Alison’s Story

During 2022, Alison was diagnosed with amelanotic melanoma. She has since undergone a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB) and did a year of Immunotherapy (pembrolizumab) treatment. Up until 2025, Alison was doing well until a tumour was found on one of her lymph nodes, which has now been removed and treated. She will now have regular scans and wants to share her story to help raise awareness.

“The diagnosis came as a total shock as I had first been referred for an annoying colourless nodular lump on my left heel in July 2020.”

The diagnosis came as a total shock as I had first been referred for an annoying colourless nodular lump on my left heel in July 2020. It had grown where previously there had been nothing more than a brown freckle, first being noted by the dermatology department as a dermatofibroma in 2016. There was no mole and never had been.

“The lump didn’t hurt or bleed, it was just growing and made buying and wearing shoes more of a challenge.”

The lump didn’t hurt or bleed, it was just growing and made buying and wearing shoes more of a challenge. On the first of two GP referrals, the dermatology department did not seem at all concerned about treating it with any urgency. During Covid, judgment was made by way of a photograph. It was only after the second GP referral (post covid) when the lump was over 1.5cms wide and very raised that an appointment in February 2021 was made on a routine basis for a biopsy to be taken. Even then there was no hint it was anything other than benign and possibly a neuroma. I had to chase on several occasions and then the GP also chased with the biopsy finally being taken in about May 2022.

“Post diagnosis I did what I could to raise awareness on this subject agreeing to my case being used in training etc.”

There seemed to be a lack of familiarity with amelanotic growths. The same applied to much of the published literature that might have alerted me to the possible existence of such colourless growths requiring more urgent attention. Post diagnosis I did what I could to raise awareness on this subject agreeing to my case being used in training etc. You can learn more about the different types of melanoma, here.

“I was BRAF negative. I then started Immunotherapy (Pembrolizumab) treatment for a year from October without too many adverse effects although developed mild lymphoedema.”

 

I found out it was melanoma the same week as our guests arrived from the Ukraine. Quite a week. The Wide Local Excision (WLE) and Sentinel Lymph Node Biopsy (SLNB) followed in August and melanoma traces were found in 2 lymph nodes. This was not such a shock as the WLE had revealed that it was a further 6.1 mm in depth over the original biopsy. I was BRAF negative. I then started Immunotherapy (Pembrolizumab) treatment for a year from October without too many adverse effects although developed mild lymphoedema.

Over the following couple of years, I regained fitness and apart from the odd biopsy all went well until September 2025 when the 6 monthly scan showed a swelling at one of my lymph nodes which was found to be a tumour. This had not been picked up on an examination just over a month earlier although once the scan had shown its existence it was evident.

This was removed by groin lymph dissection in December 2025 with melanoma found in 2 lymphs, an operation from which I am experiencing a slow recovery. I am told there is to be no more adjuvant treatment, just scans.

What advice would you give to other melanoma patients?

Be your own advocate and join Melanomamates on Facebook or other places where questions can be raised amongst others that have experienced similar issues but take care to avoid being overwhelmed.  Science is advancing and your medical team should be there for you.

In order to support Alison’s mission to raise more awareness about amelanotic melanoma, we  have included images of her melanoma below. You can learn more about the types of melanoma, here.