Ben’s Story

During 2023, Ben noticed that a mole on his neck with no pigment began to change and started bleeding. After visiting his GP and getting the mole removed, in June 2023 Ben was diagnosed with stage 2B nodular, amelanotic melanoma aged 39. He has since completed one-year cycle of immunotherapy and has had MRI and CT scans every 12 weeks. In May 2024 Ben arranged for Tower 42 to be lit up, raising melanoma awareness across London. Here he very kindly shares his personal story.

Where to start!

It has been, and remains, a rollercoaster journey.

“I hadn’t been anywhere near the GP for years and typically take the ‘ignore and hope it gets better’ approach to ailments!’”

 I am married to Laura and we have 2 young girls, Bella 5 and Tilly 3 (4&2 when diagnosed)

My story started with a mole which had begun to bleed. Until that point, it hadn’t caused any problems and didn’t look abnormal. I had assumed that one of the children had caught it however when it didn’t heal, I went to the GP. I’m not sure what motivated me to make the call, but something did – I hadn’t been anywhere near the GP for years and typically take the ‘ignore and hope it gets better’ approach to ailments!’

Thankfully, although the GP was not overly concerned, he said it was best to follow up and referred me to dermatology.

Again, no concern at dermatology and the general sense was ‘we don’t know what it is, but chance of a BCC so let’s cut if off and find out’. Even the surgeon who eventually removed it said don’t worry, you’ll just get a letter in a few weeks if it does turn out to be a BCC, but it’s not much to worry about.

 “I think this could count as a typical ‘male reaction’ but despite it, I was very scared.”

I was asked to attend in person for my results, however, was reassured this was standard and didn’t need to bring anyone. However, I was given the (incorrect) news that I had stage 3 melanoma – tricky news to absorb, especially on my own.

I remember being very clear in the appointment, asking questions and no real emotions – however I left the room an instantly cried in the corridor, I couldn’t stop myself. I managed to make it out the hospital, trying to avoid eye contact and rang my wife – downplaying everything as best as I could. I think this could count as a typical ‘male reaction’ but despite it, I was very scared.

Later that day I had emergency CT and MRI scans as there had been some cancellations at my local hospital. Well, the MRI had a space, but I was then able to persuade the CT to scan me whilst I was there and had a canula!

The next few days were a mix of Google, private health insurance calls, telling close family and a couple of friends, rescheduling work commitments and so on. It was also very hard knowing that there would be scan results soon!

Google quickly told me the odds were against me. Mainly because of my tendency to understand the worst case – you look until you find it. Of course, I was looking at outdated stats, from other countries and so on but that’s what you do at the time.

“Google certainly didn’t help me or Laura. It’s easy to forget that a cancer diagnosis impacts more than just the patient – and in my view, my diagnosis was, and is, just as hard for Laura as for me.”

 (Thankfully, I was eventually signposted to Melanoma Focus when I met my oncologist in October. It’s the only place I would look for to help me understand my diagnosis and I’m very grateful to it.)

“My oncologist was excellent and put us at ease right away.”

There was a very long wait for a WLE in my NHS trust, however being self-employed I had opted to take out private medical insurance several years ago. I was able to get an appointment with a leading surgical oncologist and melanoma expert.

They met with me and reviewed my scans – confirmed all clear – and explained the next steps. They also decided to involve another surgeon.

My surgery was completed with a skin flap technique and successfully completed the SLNB nearby.

It was my first general anesthetic however it went better than I hoped, and I was allowed home that evening.

I healed well and my treatment moved onto oncology and discussing adjuvant options.

My oncologist was excellent and put us at ease right away. She explained the risks and how I would be a candidate for adjuvant therapy given the high-risk nature of the tumour. All risk and side effects were considered, and we decided that throwing everything at this was the only option, despite the risk of  side effects.

Alongside the 6-weekly immunotherapy infusions, the rest of my treatment would include MRI and CT every 3 months for the next 12-18 months – hopefully to be reduced to 6 monthly after that, blood tests every 6 weeks, dermatology every 3 months, mole mapping, and of course oncology appointments every 6 weeks.

Being relatively young and with very young children, there was no question of not taking all available treatment. Immunotherapy comes with the longest list of side effects, and we joked it should just say ‘everything and anything’ could happen! However, my oncologist was great at detailing which risks were greater and what could be done to help if I did suffer any, such as pauses or steroids.

As it had been 3 months since my first scans, another set of scans were ordered and they triggered another anxious wait for results.

I started pembrolizumab in November 2023, with my first session being private before my insurer required my care was moved to the NHS. There is a little-known clause about new targeted cancer therapies meaning they aren’t covered if the NHS will pay. However, as long as I was getting the treatment, that was all that mattered to us.

I had a slight reaction to the pembrolizumab which was dealt with by giving antihistamines ahead of each treatment as a pre-med.

Luckily, other side effects have been minor – but include tiredness, brain fog and irritability. All manageable.

“Perhaps like a typical man, I dismissed it as unnecessary. Boy was I wrong!”

 However, there have been a few bumps along the way:

In February 2024 my eye went red on one side; however, it wasn’t an infection. The symptoms helpline sent me to the GP, who then sent me to the eye hospital A&E.

Lots of tests and pictures and a few hours later we were none the wiser. However, all common eye problems had been rules out.

Over the next 3 months I went back for further test and scans, with the view that there was a raised area on the white of my eye which could be a spread, although unlikley.

It was eventually decided to remove the lump through surgery and check.

This was the most awful thing I have ever had done! Being awake whilst part of your eye is removed is not pleasant. I should have realised that there was a reason the hospital had a volunteer to hold my hand, and perhaps like a typical man, I dismissed it as unnecessary. Boy was I wrong!

Anyway, an anxious wait for results finally came to end after 6 weeks and I was told that there was no melanoma cells present and that I could keep my eye! Much relief all round – although I may be left with a permanent scar. As to whether the inflammation was a side effect – ‘maybe’ said one consultant…

I have been hospitalised 3 times since starting pembrolizumab. Each for a temperature and feeling very unwell – which has resulted in being pumped with IV antibiotics and kept in for observations under sepsis risks.

There was one bit of fortune from the never-ending tests – and that was that my base line ECG picked up a congenital heart problem! So, a few visits to a cardiologist and some follow up scans show I have an extra pathway which ‘could’ be dangerous however hopefully not yet… This is now parked until after immunotherapy whereby I will need a heart procedure (ablation) to correct. The cardiologist said best not to do anything invasive with my heart whilst on pembrolizumab treamtent.

Whilst it is very reassuring to be looked after, it felt unnecessary to be in hospital for so long – 4 nights the first time, 1 night the last time – and left me with a sense that a different option is needed for immunotherapy patients verses chemotherapy patients. The drugs do very different things, so why treat us the same in A&E – there were no signs of bacterial infections despite being pumped with very strong antibiotics (which may impact efficacy of immunotherapy, as some research suggest).

Experiencing the Melanoma Patient Conference in February was very impactful. Whilst uplifting and informative, the reality of how nasty this disease can be really hits home.

“The misconception that ‘its only skin cancer’ is something that most patients have to endure far to regularly.”

After the conference I hatched the plan to light up Tower 42 for Melanoma Awareness month. I felt putting a symbol up to raise awareness was so important but not only that, also to recognise all those people dealing with this disease. Being seen is so important – and the misconception that ‘its only skin cancer’ is something that most patients have to endure far too regularly. I was very honoured and proud to do something, and it helped my mental health.

You can find out more about Ben’s amazing awareness work, here.

Whilst I am very happy sharing all the details of tests, treatments, operations and so on there is an area that I have been less inclined to talk about. The impact on my mental health and general mood. The honest answer here is that I haven’t dealt with this yet. Instead, I have been busy. Busy working, busy being a dad, a husband, a patient, busy with anything really. The sheer volume of appointments (now over 100!) has always given me something to focus on. But deep down I am aware I’m not 100% – far from it. I’ve been able to communicate this with Laura, but not really with anyone else. Again, is this the male tendency to not show weakness? Or simply that I’m not ready yet? I don’t know when I will seek help, despite encouragement, and it remains on the to-do list….

For information about  mental health support, please visit our Mental Health and Melanoma page.

“With the children so young, there has been no need to explain anything other than ‘daddy has a poorly neck’ – but they know to wear their suncream!”

 

The journey has not ended, however for now I feel lucky to be on the right side of it – it’s the best it could be following my diagnosis. My scans have all remained clear and I am getting better at dealing with the wait in between. My last planned pembrolizumab is on 31^st Oct, which feels strange, but I think generally good. With the children so young, there has been no need to explain anything other than ‘daddy has a poorly neck’ – but they know to wear their suncream!

My key piece of advice for other melanoma patients is ensure you have a good support network. Talking helps.

 Why is Melanoma Focus important to you?

The resource is incredible and very helpful. Staying off Google, and looking up questions on the website has been massively beneficial. I’ve not used the Melanoma Helpline  but I think it’s a great thing they do in providing one.

The Melanoma Patient Conference was also very important to me. It provided some great information, lots of details about the future of treatment alongside practical ways to manage treatments. Hearing from inspiring patients is so moving and so special, and the general sense of community and not being alone was a key takeaway.

Learning about the work with the Melanoma TrialFinder , as well as all the work they do for melanoma healthcare professionals is also very impressive and so important to us as patients.