When were you diagnosed and what with?
I was diagnosed in November 2024 with Bile Duct Cancer (Intrahepatic Cholangiocarcinoma). The doctor said he would consider it stage 3 as there was quite a lot of disease but it was all contained to my liver. I was 33 when I was diagnosed, and I’m 34 now.
How did you find out you had cancer?
It’s difficult not to wish that you could go back in time and know which tests to ask the doctor for in order to discover your illness sooner. It’s hard to know when exactly my symptoms started because they weren’t very unique. I complained for many years to my GP about fatigue just to be told it was normal or maybe a slight iron deficiency. I also suffered from nausea and vomiting episodes that became more frequent leading up to my diagnosis but I always thought it was a gastro/stomach thing. Since I didn’t have any pain, no one thought to do any scans. Finally, I started to have some minor pain in my abdomen and noticed that it seemed a bit hard in areas (turns out that was my inflamed liver!). At that point, I finally got an ultrasound. ‘Numerous lesions’, they said. They still hadn’t used the “C” word, so it still hadn’t hit yet. A few days later, a CT scan and an email from the medical secretary that the gastroenterologist wanted to meet me the next day, in person. The doctor even said he was surprised because it is such a rare cancer, especially for a young woman.
What did you think and feel when you were diagnosed?
My husband and I were both in total shock to hear the diagnosis. Somehow, despite having felt unwell for months, we never imagined cancer. We are both expats and I always worried about the potential for our parents to get sick as they got older, but to be honest, it never even crossed my mind that it could happen to me. The doctor literally told me it was a “bad luck” cancer, there was no reason that I got it. It just felt so unfair. I felt sad and angry, thinking ‘why me’?
My most immediate reaction was to ask practical questions: ‘what’s the next step?’, ‘next appointment?’, ‘how soon can we get everything done and start some treatment?’. My husband, usually a very calm person, broke down in the car right after the appointment, and I think we took turns being upset over the next few weeks. We tried to go out for walks and distract ourselves but it was almost impossible. Those first weeks were such a whirlwind of information and getting treatment set up and going.
I will say, I did feel some slight relief in finally getting a diagnosis. To know that I hadn’t been making all of this up, there was a reason for all my symptoms, and in fact it was quite serious, too! My husband and I also had a lot of feelings towards all of these doctors we had been seeing. That gastroenterologist that I mentioned… well, after my first appointment he was already dismissing me, saying that I may never find out the reason for my nausea, after he did literally one test. He did explain that it’s normal to look and test for the more common conditions and explanations first, but I did feel like he didn’t take me seriously or put in much effort. My husband still harbours a lot of anger towards him. For me, I feel more sad and disappointed about the diagnosis experience, especially knowing sooooo many people, especially young people, have similar experiences.
How did the people around you react?
It was really tough to have to tell our parents, family, and friends, as many of them live abroad. This news had to be given my video call. My family was shocked, but again very practical, asking about the next steps. They didn’t really break down or show their emotions, at least to me. My husband’s family was more emotional, and seeing them break down and cry was really tough. I often felt throughout my diagnosis that I was almost happier to be the one ill, because seeing someone I love suffer sounded like an even worse fate. One thing that was difficult was our families immediate thoughts that we should move back to our respective homes to be close to them. While this was a completely understandable reaction, they didn’t understand how complicated that would be and that really we had enough to deal with, without thinking about an international move.
What treatment did you have?
The initial treatment for my cancer was pretty standard and included a combination of chemotherapy and immunotherapy (Gemcitabine / Cisplatin / Durvalumab), 2 weeks on, 1 week off, delivered by IV at a local cancer centre for 6 months. My cancer responded to this treatment and stopped growing and showed minor shrinkage. Following those 6 months, I switched over to monthly immunotherapy only (Durvalumab). Unfortunately, that treatment alone was not successful and showed some minor growth. I have recently moved to molecular targeted therapy (Encorafenib and Binimetinib) based on a mutation (BRAF 600E) that I have. These are taken as daily pills. Unfortunately, the only cure for this cancer is surgery currently, but due to the number of tumours in my liver, I was not and likely will never be a candidate for this.
How are you feeling through treatment?
There have been a lot of ups and downs, both physically and mentally, throughout treatment. Chemotherapy is pretty well known for being toxic on your whole body, and I continued to have a lot of nausea both from my disease and as a side effect of chemo. Nurses and I were continually trying to manage my nausea and try different medications. The other big thing for me was fatigue.Towards the end of my chemo cycles it had built up, and I found myself sleeping about 11 hours and taking 2-3 hr naps daily. To be honest, this hit me a lot more mentally than physically. I wanted to still be able to do small things each day around the house or go out for a simple errand or coffee but I found myself on the sofa all day. I ended up talking to my oncologist and we lowered my dose – this made a massive difference for me and really was vital to keep me feeling well and motivated.
What’s facing you next in terms of treatment?
Unfortunately, I have an incurable cancer, so the treatment plan is really just maintenance of the disease and symptoms and to keep it from spreading. I have scans every 3 months and every time it starts getting close, the scanxiety is real. It’s hard knowing in between whether things are working, and there’s really no guarantee just trial and error so it can be really tough.
But for now, my plan is to start Molecular targeted treatment and see how my cancer responds. It is tough because the drugs that I am using are not specifically approved for bile duct cancer but instead other cancers, such as Melanoma, that share the BRAF mutation. In theory, the drugs will stop the mutation mechanism and work for any cancer but studies are still being done on this.
How did you get involved with Shine?
I found out about Shine through another cancer charity in my area. I was so happy and interested to see that there was a charity specifically for young people! At the cancer clinic and other charity, I would most often see older adults 50 or 60+ and while I could relate to them on some levels, we were also at very different points in our lives and facing different decisions etc. Shine had resources and through the Circles programme we discussed topics like uncertainty, work, kids and fertility, relationships, and what a massive impact your diagnosis can have on your life plans and goals. 
What difference has Shine made to you?
I did the Circles programme with Shine and it was an incredible experience for me to connect with others and process different elements of what we were going through. It was so validating to have others agree and understand what you’re feeling. You don’t feel like you have to explain yourself or hide/mask your feelings. I can’t recommend it enough. In fact, you can read more about my experience on the Circles page.
I’ve also listened to the Shine podcast a lot, as again the topics are right on point and the host is so great. The Facebook groups are also a great space to share experiences and ask questions.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
One of the toughest things to digest is that my cancer is “incurable” and really going to be a life-long thing. To be honest, this really hit me after I finished my first treatment plan of chemo. Everyone around me was celebrating, saying ‘wow, look at you, you did it, it’s over’. In part, this was because so many of their experiences and what they knew about cancer were based on curable types of cancer, where someone went through a really tough treatment time but then was cured and moved on with life. They were constantly comparing me to other people that they knew. This was extremely hard for me to deal with, and I knew it wasn’t their fault having this mindset and I didn’t want to be a Debbie downer or whatever, but I knew this ordeal was far from over, and to be honest, I didn’t really feel like celebrating.
It’s hard to figure out what your new “normal” is: living and planning in 3-month blocks between scans, deciding about if/when/how to return to work, etc. Sometimes on holidays or days out I manage to forget about cancer for a moment, but then something happens and it all comes crashing down again. I often feel like everyone is continuing with their normal life around me and I’m just trying to get through the next day, week, or month. I grieve that normal life I had before and everything that I took for granted. I have a sort of FOMO of seeing others on social media travelling, buying houses, having kids, moving forward with their careers, etc.
If you could give one piece of advice to yourself before your diagnosis, what would it be?
Unfortunately, it can be very common for doctors to brush you off, especially with mild symptoms but don’t be afraid to advocate for yourself, be persistent, ask for more tests, etc. Take your health as a serious priority. I like to do some research before appointments, not to try to self-diagnose but to come up with some educated questions to ask the doctors about and to understand their reasonings for certain tests or diagnoses.
And post diagnosis, know that there may be hard times ahead but try your best to find even small glimmers or things you can enjoy and smile about. In the end, you often end up spending even more time with loved ones, family and friends, and making memories. And I think I’ve learned to live more in the moment and be present.
Don’t be afraid to reach out to others and take advantage of all of the amazing charities and resources available to you. I’ve accessed some complementary therapies such as reflexology and acupuncture which have been so relaxing and helpful with side effects. Also, there are some great exercise programs specifically for cancer patients to keep you motivated and moving, but at an appropriate level.
I’ve also found a lot of support and sharing of experiences on my cancer charity’s Facebook groups.
