Colorectal Cancer

Hi Gordy8426e9b8 and a warm welcome to the board. Have you considered Papillon treatment? There has been a few success stories on here - see link below and if you click on Jogey’s name then his profile page will show his treatment to date and also some top tips at the bottom!

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/299172/milestone-update/2195742

Here’s a link to the Clatterbridge Centre where they do the Papillon treatment

https://www.clatterbridgecc.nhs.uk/patients-and-visitors/our-services/papillon-treatment

Hope this helps. I’ve seen posts where people have had a complete response then no further recurrence and I’ve seen posts where they’ve had a recurrence within 6 months but there’s no harm in giving it a go and hopefully becoming 1 of the 20% club!

Take care

Karen x

Hello

my husbands cancer is rectal into anal canal, he was offered 5 radiotherapy then surgery permanent stoma or 25 treatments of radiotherapy with chemo tablets with a 1 in 4 chance of not requiring surgery. So 25% chance.

he chose the 25 treatments and we are today in fact going seeing consultant to see what the outcome is. After the 25 treatments my husband has to wait 8 weeks to be re scanned so it’s been a long journey. 

on a positive note we know it has shrunk as he can now sit down comfortably ( couldn’t before).

my husbands theory was worth a chance to be in the 25% gang and went to all his radiotherapy appointments which was Monday/ Friday for 5 weeks with the mind set each time that they were shrinking the Tumour tho he chose different words …Let’s shrink the ……. 

He could not have lived with not trying… if it turns out today that surgery is still required he’ll know he gave it his best shot. 

The treatment he coped with extremely well with only fatigue as a side affect no sickness… some bowel issues but that is to be expected.

wishing you well with your journey 

Thanks for the reply, all the best and hope for good news 

Thanks so much for replying, very helpful

While I think it's worth a try to avoid the stoma, I'd like to add from my perspective that the permanent stoma is not as bad as he may think. I ended up with 2 permanent stomas as a result of rectal cancer that invaded the bladder. I feared the stomas but did not find them to be as bad as all that. It takes some adjustment but you quickly become accustomed to your new normal. It doesn't limit you and you can live a perfectly normal life with a stoma or 2.

Hi Geordy, did you decide on what you are going to do? I have a similar dilemma and I still dont know what choice to make. You can see my thread on here if you've not seen it already.

Hi, yes decided for option to 2, start 5 days of radiotherapy on the 29th of September then start 3 months of chemo on the 30th of October, if unsuccessful it would be surgery 8 weeks after. If successful it would colonoscopy every 3 months for 3 years I think.  The reason I went for option 2 is that's even though I know they chances are slim, I would hate myself for not trying, whilst I've accepted will probaly getting stoma and have come to terms with it, I would still rather avoid it haha.  What is your thought process, Any worries in particular?

Cheers

They just offered to remove the tumor and watch for 7 years (its a very thorough, almost every 3 months surveillance, tests, examinations etc) with no radiotherapy or chemotherapy or do the full monty with 5 years worth of checks. Its from one extreme to the other. I dont really understand it and they dont really support why they wont belt and braces do chemo with the first option.

Hi, how did you husband get on? Hoping it went well.

Cheers

Hello 

glad you have made your decision, my husband is in a watch & wait do having another colonoscopy in two weeks but currently it’s positive. 

il so glad they’ve offered you treatment first 

lets us know how you get on