Anyone in/has been in a similar position to me?

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Hi Everyone,

My CRT finished in November and was followed by 3 rounds of Oxilaplatin. I had a CT scan and an MRI the week before last and met with my Oncologist last week. I have been told that my treatment has worked really well, and I can be "cured". Great news, but, a small tumour remains. I asked how big the tumour is, but was told there is no measurement because it is so small. I am N0 M0 V0. However, I have been told that I will need APR and a permanent stoma because of the location of the tumour. The tumour is very low and was 4.7cm before CRT. An appointment has been made for me to see the surgeon next week, presumably to book me in for a stoma. I have asked my Oncologist about a referral to Clatterbridge and have been told this is a possibility. My surgeon seems opposed to anything other than surgical removal of the tumour - regardless of the life-changing surgery, and told me before my CRT commenced that a stoma was the only option for me. I know that with APR I will be "cured" within a couple of weeks, but feel I need to pursue the option of Papillon if at all possible and avoid a stoma. Has anyone else been in a similar position? Can anyone tell me what the process is for a referral to Clatterbridge, and how long does it take?

Thanks x

court 7 months ago

Hi Susie64

KevH

You might find KevH had a similar situation .

Take care ,

Court

Helpline Number 0808 808 0000

Susie64 7 months ago in reply to court

Thanks, Court. I followed the link and read KevH's story. So inspiring. I also found and read Powder's story. Again, so much positivity and gave me hope. I am grateful to those who post their stories to give the rest of us hope. I hope that one day I can post mine to give others hope x

Lucy1382 7 months ago

I am on my final Papillon now- definitely have a look at it. I was offered it from the beginning at my first MDT but had radio/chemo to shrink the tumour first. I don't know much about why some people and not others are able to have it- there does seem to be a very specific criteria about location with rectal tumours, but it does seem weird that you have to have something so, as you say, life changing when there is barely anything left! Also in my Papillon info leaflet there is an option, if Papillon doesn't get rid of everything to have transanal endoscopic microsurgery, which is done under GA but still doesnt appear to be as radical as the other options.

Susie64 7 months ago in reply to Lucy1382

Thanks, Lucy.1382

I did some research and found the Papillon Patient forum and read some very inspiring stories. Just hoping now my oncologist has made my referral . Hope your final treatment goes well.