Charlotte’s Story

Charlotte was first diagnosed with Stage 3c melanoma in 2020, two years later Charlotte’s melanoma progressed to Stage 4 after spreading to her lungs. Since then, she has had targeted therapy (Dabrafenib and Trametinib) and immunotherapy (Iplimumab and Nivolumab). During Spring 2023, a scan picked up that Charlotte has three tiny brain metastases, she is now receiving further treatment and has regular 3 monthly scans. Here she very generously shares her story:

 “Trust your instincts – you know your own body the best. If you think something isn’t quite right, then get it checked out.”

I was first diagnosed with melanoma in September 2020, during the Covid pandemic. I was 41 years old, married and our son was 11 years old. Following a Sentinel Lymph Node Biopsy, I was staged at 3c. Just over two years later, my melanoma progressed to stage 4. I live my life the best as I can with melanoma, and I take each day at a time.

I find sharing stories of melanoma with other people who have experience of the disease, helps me a great deal. So, I hope that by sharing my story with you, whether you are a patient, relative or friend, it helps.

“As a child I learnt that my skin would burn quickly – even on cloudy days I have managed to get a sunburn.”

I’ll start my story by describing my skin – it’s very pale. I’m the type of person who needs one of the lightest colour foundations you can find at a make-up counter. I have a few moles and freckles and I blush easily! I have never really liked being in the sun. As a child I learnt that my skin would burn quickly – even on cloudy days I have managed to get a sunburn. So, for many years I have slapped on suncream, covered up and stayed in the shade.

A little while after my son was born (he was born in 2008) I noticed that a little pink mole on my right shoulder had grown a little.  I visited a GP, and she said it looked healthy. Surprisingly she diagnosed it as a “supernumerary nipple” otherwise known as a “a third nipple.” It really looked like one and to be honest it became a bit of a family joke. It remained healthy and unchanged for years.

Then in 2020, during the Coronavirus pandemic, it began to change. Looking back, it had been changing colour very slowly but during the summer of 2020 it began to itch and the central point of it began to grow upwards. I called the GP. She was very decisive and referred me to dermatology. A few weeks later, I was having an operation to cut out the “lesion” and it was diagnosed as melanoma. It turned out that it was never a “supernumerary nipple” but a mole. I regret not questioning that initial “supernumerary nipple” diagnosis it as may have resulted in me going for help sooner. I will always carry guilt and embarrassment about that. But I’m glad I got help when I did because I could have waited even longer.

In those early days, I admit to searching the internet about the disease. I saw photographs of melanomas and I couldn’t imagine that mine could be anything else. A couple of months later, after my Wide Local Excision (WLE) and Sentinel Lymph Node Biopsy (SNLB), I found out that melanoma deposits were found in one lymph node under my arm, making my cancer stage 3. Fortunately, everything else was clear. I have the BRAF mutation and so I had the choice of immunotherapy or targeted treatment. I chose targeted and started to take two types of tablets a day – Dabrafenib and Trametinib (“Dab and Tram”) – for 12 months.

“There was a lot to take in, but the information I received from the hospital and the Skin Cancer Nurse team was very good.”

It was a whirlwind. Due to the pandemic a lot of the consultations were over the telephone and when I went to hospital it was almost always by myself. There was a lot to take in, but the information I received from the hospital and the Skin Cancer Nurse team was very good. I started taking Dab and Tram on Boxing Day 2020. I was told to shield as I was classed as “Extremely Clinically Vulnerable.” It was a tough time. Understandably, cancer support services were all online or over the telephone, but this made me feel quite isolated.

I did experience some side effects of Dab and Tram – mainly high temperatures and fatigue. My liver also started to complain a little. About six months in, I was put on a reduced dose of Dab and Tram, but I managed to complete the 12 months.

“I cobbled together a bit of a “recovery plan” for myself including physio, nutrition, counselling and Pilates. It all helped me feel more in control and I began to feel stronger.”

I found finishing adjuvant therapy challenging. Whilst on treatment, I felt that we were doing something about preventing melanoma coming back. When I finished taking my dab and tram tablets, I worried that my cancer would recur. It took a few months, but I began to recover both physically and mentally. I cobbled together a bit of a “recovery plan” for myself including physio, nutrition, counselling and Pilates. It all helped me feel more in control and I began to feel stronger.

Unfortunately, in the autumn of 2022, ten months after I finished adjuvant treatment, I was told that a tiny “nodule” in my lung was growing. A smaller nodule had also been found and that was going to be monitored and removed at a later date. The lung surgeon was confident that the larger of the two metastases could be removed and surgery was scheduled for January 2023. However, melanoma had other plans. Just before surgery, I discovered a lump in my neck. A scan and biopsy followed. My lung surgery was cancelled at the last minute as melanoma had been found in one of my neck lymph nodes.

As melanoma was now in my neck as well as my lungs, I started immunotherapy – Iplimumab and Nivolumab (“ipi/nivo”.) I was scared and disappointed to be back on treatment. I spoke with the medical team and also nurses at Melanoma Focus and they explained how immunotherapy was a “game changer” and that reassured me. We hoped that it would work for me.

I managed 3 out of the 4 combined ipi/nivo therapies but had to stop due to colitis which resulted in hospital stays. Dealing with colitis has been very difficult. I had never understood how debilitating colitis could be. Thankfully, I was given a treatment called infliximab which helped to settle things and I have found single nivolumab easier to tolerate.

During Spring 2023 scans showed that I had three tiny brain metastases. Finding out that melanoma had nestled in my brain frightened me; it felt like a different level of anxiety to what I had been experiencing previously. I was able to have SRS treatment (Gamma Knife) to “blast” the brain lesions and thankfully it worked. Sadly, this was not the last time brain mets were found, I had another round of Gamma Knife six months later in November 2023.

“At each treatment, I could take someone with me and this really helped.”

My Skin Cancer Nurses and Melanoma Focus nurses were extremely reassuring when I first had my Gamma Knife treatment. I needed to talk it through with someone who understood. The SRS team were amazing and cared for me so well. At each treatment, I could take someone with me and this really helped.

“As a family we laugh a lot, and we cry sometimes too – often during the same conversation. I am so grateful that they are always there for me.”

I could not manage without the support of so many people including my family, friends, medical team and other forms of support such as my Pilates class and my counsellor. Telling my family that I had cancer was one of the hardest things I have ever had to do and as my melanoma has progressed, this hasn’t got any easier. My son was only 11 years old when I was first diagnosed and telling him was incredibly difficult. My husband and I, along with the rest of our family, decided that we would approach my melanoma in an open and honest way. We remain hopeful and positive whilst being realistic. As a family we laugh a lot, and we cry sometimes too – often during the same conversation. I am so grateful that they are always there for me.

At the time of writing, I am receiving active treatment and expect to be for a while yet. I have regular three-monthly scans and I am trying to live the best life I can and holding onto hope.

“I try to educate myself as much as I can about this disease and so I can ask questions or have a greater understanding of what I am being told by the medical team.”

What advice would you give to other melanoma patients?

I am still learning about melanoma and how it has affected me and my family so far and how it may do in the future. That learning comes from other people who have experience of this disease, the medical team who care for me, my family and friends and charities like Melanoma Focus. I try not to “google” about melanoma, although it is tempting. Information on google is not always accurate or up to date and it isn’t about YOU as an individual. Instead, I ask my skin cancer nurses, oncologist and charities like Melanoma Focus. I try to educate myself as much as I can about this disease and so I can ask questions or have a greater understanding of what I am being told by the medical team.

I think recognising that a diagnosis of melanoma can have an impact on not just your physical health but also your mental health too. I have struggled with my mental health because of the impact of this disease and thankfully my family recognised this and helped me reach out to my Skin Cancer Nurses and my GP. They have been incredibly supportive. I also have regular counselling that helps my anxiety. I am trying to approach life with positivity and humour but also honesty and realism, that can be a bit of a challenge to get the right balance.  I can find some positivity each day, but I also know that things can be very tough. I find talking helps and writing. I started a blog called “My Melanoma Memoir” about my experiences of melanoma as it helps putting my thoughts into words and I hope it might help others too.

I think another piece of advice is to trust your instincts – you know your own body the best. If you think something isn’t quite right, then get it checked out.

Practical advice is good too – fellow melanoma patients are great at giving this. Someone once told me to buy some furry socks for when I have my scans to keep my feet warm and I do this every time – it makes me feel cosy! I also take a “treatment picnic” in with me during infusion days to make it a bit easier along with my iPad, headphones and sometimes my cross stitch (yes, it looks like I am staying for the week!) I think it’s important to embrace the things that make you feel more comfortable and in control because you really don’t feel like you are most of the time.

Why is Melanoma Focus important to you?

“The Melanoma Helpline nurses are lovely, having a specialist to talk to is very reassuring and comforting – especially in an evening or during the weekend.”

I am so grateful that I found Melanoma Focus. At times it can all feel very overwhelming. Having a place where you can find reliable information that is easy to understand is vital for patients and our families. The Melanoma Helpline is very important to me.  I have called it at times when I have needed more information or just someone to explain things to me when I have needed reassurance. The Melanoma Helpline nurses are lovely, having a specialist to talk to is very reassuring and comforting – especially in an evening or during the weekend.

Melanoma Focus works with both patients and medical professionals, and I really value that. It means that there are links across both groups and that is so important for our care, having our voices heard and to be informed about future treatments.

I have recently attended my first Melanoma Patient Conference, knowing that I am not alone with this disease gives me a great deal of comfort and hope.