Hi S

I've just been diagnosed with rectal cancer and considering papillon therapy. Can you please share your experience and was it successful. They recommended permanent colostomy as the tumour is very low in rectum but would prefer alternative treatment.

Chetz

Hi C,

sorry to hear of ur diagnosis. I hope I can be of some comfort & help to u. I had papillon treatment in Sept 2019 & up to press it has been a success. I had to have EBRT with chemo first though as my tumour was 5.5cm in size & classed as a T3N0M0.
Have u searched for this on YouTube? There is a video about it there & the papillon website has several peoples experiences on there to read. Please feel free to ask me anything u wish to know about the procedure.

M

Hi Jules ,

how are you hope you are well ? Have not been on for a while xx

Hi Jay how are you ? 

Hi There,

im ok taking it a day at a time. Since my terminal diagnosis my treatment has stopped working and so not had anything since last July. I've lived longer than they expected me too so there's a big positive. I'm in a lot of pain with arthritis now which only started once I had chemo just a weird coincidence I guess. I just keep fighting!

how are you? 
 

jules

Hi Jules ,

sorry to hear that yes I too now have arthritis since chemo but only in one knee.I read your post when you said it had travelled through your blood & you now wished you had had the bag I read it allot and wanted to thank you for giving me a kick up the *** and made the decision to have a bag after 3 years of refusing .

I think of you often and will continue to think of you often 

keep fighting xx

You keep fighting too hun. It's a hard road but we are still here and we need to enjoy life as much as possible. We try and get away in the UK as much as possible to see beautiful scenery and relax whilst I'm still able. 
 

im sending you all of my best wishes 

Chetz 

I am sosorry i didnt reply earlier have just logged in.

Hope everything went well for you.  I have just had latest results and all waswell 3 and half years on. just signs of scaring from the papillon.

best wishes

sue

Cant believe its thattime again. due for flexi next week and scans to follow always a worry but fingers crossed. 4 years since end of treatment