CC Day 3 – Guest Post by Ben Francis
Cholangiocarcinoma (CC), I wonder how many people know what that word means before it is thrust into their life. In November 2014, I knew the meaning far too late when my brother, Nick Francis, was diagnosed. I like to think, as someone who works in medical research, that I would have been somewhat aware of the different areas of the body where cancer could occur.
This brings us to awareness. With a cancer so rare in the UK how do you begin talking to someone else about it? Whilst there are some predisposing factors to CC, we are yet to understand fully how this aggressive disease takes grip. With low understanding, we need research, yet research isn’t about just clinicians, academics and industry getting together, a large part of understanding is found from patients and those who support patients. Knowing more about the passage of time before diagnosis may unlock more understanding to cause earlier detection for those unfortunate enough in the future to be afflicted by CC.
To give an example, Nick had a condition called primary sclerosing cholangitis (PSC), which in hindsight would likely have masked several warning signs of early stage cancer. For those with this condition, an estimate of between 7-13% will develop CC, however, it is often later stage and inoperable, as in Nick’s case. From this tragic sequence of events we are reminded that there needs to be focus on improving screening of PSC patients for CC.
Nick’s death will always leave a hole for family and friends that cannot be filled, however, future holes in other families and friendship groups have the potential to be avoided with that one powerful word, awareness. This year I will be running an event each month in memory of Nick, for further details, please see www.justgiving.com/fundraising/NickFrancisAMMF, any donations or shares of the page would be greatly appreciated!