Hi Jay, sorry to read about ur diagnosis. There's never a good time to be told you have the big C, but as long as it's discovered & treated early enough, it's definatley curable, so now we call it the little c.

Papillon treatment is for rectal cancer as the machine they use to administer it gains entrance through the back passage. If the tumour is more than 3.5cm in size, it has to be shrunk by means of EBRT & u usually get a course of chemo at the same time. There is a video of the Papillon procedure on YouTube. I'm not medical, but I have had the treatment myself 17 months ago, so I know how it all works. From what u have said, it sounds to me like u have colon cancer & that is why u are being offered surgery, where the infected park of ur colon will be removed & then they reattach it. I have 2 friends who both have had this operation done & are still here after 3yrs with no reoccurrence. One was stage 3 & the other stage 4. Surgery is always the gold standard offered at the moment in this country, as this has the highest success rate, I hope this helps & I If u need anymore info I will try & provide it for u. 
 

S

I tell people Jay the stress and worry is worse then the cancer.I would really stress to them that please can the bag be temporary.I was told this surgery was not available to me .I then refunded al treatment and maraculously they have now told me that it is not available at my hospital but another surgeon will do it .... this is 2 years on .I would take this option but literally beg them that you want it to be temporary.Good luck Jay remember to get some sleep CBT oil will allow you to relax your mind Holland and Barrat sell it but there is better out there .Chemo and Radiation can be quite tuff especially with young children and chemo on its own will be a doddle there is a tablet out there where you do not loose your hair ask your surgeon McMillan nurse or oncologist .here if you need to talk .xx

Hi There,

my anal tumour disappeared but I had chemo and radiotherapy together. Unfortunately 6 months after having the all clear they found it had spread through my bloodstream into my lungs and so now on palliative chemotherapy as it cannot be cured once it has metastasised 

hope you are okay?

jules

Thank you for your reply.

I'm so sorry to read your update. It's such a cruel disease. My one wish in life would be that a complete cure could be found and no one would ever suffer again. It's breaking my children's hearts seeing what I'm going through. I'm waiting for a date for surgery, I need it gone. I was convinced a stoma bag was the worst thing in the world, but it reallly isn't is it.

Take care xx
 

Hi,

Thanks for your reply. Mine is a low recal tumour about 4.5cm. I was offered surgery no mention of papillon it was just a google search that caught my interest, I'm so pleased that it's worked for you. I'm petrified of open surgery with a possibility temporary stoma but need it gone. I've gone backwards and forwards in my head, which route should I take. It's so difficult, it's a horrible position to be in isn't it,

xx

Hi Justine

You're right the stress and the anxiety is the worst. I wasn't eating or sleeping for 2 months then I had a meeting with my consultant and she was helpful and reassuring, she believes open surgery and a possible temporary stoma would be the best option for me. I won't need radiotherapy first to shrink it as I thought I might but I would if I had papillon. I had my symptoms for months before I went to my doctors, stupid I know but  was scared of what they might find. I think I may get some oil we have a local store. Thanks again and I hope you're feeling well now xx

Hi Jay,

I too wish there was a cure for every type of cancer out there! I'm just about to start chemotherapy again after a 6 month break as it had helped to shrink my tumours but now they are growing again! They gave me 6 to 8 months to live and I'm here 12 months on.

you try anything the bag is not the end of the world, I used to think that it would be for me but now I wish it was an option if it would get rid of this horrible disease. I wish you all the very best for a full recovery in time x

Thank you 

So sorry to read this, it really puts things into perspective. 

Please take care xx
 

really sorry if this is too late to help.  i was diagnosed aug 2019.  For personal reasons i refused colostomy and was referred to on for papillon.  i had 4 sessions with a two week gap inbetween each session.  The round  trip was about 11 hours as it couldnt be done locally.Treatment takes about 2 minutes and while a bit awkward it was similar to sigmoidoscopy.  staff were brilliant.  i had radiation after and have just had results of latest scans which were clear. nearly three years on.  i wish you all the very best.