Papillon

Hi David and a warm welcome to the board. I’m presuming you’ve looked into the criteria for papillon and your tumour would be suitable? I’ve attached a link to a recent post about papillon and if you type ‘papillon’ in the search box then it will bring up lots of previous posts

 Papillon/ CBX 

Take care

Karen x

Thank you Karen. I think I'm a suitable case. Small tumour found 'early', no evidence of spread as at 3 months ago. New scans next week hopefully will give my oncologist the data he needs to make a referral. I'm desperate to avoid LAR which was first outcome from MDT after initial diagnosis. Surgeon reluctant to operate, worried about the join leaking from pretty dodgy pipework (diverticulosis) so referred on to oncology for radio/chemo. Oncologist seems happy to go with my choice, but obviously I've got to make an informed choice. The learning process is already wearing me down.

Hi David

I had Papillon treatment this spring and summer at the Clatterbridge Cancer Hospital in Liverpool, which involved 3 treatments to remove the tumour. This was followed up by 5 x5  (monday-friday) conventional radiotherapy and chemo in tablet form.

Sunny Myint, the professor who treated me at Clatterbridge believes I will have a 'good outcome' from the treatment and I am hoping he's right!

I have found all the treatments very tiring , a new level of tiredness to be honest,  but I'm grateful for the treatment and feel that it is better than the alternative which would have been a permanent stoma.

Hope this helps, if I can answer any further questions please let me know.

Thanks so much. Can I ask whether the Papillon treatment was delivered within the NHS or did you have to pay for the treatment? Was there much of a waiting period from the time of your referral till treatment. After diagnosis MDT committee sent me straight for surgery. Then surgeon decided against it (age, weight, worries about leaky join etc). Then onto oncologist but now 3 months further down the line so new scans needed (next week). Oncologist initially proposing 5 x 5 conventional external radiation plus chemo before anything else (subject to new scans). Seems open to Papillon but maybe AFTER the 5x5, i.e. the other way round from your plan. I'm overthinking everything but wondering why we don;t go for Papillion straightway as I seem to tick all the boxes. Thanks again.

Hi David,

Have they mentioned where you would receive the papillon treatment? 

I had a consultation with my local consultant and the oncology nurse around a month after my tumour was discovered.  He wanted to push for the papillon because of the position of the tumour. 

As soon as I agreed he contacted Sunny Myint at Clatterbridge and he phoned me , I think it was only a few days later, to discuss my dates and treatment. This was all NHS funded. I had the 3 treatments 2 weeks apart and they began in May,  I was diagnosed in mid March.

Do you know the size of your tumour? Mine was 3.2 cm , maybe they want to give you the conventional radiotherapy to reduce size. I think mine was about the largest size they attempt papillon on but I may be wrong. 

There is a book you might want to read , called Saving my Arse by Mark Davies, although it is quite old, he had the treatment the other way around to me, so this may help you. Available online.

Please stay in touch if you have any more concerns or queries,  I do know how you feel, the waiting is the worst bit, as gruelling as the treatment is, you feel you're getting somewhere.

When is your next appointment?

That's really helpful. Thank you so much. I'm downloading loads of info now about Papillon and Clatterbridge. My diagnosis was 20th July by colonoscopy. Single 2cm rectal tumour with diverticular disease throughout colon. Tumour is T3N1. MDT choose surgery and I saw surgeon 29/8 who on examination said it was in upper 2/3 of rectum. Had scans and fitness test. 2nd meeting with surgeon 26/9 revealed her hesitation to operate. Fitness results were pretty poor because I had suffered an cardiac episode in April which put my heart rhythm all out of sync and that was ongoing when I had the fitness test (ridiculous given I had a cardioversion procedure booked for a few days later - cardioversion has corrected the irregular rhythm). At the time I was relieved that the surgeon was holding off as the prospect of surgery and the aftermath were terrifying to me - so much so I was going to ask her to leave me alone and let nature take its course! Surgeon referred me to oncologist where we seem to be starting again from scratch 3 months later. Saw him on 31st October. First step is to get new CT & MRI scans (next Wednesday). No doubt will have further meeting after he gets results. He says the way to go is 5x5 external radio combined with chemo. That would start in 5 or 6 weeks (? delay). I asked about targeted radiotherapy offered privately by Genesis. He wasn't keen - said it was all in the marketing, nothing really new. But he said if I was interested in suchlike I should take a look at Papillon which is available at Liverpool and Nottingham City hospital. He said he could refer me if that's what we decided. All depends on what the new scans show. What 's been driving me mad is all the emphasis on early diagnosis, fast-tracking, time is of the essence etc - yet after3 months I haven't actually had any treatment. I said to the oncologist if the damn thing breaks out of the rectum surely we've got a whole new ball game to deal with. His response was "how do you know it hasn't?". Hence new scans.

Good God, what a response! On the whole I have had a great experience with the medical professionals, but some can be very blunt and not really understand what a strain it is to keep waiting everyday. It was bad enough for me when I was waiting to find out what type of cancer and what stage and my wait was a month.

My tumour was sited lower down so that maybe why they're opting for treatment the other way around

When you get your results from the scan hopefully you can discuss with your consultant why he/she wants you to proceed as they do.

I have no experience of Nottingham hospital but can say that Clatterbridge is fantastic,  it's like being in a private hospital.  Professor Sunny Myint has spent years developing the Papillon treatment,  he and his team are great.

I would definitely recommend reading the book I suggested. You get it from the horses mouth so to speak,  although procedures may vary from patient to patient and things may have changed throughout the years.

Thanks again, my friend. I'm on the case re the book - and what a title! All the best.

 Let me know how things go re next week