Willie’s Story

After visiting the GP about a suspicious mole in 2015 Willie from Scotland was diagnosed with early stage melanoma. In 2019 this later progressed to stage 4 malignant melanoma. Here he has generously shared his story with us.

I have always had quite a few moles on my body including my face. I remember my Mum used to tell me to take care in the sun and to watch for any changes, but I was never too sure why. 

In summer 2014 I noticed that a mole on my side was looking a bit strange. It was difficult to see without contorting myself and so it remained out of sight and out of mind.  

Fast forward to spring 2015 and I spent a day hillwalking largely above the clouds and with sun reflecting off snow. I had sunscreen on. Days like these are my paradise. However, when I got back to my accommodation and was shaving in front of a large mirror, I heard a voice in my head. ‘You’re stupid to have allowed yourself to get sunburnt today, especially with all your moles’ I then twisted slightly so that I could see the suspect mole. It looked pretty ugly and certainly hadn’t gone away. 

I thought that it can’t be anything serious, it’s small, it’s painless, I feel perfectly well. Also, I kept looking at my diary at work and found it impossible to find time to take off to go to the doctor.

 

Over the next few weeks, I kept thinking that I should get the mole checked and then I thought that it can’t be anything serious, it’s small, it’s painless, I feel perfectly well. Also, I kept looking at my diary at work and found it impossible to find time to take off to go to the doctor. To make matters even worse, I was a bit frightened at the prospect of someone taking a scalpel to me and putting in a few stitches.

After many weeks, the sensible voice in my head won, and I made an appointment to see a GP. The result of that consultation a referral to the Dermatology Clinic at the hospital. I got an appointment through quite quickly.  

Still thinking that it can’t be anything serious, I went along to the Dermatology Clinic. Whilst sitting in the waiting room, I looked at posters about melanoma and started to think that this might well be what I have. I still didn’t realise just how serious it might be. 

The Dermatologist was really good. She took one look at the mole and said that it would need to be removed for biopsy. She told me that usually they make a further appointment for this but in my case, she wanted to have it done immediately. She explained a lot to me about melanoma and its treatment. A couple of hours later, with a numb area and several stitches but absolutely no pain. I wandered out to the car park minus the mole and went back to work. 

A few weeks later, the Dermatologist called me and confirmed that tests showed that this was melanoma and told me what would happen next. There would be a multidisciplinary meeting (MDT) where they would look at the results and come up with a course of action to discuss with me.  

So, my wife and I went to meet the consultant and you could not meet a kinder, more gentle and caring person. As far as I was aware, there was no history of cancer in my family and it wasn’t something that I had ever thought much about and certainly never expected to get cancer. I was booked in for a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB). 

I felt that this was all an adventure as I had never been in hospital before. The procedures went smoothly although I was very sick with the anesthetic. I can honestly say that I felt no pain at all. Once I was home, I thought great, that’s the end of it. 

A few weeks later, the phone rang. I answered it and immediately recognised the voice of the consultant. Melanoma had been found in the lymph node. He said that now he would recommend an axillary dissection to remove all the lymph nodes in my armpit (a complete lymph node dissection is now not routinely recommended except in specific situations). 

I took a while to compose myself to phone my wife and grown up children who are both doctors and knew more about the severity of this news than I did. Suddenly, this didn’t feel like an adventure anymore. It felt really serious. 

I returned to the Plastics Ward for the surgery and was greeted like an old friend by the wonderful nurses there. I hadn’t appreciated just how major the operation would be. It took several hours and I remained in hospital for nearly two weeks while a drain was in place. Again, I didn’t feel any pain at all. I was however, quite shocked at how disfiguring the surgery was. Even now, 7 years on I have what looks like a second armpit that’s big enough to hide two tennis balls. 

Once I got home, I had 12 weeks of recuperation until I started a phased return to work. It gave me plenty of time to reflect and the enormity of it all sunk in. I found myself quite emotional and rethinking my priorities in life. 

The following Spring I got a big surprise while I was in the garden. The sun came out and I could feel it on my face. Suddenly an overwhelming sense of panic gripped me and I had to go inside. It was my first experience of feeling anxious in the sun which is a very common problem for people who have been diagnosed with melanoma. It took several years to get that feeling under control and even now, on a sunny day I make sure that I have sunscreen on, reapply it frequently, wear a hat, long sleeves and trousers. 

It was my first experience of feeling anxious in the sun which is a very common problem for people who have been diagnosed with melanoma.

 

For the next 5 years, I had regular CT scans, skin checks and checks to make sure that I wasn’t developing lymphoedema. 4 years on and all seemed fine.  

I love being in the mountains and really focused on that in the coming years. One day I had a tumble and bashed my side in the vicinity of the surgery site. A few weeks later, I felt pain in that area, as if I had bumped into something. I put it down to the tumble and tried to put it out of my mind. Over the weeks it got worse until it was keeping me awake at night. I had a check up and mentioned this but CT scan and blood tests were all fine so we agreed to watch and wait. Eventually, I started to worry about it and could feel a slight lump. I called the Nurse Specialist who is always there to chat about any worries. She arranged to for me to see the consultant the following day. He said that an ultrasound scan would be the best way of investigating it and asked the nurse to book me in, I heard him whisper to her to mark it urgent. 

Things moved quickly. I had the scan and a sample was extracted by a needle. It was tested and it was further melanoma. This meant that I had stage 4 malignant melanoma. Just a few weeks later I had surgery to remove the lump. Then I met with an oncologist who recommended a year of adjuvant immunotherapy with nivolumab. Immunotherapy was a very new treatment but in trials had proved quite effective against melanoma. Until immunotherapy was developed, prospects for people with stage 4 melanoma were poor. However, immunotherapy can bring serious long term side effects. I discussed these with the consultant and a specialist nurse, also I read up as much as I could. I really didn’t like the sound of some of the side effects but concluded that if I didn’t take the treatment, melanoma might rear its ugly head again somewhere else like a lung or my brain. I might not be so lucky next time. 

So, every 4 weeks, I attended hospital for an afternoon where I got an infusion of immunotherapy. During the second dose (which was on the first day of the Covid 19 lockdown) I had an adverse reaction. From then onwards, I had to have additional drugs to prevent the reaction. This made me very drowsy for the rest of the day. Like many people on immunotherapy, I found my skin got really itchy and my joints really achy. 

Between the 4th and 5th treatment, I became very unwell and had to go into hospital for several days. My cortisol levels had plummeted and along with that, sodium and potassium levels too. I was diagnosed with adrenal insufficiency and told that I would have to take tablets to replace the cortisol 3 times a day for life and carry an emergency injection with me at all times. I will always remember the consultant endocrinologist telling me how important it was for me to take the medication regularly as prescribed. 

The treatment continued for another 6 months until I had to be rushed into hospital with my heart behaving erratically. After that, there was mutual agreement that I wouldn’t continue with the treatment. I was comfortable with that as the reactions that I had experienced were hopefully a positive sign that the treatment had done what it was meant to do and boosted my immune system to in turn find and kill off any cancer cells that might be lurking somewhere. 

It’s now a few years on. I still have regular CT scans and checkups with plastic surgery, oncology and endocrinology. The adrenal insufficiency is a bit of a challenge to manage especially as I have a very active lifestyle. However, I have absolutely no doubt that it’s a better option to the uncertainty and risk of melanoma reappearing. I still think about melanoma many times every single day. 

I am very aware that many very skilled and caring people have given me the best care and that the treatment that I have had was extremely expensive. 

 If only I had gone and got that odd looking mole checked when I first noticed it, the treatment could have been much simpler. If you see something odd or changing on your skin, go to your GP and get it checked out without delay.  

 

Willie has very recently completed the 100 Miles in May 2023 Challenge, raising vital awareness and funds for Melanoma Focus and Skcin. Willie decided to make this an even bigger challenge by walking his miles in routes that he had never walked before. In the end Willie walked 204 miles during May and completed 120 new walking routes! Whilst completing his miles Willie also became a grandad for the first time! A massive well done and congratulations, Willie!