MY MELANOMA STORY
When I sat down and wrote this page, I realised what a long journey I have been on and therefore it became an essay. My journey is not as long and as complicated as others and to those people I send my love.
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So, I guess some headlines might help (if you can't face reading all the detail below, and I don't blame you if you don't fancy reading someone else's medical history!) I was diagnosed with Stage 2c Melanoma in 2020 which was then 'upgraded' to Stage 3c shortly afterwards. I received a 12 months of adjuvant targetted treatment in 2021, hoping that it would prevent the melanoma from returning. My scans were clear throughout 2021.
In October 2022 I received the news that small amounts of melanoma had been found in both lungs and therefore I was told I had Stage 4 Melanoma. Just before Christmas of 2022 I found out a lump in my neck was a melanoma deposit in a lymph node. Following that in May 2023, 3 small melanoma deposits were found in my brain. I received gamma-knife treatment for the brain metastases.
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I am currently on immunotherapy and remain forever hopeful.
The story begins: 2010
When I look back at old photographs, I can see that the mole that eventually turned cancerous had been there for years. It was a little pink circle, slightly raised in the middle. This photograph was taken in 2007 when we were on honeymoon. The mole on my arm is just below my right shoulder... There aren't many photographs of it as I usually wear tops with sleeves.
In about 2010, not long after my son was born the mole started to grow slightly, so I went to a GP to get it looked at. To my surprise, it was diagnosed as a third, or 'supernumerary nipple.' I remember the GP saying that it was in an unusual place, but it was healthy and it may have started growing after my son was born due to hormones. It makes me embarrassed now to think that I believed this, I didn't think to question it. It became a bit of a family joke. If I am honest, this embarrassment is one of the reasons it has taken until now to start this blog,
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During subsequent years, I did ask different GPs about it, often when I was going for other issues. I was told that it was healthy - it was an even colour and symmetrical and nothing to be concerned about.
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I was always aware that I was at risk of skin cancer as my skin is so pale, but I didn't really know about melanoma. Like many people, I was sunburnt on a small number of occasions when I was younger. These sunburns were always by accident as I have never liked the feel of the sun on my skin, I get too hot. Sunburns were always the result of not putting on enough suncream or 'missing a bit' and/or not realising how strong the sun was on cloudy days. So, I decided years ago that I would rather stay in the shade, covered in Factor 50 than go through the humiliation of turning red and having those awful red lines on my body.
Things Start to Change : Summer 2020
Again, looking back at photographs I can see that towards the end of 2019 what I thought was my 'supernumerary nipple' began to change. It very slowly began to grow.
I didn't really pay attention to it until the summer of 2020, in the middle of the Covid pandemic, when people started to ask me over zoom meetings if I had bruised my arm.
At the same time, as I was having night sweats and my periods were heavier and more painful, I thought that the changes in my 'third nipple' were likely to be hormonal as I assumed I may be starting early peri-menopause. At the same time, I remember in the early summer of 2020 googling 'cancer of supernumerary nipples'. In late June/July 2020 things really started to change quickly - the 'third nipple' began to get darker in colour, much more raised like a little volcano and it started to itch and peel. I felt like the itch was deep inside it rather on the surface. I found an app called Skin Vision - I uploaded a photograph of the mole, it analysed it and told me to urgently contact a doctor. I rang the GP.
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During that time GPs were doing telephone consultations due to the pandemic and I was asked to send a photograph. The GP was very decisive and saw me that afternoon. I remember her saying that she really didn't know what it was - mole or third nipple - but it needed to be seen by a dermatologist and that she was putting in an urgent referral. I wasn't particularly anxious.
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After a couple of weeks I spoke with a dermatologist, again over the phone. She was the first person I remember mentioning cancer, she said it could be a supernumerary nipple and you can get cancer of the nipple. I was urgently referred to plastic surgery and spoke to them within 2 weeks. Again, a telephone consultation with the plastic surgeon who said it was unlikely to be cancerous as it had been there for so long but he would like to see me. So the following week I went to the hospital . I had to go alone due to the restrictions due to Covid. I remember sitting in a small consultancy room and the plastic surgeon looking at my arm and feeling under my arm for signs of swollen lymph nodes. He said it could be melanoma and that he would like to do what they call a Local Excision Biopsy. It would all be cut away and tested. If it came back as cancerous they would do a further Wide Local Excision where more would be cut away and lymph nodes would be taken to test. The reality started to sink in. This could be serious, especially if it had spread to my lymph nodes.
Surgeries : August & October 2020
When melanoma is suspected, the first surgery is usually a biopsy where the mole is cut away under local anaesthetic. My first surgery happened in August 2020. It had to be delayed by just over a week because of the Covid pandemic I had to isolate for around 10 days before going into hospital. It was a quick operation and I remember the lovely theatre team who made me laugh. They were so kind. It was sore for a couple of weeks but it healed well.
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I got the results on the 14th September, the day after my dad's birthday. The plastic surgery consultant called me to give me the results over the phone. I remember sitting in my son's bedroom waiting for the call, he was at school and for some reason this place felt the safest place in the house. The consultant called me. My 'third nipple' was a mole that had turned cancerous and I had Stage 2c Melanoma. It was 4,5mm deep, which was quite a thick.
As it was melanoma, it meant that I was now under the care of the local cancer hospital, I would have a team of cancer nurses and I would have to have a second surgery - a Wide Local Excision - where more of the skin around the cancer would be taken to get 'clear margins'. I would also have a Sentinel Lymph Node Biopsy where the nearest lymph node to the melanoma would be taken out and tested to see if the cancer had spread. It was a difficult day telling my family. I had rehearsed what I was going to say, I still do that now when I am waiting for results - it helps.
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Before my surgery, I had a CT scan of my body from below my neck to my pelvis and an MRI of my brain. The reality that this cancer could have spread was so frightening. The Wide Local Excision took place in October 2020. The scar is in the photograph above - this was about a week after surgery - when people say 'skin cancer can just be cut out' I always want to show them this picture. The scar is large. I also had to have a lymph node taken out from under my arm. It took a while to heal and getting my strength back in my arm and shoulder took months. A few weeks after the surgery I found out that the melanoma had spread to my lymph node under my arm - a small deposit but nevertheless I was now Stage 3c. I would start adjuvant treatment in the hope that it would prevent the cancer returning.
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As my melanoma had a genetic mutation - the BRAF+ mutation - it meant that I had a choice of treatment - immunotherapy or targeted therapy that was in tablet form. I was told that the efficacy of both treatments was the same, but immunotherapy could cause permanent side effects whereas the targeted treatment's side effects usually stopped if treatment was paused. As the targeted treatment was designed for people with the BRAF+ mutation and the side effects were potentially easier to manage, I chose this option. So I began 12 months of Dabrafenib and Trametinib on Boxing Day 2020. Due to the pandemic, I was also now classed as Extremely Clinically Vulnerable and would be shielding.
Stage 3 Treatment: 2021
One of the most challenging part of the treatment was the fact that you have the tablets on an empty stomach - so for three hours in a morning and for three hours in an evening, I couldn't eat or drink anything but water. All I could ever think about was food, particularly cheese and bread.
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I lacked energy also and used to frequently have what I called 'treacle days' where I felt like I was wading in treacle. I did also suffer with high temperatures - a common side effect - and also half way through treatment I suffered with hepatitis brought on by the treatment. After that, I was put on a reduced dose which helped. I put on quite a bit of weight which I struggled with. But, with the support from the hospital I did get through my treatment.
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After 12 months of treatment I was then put onto 3 month skin checks and 6 month scans and basically I was on 'watch and wait' as there was no evidence of disease. I did find coming off treatment tough and I hope to write a blog post about that at some point. I took recovery quite seriously by starting pilates to build back strength, going to counselling to help me mentally and seeing a nutritionist who helped me learn about healthy eating and help me lose the weight I had gained.
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Stage 4: October 2022
This is a personal blog about my own experience of melanoma. It is written and edited by me, Charlotte Killeya. The opinions here are my own. I am not an expert in the diagnosis or treatment of melanoma. If you are worried about your health please feel medical advice.
In October 2022, I received the news that 'something had shown up on my recent CT scan. A little nodule on my lung needed investigating.
This little nodule had been seen on a scan in April and they had been keeping an eye on it. It had grown. I knew, even before the scans it was likely to be melanoma. The subsequent scans confirmed this. I was booked in for lung surgery. They had found another smaller nodule, but the plan was to cut that out at a later date as it was so small. I prepared myself for surgery as best I could. It was due to happen in January 2023. But, just before Christmas I found a hard lump in my neck. After scans and a biopsy it was confirmed that this was also a melanoma deposit in a lymph node in my neck.
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It was decided that as the melanoma was now in three places, I would start immunotherapy in February 2023 - Ipilimumab and Nivolumab for 4 treatments and then moving onto single Nivolumab every month for two years.
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In April 2023, I was hospitalised due to side effects, and during my stay I had an MRI scan. On that scan two lesions were found - tiny little white dots. When I saw the neurosurgeon who explained that these were melanoma it was the worst of days; the worst day of my melanoma journey. Fortunately these were treatable with gamma-knife surgery.
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Immunotherapy has not been an easy journey so far. I have suffered with colitis and have been hospitalised due to this. It's been tough. But, during the latest hospital stay I received the news that I am responding to treatment; it's early days.
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It was during one of these hospital stay, that I made the decision that I wanted to write this blog, to try and make sense of all of this, to share my story with others and to try and spread some hope!
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The Dandelion
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I'll be writing about the symbol of The Dandelion in my blog, but it's often used to describe cancers that have the ability to spread. If we see the dandelion clock as a cluster of cells that made up the primary melanoma tumour, then we can see that it can be cut out - like we can dig out the dandelion that is in our garden. But little seeds can drift and land in new areas and another dandelion can grow quite a long way from the original plant. The little seeds are like the little melanoma cells that escape being cut away, they are so small and they land in distant areas of the body.
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