I have cholangiocarcinoma, a rare but aggressive cancer
– some background to raise awareness

I am living with advanced cancer for some time now – in February 2023 I was diagnosed with intrahepatic cholangiocarcinoma, a rare and aggressive form of cancer of the bile ducts with an extremely poor prognosis. Given that the cancer had already metastasised, removing it surgically was no longer an option. Since then, I have been receiving the first-line systemic therapy – a combination of a new immunotherapy and older chemotherapies – that, fortunately, is still controlling the cancer fairly effectively. (My oncologist says I am on the thin tail on the right end of the survival distribution curve.)

While I have been open about my cancer at work and in my private life, I was unsure about how to deal with it online – or rather whether this is even something that should or needs to be shared. On the one hand, it has very little to do with the topics I post about and doesn't add to or subtract from those messages. On the other hand, it might help explain the irregular pattern of my posts, with recurrent longer breaks when I am in hospital or when I am simply not very well, and it explains why, for instance, my LinkedIn profile lists me as "on leave" since April this year, as I am unable to work. (I get chemotherapies two out of every three weeks, which themselves take the better part of a day and can have quite heavy side effects, like nausea and fatigue, for 2-3 days. Then there are also other regular interventions that require hospitalisations, like changes of the stent I have in one of my bile ducts, or I have infections that send me to the emergency room.)

What now prompted my decision to share my illness is that other, much more public figures (like David Cameron these days, who was diagnosed with prostate cancer) share their experience to raise awareness, encourage early screening, and persuade people to seek timely medical advice even for something that seems innocuous. In my particular case "my" cancer, cholangiocarcinoma, is also very rare and little known. Raising awareness about it could, in the long run, help cholangiocarcinoma receive more attention from doctors, researchers, the pharmaceutical industry, policymakers, and investors – especially in Europe. (In the US, the Cholangiocarcinoma Foundation does excellent work and is a useful resource for patients worldwide; but also in Spain, there is now an Asociacion de Tumores de Vias Biliares.)

More concretely, my tumour was discovered serendipitously when I sought medical advice for an entirely unrelated issue and a blood marker (Gamma-GT) returned with far too high values. This triggered an ultrasound of my abdomen and there a suspicious mass was detected, which was then confirmed by subsequent CT and MRI scans. (And then the roller-coaster ride started, with bad news followed by more hopeful news followed again by bad news, with constant ups and downs, and with a lot of uncertainty at all times that makes it impossible to make plans – one blood value is out of line and the entire therapy schedule is put on its head, one small infection and I am in hospital for days.)

So my personal advice would be to get regular ultrasounds of the abdomen (every two years or so), even if there is no strong family history of cancer. (Given my own family history, I always assumed I would die from cardiac problems in old age.) Knowing what I know now, I would have gotten regular ultrasounds, not only because they can detect cholangiocarcinoma but also because they can detect other serious gastrointestinal cancers. Increased screening may lead to more false positives, but I believe it is preferable to worry briefly about a false alarm than to discover a malignant tumour too late.

If a screening turns out positive, I would advise seeking second or third opinions, from specialists, on key treatment decisions, such as surgery or therapy choice. Doctors' knowledge, approaches, and communication styles vary, so finding experts who align with one's needs, values and risk profile can be important, for instance when considering experimental but potentially promising treatments.

While one may be able to choose one's doctors, one has much less influence on one's personal support system. I am lucky enough to have found a very good, dedicated and kind oncologist who is specialised in gastrointestinal cancers, and I am also very lucky to have the caring support of family and friends. So altogether I am coping very well and I try to look at the positive side of things, making the best of the time I have.

As I wrote above, I was not quite sure how to deal with my cancer online. I hope that, in its own small way, this post does the trick of raising awareness about cholangiocarcinoma without distracting from the focus of my other online posts. I also think the post fills a gap in my online persona – it felt wrong not to mention what is now such a significant part of my life when sharing other details in my online profiles. I do not yet know how I will deal with this in the future. I am not planning to engage in regular advocacy, but if I discuss cholangiocarcinoma or cancer more broadly, this post may provide some context. Otherwise, following the literature on food and agriculture and sharing some of it on social media, as I have done so far, is simply interesting and provides some mental stimulus when I am fit enough to do so.

27 November 2025
Alexander Stein