I had a T3 lower rectal cancer, which has been treated with chemoradiation. This has resulted in a near complete clinical response. I now intend to have papillon to mop up what’s left of the tumour rather than go down the major surgery route.
I have not been to Clatterbridge, but I have been in touch with them about the papillon treatment they offer.
It is a wonderful place - they really do treat you as a 'person' rather than just another 'number' lined up in the waiting room for hours. Apart from the hours of travelling to and from (I live in Leicestershire), and the fact that I was having the treatments, it was almost a pleasure to attend the appointments there.
I had the same type of tumour which first of all was surgically removed and then I started on the chemo and the radiotherapy.
Unfortunately the chemo almost finished me off as it caused my heart to keep going into spasm, cutting off the blood flow (like having heart attacks) so they had to stop the chemo after only a few days and just continue with the radiotherapy.
I had the radiotherapy every week day for about 6 weeks and then after a week or two I went to Clatterbridge.
I only had to have 2 treatments there with a few weeks between the two and then I went back for regular check-ups for a few years.
The treatment in itself is uncomfortable rather than painful although it 'is' extremely 'undignified' !!! - They give you a pair of what I can only describe as navy blue paper knickers with a 'cat-flap' at the rear. One size seems to fit all - from a tiny 6 and a half stone little me, all of 5 ft tall, to 7ft tall sumo wrestler body type. - They looked a bit like the 1950's footballers' long baggy shorts on me but fortunately I didn't have to be seen in public in them !!
There were a few 'not very pleasant' side effects, mainly due to internal inflamation caused by the radiation but these were managed by medication where needed and settled over time.
If there is anything at all that you want to know about, just ask.........
Gosh u have been through the wars with your journey. Was your tumour T2 then if u had surgery first & could you have just had papillon? If I have surgery it will be a permanent stoma!! Hence why I wish to try papillon.
I’ve worn those shorts before when having the colonoscopy & sigmoidoscopy. Fortunately I can fill them out a bit better with my 17st bulk, but yes not very dignified, The whole journey of having rectal cancer is not very dignified!
The tumour was marked at T2/T3 and he apparently had 'quite a fight' to get it out but I had a lovely surgeon and he was quite determined !
The plan was always to remove the tumour, have the radiotherapy and the chemo and then follow this by removing the rest and fitting a permanent stoma. - This was also confirmed by the (totally horrible !!!) oncologist who told me when I finished the radiotherapy that I 'had' to have it done.
Anyway, I requested a referral to Clatterbridge and then went ahead with the papillon.
Was you originally going to have surgery first followed by chemoradiation & then a watch & wait, but because you had such a bad reaction to the chemotherapy, the oncologist decided that the best & safest route for you was a stoma operation?
No - the stoma was always a planned stage of the plan they set out for me. - It stated that "the tumour to be removed by transanal resection followed by long course chemo-radiotherapy and then the radical surgery and stoma, which is the standard recommendation (certainly for Leicestershire hospitals at that time)". There was no suggestion of 'wait and see', it was straightforwardly the next 'job on the list'.
As far as my 'Oncologist' was concerned - I remember well his arrogance and his lies when I asked him how much of a difference it might make to the outcome of the treatment that I was unable to continue with the chemo - he stretched back in his chair, hands clasped behind his head and with his usual 'false smile' plastered across his face he told me it would make no difference at all.......... an obvious lie as they would not bother to give both radiotherapy and chemo if just the radiotherapy was going to work just as well!!!
My lovely surgeon, during the course of my treatment had also mentioned that he and a few of his colleagues had an interest in what he called 'conservation surgery'. He said that, "depending on the outcome of the chemo-radiotherapy etc. we could possibly have a discussion about this at a later date if we were confident of a complete response". From this, I was able to do my research and when the time came I knew where I wanted to be referred to!
To be put on the operating table once is more than enough, but to have the prospect of 2 visits must have been very daunting.
So did you have a complete response to the chemoradiation even though you didn’t complete the course with the chemo, because they had already cut the bast majority of ithe tumour out, or was it the papillon treatment that mopped up what was left & gave you the complete response?
Actually, I can't really answer that one I am afraid....
Because I had the tumour removed, all that was apparent of what was left was scar tissue. It was impossible to say if any of this tissue was malignant as it was not possible to say if my surgeon had removed the entire tumour - it was so large and deep-seated that he had to remove it in some parts 'bit by bit'.
After the papillon treatment all that was visible was again (more) scar tissue etc. so we are just going on the fact that there has been no further recurrence.
I know it has worked for many prople though who have not first had their tumours removed.
If you go to the Clatterbridge website you will see patient stories on there which confirm this and have you read the book written by one of the professor's patients - I think it is called 'Saving my ***' ?? - by a young man he treated several years ago. I read this before I saw the professor and, I know it seems strange but I laughed out loud all the way through it !! - It is obviously not a pleasant read for most people reading about his journey through the various treatments for rectal cancer but having just been through them all myself I could well see the funny side of many of them !
Yes I have been on the website & YouTube. I have also spoken to the professor there, the guy that wrote that book(saving my ***)& his mum who runs the papillon website & obviously now you. Thanks for your honest responses to my questions. I’m so pleased for you that you’re still going strong after 6 years post treatment & you did what you thought was right for you, not your Oncologist. Well done.
