#61 The monster

Bile duct cancer is a rare illness affecting 1–2 people per 100,000 per year in the Western World. It is rare when less than 15 people in 100,000 per year are diagnosed. This cancer is silent as it typically is already at stage IV when diagnosed. Most cases cannot be operated which leaves patients with treatments such as chemotherapy or immunotherapy. We read that the median of survival after a diagnosis is only 5–6 months: this means that half the patients would not live longer than half a year. On top of that, statistics told us that less than 10% of patients make it past five years.

After Janne got the call in that amusement park, she went to the hospital with little information. She just knew it was liver cancer. However, she ran into the most empathetic and smart oncologist she could have met. The doctor told her that she wanted to find out about the exact cancer type to target the treatment. New tests pointed out that it was bile duct cancer or cholangiocarcinoma.

The issue with bile duct cancer is that very little is known as there are not enough people for studies. There are no clear risk factors nor proven treatments for it. Janne at first started blaming herself, but I helped her see the evidence that nothing she did could have caused it. She was convinced after reading about it. I also made sure to get out of her head any hint she’d get from any material or conversation that was not helpful (like the idea that she had cancer because she was “not a good person”).

Her oncologist managed to get her into a breakthrough immunotherapy that was targeted on this cancer. There were hints that more than 42% of patients treated with this would survive past five years. There was some paperwork to be done, but her doctor did everything Janne needed.

The cards were on the table. We knew the numbers, the chances, and the opportunities. Her medical care was undoubtedly the best she could get. We made sure to be as open as possible with our kids, friends, family and everyone around us. The clock was ticking loudly so we made sure to take advantage of every second.

And not for one moment we stopped loving each other.