Low Rectal Cancer Diagnosis - newbie on here

I just wanted to add that we built up our hopes for Papillon however, it is not just all about size, my dear mum is not suitable because the tumour is too low, 4 mil up. It doesn’t mention this on the Papillon site, just that it needs to be less than 3cm. Mum is very unfortunate but each case is different.

We now wait to see if we can get Radiotherapy without surgery (mum cannot have surgery as she is too high risk because of other health issues). 

As Kev has previously mentioned, it does delay things when you go for referral and second opinion but it is definitely worth it.  

Don’t give up until you’ve looked at all the options. You have to be proactive as you only get offered the gold standard ‘cut and cure’ in the first instance. I only wish I had been prepared at our first consultation. 

This site has been so helpful. Kev and Catherine’s journey gave me the inspiration to keep going to try and get what’s best for mum.

Good luck 

Hannah

Hi Kev 

Sorry to bother you but I have the opportunity to be referred to the Christie rather than stay with wythenshawe do you have any thoughts or experiences ? Many thanks 

Hi Annie,

Sorry I haven’t been able to fully respond to a lot of your questions. I have been having a lot of trouble posting on here but Rebecca has I think covered a lot of Ground with her story regarding differences between CT and MRI scan.

I can’t advise on Christie’s I am afraid. If I had proceeded with the path they had set out for me I would have had the Chemotherapy Radiotherapy at Saint James which is what I did but then I would have had to gone in to Saint James for the big operation and the stoma.

With the research I did and Catherine’s knowledge I found that if I could go down the route of having the Papillon treatment then there are only 4 centres currently carrying this treatment out which is Guildford, Nottingham, Hull and Clatterbridge. I chose Clatterbridge because Professor Myint is there and he has taught the other centres about the technique.

It is still NHS treatment but hopefully a better outcome to what they had mapped out for me. It is a Travel to get there about 3 hours for us with a comfort stop. But if it’s successful a better quality of life will be achieved.

I don’t know if you are looking at Papillon as an option but the places I have mentioned is where you need to be referred to and I would suggest if you are looking at that then ask to be referred to Clatterbridge and Professor Myint he is based at the Wirral.

Kind Regards 

KevH

Hi Kev 

Thanks so much for your reply. So many decisions. Glad you seem to be doing so well 

Many thanks 

I know it’s daunting and I was in tears at the beginning when given the initial diagnosis but I used the time between that appointment and the next doing the research on Papillon.

You have to try to be proactive and once you are furnished with the information you have to make the decision that is best for you. At the end of the day it’s your decision to make.

It could have been that Papillon wasn’t an option for me but if I hadn’t done the research and went ahead with the big operation and then found out about Papillon I would have been living with the what if syndrome.

Kind Regards,

KevH

Kev 

Thabks for all your advice - guess what I received the first chink of light in this dark episode - the consultant called me today to tell me that the CT reports has came back definitely clear for the abdomen / liver and chest / thorax so no spread .. so a baby step but she didn't mention about MRI I had the other day and I forgot to ask as I was so emotional .. to fight another day ? 

Hi Annie,

Hi Kev 

Yes, thats next . Do they know about node involvement from CT colonoscopy or MRI do you know ? Thanks Kev

I wasn’t called in for a chat until they had done the CT & MRI scans and endoscopy once I then had to go in for a  bigger sample to be taken as the biopsy samples they had taken with the endoscopy had proved inconclusive.

After they had the results from the further biopsy they called me back in and went through the diagnosis the consultant had the MRI images up on his screen and showed me the tumour it wasn’t till the follow up appointment that I got the full details but I believe that they had picked up from the MRI scan the areas that were affected.

So in short I think that it will be the MRI images that they would use to determine as to what was affected or not. The MRI scan shows more detail than a CT scan.

Kind Regards 

KevH

Hi Kev 

Thanks for that. Yes my MRI was just pelvis so I suppose that shows the tumour local affected whereas the CT shows liver lungs distant .. as they just did mri on my pelvic area then that just show the size and how deep etc like you say . So stlll all to hear .. but a bit lifted that hasn't seemed to have spread to the liver lungs etc 

It's a journey . thanks Kev