Low Rectal Cancer Diagnosis - newbie on here

Hi Rebecca !!! 

So good to hear from you. I have been thinking about you a lot. So glad you are out the other side of the liver surgery. Well done ! And although it sounds as though it was gruelling, you've done it and recovering now. Sounds like it was tough though but so glad they were able to operate so quickly. Your posts are always so sensible but humorous in the toughest of circumstances and being away with the fairies sounds as if that was hard!! But you are through the other side now and that is great you have done so well! 

I have finished my chemo rad last Friday! Yay! It was exactly as you had advised and I tolerated everything really well but have had pretty uncomfortable stinging from the 3rd week to now even after it has stopped but I think it just maybe getting less now ! Like the worst cystitis in human history ??! The oncologists / consultant seemed very positive as my symptoms disappeared after really the first week .. so they think I may have had a good response. Because the radiologist scan during the treatment and seem to be able to see the size and position of everything by the inbuilt scanner on the very new radiotherapy machine, I do wonder how much they actually know- can see during treatment? The other odd thing was that suddenly the consultant added another 3 days direct boost at the end .. direct to tumour area .. no explanation ! .. so what they said was 12 week wait !!!!! As radiotherapy continues working as you said .. scan after 10-12 to see what has happened. Have to say they seemed relaxed and said CEA level was normal 2 .. and symptoms gone so they were hoping for good response and either watch and wait  or shrunk enough for options on op.. I asked if I would have any chemo in the wait and they said no.. it does seem a long wait !! 

So .mot sure .. but hoping .. I am thinking still about papillon consultation in between ... so glad for you Rebecca that you are recovering well .. and sooo nice to hear from you as I was thinking of you she how you were  all the time xxxx Anniexx

Hi Kev how are you doing ? How is treatment? 

I have finished radio chem now and recovering fast. My original symptoms at diagnosis have disappeared so that's good and my CEA level is 2! .. so now I am on the wait for a few weeks to see if gone or what next .. 

Hope you doing well xxx Annie 

Hi Annie,

Sounds like you have had a very good response and tolerated the Chemotherapy and Radiotherapy well.

My treatment finished in July I am on what they call a watch and wait scenario now. I have gone and had some blood samples taken nearly 2 weeks ago. Last Sunday I was at the hospital having an MRI and then CT scans done. This week I am going over to Clatterbridge to attend a Patient Support meeting on the Wednesday evening and then I see Professor Myint the following lunchtime for him to insert the camera and see how things are. So hopefully I’ll be in a better position to report them on my condition.

In myself I am fine the toilet visits haven’t fully settled down yet some days I go up to 3 times but not been into the pills too much. It’s not every day that it’s 3 times and I do have a few days I only go the once in the morning. But the information does say it could take a while for things to settle.

 I am glad you are doing so well and I hope that your scan when you have it done shows everything normal. It sounds as though you are progressing well and I am pleased about that.

 I will post an update after my visit to Clatterbridge in due course.

Keep smiling and keep positive.

Kind Regards 

KevH xx

Hi Kev,

sounds like you are doing so well.. do you have the results of the scans as yet , were your toilet visits a bit erratic straight after radio chemo ? Mine is starting to settle down but were a little more frequent directly after radio chemo... How many weeks after the chem radio was it that you had your first papillon ? Yes I must admit I am feeling so well it is weird .. onwards eh .. i am so pleased you are doing so well Kev !!

love Annie xxxx 

Hi Annie,

I hopefully will get the results from the latest scans next week when I see Professor Myint.

My toilet visits seemed to increase throughout the treatment with Chemotherapy and Radiotherapy but settled down quite a bit after but then increased again after the second dose of Papillon and haven’t fully settled down since I finished that treatment yet.

The soreness at the entrance to the bum has gone. That ebbed away gradually after the Papillon treatment had finished.

I started the Papillon treatment 6 weeks after finishing the External Beam Radiotherapy and Chemotherapy.

So fingers crossed that everything is showing okay next Thursday and that it’s just a matter of time with the toilet visits. I have the Loperamide pills still to hand if required although I did pick up some more of them I have a few left from when I was having The Radiotherapy and Chemotherapy I thought I had better stock up a little bit as I am scheduled to go on holiday in October.

Professor Myint put the pills on a form for me to take into the GP Surgery to have them on a long term Prescription so I think it must be normal after having this type of treatment that you may have occasional bouts of frequent toilet visits.

As I said in the earlier post that I do have days where I just go the once in the morning but there not yet in the majority but it’s gradually heading that way.

Kind Regards 

KevH xxx

Hi Kev

Its good to here your update. Good luck at Clatterbridge next week! I’ll keep my fingers crossed for you. I’m pleased that your side effects have settled down too. Mum had her 5 fractions of Radiotherapy this week she has had some side effects already but we are hoping that they won’t be ‘too distressing’ as this is why they were not going to give it without the defunctioning Stoma. I am thinking as time goes by over the next few weeks if the side effects dont get any worse she may be lucky.

They have given her Flamazine, I think that’s what it’s called, but I’ve taken down all the good advice I’ve seen here and from you too.

6 weeks to go till scans and then we find out if there has been a response good enough to go on to Papillon!

Best of luck

Hannah

Hi Hannah,

So good to hear from you and thank you for your good wishes. I hope the side effects your mum is suffering are not too severe and I hope she recovers well soon. Keep us posted on the progress and keep your spirits up.

Ill let you know how I get on next week.

Kind Regards,

KevH xx

Hi KevH,

Did your journey start off at Clatterbridge or were you referred there by another hospital?

Since colostomies are considered the gold standard some surgeons seem reluctant to refer on to Papillon.

Regards,

AEC

Hi AEC,

My journey started with the GP, then Pinderfields hospital after having CT,MRI scans and an Endoscopy then back to Pinderfields for a further procedure to take samples under anesthetic as the endoscopy samples were inconclusive.

 I then was back to Pinderfields for the diagnosis to be given to me with a follow on appointment to be furnished with the gory details. At the first diagnosis meeting the Stoma nurse gave me a Macmillan book on low rectal cancer and within that book was the site address for here. I got on the forum and through the thread found out about Papillon.

This led me on to do a bit of research about Papillon and I laid out a load of questions to ask at the second diagnosis appointment and if the answers fell into the parameters of possibility of looking at Papillon then I was going to push for that to be looked at.

So it was me that put that in the meeting that I wanted to be referred after the answers I was given seemed to fit.

The Oncologist said it wasn’t the Gold Standard but after pointing out the risks he said that he would support me. He pointed out that I would probably still have to go through 5 weeks of Chemotherapy and Radiotherapy regardless first at Saint James.

If you want to look up a site called contactpapilon.com there are some articles on there from Professor Myint.

You are right about the reluctance to refer and it is not necessarily a suitable treatment for everyone but if you do the research and you believe your parameters fit then you can ask to be referred.

The key issues are the size and position of the tumour and if it has affected any Lymph Nodes or other organs.

Happy to try and answer any other questions if I can.

Kind Regards 

KevH

Hi KevH,

Thanks for your interesting reply.

I was particularly interested in your referral path because when I mentioned Papillon to my Consultant Oncologist he did not seem very keen.

I am waiting for scan results sometime in October to determine the response of my tumour to chemoradiotherapy.  After that I envisage I will need to be quite forceful with the surgical team in order to get them to refer me to Papillon.

Best wishes with your upcoming treatment.

AEC