Low Rectal Cancer Diagnosis - newbie on here

Hi HRC,

Thanks for your message I am glad your Mother has other options to look at now and once you have got a treatment plan sorted it gives you something to focus on instead of a whole load of uncertainty.

Yes I did create some delay to my starting on treatment by pursuing a second opinion but I picked up from Catherine that the type of cancer I have is slow growing which was confirmed by Professor Myint.

The waiting time I have had between the end of my external beam radiotherapy and Chemotherapy is to give me time to recover from that prior to starting the Papillon treatment.

I do hope the alternative plan for your mother gets sorted quickly and improves the situation for her.

Please keep me posted on your progress as I will post updates on my progress here as things happen.

Good Luck and Kind Regards,

KevH

Hi Kev

I hope you are doing ok. Apologies if you have already received this, but I’ve been having connection problems.  Following the second oppinion from Clatterbridge mum is not suitable for contact. It is still being advised that mum has surgery and a defunctioning stoma before Radiotherapy. This can’t happen as mum cannot have surgery due to the very high risk. We can have Radiotherapy elsewhere without surgery, but will need to travel.  I wondered if your symptoms settled down after your course or if there is chance they don’t go away once treatment is stopped? It would be 25 Gy in 5 fractions.  Poor Mum is an unfortunate case but is prepared to go through these side effects in hope of a response and the chance of other possible treatment.

I hope you don’t mind me asking and I wish you all the best for Thursday!

Good luck and no problem if you can’t advise.

Hannah

Hi Hannah,

I hadn’t already received your message. I too was having trouble the other day posting an update whilst I could type in the box when I kept trying to post nothing was happening so I gave up.

Week before last I went for a fresh MRI scan after talking to Professor Myint on the 23 May about how it will be determined that my tumour has responded to treatment and shrunk. He initially said that the probe on the Papillon machine has a camera on it so he would be able to see via that but then suggested I have a fresh MRI scan done locally. I arranged with the nurse that I would have it as close to my appointment with Professor Myint but not too close that he wouldn’t have access to the images in time so I had that done on the 14 June.

I had an appointment with the Oncologist from Saint James last Tuesday which was primarily supposed to be to examine my skin. Because I was going to Clatterbridge this week he didn’t do that but he had the images of my previous MRI scan alongside the fresh ones and showed me the differences. There was no no trace of the Tumour in the Sphincter and he said I had had a good response to the treatment and that the tumour now just resembled an appearance of scarring. He then said it was as good as it gets.

I have received a copied in letter today to my GP which confirms the discussion we had and the outcomes so it is looking positive for Clatterbridge and me having Papillon Treatment.

So far as the remaining symptoms I still have some albeit things are starting to settle down a bit. Generally my toilet visits are dipping down from initially after the treatment anywhere up to 5 visits a day now to below 3 visits quite a few days I am going once. I have had a couple of blips since finishing my treatments and had to go into the tablets they provided whilst having chemotherapy and radiotherapy which I retained in case I needed them. Last Tuesday went 5 times and yesterday 4 times but taking the pills stopped it.

The entrance to the bum is still quite sore and yesterday won’t have helped.

I was advised by Professor Myint that I can use Anosol now but I am not sure if that is doing anything to ease it. I am using wet wipes and bagging them up so as not to block the toilet up.

I am not sure how long things are supposed to take in my case to settle down and things might get stirred up again with the Papillon treatment starting Thursday.

Your Mum might not get the same side effects as me if she does embark on a course of Radiotherapy but they should give you a ringbinder with information on the treatment and any potential side effects and you should have a discussion with a consultant prior to outline any possible treatment and side effects and that would be the ideal opportunity for you to ask your questions then.

Is Clatterbridge writing to your mums consultant to recommend EBRT or is it a case that you will have to push for that yourself?

It should be your Mums decision as to what treatment she undertakes after being given all the information on possible options but if Clatterbridge has suggested trying EBRT first then hopefully if you decide you want to try that route first you shouldn’t have too much of a battle on that front.

The Oncologist from Saint James whilst pointing out it wasn’t the Gold Standard of treatment for my tumour he was supportive of me exploring the Papillon Treatment route. His letter to my GP does say as a result of the response to the Chemotherapy and Radiotherapy treatment that he has assured me that I would be a suitable candidate for Papillon treatment. Which I thought was nice of him.

I hope you both get the support you require in order for you to make the best decision for your Mum. Keep me posted.

Kind Regards 

KevH

Hi did you have EBRT or is that the same as contact at papillon. ? 

EBRT is external beam Radiotherapy which along with Chemotherapy I completed a 5 week course on the 18 May. EBRT consist of the tumour being zapped by a machine from outside.

Papillon consists of being placed in a position so that a probe can be placed inside the rectum and radiotherapy is then applied directly on to the tumour with the intention that it will in effect slice away a bit at a time with each treatment. (Contact Radiotherapy) At the second session the treatment area will be viewed with the camera to see if the tumour has responded well to the first dose if it has and there is a need for a second dose then this will be applied. My understanding is that it can be applied up to 3 or 4 times usually about 2 weeks apart but would depend on the size of the tumour and how well it responds to treatment.

I am not the expert but hopefully this goes some way to explain the difference.

Kind Regards 

KevH

Thanks Kev 

Did you have EBRT ? Why ? Did you have surgery as well. Sorry so many questions 

My tumour is low down and yes they were suggesting that I have surgery after having EBRT and Chemotherapy. The idea that the EBRT and Chemotherapy was to shrink it then I would have had an operation to remove the tumour but because of the position of it I would then be fitted with a permanent stoma. I wasn’t happy with that and wanted to explore other treatments which in my case is the Papillon.

Thanks Kev if you don't mind how low was yours and how big ? As they don't seem too happy to refer ? 

Having to reply in 2 bits has having problems with the site.

I did some research after chatting on here with Catherine into the Papillon Technique. If the tumour is 3cm or less with no effects on other organs or Lymph Nodes then it may be a possibility that Papillon Technique could be applied.

As I said in my earlier response because of the position of my Tumour they could cut it out after they have treated it with Radiotherapy and Chemotherapy but if you like they would be cutting out the very thing you would connect back on to once everything had healed back up so I would be left with a sewn up bum and a permanent stoma. Some people that have tumours further up can be reconnected after everything has healed up after surgery. I am not in that position so through chatting to Catherine on this site She guided me towards looking at Papillon. So I asked my oncologist for a referral to Professor Myint at Clatterbridge. He assessed me and said my tumour was slightly bigger than 3cm and had signs of affecting the Sphincter but if I proceeded with EBRT and Chemotherapy for 5 weeks it should shrink the Tumour and make it in his words doable for having the Papillon treatment.

Which is the line I am progressing and if you have read my replies to Hannah you will see that the course of 5 weeks of Radiotherapy and Chemotherapy has done what we had hoped.

I am lucky that the type of tumour I have is slow growing and it has been found before it had any effect on any lymph nodes and we have caught it early enough to get it out of the Sphincter.

I wasn’t looking forward to having surgery and a permanent stoma without exploring any possible alternative treatments. Even if it’s successful it may come back in the future and then I’ll have to get my head round surgery and a stoma then but in the meantime I am prepared to put up with what ever side effects I have to in order to try and avoid a sewn up bum.

Kind Regards 

KevH

Trying again think there are problems with the site.

I think I may have covered the answers you require in our crossing messages.

But mine was low down and 3cm in size heading towards 4cm.

Mine isn’t right at the entrance but probably about 3 to 4cm up.

What size is yours and where?

I wouldn’t necessarily let them dictate to you regarding a second opinion or referral if you think you might have other options to explore. I know it’s a difficult time but try and do some research there is a site called contactpapillon which I looked at and found the questions I felt I needed to ask to then push for a referral if the answers met the criteria in there.

KevH