TAMIS / TEMS / TART

Hi ATS,

It is NHS but because its wasn’t the so called Gold Standard it wasn’t offered me until I did the research after finding about it through here.

I chose Clatterbridge as that’s where Professor Myint and he is the leading consultant and he is teaching other Doctors in the treatment.

I understood at the time that there were 4 centres in the UK offering the treatment. Hull, Nottingham and Guildford and the one at Clatterbridge. This may have expanded now to other areas.

If you ask for a referral then you will be contacted by them directly. Just explain to your consultant that it’s what you want to explore. Only they will be able to tell you if you are a suitable candidate. 

If I can answer any more questions then please contact me and I will do my best to answer.

Kind Regards KevH

Thank you KevH, i’ve had the tumour removed but they said i’ll probably need APR.  I now await results to see if they had clear margins or not but I want to have a consultation with regards to papillon and get their opinion on my case.  I’ve seen others have had more advanced tumours have success so I’m hoping i might too   

Many thanks 

Hi, it sounds like you’ve had a rough ride after surgery.  it has not the best timing, with such hot weather,  as impossible to sleep and keep hydrated. 

I am doing ok.I have discomfort now the spinal block has worn off but had a bowel movement today so just waiting to see when I can be discharged. 

I was told by the consultant this morning there may be risk of anal tearing and infection, so need to take it easy and come straight to hospital if I develop any symptoms.

However, the waiting begins for histology results for next steps  
So glad you’re being referred for Papillon option.

Take one day at a time, you will make progress. Xx

I’ve been incredibly lucky that i got a side room with air con, unbelievably grateful for that.   

My bottom is very sore and very stretched and does not feel like me at all at the moment.  I’ve had so many bowel movements i’ve lost count, the after effects of the bowel prep and I think they made my haemorrhoids worse with the stretching.    

I haven’t approached the subject yet with my surgeon about papillon, I don’t think he’ll like it but I hope he will support me in getting an opinion. 

Yeah one day at a time but so hard xx

Hi ATS,

Please don’t be fobbed off in seeking to see if Papillon is going to be suitable. It’s supposed to be NHS choices which is your choice not theirs.  

You obviously started the process of looking at it with your research that you have done so far.

As you can see from my journey that until I had done my research through here and the Contact Papillon site. They had it all laid out that I was going to have 5 weeks of Chemotherapy along with 5 weeks of Radiotherapy. Then they were going to do the big operation of removing the tumour and sowing my bum up and fitting me with a permanent stoma.

The research I did and the answers the oncologist gave me to my researched questions made me determined that I wanted to explore the papillon route. I was fortunate that the oncologist from Saint James despite pointing out that papillon wasn’t the gold standard but he supported me exploring Papillon.

It is a NHS treatment as I have responded earlier but it is not what they call the gold standard but it’s your choice. So I hope they respect your choice and support your decision.

Kind Regards KevH