Hi Genna, 

I just wanted to welcome you to Cancer Chat and let you know you're not alone as some of our members who have also been given a rare cancer diagnosis will know what you're going through at the moment so hopefully they, and anyone else on the forum with the same diagnosis, will be along soon to offer you their support and advice.

If you'd like to talk to one of our cancer nurses about what's going on then do give them a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator

Thank you. 

Hi Genna,

I hope you are doing good and feeling better soon.

I can semi relate to your post, I had surgery 6 weeks ago for what was thought a muccocele of the appendix.  It turns out I had appendix, bit. If bowel and 2 different rare cancerous tumors removed.

Have had a CT scan since of chest and seeing consultant on Thursday of this week.

Its only this last week that I have felt fitter, mentally better and able to move without too much hassle. 

I wish you well.

Hi. 

Tha is for your reply. Was you told much at the time. I just seem to have been told there was a tumour in my appendix and that it was being passed to a multi disciplinary team at the hospital (about a hour away from me). They told me they would be looking at my case on friday (last week) and I've heard nothing. No appointments,  no contact nothing. I dont know if its cancerous or if its spread nothing. 

Thank you 

Hi..

I didn't find out about tumours untill after I had left hospital, nearly 2.5 weeks later. As they are rare the hospital has called on other experts to gain more knowledge on what plan is required.  I have had a CT scan too as mentioned before and anticipate an update this Thursday with a call with consultant, appointment cancelled due to the "virus".  My scan has gone before the MDT which is standard practice I believe.

Looks like we are in the same boat then. I am just waiting to hear from the MDT now.  I dont really know much about cancer as I've never met or known anyone to have any form of cancer so it's hard talking to people about it so I'm really grateful for you replying. I imagine lots of appointments will be cancelled or postponed due to the virus. I dont know what to be more scared of, coronvirus or cancer!!

I hope your staying safe. 

I couldn't agree more, I have two adults still working and am still unsure if I, we, are more high risk.

I am being abnormally, weirdly for me as I am staying relatively calm and then bam, the whole thing flashes in front of you.

I take it you have not been advised of possible treatment or anything. Consultant said that I might be monitored for up to 20 years.  I don't know if I will have to undergo"treatment" which does freak me out.

J

They discussed possible surgery  they said they wanted to remove a small peice of my bowel and then also possible chemo. We are hoping the tumor was only inside the appendix and no where else so treatment is minimal. I guess it's just a waiting game now. 

It keeps hitting me in waves, I'm a little bit of a control freak so having the control taken away is probably the most stressful thing as theres nothing I can do. And now because of coronavirus it's going to be an even longer process. 

I hope you get news soon.

I did call the hospital quite a few times before I got an update on where the scan was and what was happening. I was very patient waiting for an update but eventually now have a telephone consultation.  

I hope you get news soon and it is news you would like to receive.

Jxx

Thank you

I recieved a letter from hospital yesterday saying I have a telephone consultation with a specialist nurse. It also says it's a Colo-rectal follow up and I dont have any idea what that means. I'm still in the dark and still have heard nothing from the MDT. 

I called my GP and he didnt even have a clue as to what was happening as they had not been informed. 

It's all the waiting, its driving me insane.