Hi all,
I have mucinous adenocarcinoma, a rare cancer & aggressive for which the best treatment is to remove it, chemo may or may not be successful. Having been diagnosed with cancer on 3/7 , I haven’t started any treatment yet , I’ve put the details below but essentially I seemed to have lost weeks being referred from one hospital to another, I’ve waited so long my cancer is now is now inoperable and I have been referred now chemo first - I have an appointment 2/10 to see my colorectal consultant (92 days after diagnosis) , I am hoping he will give me a date start chemo and that date is very soon.
my questions to the forum are
is anyone else experiencing this sort of delay ?
has anyone gone private for chemotherapy? Is this something that is possible , is it quicker and ideas on cost ?
my concern is I’ve gone to the back of the queue again and my scans are showing I don’t have time to wait .
The details;-
i had an emergency appendectomy 12/6 this year , it had ruptured and i also had an abscess.
on the 3/7 the consultant called me back in and told me I had cancer of the appendix- mucinous adenocarcinoma a rare cancer. ( I’ve since found out it was grade 3 ). He told me I would be referred for a right helicolorectomy and HIPEC (hot chemo pumped into the abdomen) . He said he thought my op would be in August .
I had to wait until 22/7 for a staging scan as I had to heal from the appendectomy.
after chasing I had a 3 min phone to advise the cancer was limited to the abdomen but there were several areas that looked like the cancer had spread.
i know from my records the hospital said they received the referral on 13/8. They asked for another ct scan and mri.
I had an appointment with the surgeon 14/9 , they only had by July scan , I was told there were some concerning aspects of the cancer . But he couldn’t operate until NovemBer !
after crying myself stupid overnight , I sent an email explaining this would 173 days from diagnosis. I asked about cancellation lists , private etc . I was transferred to a different surgeon who could operate on 28/9 . We travelled back to Manchester on 18/9 to meet her. At this meeting she had just received the scans and re sports from 13/9.
she advised the cancer had spread and as well as the right half of large bowel being removed, I would also need some of the left and rectum out, meaning I would need a stoma ( the news I had been dreading) Also they would remove my ovaries and omentum out possibly a full historectomy. ( I’m in my late 50s so this wasn’t an issue ) . But she wanted my latest scans to be reviewed at the next MDT before confirming the full details.
I had a call on Thursday 24/9 to say operation was no longer an option due to the cancer spread and it’s locations ( pelvis) I have been referred back to my own hospital for chemotherapy.
i have an appointment on 2/10.
I was devastated , as you’ll all know it’s not the news they tell you, it having to tell your family and friends this news that is the worst !
Thank you
