Jonathan’s Story

During September 2020 Jonathan was diagnosed with stage 2 ano-uro-genital mucosal melanoma, a rare form of melanoma and in November 2020, he underwent his first surgery to remove this. Unfortunately, the cancer had not been fully removed with clear margins and the operation had to be repeated. Jonathan has a rare mucosal melanoma which has further spread, and additional surgeries and treatments have continued, and he is now looking into alternative treatment options. Here he has very kindly shared his story with us:

The crazy thing in all of this is I’ve never felt unwell. I love running, cycling and swimming all of which I’ve done, and still do, regularly. If you’d have said to me four years ago that you can have stage 4 cancer without ever experiencing a symptom, I’d never have believed you.

My cancer story started in March 2020, just as lockdown kicked in. I noticed a mole I’d had since childhood had started to change shape, consistency and occasionally come to a head, a bit like a spot. I visited my GP who sent me away with some anti-fungal cream to try. Obviously, the world then took a completely unexpected turn, and we all went into lockdown due to the Covid-19 pandemic, no one visited their GP or even a hospital unless it was an absolute emergency, or you had Covid.

“We were still parents to two young children; we still had to turn around and do the school run, get back for work, take the children to their clubs, walk the dog etc; the world carries on even though it feels like yours has been brought to an abrupt halt.”

September 2020 saw the world open up slightly and with no improvement to the area, I made another visit to my GP. The next three months were a whirlwind, from the GPs concerned looks, a referral to a local urologist, a biopsy within a week and a confirmed cancer diagnosis whilst in an appointment alone as we were still in the heights of Covid, and no one was permitted to accompany me. I remember barely being able to feel my legs as I walked back to where Rebecca was waiting for me in the car and telling her I’d just been diagnosed with cancer. We both sat in the car and cried, I’d just celebrated my 45th birthday. As with our entire cancer journey though in that moment everything changed but at the same time nothing did. We were still parents to two young children; we still had to turn around and do the school run, get back for work, take the children to their clubs, walk the dog etc; the world carries on even though it feels like yours has been brought to an abrupt halt.

We were then quickly referred to a specialist urology department and our first appointment with the consultant confirmed a diagnosis of stage 2 ano-uro-genital mucosal melanoma and they wanted to operate immediately. Mucosal melanoma is an extremely rare form of melanoma representing only about 1-2% of all melanomas. It forms in the mucus layers under the skins surface, it generally has a poor prognosis as it normally presents late, when it has spread to other parts of the body. I was very lucky that I had spotted it at its primary site, and not when it had spread to other parts of the body.

November 2020 was my first time in surgery, Rebecca dropped me first thing and, due to Covid, wasn’t allowed to accompany me or visit whilst I was in hospital. I had a 6-hour operation to remove the cancer and my surgeon was confident he had removed it completely. Recovery wasn’t easy, dealing with drains, injections and other post op paraphernalia at home in Covid times. It was hard but we got through it.

“So, on the 17th of December just as we were preparing for Christmas with our five and seven year olds, I went back for my second surgery.”

Three weeks later the call came, the first of our many huge dips on this emotional rollercoaster of a cancer journey. The lab reported that the cancer had not been fully removed with clear margins and the operation would have to be repeated. To say I was devastated is an understatement but as with all of this, what choice did I have? leave the cancer there to grow or go through the operation and recovery again to potentially see myself NED (no evidence of disease) for the time being. So, on the 17th of December just as we were preparing for Christmas with our five and seven year olds, I went back for my second surgery. Christmas was a blur, we weren’t allowed to mix anyway but being in a post operative state feeling unwell seemed to only heighten how much we really were on our own with all of this.

January 2021 and the post operative reports showed the cancer had been removed with clear margins and now a monitoring plan would be put in place for me to have regular scans every 3 months to spot any reoccurrence as soon as possible.

Life carried on as normal, in fact the quarterly trip to London for my scans became a bit of an inconvenience as they were always clear and despite the regular scanxiety I experienced leading up to the scans everything was back to a sense of normality. That was, of course, until it wasn’t. Just as we were preparing for an extended family holiday to celebrate a year of me being NED, in May 2022 my scans had the results we never wanted to hear. They spotted something a little abnormal in my groin lymph nodes which they wanted to investigate it further by biopsying one of them. Within a week I had a lymph node removed and unfortunately, it showed positive for mucosal melanoma. We cancelled the holiday.

We sat down with my consultant who explained that now my cancer had spread beyond the primary site and was no longer purely a urology concern and we would need to be referred onto specialists in mucosal melanoma.

“Sudden talk of tumour mutations, immunotherapies, more surgery and another reinforcement of just how rare this cancer was.”

Our first appointment saw us in a room full of cancer specialists and a waiting room full of cancer patients. Up until that point Covid had kept us in very sparse waiting rooms with one-on-one appointments and this was a massive and pretty scary change for us. Sudden talk of tumour mutations, immunotherapies, more surgery and further reinforcement of just how rare this cancer was and how there are few protocols to follow due to lack of data and experience.

My oncologist explained the plan was to remove all the left-hand side groin lymph nodes and then follow up with a course of adjuvant immunotherapy, a belt and braces approach to getting rid of the cancer and doing our best (with the immunotherapy) to ensure it didn’t reoccur. My lymph nodes were removed within 6 weeks, 3 out of the 13 proved to be cancerous but we were ahead of the game and felt reassured that there was a plan in place to stop reoccurrence.

My immunotherapy started in June 2022 and our first day was tough. All of a sudden, we faced the reality of what cancer looked like, up until now we’d been ‘protected’ from that. It was a shock for both of us seeing people with the kind of visible signs of cancer you see in every stereotypical cancer scene on the TV or in a movie. It was there in our faces and incredibly real, we were both very emotional that day.

“You soon realise though that you really aren’t alone in this horrible journey.”

You soon realise though that you really aren’t alone in this horrible journey. Just talking to those people on that ward week in week out and hearing of peoples amazing life stories and experiences is truly humbling.

The day unit became our regular 6 weekly haunt and apart from the treatment killing my thyroid (very common side effect) I experienced very little else. Life continued as normal with my quarterly scan consistently coming back all clear. Until they didn’t.

Cycle 8 of 9 immunotherapy infusions and it’s late April 2023. We got the call just before school pick up time on a Friday afternoon, the consultant was very clear, unfortunately we’ve spotted a tumour on your lung and will need to stop your immunotherapy as it’s having no effect. We don’t have any treatment options left open to you in the UK currently unless we can get you onto a clinical trial. Your tumour is not large enough to qualify you for a place on the one trial available for mucosal melanoma patients, so what seemed like pretty counter intuitive to us, the advice was we need you to leave things for 6 weeks and see if the tumour is then large enough for you to enter the trial. If it’s not or you don’t qualify then we’re looking at symptom control. There it was, blunt as anything, we were desperately running out of options and time.

We went on holiday and then we got married, well what else do you do with 6 weeks before you are potentially too ill through treatment or the cancer itself to do those things and we forgot, very briefly, about hospitals, cancer and what lay ahead and took time to focus on love and family.

Late June 2023 and we’re back in the hospital with the news we wanted but never wanted to hear, your tumour has grown sufficiently to qualify you for the clinical trial. I started on the trial in early July, whole weeks at a time on the ward with the children in tow as it’s school holidays. This trial had some awful side effects, it was a race to get home every night before the rigors and fever or chills set in. Again, though what was the alternative? There wasn’t one, the goal of the trial written in black and white on my notes was palliative care, that’s not a goal that’s managing decline into death surely.

I managed three cycles on the trial when it was confirmed after the next quarterly scan that the drug was having no affect whatsoever and I would therefore be removed from the trial. Another massive dip on the rollercoaster. There was however a small glimmer of hope in that as it was still the only tumour in situ there was a possibility that surgery may be an option. Mucosal melanoma spreads with a scattergun approach, if its spread to one place then you can put your hat on it being in multiple places just waiting to glow up on a scan hence why the standard treatment is an intravenous one rather than a surgical one to hit all those places at once. Conventional cancer treatments like chemo or radiotherapy have proven to have very little effect on mucosal melanoma. The oncologist was confident though that as my tumour had stayed in one place now for over 6 months and no others had appeared that surgery may be an option.

September 2023 saw our first meeting with the gastrointestinal surgeon. He’s confident he can perform the surgery, even though it’s never been done before but he has a plan and believes he can perform the operation using a robot (https://youtu.be/IMxS-1hOWVI?si=bdP_M-0u4B3HfYGQ). The surgery was then scheduled for November which was performed without complications. After an anticipated hospital stay of around 10 days, I’m lucky enough to make an amazing recovery and I’m out within five. The goal with the surgery was to fully remove the tumour, which is now confirmed to be under my lung, attached to my oesophagus and heart to buy me more time, my oncologist mutes that’s hopefully 12-18 months before we see anything else show up on a scan. We in fact only get 6 weeks. My quarterly scan in January 2024 shows three new areas that need further investigation.

Further investigation confirmed all three sites were further spread of the disease. What now? The oncologist advised we can try a dual drug immunotherapy that has been muted before but dismissed as I’ve already been treated with one of the drugs on my first immunotherapy and that didn’t work. This however is my only treatment left available in the UK. The odds of this treatment working on someone who hasn’t previously received one of the drugs are around 30%. No one knows the answer to the odds for someone who’s already shown one of the drugs doesn’t work on them, but the assumption is significantly lower.

I started the dual drug immunotherapy treatment in mid February 2024. In the meantime, the tumours have been growing and spreading, the largest grew 4cm in four weeks and a new one appeared near my heart with new widespread sub cutaneous growth too. It’s aggressive that’s for sure. I managed to have 3 rounds of ipilimumab and nivolumab, then had to stop treatment due to severe side effects, mainly colitis. Due to the side-effects, my consultant decided to not give me any more immunotherapy, and I will continue with scans every 3 months. Recently, my brain MRI was all clear and my full body PET CT showed a reduction in my tumours. Meanwhile we’ve been looking at private alternatives available outside the UK. Tumour-infiltrating lymphocyte therapy (TILs) have been proven to work in other mucosal melanoma patients. Unfortunately, not currently available in the UK but it’s just received FDA approval in the US.

Jonathan’s surgery and the story surrounding it will be featured on the second series of CH4 Super Surgeons a chance at life (https://www.channel4.com/programmes/super-surgeons-a-chance-at-life) due to be aired in Summer 2024