SKIN CANCER - A FAMILIAR STORY

SKIN CANCER - A FAMILIAR STORY

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PATIENT VOICE

A familiar story: One family’s historywithmelanoma

Diane Cannon

I am a 54-year-old skin cancer patient with a family history of basal cell carcinoma (BCC), squamous cell carcinoma (SCC) and melanoma. I am the youngest of five children. I have three older sisters, Monica, Laura and Pat, and a brother Frank. I guess you could say I wasn’t planned as my mum and dad were in their early forties and thought having another child was well behind them, but here I was weighing in at 11.10lb… my poor mum!

I had a wonderful childhood, and although we weren’t wealthy, my

parents worked hard to make sure we didn’t go without, and that included a summer holiday in Europe every year. We had some amazing holidays, bright beautiful Italian sunshine, playing on the beach, in and out of the water… just a typical holiday, minus the importance of using sunscreen. I am going back 42 years ago when it just was not the ‘in thing’ to put on sunscreen. Why am I telling you this? Well, this may have been a contributing factor to my family history of skin cancer. Teenage years At 17, I went on my first girls’ holiday to Greece. I was blonde with fair skin and burnt easily. Before any holiday I would use a sunbed for two weeks to get a ‘base tan’. Going on holiday with a hint of colour always made me feel great. My holiday clothes looked better on tanned skin – or so I thought. By using a sunbed, I thought I was getting my skin ready for that hot Mediterranean sun. How naïve I was. My holiday was typical of a teenager, out partying every night and then up early laying all day by the pool sleeping. Even though sunscreen was now well advertised, it was more about how brown you could go and

soon be back in the sun trying to get a deeper colour. I wanted to be as brown as I could get. In fact, I am sure some of you reading this will relate to the times you measured how good your holiday was based on how good your tan was when you got back home and into work. I would literally have a sunbed on hire for when I got home so I could keep my tan going as long as possible. Looking back, I am horrified at my actions because I realise that the damage to my skin was done back in my earlier years, so is it any wonder I keep finding new skin cancer lesions all over my body?

how fast. I never really thought about protecting my skin, or if I did, it was after I had burnt. I have memories of burning almost every time I went away; shoulders, chest, face, and although I would cover up, in my second week I would I had a wonderful childhood, and although we weren’t wealthy, both my parents worked hard to make sure we didn’t go without

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mole and any surrounding tissue that may be affected. She had an extensive scar and I guess we all just couldn’t believe how a mole so small could cause such a huge scar. Claire was under the care of the hospital for the next three years, and because there was no evidence of any new moles or any other concerns about the disease spreading, she was given the “all clear” and told that she would need to see a skin specialist every year for a check-up. Little did we know that it was just the start of her nightmare with melanoma. A family affair Life went on as normal, but one thing really did change – we all became aware of our skin and we started checking for any new or changing moles. Over the course of the next 10 years, my dad was diagnosed with squamous cell carcinoma on his face and numerous basel cell carcinomas on his body. My dad was ex-Merchant Navy and went away to sea from the age of 15. There was no sunscreen back in 1920s. Two of my sisters and my brother all received a skin cancer diagnosis with their BCCs sites

located on the face. Due to the location, they all had reconstructive plastic surgery to remove the cancer. My sister had a hole in her cheek the size of a 10 pence piece – her face never looked the same again. Claire – my warrior princess In late 2012 I was chatting to my sister – Claire’s mum – and she mentioned that Claire hadn’t been feeling well and that she had found a lump under her arm whilst taking a shower. The GP said it was swollen glands, gave her some antibiotics and sent her on her way. Claire was a mum of two children at this point, so she never really slowed down. She continued to feel unwell but put it down to the aftereffects of a viral infection. This lasted for weeks. She was tired, had no energy and the lump under her arm was not shifting. Finally, her GP sent her for some routine tests to see what was going on. Claire was now living in a new house, so the current GP did not know that 15 years earlier she had been diagnosed with melanoma. It turns out her records

She has what? I was introduced to skin cancer when I was 30. My young niece Claire was diagnosed with nodular melanoma. Claire was in her early twenties when her mum noticed a very dark mole on her lower back that just didn’t look right. Her instinct was right; Claire had early- stage melanoma but at this point we just didn’t know it. Claire went to her local GP on a few occasions and was told every time that it wasn’t anything to worry about. This was the familiar phrase we heard over and over again.

Six months later, the mole on Claire’s back started itching and

bleeding so we urged her to go and get another appointment. This time she saw a new GP. He also said he didn’t think it was anything to worry about, but because she was so anxious, he would arrange for a sample of the mole to be removed and put her mind at rest. That small biopsy came back as melanoma. Over the course of the next few months Claire was in hospital for an operation to remove the rest of the

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did not indicate anything linked to melanoma, and as Claire had been given the ‘all clear’, she did not think it could be back. But the melanoma had been lying dormant and she was now dealing with another melanoma diagnosis. She didn’t know at this point that it was stage 4 malignant melanoma and she had tumours in her lung and brain. I may have been Claire’s auntie, but because there was only nine years difference in age, we were also good friends, so it was the most natural thing to be her ‘go-to person’ while she was going through her melanoma diagnosis and treatment. Claire needed someone to be positive and keep her focused and not to give up. For the next 12 months I attended all of Claire’s hospital appointments, sat with her as she went through chemo and was there when her hair fell out. I was going through my own nightmare because mentally I was drained. There is only so much positivity you can give when you are watching someone you love hit so many hurdles. I cannot tell you how many nights I came home and sobbed. But this wasn’t about me, I needed to pull up my positivity pants and get on with it. My family relied on me to go to the appointments and then give them an update. Melanoma UK I was introduced to Gill Nuttall, CEO and founder of Melanoma UK during Claire’s illness. I will be forever grateful for the support Gill gave me and my family during that awful year. Melanoma UK offers support for everyone dealing with melanoma, including patients, carers, family, friends and medics. Gill supported me so much, she even went with Claire to a hospital appointment when I couldn’t be there. Trying to navigate the confusing melanoma pathway was overwhelming, but with Gill’s help we got the support we needed. Claire’s death had a huge impact on my life, and it led to my involvement with Melanoma UK

Unfortunately, Claire’s melanoma had spread to her brain and due to severe swelling on her brain she died within two weeks. I was there all through her melanoma journey and I was there when she died. I like to think she chose her moment and I take comfort knowing Claire died with me holding her hand. Claire’s death had a huge impact on my life, and it led to my involvement with Melanoma UK. For several years, I was an active fundraiser for this amazing charity, but then it became clear I needed to do more to help this small but mighty team. I have been running my own consultancy business since 2008 and decided the best way I could help Melanoma UK would be to put my business knowledge to use. I know it sounds cliché, but I have always wanted to be able to do more for charity and I have cer tainly done that with Melanoma UK, a charity close to my hear t. I am now the Corporate Par tnership Director and I am responsible for several UK and global projects. I have held this role for the last four years and I could not be prouder. Everything I do is in Claire’s memory – she is my inspiration every day. Claire was diagnosed late 2012 and died in December 2013 – she was 38 years old and left behind two young children. My diagnosis After Claire died and with all the family history, I became a lot more aware about checking my own body for ‘dodgy’ moles or lesions. Originally, I went to see my GP about three moles, but I was told they were nothing to worry about – how many times do patients hear that familiar saying? My GP was aware of my history and family history of skin cancer, however I felt at this appointment he was not fully understanding my concerns enough to warrant a closer examination. Anyone who knows me, knows I can be quite assertive when needed, and this was one of those times. Although

I have no medical training, I guess my role with Melanoma UK gives me a lot more confidence when talking about skin cancer and if in doubt, get checked out. During the appointment there was no mention of how to carry out a skin self-examination and how to monitor any moles/lesions I may have now or in the future. I asked to be referred to see a skin cancer specialist at one of the local hospitals. Thankfully I was referred for specialist opinion at Broadgreen Hospital. The team at Broadgreen were amazing. Two of the three moles I had been worried about turned out to be nothing, but a number of other moles were highlighted as high risk and needed to be removed. Since my initial diagnosis, I have had numerous non-melanoma skin lesions removed from various parts of my body, including legs, stomach, chest, back, arm and buttocks. Lockdown diagnosis During skin cancer awareness month last May, I found a small lump on my nostril. Initially, I didn’t think anything of it but over the course of the next six months it seemed to be getting slightly bigger. I am a bit of a tech geek so use apps for everything. I use the SkinVision app every month to monitor my moles and lesions, so I have a record of images for peace of mind but also photographic evidence if I need to show my GP. In November 2020 when I took a photo of the lesion on my nose, it told me to seek advice. I knew something wasn’t right, so I thought I best get it checked out. Although I knew it was difficult to see my GP due to the pandemic, they were great, told me send over some photos, and then asked me to come in and see the doctor. When I called to book the appointment, I specifically asked to see a GP specialising in skin. I knew we had at least one in clinic, and I was told that would not be a problem. When I got to the surgery, I was told that the doctor did not want to see me in her clinic due to the pandemic. I thought this odd and wondered how the doctor was going to make a skin cancer diagnosis without

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seeing me or using a dermatoscope. The receptionist led me through the fire exit to the back of the surgery and told me the doctor would hold my appointment through a window! I was really shocked at this… how was this going to work? The GP asked me what the problem was and then I realised that she was going to try and make a diagnosis and give me her medical opinion through a pane of glass. I explained my findings. Surprisingly enough she could not see anything on my nose. She told me to come closer to the window and by this point I had got my nostril inches away from the window so she could see the lesion. She informed me that she didn’t think it was anything to worry about, until I explained my family’s history with skin cancer.

a BCC. The registrar told me it was a ‘very cheeky BCC’ and I was applauded at finding it early because it was so small. Because the lesion is on my nose, I was referred to Whiston Hospital to see a plastic surgeon. It was confirmed that my BCC is 4mm in size and although this may not seem like much, the surgeon told me he needs to cut another 4mm around the lesion taking a skin graft from my neck. I have so many scars on my body from the removal of other skin cancer lesions, but I can cover them up with clothes. Knowing I have this lesion on my face is completely different. Even if others cannot see it, I know it is there and it has made me a little self-conscious, so the sooner I have it removed the better because then I will know what level of scarring I am dealing with. At the time of writing, I am waiting for my appointment for the operation.

Conclusion The words I hear so often, that “it’s only skin cancer, they can just cut it out” need to be seriously reconsidered. This is because even when they do cut it out it, it is not as straightforward as everyone seems to think, and the psychological impact never goes away. I don’t know what the future will hold for me, but I do know that the initial damage was done when I was younger – that’s why I am urging everyone to carry out regular skin checks, and for parliamentarians to do more to improve awareness of melanoma and non-melanoma skin cancers and ensure that others do not have to endure similar experiences. The damage is probably done for people my age and my message is clear – get to know your skin. If you see something that doesn’t look right, get it checked out. Use SPF every day, stay away from sunbeds, and if you feel better with a tan then get it out of a bottle! DN

I was given an urgent referral to Broadgreen and was told that it was

Support for melanoma patients and the community

SkinVision offer

Melanoma UK offers lots of support and help for patients, including:  How Melanoma UK represents the melanoma community (https://www. melanomauk.org.uk/Pages/Category/how-we-represent-you)  Skin self-examinations (https://www.melanomauk.org.uk/Pages/Category/skin- check)  ABCDE Rule (https://www.melanomauk.org.uk/the-abcde-rule)  Skin Self Exam Video (https://www.melanomauk.org.uk/skin-self-examination- video)  Smart Home Speaker skin check (Alexa & Google: https://www.melanomauk. org.uk/skin-check-via-your-smart-home-speaker)  Skin Check Cards (https://www.melanomauk.org.uk/shop/melanoma-uk-skin- check-cards)  SkinVision app FREE offer to melanoma patients (https://www.melanomauk. org.uk/perform-a-self-check-on-your-smartphone)  On The Spot – webinars with the medics: https://www.melanomauk.org.uk/ news/melanoma-uk-launches-a-new-series-of-medical-webinars  My Melanoma App for patients: https://www.melanomauk.org.uk/the-patients- voice-digitally

Melanoma UK is currently working with SkinVision, which will see an investment of funds to help educate Healthcare professionals. To this end, Melanoma UK and SkinVision have 50 licenses, wor th £50 each, to give away to BDNG members. The first 50 people to email [email protected] quoting SkinVision will receive the App for free. Fur thermore, BDNG members are encouraged to refer any melanoma patients to Diane Cannon at Diane.Cannon@ melanomaUK.org.uk as they may be eligible for a free SkinVision licence.

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