Papillon/ CBX

 https://community.macmillan.org.uk/members/kevh
Have a look at KevH  story and I have tagged him in . If he is around I am sure he would be happy to share .

The last I checked Nice had asked for some further research to be conducted and that was a long time ago and possible all finished so you could take a look there too .

But KevH has a lot of info if you want a personal experience.

Take care ,

 
Court 

Hi Gosh,

My story is similar to KevH except that I didn't go for it and had the LAR op done instead. My surgeon explained all about the gold standard etc and the fact that to refer me to the Royal Surrey would be possible but would add time with the summer months coming. So if it were deemed that I couldn't have Papillon then my LAR op would be late summer.

My team were possibly not as pro papillon treatment as KevH's so I opted for the LAR which they could carry out within 3 weeks in mid June 23. 

As it turns out my histology of the removed bowl was excellent with zero cancer cells detected so I probably would have been ok to go the Papillon route or even onto the watch and wait program.

I am now waiting for the stoma reversal op.

I think in some ways even though it would seem my tumour was totally killed off I am happy that the site has been removed and soon I'll get back to somewhere near where I was hopefully. The mental side of this is as important as the physical.

My son in law described the process to be like gambling. I agreed!

Good luck with your journey!

Rich.

Hi Gosh,

Court has tagged me in to your message. After reading what you have put please don’t hesitate in getting a referral for looking at Papillion treatment. As you have said you have nothing to lose and the treatment is not just for people that isn’t suitable for an operation. Indeed that was the path that was set out for me regarding the operation until I read here about others with the same condition as I had who also didn’t like the thought of living with a permanent stoma. This got me armed at the meeting with the Oncologist from Saint James when he had answered my questions that I had researched and it was clear that I was a potential candidate for Papillion treatment I asked for a referral to see Professor Myint at Clatterbridge.

The Oncologist tried to point out that what I was looking at wasn’t the Gold Standard but he would support my referral.

by all means look at my profile and that should give you my story in a bit of detail. The treatment path I went down is still NHS treatment.

I am now 5 Years post treatment no Stoma and whilst my toilet visits in the first 18 months was a bit erratic post treatment things have settled down to normal after that period.

My last appointment with Professor Myint he says the chance of my cancer returning is about 1 % now.

So please take that decision and as you said you have nothing to lose and only if you get the referral will you know if what treatment I had is suitable. I had read on here that one lady had some resistance from her local oncologist but I didn’t have any. But I was prepared to push as hard as needed to get my referral. Just remember the phrase NHS choices and that is your choice.

Just a note now Clatterbridge is now at Liverpool and Professor Myint says they have obtained further funding and they are doing treatment at the new hospital.

Please keep us posted how you get on and good luck 

Kind Regards,

Kevin 

Hi Court, thanks for the information and tagging in Kev.

Hi Rich, thank you so much for your reply and I'm really pleased you are nearing the reversal of your Stoma. Your experience is invaluable to me, take care.

Kerry

Dear Kevin, thank you so much for your prompt reply. You have given me the confidence to ask for the referral and for the first time since my diagnosis I feel a little hope. I think I am being discussed this Thursday at the MDT but I may now ring my nurse specialist and ask if they will consider the referral alongside the LAR in their discussions. As well as not wanting the radical surgery and stoma, they found a lesion on my kidney. So there is a chance that I will need 2 major surgeries. Maybe this will help them make their decision. I will keep you updated and wishing you stay well and cancer free. 

All the best, Kerry

Can’t believe it’s been 5 years Kevin but lovely to hear from you again and that you’re doing so well

Take care

Karen x

Hi Kevin, so I was admitted to hospital this morning after having post procedure bleed. It's all settled down now and fingers crossed I can go home tomorrow. 

It did give me a chance to have a chat with a registrar from the collorectal team who suggested I ring the collorectal nurse specialist and explain about my wish to be referred to Dr Myint, as they can advocate for me in the MDT. Which might save some time. I got a lot of push back from the collorectal nurse though. She said that delaying an op could mean I risk the cancer metastasis and also, if it didn't work could also mean that it would possibly leave scar tissue which would make a join in my bowel less successful and may lead to a permanent stoma! 

When you had your consultations with your team or professor Myint was this outlined to you? I feel like the nurse, far from advocating for me she is trying to dissuade me before I have had any chance to discuss it with the surgeons. She did caveat it all by saying shes no expert! 

So disheartening. 

Kerry

Hi Kerry,

Sorry to hear of your experience so far. I did have some minor resistance from the nurse after the initial diagnosis but I had a bit of time between the initial diagnosis consultation and the next step. To research Papillion treatment via here and the contact Papillion site prior to that next appointment. So I was armed ready and if my questions were answered regarding the parameters for consideration I had made my mind up that I wanted referral to Professor Myint.

There was no mention about any joining of the bowel to me as what they were looking at was sowing up my bum after Chemotherapy and Radiotherapy and fitting a permanent stoma. The consultant after I said I wanted referral pointed out that it wasn’t the Gold Standard but as he could see I was determined that I wanted Professor Myint to be the judge as to if I was a candidate for Papillion or not they supported me being referred.

Bearing in mind this consultation was after the MDT team had met to decide what was to happen next.

I am no expert either but it is about your choice and if you have looked into the Papillion treatment and believe you may have a possibility of meeting the criteria then when you next meet with your consultant then push for a referral. You will only know if you are a candidate by having that referral.

 I after doing the research and it looking likely that I could be a candidate for Papillion was determined that I wanted to explore that route and after Professor Myint saying I was and uttered the words that if it doesn’t work then you still have the so called Gold Standard to fall back on then you have nothing to lose.

 I still had to have the 5 weeks of Chemotherapy and Radiotherapy which reduced the cancer and put my firmly into the criteria of being a candidate. Even the consultant from Saint James after the Chemotherapy and Radiotherapy said it was as good as it gets and had no hesitation in saying that I was now an ideal candidate.

Please remember that it is your choice to decide what route you want to take but obviously it needs to be an informed choice.

In my last conversation with Professor Myint he was saying that the tide was turning in favour of Papillion treatment being the Gold Standard how long that will be before it is I don’t know but if it does end up being the Gold Standard then that’s got to be a lot better than fitting people with permanent stomas which should be the last resort.

So keep pushing and keep me posted.

Hi Karen,

Hopefully we are heading towards a discharge back to the GP now. My last Colonoscopy which was last month showed no reoccurrence the only thing spotted was some little piles just inside the entrance. The colonoscopy had been farmed out because of the backlog so I’m not sure how much of my history they were aware of.

I had a telephone appointment from Pinderfields a few weeks prior and they said if everything was clear at my Colonoscopy then they would touch base with me in January and if I was still okay then they would look to discharge me then.

 The place I had the colonoscopy done their report said they recommended a further sigmoidoscopy in 12 months but as I said earlier not sure if they really were up to speed on the history.

 I might just give Pinderfields a ring next week and see what they are saying.

But otherwise I’m going on well everything settled down well and no permanent stoma. So good for not having the so called Gold Standard.

Kind regards,

Kevin x