Hi everyone,
Apologies for the long post!
Last week i was told the devastating and shocking news that i had stage 3 bile duct cancer. I'll just explain how i got to this point. At the beginning of lockdown, i noticed a small lump/swelling under my right rib cage. This was not painful and at the time, did not give me any gip(jip?) At the same time i had terrible and constant back pain that at times went down my legs. I had contacted my gp and had several telephone appointments because of the covid situation. Then by July, the lump had become a lot bigger and was starting to cause me anough pain that at times i was doubled over. The gp then asked me to come in and have some blood tests that showed elevated liver function results and low vitamin D levels. A couple of weeks later and i was struggling managing the pain with paracetamol and ibuprofen so gp called me in, examined me and said the lump was concerning so referred me to hospital for a scan.
Before the appointment came (also a telephone consultation) my partner insisted i went to a&e which i did and they arranged an ultrasound scan which showed a shadow on my liver. I was immediately sent for a CT scan which confirmed this but offered no other information. Had an MRI scan and it was a few days after this that myself and my partner were given the devasting diagnosis.
My care was passed on to another hospital who specialise in cancer and i was told that there would be a DMT meeting and i would then meet with a specailist to discuss treatment.
Because the tumour is so large (10.5cm x 7.6cm) surgery is not an option and so i would have chemo in a hope to shrink the tumour and then we were hopeful i may then be in a position to be operated on.
However, yesterday when i met with a liver specialist, he told me that he did not know what it was and needed a biopsy to determine what in fact he is dealing with.
I am now left with a million questions and actually can't belive i was given this diagnosis. We had to tell our children the news which obviously has left them extremely upset as well as us, family and friends.
Where we currently stand is that it may well confirm the original diagnosis or could possibly be something else.
It's hard to narrow it down as i don't have any jaundice or similar symptoms. My CA 19-9 level was 1297 which i was origionally told confirmed it was a malignant tumour but then contradicted by the liver specailist yesterday that it wasn't concerning. I have been prescribed some Butec patches (i've not used these yet) and cocodamol (these have really helped) for the pain which has been quite bad.
I have had so much conflicting information and unsure if any DMT meeting even occured as the specialist just told us the HE couldn't tell what it was.
Has this or something similar happened to anyone else? I just don't know what to think. When i questioned why i was given this diagnosis if not confirmed, the specialist said "well, if the biopsy confirms it is cancer, at least you have already been told"
