Emily Webster, 32, was diagnosed with a rare cancer of the appendix in 2021. Fortunately, it was caught early and following successful surgery, she now has no evidence of disease. In April, she will be running the London Marathon in memory of her father-in-law, Bryan, a keen runner who died of cancer in 2023.
I was 27 years old when, just days after I graduated from my PhD program, a routine medical scan uncovered a large tumour in my appendix - a rare kind of malignancy that was later confirmed to be a Low Grade Appendiceal Mucinous Neoplasm (LAMN).
I had suffered with stomach issues and intermittent, mild lower abdomen pain since I was in my early 20s, but this had largely been written off as IBS and pelvic floor dysfunction. I had already had several ultrasound scans for various gynaecological reasons, but on this particular occasion, there happened to be a trainee in the room, so the technician spent a long time scanning me and pointing everything out to her student. The radiologist who read the scan later picked up that my appendix was extremely enlarged, and I was advised to come back for another scan.
When I went back for the scan, there were two doctors in the room – my gynaecologist, who ordered the scan, and the radiologist who read it. Looking back, I think I should have known then that there was something wrong. Initially, they thought that what they were seeing was the early stage of appendicitis, but a follow-up CT scan revealed something more serious. I was in complete shock when I got the call to say that in fact, I had cancer.
The news was especially disconcerting because my partner and I were set to leave that week to start new jobs in different countries. But we had to put our lives on hold for several months as we suddenly faced a series of potentially terrifying futures. For weeks I was poked and prodded, with each bit of news seemingly worse than the last, and we grappled with the possibility that it was worse than it looked, that I could lose my fertility, large chunks of my internal organs, or in the worst case scenario (depending on what the tumour actually was), my life.
“My relationship to my body and medicine changed forever that day”
We were incredibly, incredibly lucky. Six weeks later, I had surgery to remove my appendix and part of my colon. It revealed that the tumour was still at an early enough stage that it almost certainly hadn’t spread outside the appendix – a fact that was happily confirmed six months later when my follow-up appointments showed that I was cancer-free. My tumour markers were down, and I could go forward with my life knowing it almost certainly will never come back.
Despite my doctors being very optimistic, I am well aware that cancer and the human body can be unpredictable. I also know that my cancer was a rare type. Because of this, I am part of a very small representative group of people and there is so much about it we still don’t know.
Of course, I was very lucky that my disease was caught early, my treatment was minimal and I have been told I am effectively cured. But five years down the line, I still live with a level of trauma and uncertainty, and will be under medical surveillance for several years to come. On one hand, this makes me feel very lucky – I am grateful to have that medical care, and the constant monitoring brings with it reassurance. But the regular colonoscopies, blood tests and scans also create stress and anxiety – especially as they often turn up oddities that require more testing, and bring back the stress of the initial uncertainty and diagnosis.
“Bryan was one of my favourite people in the world”
.jpg?sfvrsn=fcba7b0a_1 "Bryan running one of his best races (Credit: Emily Webster)")
My narrow escape was not our family's only brush with cancer. In October 2023, we experienced yet another gut-punch from a rare cancer: my beloved father-in-law, Bryan Suits, lost his own battle with an incredibly rare melanoma.
He had been diagnosed around eight years earlier and his story was the very opposite of mine. His cancer was discovered in his neck, but deep under his skin near his lymph nodes. He went through surgeries, radiotherapy and chemotherapy, but never really experienced a solid period of remission. There would be the odd year where scans showed no detectable cancer, but it would always come back. His cancer was so rare that it became a published case study in medicine – something he’d joke about sometimes.
Bryan was one of my favourite people in the world; a kind, brilliant, caring and deeply funny man. He was a physicist, dad, musician and an avid runner. His cancer was incredibly cruel and eventually robbed him of two of the things he loved most in life: playing the flute and running. Surgery to remove the cancer from his face left him with paralysis so that he was unable to play his flute. Then surgeons had to take muscle from his thigh to replace the flesh removed from his neck – and this impacted his running.
His goal through his cancer treatment was to run the Boston Marathon – and he achieved this in 2017, two years after his diagnosis. He continued to run even as cancer (and treatment) made it harder and harder. He was one of the people who understood most what I was going through when I got diagnosed – sitting together in the days after, knowing I didn’t have to pretend to be okay around him, was so meaningful. He was also one of the biggest supporters of my running. He was usually the first person to donate to my race fundraisers, he'd check in on race mornings with a “good luck” and a fun fact about wherever I was racing. One of the very last conversations we had face-to-face, when he was in the hospital, started with him asking, "So, are you getting ready for another race?" Not a day goes by that I don't miss talking to him - and especially talking to him about running.
After he passed away, my mother-in-law gifted me some of Bryan’s running gear, including his Boston Marathon jacket. I will have that with me when I run the London Marathon on 26 April in his memory.
This will be my first ever marathon. I have always been an avid runner and have completed half-marathons in the past. But I always said I could never imagine doing a full one myself. However, I recently began to feel a sense of stagnation with my running, I was no longer feeling challenged by it. I heard that the London Marathon was a real joy and a very special experience – and knowing how much Bryan had enjoyed his Boston run, I decided to give it a go.
“Research is our only hope to manage cancer like a chronic illness”
As an academic, I am a big fan of research. I donated my own appendix to scientific research when it was removed. As an Assistant Professor in the History and Philosophy of Medicine and Health, I teach frequently about the history of cancer research in the 20th century, and how far we’ve come in our diagnosis, treatment, and understanding of the disease. I also make a point to tell students that diagnoses are happening in younger and younger populations. I share with my students my first-hand experience of the disease to personalise the stakes. And given how rates of disease are changing, and how common cancer diagnosis can be, I believe cancer research is probably one of the most important causes for which to fundraise.
Scientists have made huge strides in identifying how cancers work, how they form and how treatments can be managed. It is exciting to hear about new developments and even possible vaccines to fight cancer in future. We have to accept that we live in a polluted world in which we face lots of exposure to things that harm us over time. One in two of us will face cancer in our lifetime and most people will be touched by the disease in some way, either through a personal diagnosis or seeing a loved one go through it. Cancer research is the only way that we can hope to manage the disease like a chronic illness, rather than it being a death sentence.
Despite my experiences with cancer, I don’t really label myself as a ‘cancer survivor’. While I still live with the trauma, uncertainty and medical surveillance, I never had to have chemotherapy or radiotherapy. But I know there are lots of people like me who might have had a relatively easy time with their cancer treatment, who still feel traumatised by their experience, who understand the way in which a doctor’s call can completely derail your whole day – and I hope my story will resonate with them. Those experiences are still significant and impactful, and everyone deals with them differently. I am a real advocate for being persistent and getting symptoms checked if they don’t feel right – early detection can make all the difference.
While our family continues to process our own experiences with cancer, I can’t help but think of all the other people who are going through this horrendous trauma themselves. The people with LAMN like me who were only diagnosed when it had already spread through the abdominal cavity; people with more aggressive appendix cancers; and people with other extremely rare cancers that grapple with both the terror of the diagnosis and the lack of understanding in the medical community as to how or why these particular cancers happen.
It seems nuts to me that I’ll be running the kind of distance that I will be doing for the London Marathon – but I am looking forward to it. I will be running for them, for me, and most of all, for Bryan.
To support Emily and help raise funds for our vital research, please visit Emily's fundraising page.