Low Rectal Cancer Diagnosis - newbie on here

Thanks , that’s no problem I will look it up and appreciate the info ,

kind regards,

Court 

Hi All,

Had my new MRI scans done today at Clatterbridge and then an appointment with Professor Myint. He has looked at the images which are a lot clearer than the ones done at my local hospital.He has now graded my cancer has T2 early T3. The good news he says it is doable so far as having the Papillon Technique applied.

I will have to undergo 5 weeks of Chemotherapy and Radiotherapy which will get underway at Saint James and I have a provisional date for the first dose of the Papillon at Clatterbridge for the 23 May.

So I am feeling a lot better this afternoon for being able to go down this road. It will still be a bit gruelling but if I come out the other side with my bum intact and no stoma it will be well worth it.

I’ll keep you posted on my progress.

KevH

Hi 

I am currently undergoing chemotherapy and radiotherapy at St James Leeds for advanced local rectal cancer. Nearing completion with 5 out of 28 left. I am facing the prospect of a permanent colostomy and the removal of my anus and rectum. Looking for an alternative to the "Gold Star" treatment as at the age of 55 it is a big step to take. Any thoughts?       

Hi

Although I didn't have so much pre op chemo I have a permanent stoma and sewn up bottom. (See my profile for details) Pain was bad for a couple of months but with a positive attitude you get by and I did a lot of gardening and DIY at my pace. Back at work now and apart from a few embarrassing moments of wind everything is looking up. Not so bad considering the alternative. You will make it through. 

Hi Kevin

Your journey sounds like where I want to be.How do I start the ball rolling for the Papillion Technique? Doe my surgeon have to recommend me?

I would really appreciate  any info you can give me- I just need to feel in control of what I can be in control Of!!

Xx kristy

Hi Kristy,

If you can look up these websites below and if you feel you fit in with these parameters then ask for a referral to Professor Myint.

www.contactpapillon.com look up medical articles the top one of the list is an article from Professor Myint.

www.clatterbridgecc.nhs.uk on there there is a section about Papillon Technique.

In essence if the cancer is 3 cm or less and no effect of any organs or Lymph Nodes then the Papillon Treatment may be an option.

I after receiving the bad news that I had low rectal cancer and my next appointment which went into more detail joined this site and this tag read about Catherine’s Journey which involved Papillon Treatment led me on to looking deeper into it and asking some key questions at the follow on meeting with the Oncologist. These answers were favourable so I asked to be referred to Professor Myint whilst the Oncologist pointed out it wasn’t the Gold Standard they would support me.

He did say I had done my research but as I have said previously it was down to reading Catherine’s Journey.

I can’t say whether you will be a suitable candidate or not but if you manage to get an appointment with Professor Myint he will tell you.

I haven’t started any treatment yet I will be having chemotherapy and radiotherapy at Saint James commencing middle of April.

Kind Regards 

KevH

Hello Kev 

Thank you for your reply I will look into it.at least when I go to see surgeon  on Wednesday I will have done my research & feel more in control.

How many sessions of chemo & radiotherapy  will you be having?

I wish you good luck during next stage of your treatment. Keep me posted & thank you x kristy

Hi Kristy,

I was told it would be around 5 weeks of 5 days a week. The Chemotherapy I was told would be in the form of 2 tablets a day 12 hours apart on the days I am having Radiotherapy.

I saw the doctor yesterday to go through and sign the consent form. Then was asked to go down to the blood test department for some to be taken. In the afternoon I then had to have a planning scan done and some Laser marks put on my body.

Apparently when you have the Radiotherapy you have to be in exactly the same position at every treatment.

Not sure what side effects I will suffer whilst undergoing the treatment they have given me a ring binder with lots of information and whilst it covers a lot of possible side effects it does say that not everyone suffers them.

So it could be a bit gruelling but you have to think of the positive side that it’s aims is to help make you better.

Keep well and think positive 

KevH xx

Hi everyone,

There’s a few posters here so I’ll reply to all in one quite generally. If anyone wants specifics please feel free to DM me.

This is exactly the procedure I went through, low rectal tumour stage T3b. Been through he chemo tablets and radio - 5 weeks as has been mentioned. Then 14 weeks of recovery.

I am two weeks out of the op to remove the cancer and have had a permanent stoma fitted and my bottom sewed up.

It will be very daunting if you are st the start of this journey but the one piece of advice I winks give you is to focus on only 1 day st a time. It all sounds overwhelming but handling with positivity like another poster mentions you will get through it and be much better for it.

Regarding Papillon you should ask to be referred - I pursued it and am glad I did, even though I could not have it. It may depend upon where you live but contacting Prof Miynt’s secretary and Clatterbirdge hospital is a good place to start.

As I said, there is a lot for you to take in but please try and take my advice on taking one day at a time. It’s the only advice in my life I have been able to dispense that I actually followed Esther than it being something I wish I had followed. It kept me sane and happy and still I am happy! (2 weeks post-op and been pretty much in bed for the whole two weeks and seeing improvements each day - just had my “butt stitches” out yesterday.).

Feel free to DM me for help with any aspect. Foods, traveling whilst undergoing treatment (it can be a challenge), life with a stoma, operations, emotional well-being.

Cheers, all be best and above all relax x

Thank you Kev 

I really hope & pray it goes as smoothly as possible for you.

Please let me know how you are getting on xx Kristy