My year on a clinical trial

In this post, Shine blog editor Caroline shares her experiences of participating in a clinical trial for advanced melanoma.


When I was diagnosed with mucosal melanoma in May 2017, the outlook seemed bleak. NICE guidelines for this rare form of skin cancer were still in development, so there was no agreed, defined treatment pathway for clinicians to follow. I had multiple operations to remove my primary tumour, but the pathology results after each procedure showed residual cancer cells. No other treatments were available. I was told that the cancer would ‘almost certainly’ spread, at which point it would become incurable.

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Blog editor Caroline

I’d never heard of this type of cancer, nor had many doctors. There are only 1.5 cases of mucosal melanoma per one million people, so nobody was talking about it. I considered becoming an advocate, perhaps educating primary healthcare providers about the symptoms that several GPs had failed to spot. Then I met a new GP who proclaimed that my condition was a ‘once in a career’ diagnosis. Advocacy started to look a lot less appealing. How many GPs would I have to reach in order to find just one who would later diagnose mucosal melanoma? I wasn’t about to give the rest of my life to this disease. Instead, I resolved that if – or when – the cancer returned, I’d play my part by participating in as much scientific research as I could.

In January 2019, events forced my hand. Melanoma spread to my lungs the previous autumn. My new diagnosis of stage IV cancer had made me eligible for cutting-edge immunotherapy – often heralded as ‘the future of cancer treatment’ – and I’d completed the course in December 2018. But the immunotherapy didn’t work. There were no more standard treatments in the newly-published guidelines (melanoma is notoriously resistant to chemotherapy), so we would have to start experimenting.

As a patient, applying for a clinical trial felt a bit like applying for a job – only with no control over how I worded my CV. My oncologist had presented me with a couple of different options to pursue, and I selected a phase 2 trial which used a drug to target a specific genetic mutation in my disease. My primary tumour had been genetically tested in 2017 so we knew that I had the relevant mutation, but I had to undergo several tests to make sure that I satisfied the other trial criteria. Regular brain MRIs can be scary enough, but they take on a whole new level of meaning when you know that finding just one small brain tumour (a reasonably high likelihood when you have advanced melanoma like I do) can end your chances of treatment.

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One husband, no cancer treatment

The trial application process took around one month to complete. Between hospital visits and drafting my end-of-life care instructions, I also managed to get married and go on my honeymoon to Athens. My life was full of extreme highs and extreme lows – with the question ‘what if I don’t get in?’ always buzzing away in the background.

I was cycling along the beach when my clinical trials nurse called to say that I’d been accepted onto the trial. A few days later I returned to hospital to see my oncologist and complete the trial paperwork. In three years of cancer, I’ve signed multiple pre-treatment forms that acknowledge ‘risk of death’, but reading and signing the trial documentation felt more monumental. Although I felt physically well, the likelihood of death loomed large. And this medication was experimental. Who knew what would happen?

All clinical trials are different, but they usually share one commonality: patients are observed. A lot. My trial medication is in tablet form so the regimen doesn’t seem too intrusive, but I follow a strict twice-daily dosing schedule and have to record the exact times that I take the medication on a special diary sheet. If I don’t take my tablets, I have to note why not. The two pre-defined options on the form are the somewhat critical ‘forgot?’ and the oddly cheery ‘vomited?’ – but I’m pleased to say that I’ve never had to tick the latter! I have very few side effects from my current medication, and as a result I’ve been able to live a relatively normal life. I even took my trial drugs with me on a once-in-a-lifetime holiday to Uzbekistan in the autumn!

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I never dreamed that I would make it to Uzbekistan

I see my oncologist and trials nurse in clinic once a month. Each visit involves a full physical exam, blood tests, a pregnancy test, and an ECG. After the tests I go to the hospital pharmacy to collect my medication for the next four weeks. I usually spend around three hours in hospital, but weirdly I quite enjoy it! The staff are lovely and as a ‘frequent flyer’ I’ve got to know some of them quite well.

The cancer is currently responding to treatment but it remains incurable. One day it will work its way around the trial medication. Nobody knows when that will be. As I write this, it has been almost three months since my last scans, and the tumours may well be growing again already. I’ll keep taking my drugs and undergoing regular observations until the treatment is no longer beneficial – but then I’ll be back to square one.

Life is never the same after a cancer diagnosis. After so many months of envisaging death on the horizon it feels strange to have a reprieve. While the trial may not change the course of treatment for mucosal melanoma on its own, the results will form part of the bigger picture of the disease and help to determine researchers’ and clinicians’ next steps. For me, it’s been a lifeline – and regardless of what happens, I’m immensely grateful for this extra year.

You can explore what clinical trials for cancer are recruiting in the United Kingdom using the Cancer Research UK trials portal. Alternatively, cancer.net is a good resource for looking at trials on an international level.

Melanoma: more than ‘just skin cancer’

In this blog post, we’re bringing you a cancer experience story written by Caroline, a member of our community who was diagnosed with a rare form of melanoma at the age of 29. She’s keen to raise awareness of skin cancer and share the impact that it has had on her life. As always, please share this blog post and let us know what you think!


I’ve been worried about developing skin cancer since I was 14 years old. I had been stocking up on my favourite fruit-scented toiletries from a certain well-known beauty retailer, and the shop assistant had slipped a leaflet on sun protection into my bag. I’m pale, red-haired, and freckled – and since reading that leaflet, my delicate skin has barely seen the sun. I cover my shoulders in summer, wear sunscreen in winter, and pride myself on staying as white as possible. So how did I get skin cancer?

Mucosal Melanoma

I was diagnosed with mucosal melanoma, a rare form of skin cancer, in May 2017. I was 29 years old. Mucosal melanoma develops on mucosal tissue such as that in the nose, mouth, and sinuses, or in the gastrointestinal tract. In women, it can develop in the vagina, and on the vulva. In men, it may be found in the penis. I’m not going to tell you where my small tumour appeared – but suffice to say, you’re unlikely to see any of my surgical scars!

I spotted a suspicious growth in December 2016, but it took several months – and several

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Guest blogger, Caroline

doctor’s visits – before I had a biopsy. It’s hard not to feel angry about weeks of missed diagnoses, but my disease is so rare that I can’t blame the doctors who dismissed my symptoms. However, I knew that something was wrong, and I’m glad I persevered with return visits until I finally had a diagnosis. I learned early on in my cancer journey that there is nothing more important than being your own advocate. Melanoma can spread quickly, and more than one medical professional has told me that if I had not kept returning to clinics, I might not be here now. It’s a sobering thought.

Initially, my treatment plan was the same as the treatment plan for cutaneous melanoma (the one with the moles): I had a surgical biopsy to determine the diagnosis, and then went back into surgery a few weeks later for a wide local excision and a sentinel node biopsy. The wide local excision involved taking a larger section of tissue from the area around the tumour to make sure that there were no more cancerous cells. For the sentinel node biopsy, two lymph nodes in my groin were removed and tested for melanoma cells. Thankfully, there was no melanoma in my lymph nodes – but if there had been, my diagnosis would have been changed from Stage II mucosal melanoma to Stage III, and I would have had advanced cancer.

Unfortunately, my wide local excision found some more melanoma cells in-situ (pre-cancerous cells, which have the potential to develop into cancer) – so a few weeks later, once I’d healed, I was wheeled back into surgery for a third operation. Then, once I’d healed from my third operation, I had a fourth. And then a fifth. Each surgery delivered the same result: a small area of amelanotic melanoma in-situ. ‘Amelanotic’ means that the melanoma isn’t pigmented. In fact, it’s invisible! In the space of eight months, I went from a healthy, active, young woman who had never even set foot in a hospital, to a cancer patient who had been through five surgeries in attempts to rid her body of a now-invisible aggressive cancer. I can scarcely believe it.

Wow, you look so well!

One of the most difficult aspects of my diagnosis has been looking well. Melanoma doesn’t respond well to chemotherapy, and it is not an option for me. When I first ‘came out’ about my cancer, I was asked a lot of questions about chemotherapy. When would I have it? When would I lose my hair? How could I have a serious illness, but look so healthy? And (the worst): did I actually have a serious illness? Despite all my rounds of surgery, and the trauma that comes with any cancer diagnosis, I began to feel as if my specific ‘flavour’ of cancer was being downplayed. If I mentioned melanoma, I felt as if I had to explain that I had always looked after my skin, and actually my diagnosis was not down to any irresponsible behaviour. As an aside: just wear your sunscreen! And no, I have no idea if that mole on your arm is dodgy…

Cancer messes with your head

Although I know deep down that my diagnosis is serious, it took me a long time to stop feeling like a cancer fraud. Not only do I look healthier than ‘the average cancer patient’ (fun fact: there’s no such thing!), but I can’t relate to many support group discussions about chemotherapy and radiotherapy side effects as I had never had that experience. Even if my cancer progresses, chemotherapy will be a last resort.

Through Shine, I’ve been able to meet others who have ‘just had surgery’ and can relate to some of the feelings I’ve described. It’s unlikely that I’ll ever meet someone who has the same diagnosis as me (if you have mucosal melanoma, please make yourself known!), but it is wonderful to be part of a community that acknowledges all the effects that a cancer diagnosis can have. I don’t have to explain or justify myself anymore!

I’ve only lived with cancer for a few months, yet the experience has already taught me a lot about myself. It matters less and less what other people think or believe about my illness. Instead, I focus on how I feel, and my own perceptions of my strengths and limitations. I’m finally giving myself the space to listen to my own needs – and that could be anything from needing to burn off some energy at the gym, to requiring a lazy day of nothing on the sofa.

It is so important to listen to yourself.