Hello and a thank you!

I’m embarrassed to say I’ve been a lurker here for almost 4 years, on and off.  Thank you so much to everyone who takes the time to share their experiences and advice. I always felt like I was on the last car of a runaway train and had little to offer, so I hope to be able to contribute more now that we have a better understanding of cholangiocarcinoma.

I hate typing that word, I really do.

Anyway, my darling husband was diagnosed with EHCC in January of 2016. He was just shy of his 53nd birthday at the time of diagnosis and was considered fit and healthy enough for a Whipple. His surgery was postponed for 8 weeks as he recovered from acute pancreatitis (ercp induced) and we shopped for a surgeon. We traveled to various centers in the States before choosing a surgeon in London, where we were living at the time. Surgery went well (hard to use that word to describe such a brutal procedure), a few days in ICU, some weeks in the hospital managing complications from the surgery and previous pancreatitis. He had clear margins and one infiltrated lymph node. T3PaN1. Follow-0n treatment included radiotherapy (chemoradiation) and 6 rounds of gem-cis.  He went back to work post-surgery and kept working through treatment with the occasional day off.  Although we had heated discussions about him working through it, I realized that work kept his mind from wandering into dark corners and made him feel purposeful and happy. My job was to help him gain back the 40 lbs he lost from pancreatitis and the Whipple. I gained a fair few pounds along with him, I’m afraid.

He had scans every three months for longer than usual because we were nervous about “graduating” to every six-month scans, but eventually, they kicked us out of the quarterly scan group. We traveled, we visited our children who live all over, we welcomed grandchildren into our lives. There were a few bumps in the road, healthwise for him, but all manageable with tweaks in medication.

We had 4 years of clear scans (lung nodule found in January 2020). So, here we are again, not lurking. He had an immediate lung wedge resection completely removing the single nodule. Nothing else showed on the PET scan. We traveled again for consultations to Sloan, London Bridge Hospital and our local hospital for oncology consultation who all concurred that we should not pursue any treatment at this time. We aren’t happy with that proposal and are currently working and researching to find alternatives to doing…nothing. He is currently in excellent health, hiking, running and eating well. As he says “I am the healthiest-looking sick person you know.”

So, hello everyone. We’re gearing up to battle the beast. Armor on and all that.

Thanks again,

Megan