Papillon Treatment

Hi Elijahs nana I’m not sure what treatment you’ve had so far and whether that would affect the option to have Papillon treatment but if you type papillon in the search box at the top left of the screen then it will bring up previous posts? x

Hi Karen

if you look at my updated profile you will see this journey started over 18 months ago. I’d didn’t make clear that the 4 months out is from the 3 sessions of Papillon 

thanks for your quick response

Hi again after 18 months since 1st diagnosed with low rectum cancer ,radiotherapy,papillon therapy the cancer is back and growing. I’m been referred back to oncologist only option is immediate APR  with permanent stoma. It is a shock. I feel I should have taken that option in the beginning and it would all be over. As it is it’s down the to unknown and back to what ifs

Hi Elijahs nana and I’m sorry to hear that the cancer is back. Please don’t berate yourself for not taking the operation option earlier - you were well within your rights to try other options and it’s just unfortunate that it’s not been as successful as you’d hoped.

The APR is a big op but it will get rid of the tumour and also check the surrounding area to see if any follow up chemo is needed? You will quickly get used to having a stoma and there’s lots of support on here to help you through the early days.

My friend who was diagnosed just after me in 2016 had an APR and permanent colostomy and she carries on life as normal now going out, going on cruises, flying abroad etc. Like myself she’s still ‘no evidence of disease’. 

Take care

Karen x

Thankyou Karen. It’s hard to stay positive but it’s the only way

Hello 

sorry for your long journey my husband has now been referred to clatterbridge for this treatment for low rectal cancer .. so what remains has to be under 3cm to be eligible.

my fear has always been when he opted for the longer treatment of 25 radiotherapy and chemo tablets was to get it  out so to speak.

it worries me to go through this to unfortunately e d uo still requiring APR surgery plus I can imagine there a few side effects of internal radiotherapy.

Hi Bradley J I would still say go for the Papillon treatment if your husband is suitable. I didn’t have any side effects from the treatment other than slight bleeding. Unfortunately I’m one of the 20% that the treatment doesn’t work for. The Clatterbridge staff particularly Prof. Myint are so caring and knowledgeable. My very best wishes to you and your husband on his journey 

Thank you x 

I am a health care assistant and you will manage your stoma as I reassure my husband he will if that becomes the end result.

use spray to help with removing your bag and community nursing will support if you need support 

best wishes and thank you for your reply 

I was in a similar position.  Two years ago I underwent chemo radiation followed by chemotherapy for low rectal cancer.  I was fortunate in that this led to an initial complete clinical response as I was desperate to avoid an ELAPE and stoma. Unfortunately after 9 months residual disease was detected and to avoid surgery my oncologist considered Papillon. This was considered unsuitable and after investigating a transanal resection with the surgeons, I was referred for an ELAPE.  This went ahead in April with 10 hours of robotic surgery with reconstruction.  In retrospect, it was the right decision.  Pain was well managed and yes not sitting for 6 weeks was unpleasant but after about 5 months, things are pretty much back to normal. By September I resumed cycling as my hobby and can now cycle 45 miles.  I hope this helps to reassure about what seems very daunting surgery.