a permanent stoma. I did not feel that I could go along with the decision without exploring all options. I knew, and accepted that if there was no alternative, life-saving surgery would be my only choice. Whatever remained of my tumour was small, so I requested a referral to Clatterbridge, to be considered for Papillon treatment (tumours need to be 3cm or smaller).  I was told I would need to undergo an examination under anaesthetic and a biopsy before a referral could be made. This took place in March. Three weeks later I had an appointment to discuss my results. My biopsy results had come back clear.  What had shown on the scans was scar tissue. I was fortunate to have had a complete clinical response to treatment and there is no evidence of disease. I was still offered the opportunity to have a referral to Clatterbridge, for a second opinion, which I gratefully accepted. I had my appointment last week, with Professor Myint, who carried out an assessment and confirmed that I have had a complete clinical response, there is no cancer present and no further treatment is required. I will, however, continue to be monitored and if, in the unfortunate event the cancer returns, Professor Myint has said he will treat it. I know that surgery is the ‘gold standard’ and I know that if the cancer returns there is always the possibility I may one day need surgery but at least I know I have explored all options. Everyone is different, and people respond to treatment in different ways, but I feel that not accepting surgery was the right thing for me.

Several people on this forum have been fortunate enough to achieve a complete clinical response, but whether to go ahead with surgery or not is a very personal decision. It’s important to do as much research as you can so that you know what options are available to you. There is a lot of information about Papillon on the Clatterbridge website and some very inspiring patient stories.

Good luck with your journey.

Hugs,

Susie 64

Thanks Susie, really helpful!

I had rectal tumour removed 8 weeks ago luckily  no spread. I have a stoma which I was  told before op but shoud be reversable. Hated the idea. You come round from op its there. It takes some getting used to but mine behaves itself normal output . five minutes to empty 10 mins max to chamge bag. Its not that bad. I thinkpeople who have most trouble are those who have bowel disease. Watch what you eat to begin with and my Stoma nurses have been brilliant.

Hi Tom, my surgeon told me if the tuma edge is 6cm above anal verge, then it is likely a stoma will be required, how big is yours and how far up from AV is it.

Regards

40mm and at about the the same location 

Hi Tom, 40mm / 4cm , i believe is average, hope fully after radio/ chemo it should shrink or even shrink completely, which will benefit either minimal surgery or no surgery, and no need for that stoma,

Warm regards

I think surgeons always give the worst scenario, keep positive m8t, Let me know the MDT plan of treatment

It will also depend on the stage of the tuma, is yours stage 2 or 3

T2 N1

5 weeks chemoradiotherapy