I was shocked to be told I have this rare cancer and wonder if anyone else on here can share their experience. I feel so scared but trying to be strong for my son. I have a provisional date for a hemicolectomy in early March
Hi
I just want to welcome you to the forum . There has been people who have passed through the forum with your diagnosis and join us in the bowel forum as the treatment follows a similar pathway to bowel cancer .
Given it’s rare I have not seen anyone posting lately but there may be someone reading who will be able to help you .
The most important aspect is you are operable .
Where you having symptoms ?
What is universal is the fear associated with cancer and everyone here understands that .
I have linked in a previous thread of rarer cancers in that area . Just to give you some hope .
Good to hear you have a surgery date lined up .
take care ,
Court
Helpline Number 0808 808 0000
Hi Myam,
I know your post was a year ago but I've just been told I am likely to have a rare appendiceal cancer too and have been referred to a specialist centre in Basingstoke to confirm it. How are you doing? I'm very fed up as I've had 2 breast cancer surgeries and now this. Just reaching out in the hope of some reassurance.
Hi
yes Basingstoke is the centre of excellence and they are amazing. I had surgery CRS followed by hipec last March and have had 12 rounds of Folfox chemo finishing in February. My latest scan is NED but I have been in hospital twice for bowel obstruction which is incredibly painful. . There is lots of info and support in the Pmp appendix cancer Facebook site which you should join, doctors here don’t know anything or little about it
Hi there, no i can't see your reply sorry, can you resend? I'm not sure why i can't see it.
Hi I’m sorry you’re having to go thru this but the Basingstoke team are the centr of excellence in UK and I’m hoping that the CRS and hipec I had last year has given me hope. I’ve not had an easy yr / I was in hospital for over a month as my bowels would not start working. Walk walk walk as much as you can . I then had 2 more local hospital admissions with small bowel instructions excruciat
g pain. I’ve just finished 12 rounds of chemo and my latest scan shows Ned. I’m feeling well and foing as much as I can as this disease is sneaky and can hide from scans. I was told I have goblet
cell adenocarcinoma , rare and aggressive such a massive shock . There are Facebook sites which give you so much info that I joined and learned more there than anyone else. Local oncologist rarely
ee this cancer. I hope yours is low grade and even if stage 4 (nearly all appendix cancers are) there is a lot of hope and people on the site have had it for nearly 20 years. If you want to pm me
u can do it thru the fb site
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007