Bea’s story

In 2020, whilst pregnant with twins, Bea noticed a mark appeared on the inner side of her right foot. She presumed this was a verruca so asked a pharmacist how she could safely treat this during pregnancy. She was advised that it wasn’t a verruca but if it didn’t hurt not to worry about it, and that it would probably go away on its own. As such she put it to the back of her mind. Around a year later, Bea noticed that the mole had doubled in size, and it began bleeding. She decided to book a GP appointment, the GP didn’t think there was anything sinister about the mole, but as a precaution Bea was referred under the urgent referral pathway (2 week wait) to dermatology as her skin is very fair. She underwent 3 surgical procedures. The first was a shave, the second surgery, after the biopsy results had come back as ‘malignant melanoma,’ was to fully excise the melanoma and the third was a wide local excision with a sentinel node biopsy.  Following the third surgery Bea was diagnosed with stage 3B acral lentiginous melanoma which was BRAF positive. She was placed on dabrafenib & trametinib targeted therapy for 12 months as adjuvant treatment. Here she kindly gives an honest account of her diagnosis story:

Acral Lentiginous Melanoma Information

“Take charge of your own disease. Read up on websites you know you can trust, such as Melanoma Focus, also ask if you can speak to other patients in your position to swap tips.”

In 2020 a mole appeared on the inside of my right foot when I was pregnant with my twin sons. It was a dark spot that was obviously bigger and darker than a freckle. I assumed it was a verruca but, having never had one before, I went to the pharmacy to get that confirmed and ask how to safely treat it during pregnancy. The pharmacist said that she didn’t think it was a verruca but if it didn’t hurt not to worry about it. She thought it would probably go away on its own. Having had this conversation, I put it to the back of my mind.

When my sons were about a year old, I started running again. By now the mole had doubled in size and it was bleeding every so often. It was irritating me every time I went for a run, and I’d come home, and it would have bled through my socks. It also looked different from day to day.

My husband had asked me to go to the GP, but I was sure there was nothing sinister about it. If anything, I was embarrassed by the sight of it. The penny dropped when I went for a pedicure one day and I said to the girl who was doing my nails that I was sure the mark on my foot wasn’t a verruca – I didn’t want to be refused the pedicure. She looked at me and said, “that’s not a verruca” and something about the way she said lodged in my mind. I booked a GP appointment straight away.

The GP didn’t think there was anything sinister about the mole, but as a precaution they referred me under the urgent referral pathway (2 week wait) to dermatology as my skin is very fair. Even the dermatologist didn’t think it was anything to worry about and so booked me in for a biopsy – a shave, not a full excision, as melanoma was not expected. It was a total shock to everyone – myself and all the medical professionals I’d seen – when the diagnosis came back as malignant acral lentiginous melanoma in June 2022. It took 6 months for me to get my full stage diagnosis – 3B and BRAF positive – as I ended up having 3 surgeries over this time. My type of melanoma – acral lentiginous – is often misdiagnosed and even the GP and dermatology consultants I’d seen didn’t expect my biopsy results to come back as malignant melanoma.

“Despite reassurance from my medical team, at times I couldn’t help but jump to the worst conclusion and I worried about my boys growing up without a mother.”

I am so grateful to my GP, who referred me as a precaution because of my skin type; while I’ve never been a ‘sun worshipper’ and always used SPF, I have burned in patches throughout my life, for example if I’ve not reapplied sun cream early enough or just if I’ve missed a bit of skin.

I have found the whole experience difficult physically and emotionally. I had 15-month-old twins when I was diagnosed and wanted to try for another baby – cancer was a real shock and threw our whole lives off course. Despite reassurance from my medical team, at times I couldn’t help but jump to the worst conclusion and I worried about my boys growing up without a mother.

I had a skin graft on my foot (the graft site was my right thigh) which mostly failed. Your foot is a really difficult place for healing and the results of the graft were expected. The wound was open for months and, nearly 2 years on from my final surgery it takes a lot of management. I am back to running now though, very slowly, not very far and twice a week max!

I was put on adjuvant treatment in 2023 (I took dabrafenib and trametinib for 12 months), I was hospitalised with a number of different infections several times. Even when I was at home, I was often exhausted and poorly. This meant my husband had to take a lot of time off work to help with childcare.

Adjuvant Treatment Information

I had to stop and restart my tablets a lot throughout the 12 months to be able to tolerate them. Each time I restarted I would have a few days where the side effects were intense – headaches and achiness, my skin around my face and neck was bright red and puffy. My dose was reduced after 3 cycles and then I continued for the whole 12 months to give myself the best chance of a successful outcome long-term.

“Melanoma Focus has provided me with advice I can trust. I’ve been on the website a number of times over the last 2 years, and also follow their social media.”

My type of melanoma is often misdiagnosed and while I’m sure the medical team thought they were being reassuring by telling me that it was probably nothing to worry about, and that they were sure the next test results would come back negative, for the first 6 months I experienced complete shock every time a test result would come back worse than expected. This has left me worrying about what other shocks are to come and, at times, lacking trust in my medical team. In fairness, I think the results were a surprise to everyone – acral lentiginous melanoma can occur in any skin tone and can catch people out.

Melanoma Focus has provided me with advice I can trust. I’ve been on the website a number of times over the last 2 years, and follow their social media. As a mum I’m always wanting to do the best by my children, and I’ve found videos about sun safety advice really helpful.

It’s also really reassuring to know that there is a formidable team out there (behind Melanoma Focus) who are championing our cause – like the VAT burn campaign and getting awareness out there, but also supporting medical trials to further knowledge about the disease and the development of new treatments.

Here is some advice that Bea would like other melanoma patients to know

1. Take charge of your own disease. Read up on websites you know you can trust, such as Melanoma Focus, also ask if you can speak to other patients in your position to swap tips on how to manage side effects such as post-surgery scarring . (I spoke to a lady who had also had acral lentiginous melanoma and therefore foot surgery to talk about how to manage the wound on my foot).
2. Try to continue with the things you love in life – and give yourself realistic goals in achieving this. I used to run half marathons, now if I jog for 20 minutes that’s a success for me and that’s ok!
3. Accept help & surround yourself with people who can support you in whatever way you need. We have had friends and family helping us care for our children when we’ve needed the support.
4. Accept emotional support too – I cannot praise my GP enough, who referred me quickly in the first place but have also listened to my worries and helped me to come up with solutions throughout this journey. I have also been speaking to a counsellor about my fears.
5. If you’ve got young children like us, explain in ways they can understand what is happening. My boys are nearly 3 and a half now and we are using stories and videos to explain why Mummy goes to hospital. They’ve also been in with me for a skin check just to see that it doesn’t hurt and it’s ok.