Leigh’s Story

“This has impacted on my life as I enjoy walking and at times have had to rest up after overdoing it.”

During 2010, Leigh was diagnosed with stage 3A melanoma and she took part in a clinical trial and although she didn’t receive the new treatment being tested, she wanted to help improve the treatment of melanoma to benefit others in the future. Seven years later scans showed that the melanoma had spread within her body. Melanomas were found in a vertebra, which had collapsed, in her lung and a 13 cm tumour near her kidney which had been pressing on her stomach. She was firstly treated with dabrafenib and trametinib and after 7 months was switched to ipilimumab and nivolumab and then just received nivolumab. She has now been off treatment for 3 years and is doing well. Here she has very kindly shared her story.

I was diagnosed with stage 3A malignant melanoma in 2010. I had previously been misdiagnosed by my GP, who stated it was a wart and used cryotherapy to freeze it off. It was only after 18 months later when it started to bleed, I went to another doctor who fast tracked me to my local dermatology department. (If your GP tells you they have no concerns about a mole or lesion, but you notice any changes such as a change in shape, colour, size, if it bleeds or is itchy, we advise you to contact your GP again.) After being diagnosed with melanoma I had a sentinel node biopsy and a wide local excision, see our animations to understand what a sentinel lymph node biopsy is and what happens on the day. The results showed I had some small melanoma cells in the sentinel node. As a result, I had a complete left groin dissection (which was standard procedure in 2010) and was in hospital for 14 days.

I also developed lymphoedema (which is a fairly common side effect of a complete lymph node dissection) and I have had various treatments (mainly unsuccessfully). I had my leg bandaged for 3 weeks on two occasions without any considerable difference. I purchased an expensive pump and wear a prescribed compression stocking. I think you nowadays can borrow them to see if they are helpful before purchasing one. This has impacted on my life as I enjoy walking and at times have had to rest up after overdoing it. Also, I have difficulty getting shoes to fit. I manage my lymphoedema by skin care, using the pump, exercise and compression stockings. I however find compression stockings rather uncomfortable especially in warm weather and at times don’t wear them.

“I was a primary school teacher and went part time to achieve a work life balance as a result of my diagnosis.”

I was regularly monitored by the hospital, having chest x rays and follow up appointments with the consultant. I was a primary school teacher and went part time to achieve a work life balance as a result of my diagnosis.

“I was really upset and frightened, but the consultant gave me a treatment plan and reassured me that this was my best option.”

In January 2017 I began to feel ill and lost a lot of weight I had backache and later a sharp pain in my chest. I initially was told it was anxiety and acid reflux. I asked if it could be my melanoma returning and was told after all this time extremely unlikely. The GP examined my stomach, and I was told it was normal. The next day I had a routine oncology appointment at the hospital and after feeling my stomach the doctor thought it was serious, took some blood tests, a scan and a lung biopsy. It turned out I had various melanomas were found in a vertebra, which had collapsed, in my lung and a 13 cm tumour near my kidney which had been pressing on my stomach. I was really upset and frightened, but the consultant gave me a treatment plan and reassured me that this was my best option. Being BRAF positive I was firstly given dabrafenib and trametinib. It was thought I may need an operation to strengthen my spine but then it was decided to give the treatment a chance to work. The operation therefore didn’t go ahead, and I was grateful. I developed some side effects e.g. rigors and chill as well as fatigue and joint pain at times and I spent a night in hospital with a high temperature.

“My friends have always been there for me and have let me be me (not just a person suffering from cancer.”

After 7 months my recent scan results showed progression, and I was switched to a combination of ipilimumab and nivolumab. I again was given appropriate information about the side effects and felt very well looked after by the oncology team. I completed 4 cycles and then went onto nivolumab until 2022. I developed vitiligo on my arms, one leg and chest but only suffered mild side effects to the treatment. I stopped nivolumab in October 2022 and at first felt apprehensive and worried my cancer would return. My PET scan showed no evidence of metabolically active disease. I still have a large adrenal mass of 6.5 cms but have been told it’s necrotic (dead tumour).

Throughout this journey I have received excellent care from my consultant and specialist skin nurses. I have also had the support of my husband who has taken me to all my many appointments and has listened to my concerns. My friends have always been there for me and have let me be me (not just a person suffering from cancer.)

 What advice would you give to other melanoma patients?

• To take a list of questions to your appointments and if you prefer someone with you for support.
• Contact the skin specialist nurses with any questions no matter how trivial you think they are.
• Get a second opinion if you think you need to.
• Keep informed on the subject using Melanoma Focus etc.
• Take sensible measures to cover up in the sun without being obsessive. I still go on holiday but tend to stay out of the sun at its hottest. I wear a wide brimmed hat and apply suntan lotion on a regular basis.

Lastly enjoy life as much as you can and try not to dwell on unimportant things (easier said than done I know)

Why is Melanoma Focus important to you?

I have only recently heard about Melanoma Focus I have read other people’s stories and found them interesting and informative It seems an invaluable resource and I hope to read it in greater detail and would like to support anyone going through a similar journey