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Living with melanoma after surgery

Published on 25/02/19 at 12:09pm

Dr Elizabeth Walmsley was left lost when she received her melanoma diagnosis. Thankfully, through perseverance and the advice of friends she was able to receive treatment via a clinical trial. She shares the lessons she learnt along the way.

How did you reach your original diagnosis?

I had a mole on my shin, which I didn’t think anything of and it seemed fine; it was just by chance that a nurse said to me to get it checked out – she didn’t seem overly concerned. I went to my GP, then to the hospital to have it checked, and they decided they wanted to remove it and do a biopsy on it. At that point, it was quite a shock for me to be told that it was a malignant melanoma.

They did further surgery to remove the tissue around the mole, and then basically told me to check my lymph nodes every week; off you go. I thought that was it, but within five months – again, by chance – I found a lump in my groin. I went back to my GP and they sent me back to the hospital, where I had an ultrasound biopsy, CT scan, PET scan, MRI scan…and they confirmed that it was melanoma that had metastasized into the lymph nodes in my groin. So they decided on surgery.

Were you satisfied with that course of action?

I’m a scientist by background, so I decided to speak to some researchers, radiologists in Holland, and a colleague who runs a drug trial company, and they all said to go to a specialist centre, and if you can, get on a drug trial, because there’s a lot happening in the field. My GP friend also said that in the last five years there has been a lot of change, so do it.

I spoke to my local surgeon who was going to do the surgery to remove the lymph nodes and I asked where I could go that would have the best expertise, and that was when I was referred to the Royal Marsden Hospital in London.

I think when you go to one of these centres of excellence you just get a feeling of experience and care as you enter the premises. They said they would perform the surgery, though it was a different form than what was proposed at my local hospital, and then I would be handed over to the oncology team who would find the most appropriate drug trial for me. I had the surgery in the summer of 2016, which went reasonably well, and around 10 weeks later I went to talk to the oncologist and the research team who discussed the option of a trial, and also the option of not having a trial. In that case there would be no treatment, and so that seemed to me to be an obvious thing to say yes to.

They told me quite a lot about the trial and the drug, which was pembrolizumab (MSD’s Keytruda). I started the drug trial in July or August of 2016. It was 12 weeks of treatment, so every three weeks I would have an infusion, and on the day before you have blood tests and a scan just to check that you’re OK.

How confident were you in the treatment? Even though it was an obvious choice for you, did you have doubts?

Yes, I suppose you do. Particularly before that first session when you have your first infusion, and you’re sitting there with everybody else having their chemotherapies, and of course you’ve read about all the side-effects. “Scary” is the right word, but you’ve got a good team around at that point. All cancer treatment is a bit scary, isn’t it?

And how are things going today?

One of the benefits of being on the trial is that you’re in the hands of the team, and they do follow you up quite closely. I’ve had scans and blood tests every three months and – touch wood – there’s been no evidence of cancer or disease, and I’ve made quite an effort throughout the year to get my energy back up, so that’s good.

How do you think your background in science might have shaped your experience or approach to your diagnosis?

Maybe people might, when they see “Dr Elizabeth Walmsley”, listen to your questions a little bit better. My research was in biophysics, so I wouldn’t say quite related, but I think what I had from my science was not being afraid to ask a question and to say “I don’t understand”. I think that gives you a confident curiosity, which I think is useful.  You’re generally in a system where people are busy, so if you don’t ask the right questions you may not get the information which can be very helpful. 

What do you think the experience has taught you?

I felt very alone when I was told that I had malignant melanoma because you can be somebody who’s never been ill in their life, never had surgery, and suddenly you’ve got this, and that can be pretty scary. You can talk to your GP, but often you only get a short amount of time and they don’t always give you very much information or don’t have very much information. You’ve kind of got to ask – that’s what I learnt; you’ve got to ask and you’ve got to look at things yourself. It doesn’t just happen naturally. I felt part of a system, and I didn’t understand how to work the system in any way, so I think I learned much more to get as much information as I could, but also to get it from some firm sources.

There’s quite a lot on the internet, but I think sometimes you don’t always have a lot of judgement on which are the best sites. There’s good NHS melanoma information sites – reputable sites – but if you don’t know where you’re looking you might fall into the drug company sites, which also give good information but it might be harder to read. If you Google stuff you can find quite a bit, but I think it’s always best to talk to somebody.

I still think I’m learning how to navigate the system, and I’m still finding new sources of information. Most information is there for the medics, it’s not there for a common patient. I do get [The Lancet] headlines; I can’t really read all those articles because I don’t really understand them, but when I do read something in the title that’s about melanoma or pembrolizumab I’ll read it. It would be helpful if there were more support groups or more information groups about drug trials. I hadn’t really thought about drug trials at all until this happened, so I didn’t know anything about them.

Another thing I found difficult is when you’re with one hospital who want to move you through quite quickly, and you want to say: “hang on, can I talk to somebody else?” You worry what they’re going to think about you. But actually if you ask in the right way then they should be more than happy to do that, but I doubt that many people do.

What message would you like to pass on to others in a similar situation?

I would tell them to ask as much as they can about the stage of their cancer, because I didn’t know anything about cancer staging initially, and to ask what options are there for you. If the people that you’re talking to don’t really give you any options then I think you’ve got to find somebody else who will.

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