Elaine’s Story

In 2023, Elaine’s melanoma was initially diagnosed as Stage 2C.  However, it was found during the full staging that a lymph node contained melanoma, with no further spread and she therefore was diagnosed as having stage 3C melanoma. She is now on a year’s course of targeted therapy (dabrafenib and trametinib) and has regular scans. Here, she generously shares her story with us.

More about Melanoma & Staging

I was initially referred to dermatology in June 2022 with a lesion that I thought was suspect, it was growing, irregular in shape, had pigmentation spots and was crusting over. Unfortunately, the dermatologist did not think it was urgent and put me on the non-urgent list for biopsy.

The lesion then grew further and became a lump with more pigmentation. I contacted the dermatology secretary to try and get seen again but was denied access to a further appointment and long waiting lists due to covid were blamed.

Over the next few weeks and several emails to dermatology along with my GP also trying to get me seen, the GP decided to put in a new referral. By this time the lesion was 1.5cm wide. I was seen within 2 weeks, but it was another 6 weeks before I had my biopsy.

Just over a month later I received the initial diagnosis of stage 2C melanoma. At the appointment I remember saying it was what I was expecting but in the following days the reality set in, I realised I wasn’t expecting melanoma, I thought it would be a BCC, something easily sorted and not as serious.

“The weeks that followed were full of worry in case the cancer spread from the lymph nodes.”

This was followed by a PET /CT scan which showed some activity in 1 of my lymph nodes. The weeks that followed were full of worry in case the cancer spread from the lymph nodes.

I had my wide local excision and lymph node removal 3 months to the day from diagnosis. I can’t underestimate the mental impact that wait had on me, worrying that the cancer could be merrily making its way to other organs. The surgery went well, melanoma was found in the lymph node but contained within it and there was no melanoma found in the tissue from the wide local excision. The following scan showed no further cancer which is great news. Because cancer was in the lymph node I had stage 3C cancer.

This requires further treatment, and I am now on a year’s course of dabrafenib and trametininb, a targeted treatment. My oncologist informed me that I have the BRAF gene mutation V600e.

However, I still worry that there could be microscopic cells lying in wait. I have my next scan at the end of May 2024. I usually have a PET /CT scan but this one is CT.

Cancer has really knocked my confidence, I am worried that the CT scan might miss something, I try and tell myself that the consultants know what they are doing and would request a PET scan if it was necessary.

“My lesion wasn’t the typical mole that we hear about but still had the red flags we know about.”

I wish I had insisted at that first appointment that my lesion was removed as part of the 2 week wait cancer pathway.

I also still have pain, weakness and numbness in my hand, 5 months on. This has prevented me from going back to work as my job requires strength in my hand and arm.

My lesion wasn’t the typical mole that we hear about but still had the red flags we know about.

I hope by sharing my story more awareness is made.

Melanoma Focus recommend that the key signs to look out for when checking your skin. Look for moles or lesions that have:

  • Changed: It is new or seems to have changed since you last saw it (don’t look for detail; you can see it has changed just by glancing at the lesion, that’s enough)
  • Not going away: Once a new lesion has appeared, it remains on the skin for longer than 6-8 weeks
  • Odd (the most crucial test): It simply looks strange, worries you or seems to be different from other lesions on your skin, then you should get it looked at by a doctor, who may refer you to a specialist – usually a dermatologist

What advice would you give to other melanoma patients?

Ask questions. I am not good at thinking of questions at appointments, I take in the information then think of something afterwards, maybe days after. I now have a constant note on my phone which I add to between appointments. Also read! I have found so much useful information, some worrying but most reassuring, from websites such as Melanoma Focus. Don’t take no for an answer, I dread to think what the spread would have been if I had waited for my original biopsy appointment.

Why is Melanoma Focus important to you?

Knowing that there is a helpline out there specifically for melanoma is so reassuring. I’ve only used it once so far and only with a question about using Insect repellent with sunscreen. But I had a lovely chat with one of the specialist helpline nurses and I know if I had a problem, it would be treated with respect by a knowledgeable professional. I’m also extremely grateful for all the research they do and their input into getting treatments agreed by NICE. Spreading awareness via Facebook is a useful tool. I feel more people are becoming aware of the need to wear sunscreen all year round and to carry out monthly skin checks. I share this reminder every month.