Low Rectal Cancer Diagnosis - newbie on here

Hi Jmas

Sorry but does that make the stoma permanent ? Was it ever going to be an option that it wasn't ? Sounds like you are doing really well? How low was it do you know ? My story is that it is low but I'm not sure exactly how low yet, I have had clear CT scans and colonoscopy and VT colonoscopy ! But not got MRI results yet until next week so presumably that will dictate treatment. I am scared if MRI wlll reveal

Any more than CT ... how do you cope with stoma ? Great that you look so well as I look in the mirror and can't see any difference ?  

Yes, it’s permanent. My consultant didn’t give me any other option! I have no idea how low it was, but put this way. He could insert a finger and very easily find it... I’ve since heard of the papillion (so?) treatment and have no idea if I could have been a candidate for that, but no point dwelling on it! All other scans have been clear so far. 

I cope mostly well with the stoma. I’ve always likened it to nappies! In that you get into a routine of changing it, it’s a bit smelly when you do change it, it’s a pain to change it sometimes, you become very knowledgeable on poo! It’s managable. I now wear high waisted shorts and jeans, or high waisted knickers! Keeps the bag discreet. I can even wear swimwear easily. You find your own way. But you might not even need one... keep us posted with your MRI results, hopefully you’ll get your treatment plan ASAP so you can get cracking. It’s the waiting and wondering that’s the worse. Once treatment has started you can feel like you’re actually doing something purposeful! 

Hi Annie,

I assume that you haven’t got a date yet to go in and discuss your MRI results.

I would reiterate that you take someone with you so that both of you can take in the information that is given and you can then discuss your options. I know it’s daunting for you and a lot will depend on the size, spread and position of your tumour. But do explore all the options open to you. I am not trying to steer you one way or another but you need to be doing what’s best for you. So don’t close yourself in on one option yet till you have got as much information as you can get.

It’s only by joining this forum that I found out about Papillon and I am glad I did.

The update on my situation is that I had an appointment with Professor Myint yesterday and he had the latest MRI scan images there post Chemotherapy and Radiotherapy treatment. He confirmed that I had had a good response to that treatment and it looked like the tumour had gone. He then said that there is a 30% chance it could come back if we did nothing where as if we went down the Papillon treatment this reduced to 11%. What did I want to do which I replied that I wanted to continue with the Papillon.

An hour later I had my first Papillon treatment where as just based on the MRI scans he thought I may need four doses at 2 weeks apart. This has now gone to 3 doses. The start of the procedure they apply some gels to numb and relax the area. He inserted a finger and said he couldn’t actually feel anything was there tumour wise where as everyone else pre treatment that had done the same could feel it.

He then inserted the scope which has a camera attached and took enough pictures to fill a scrap book. After what seemed like an age him fiddling around with the scope which was I have to say a bit uncomfortable they then proceeded with the treatment which takes about a minute.

After they had released me from the stirrups that they have your legs fastened up in the air and got me to sit down on the chair they fetched my wife in. He then showed us the pictures they had taken of the tumour site and he said that there wasn’t any real sign of it just a very small area of something which could be the remaining remnants of the tumour and said to be on the safe side I would have another 2 treatments instead of 3.

He said he was pleased for me that we had such a good response to the treatment so far and had seemed to be confident that I will be okay.

So 2 weeks from yesterday I should be having my second dose and should be clear of treatment by the end of July then it will be a case of regular check ups with MRI scans etc to Keep an eye on it in case it comes back.

I do hope you can look at more than one option once you have got the results back from your MRI.

You have had got some good information on other patients story’s on here but once you get your results you will be in a better position to focus on what treatment is best for you.

If you end up in a position of having more than one option and one of them is Papillon I am more than happy to answer as best I can any questions you have on the treatment.

I will of course keep updating on here my journey as things happen.

Kind Regards 

KevH

Hi Kev

Waiting for the date confirmation but it should be this week.. very daunting as you say. When you say spread, even though the nurse said CT shows no spread presumably MRI could show something else ? And the position of course which feels low. I don't know why consultant initially after colonoscopy seemed to not think papillon right so maybe she knows something I don't ! 

On another note. What wonderful news so far for you. What a great response. Just with radio ? why would anyone not have the extra treatment ? Thank you so much for letting me know what this option if mine is suitable. 

Please keep posting. As you say this forum has been of such comfort to see such calm and caring people going through so much. I don't know about you but I had hardly heard of this disease called rectal before - only bowel - baptism of fire. So you will be all done soon ? Will you need any chemo ? 

Thanks so much 

Annie x  

Hi Annie,

The MRI should show more detail it’s the images from them that I have been shown both from the Saint James Oncologist and Professor Myint.

Papillon wasn’t mentioned to me either at the initial diagnosis it only became an option at the follow on meeting as I had researched it after chatting with Catherine on here and then putting that on the table myself as an option that I wanted to look at. The Saint James Oncologist said it wasn’t classed as the Gold Standard but if I wanted to look at it they would support me. They pointed out the risks but it was still an option I wanted to look at. If Professor Myint had said I wasn’t suitable then whilst devastated I would have accepted the situation.

But if I had just gone with the Gold Standard and ignored the Papillon treatment I think I would have had the what if syndrome.

Keep us posted on the results of your MRI and you are not alone on here as you say it is a great comfort being able to share each other’s experiences.

Kind Regards 

KevH

Hi Kev

Fantastic news on your response and your first Papillon treatment! 

Keep us posted.  Should have more news on mum being offered Radiotherapy without surgery locally on Tuesday.

HRC

Thanks Hannah I have my fingers crossed for your Mum hope everything goes okay on Tuesday.

Kind Regards,

KevH

 Kev 

I will do and I have to say I will look at every option .. I am so happy you pushed and it worked out so far - it seems to me so brutal in this day and age the op but I know it is a life saver in many cases including me probably ! who knows and we make our choices based on our own facts. I feel very emotional in a good way as this forum ahd the people have been so much support to me at this horrendous time ..   xxx

Thanks Kev. Let’s hope as it’s taken 5 months since diagnosis, due to referrals and second opinions that it’s still at the same stage and not starting to spread further. Prof M telephoned the doctor but as she only works part time she wasn’t there to take the call. I would have loved to have spoken to him and explained everything as we didn’t have a face to face referral. I do actually know more about the whole situation than the GP! Things can get lost in translation.

Still having site conection problems. I wonder what causes this.  You have to type the email and keep coming back to it to try and post it and it can take hours. A bit frustrating!  Going to try using the old editor to see if that works.

Hannah

Hannah , I have been struggling with the site all week too . They have been working hard behind the scenes to fix it . Mine seems fine today so hopefully they have managed to sort it out . It has been an endurance test for sure!!!

Take care,

Court