Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org
Beating Bowel Cancer Community

Just Diagnosed

Nikki S

Rectal tumour

Hi all. I am a Transplant patient and after 20yrs on immunosuppressants I am paying the consequences. I thought I had piles, went to the gp 4times, could feel something hard in my left, ended up with a numb leg on that side, when I finally saw a consultant he said straight away it wasn’t piles but a tumour. This was only 2wks ago, I’ve had my MRI & CT & colonoscopy and I’m going back tomorrow. My Renal consultant says it hasn’t spread but it’s 3cm and attached to my sphincter (it comes out when I pooh), they’re saying best case scenario is they remove my bum and give me a bag. I’ve come across a radiotherapy called papillon, does anyone know if this would be suitable for me or is there simply no way of getting out of having a bag because it’s attached where it is? My Renal consultant has taken me off one of my drugs to help me fight but this will effect my kidney and I’m scared stiff of having a bag and being on dialysis at the same time :x:

Baxter2

Good evening @Nikki S and a very warm welcome to the forum. I’m sure you’ll find this a safe and supportive place and gain lots of information and support.

I don’t have experience or knowledge to help you with your questions I’m afraid but hopefully someone will be along shortly who can perhaps offer you more. It sounds like you certainly have more than enough on your plate!

Sending all my very best wishes,

K💚💜💙💛❤️

Lizalou

Hi @Nikki S and welcome, but sorry that you are suddenly in such a horrible situation.

If you enter 'papillon ' into the search box with the little magnifier at the top of the page, you will find a little bitof information . Alternatively, you could discuss things with @Charlotte Nurse Advisor (I assume you can't afford to delay things too much)

But, although a stoma bag must seem like a disaster, it really isn't. You will find lots of information and advice here from others in the same position, who have adapted very well.

Best wishes :x:

Stillme

Hi @Nikki S I, like you, had heard of Papillon and had contact with a few people who had decided to go down that route. I was determined not to be pushed into having the surgery especially when my original tumour had already been removed and it seemed the surgery was 'just' a precaution. I was very lucky that my surgeon was happy to refer me to another hospital for their tests and thoughts which took the pressure off me. The results for papillon in straightforward circumstances can be very good. However, in my case the surgeon did explain more and my tumour had broken up when being removed and also he said there was a 25% chance of the cancer having already spread to my lymph nodes but that they wouldn't know that until it showed on scans and then may be too late. My scans in September showed no lymph node involvement.....he even said that I could 'Watch and Wait" if I prefer. After hours and hours of discussion, research etc etc I decided to have the surgery and had huge doubts right up until they put me under that I was doing the wrong thing. I had my surgery on 8th January this year and they found cancer in four lymph nodes. Please please don't think I am trying to scare you off as it is a massive decision but most of the Papillon stories are of people who show a complete response to the treatment but I am just so so glad I went for the surgery. Yes I had some very down days afterwards and cried on and off for days, and yes you can see some of my previous posts of despair and leaks and originally I said I would rather be dead than have a bag, but I can honestly say that only 3 weeks after surgery my pain is subsiding, I have been out and about and am wearing normal clothes. So from despair to almost normality in three weeks. Again please don't think I am trying to sway you but I honestly know your dilemma :x::x::x:

Charlotte Nurse Advisor

Dear @Nikki S,

I am just responding to the tag from @Lizalou (thank you). The role of Papillon in the treatment of rectal cancer is gaining some momentum but is only really applicable in certain cases.

At present NICE guidelines recommend the use of Papillon (or low energy contact Brachytherapy) in patients with rectal tumours who are considered not suitable for surgery (generally this refers to elderly or medically unfit patients).

The guidelines do comment on patients in whom surgery is suitable but choose not to have an operation. The advice here is that the current evidence on how effective this method of treatment is compared to surgery is inadequate, i.e. they cannot recommend it's use over surgical excision.

As others have mentioned the problem with a non-surgical approach is that it is not possible to confirm the nodal status of the disease. Once the tumour and surrounding tissue has been removed the histopathologists carefully examine all the lymph nodes that have been removed with the specimen and look for evidence of cancer. This finding is particularly important in staging the disease and determining if any further treatment is needed.

I do note your past history of a transplant and the subsequent immunosuppressants you have had to take. I would definitely discuss this further with your colorectal surgeon who can talk through the possible treatment options with you and help you decide on a treatment plan that you comfortable with.

With kindest regards,

Charlotte

Nikki S

Thank you all. I’ve just got back from seeing the consultant and he seems positive they can treat it with radiotherapy and chemo, my transplant obviously complicates things but it’s a better outcome than the nurse gave me! :x: