Hi there! I'm new to the forum although my cancer scare actually began late last year with the discovery of a lesion in my liver after an MRCP. I'm 28 years old and have been suffering with auto-immune issues my entire life, starting with rheumatoid arthritis at 4, crohn's (Or UC, never really specified well) at 11 and primary schlerosing cholangitis at 17.

Late last year I was getting a little sick of the amount of liver infections I was having per year and asked my wonderful hepatologist if it was worth a full checkup via mrcp. The lesion was found and I found out through an appointment made for me to see the surgical team. They explained that there was a large polyp in my gallbladder and a lesion in the right side of my liver. Okay, so it wasn't confirmed cancer at this point, but me and my partner were pretty much sure it was as it was the natural progression of the PSC to progress into cholangiocarcinoma, especially after such a long time.

Unfortunately (And fortunately) we were expecting our first baby at the end of february/early march, so we already knew tough times were ahead.

A biopsy was attempted in November but they missed the lesion. It was only 3cm so this is understandable, but I ended up with a large setback as the biopsy caused an abscess to form in my liver, putting me in hospital for 2 weeks in december with the an array of wonderful drains and antibiotics. The next biopsy was performed when I felt better in January, and early february was the official diagnosis. The Professor put me straight in for a PET scan to check for spread, but the only thing that lit up was the small lesion in my liver. After seeing the Professor after the PET scan, we moved quickly to embolisation and surgery was planned and performed on the 9th of April.

My baby boy was born on the 2nd of March. I was about 2-3 weeks post embolisation and felt almost back to normal, so I got to be there for the birth and spend a lot of time with him. The surgeons were exemplary at working around this special time and gave me any time I needed.

The surgery was a big success, however I was stricken with a bile leak and ended up staying in for 3 weeks. My partner brought my son in to see me occasionally but the distance from leeds was a little much to do it often. I actually felt ready for home after a week, but that was when the bile leak had just started and the pain came quickly. After the 3 weeks they sent me home with the drain in place and the district nurses came occasionally to change the bag and clean the area around it.

A couple of months later, I saw the Dr again and was told the cancer cells were closer to the margin than they originally anticipated, and he sounded concerned that they may not have gotten all of it, where they were very hopeful before. By this point I think I'd already started capecitabine as I opted to go for whatever preventative measures are available.

I'm currently on my 6th cycle of capecitabine after a setback with a crohn's flare meant I had to come off it for a good month or two. We started with 2300mg twice a day and now I'm on 1500mg twice a day - Manageable but still getting incredible bowel pain and itchy feet and hands. I have not been given a time frame for my life, possibly because there is no certainty the cancer still exists in my body, but the last CT scan showed no change from the pre-chemo CT scan which is a good sign. Capecitabine is proving very hard on my system, but I'm having to brute through it with having a baby and I'm so glad he was born this year as he gives me so much joy in such a dark time in my life.

So for the sake of compression, my diagnosis is:-

Cholangiocarcinoma, surgically resected
Currently taking Capecitabine 1500mg twice a day
And hoping this is the last I bloody hear of it post-chemo, but aware that the recurrence rate is high.