It has taken me 3 years to come out about my diagnosis by Caroline Kohl

It has taken me three years to ‘come out’ about my vulval cancer diagnosis. I was 29 when I was diagnosed with a rare form of vulval cancer, mucosal melanoma, and in one year I had five operations to try and remove the primary tumour with clear margins. I had just started working at my dream job, and nobody – least of all me – expected that I would need time off work due to a shock cancer diagnosis. And what could I tell all my new colleagues?
I told a few people that I had skin cancer – specifically, melanoma – and I got some sympathy, but not a lot of understanding. A couple of people told me that as a redhead, I should have expected a melanoma diagnosis (though mucosal melanoma is unrelated to sun exposure). At the end of business meetings, someone would inevitably take me to one side and show me one of their moles. Did I think it looked suspicious? Did it look like mine?
None of these moles resembled what I’d had: a 4mm nodular growth that sat uncomfortably close to my clitoris.
Outside work, I tried a different tack. I told friends that I had a ‘gynae’ cancer, and I left the rest to their imaginations. Some found a new way to blame me. Had I developed this disease because I had an STI? I heard more than a few jokes about my sex life. I tried to take the high road.
Unfortunately, multiple wide local excisions could not ‘cure’ the disease. The post-surgery pathology results reported amelanotic (colourless, and invisible to the naked eye) melanoma that proved too challenging to detect and remove. I moved to a ‘watch and wait’ protocol, with regular gynaecology and dermatology visits, as well as routine body and brain scans managed by a melanoma oncologist.
I enjoyed a few months of clear scans before the mucosal melanoma appeared in one of my lungs. The disease had progressed from stage II to stage IV. I had multiple tumours and this meant that I couldn’t have surgery to remove them. Instead, I started immunotherapy treatment (ipilimumab and nivolumab) – the standard treatment for metastatic melanoma. This time I only told a handful of people. I kept working during treatment and tried to keep my life as normal as possible. Immunotherapy didn’t give me any visible side effects so I was able to stay under the radar – but of course this meant that I didn’t get much support.
Immunotherapy didn’t work. Melanoma doesn’t routinely respond to chemotherapy, so my next step was a targeted treatment on a clinical trial. There was no hope of curing the disease, but the trial drug was supposed to buy me six months of stability. I got married, went on a ridiculous number of holidays, and wrote my will. But the targeted treatment worked far better than anyone had anticipated – and as I write this, I’ve been taking the medication for 14 months and have had No Evidence of Disease (NED) for six months. For someone with incurable cancer, NED is as good as it gets.
Nobody knows how long the melanoma will continue to respond to treatment. I’ve been wary about talking openly about my disease because of its intimate nature, and more recently I’ve struggled with the irrational fear that by sharing my lucky response to treatment I’ll somehow ‘jinx’ its future success. Starting my blog felt like a huge decision.
I’m fortunate to have had access to phenomenal psychological support over the last three years, so I’ve never felt stuck for someone to talk to. As well as having a fantastic oncologist and trials nurse who always take the time to listen to my concerns, I have benefited from free therapy sessions at my local Maggie’s Centre. I can’t speak highly enough of therapy! It’s brilliant to have a non-judgemental, non-medical, sympathetic ear – and my therapist has helped me make sense of my diagnosis and my reactions to it.
One of the topics I have yet to cover on my own blog is sex. Sex wasn’t really discussed during my gynae oncology consultations, although I had multiple wide local excisions rather than an immediate vulvectomy because my surgeon was working hard to maintain my sexual function. They hadn’t expected me to need so many repeat excisions, and my final operation resulted in a partial vulvectomy. Although my surgeon told me that my ‘vulval architecture’ had been preserved, i.e. all the nerve endings were still there, I no longer recognized my own body. I was struggling to keep up with all the physiological changes that had taken place in a relatively short space of time.
Shortly after moving to ‘watch and wait’ (before I progressed to stage IV), I went on a retreat with the young adult cancer charity Shine Cancer Support. The long weekend (known as the ‘Great Escape’) involved a few discussions about sex after cancer, and I heard about psychosexual medicine for the first time. Why had nobody mentioned this to me before? It seemed as if I would almost certainly benefit from psychosexual therapy, but I was warned that there were relatively few practitioners out there – and if I wanted long-term support, I would probably have to pay.
I wasn’t sure that I could afford to pay privately for this type of therapy – but I decided to explore my options and see if I had enough savings to fund a course of treatment. I didn’t know about the College of Sexual and Relationship Therapists at the time, but I’d seen a lot of adverts at bus stops in my local area that offered support to survivors of female genital mutilation (FGM). I emailed the FGM clinic to ask if they could recommend a therapist for me to contact.
The FGM clinic sent my email straight to a psychosexual therapist in the NHS – as it turned out, the only person practising this specialty in my area – and two weeks later I started treatment via my local Sexual Health Service. I didn’t have to pay.
I had multiple appointments over a period of two years, and as part of my therapy I was also referred to a trauma specialist who helped me to manage the PTSD symptoms I’d developed as a result of cancer treatment. My husband attended many sessions with me and we’ve been able to work on our relationship and explore the impact of my diagnosis together. Psychosexual therapy returned a sense of normalcy to our lives, and later gave me the confidence to start sharing more of my experiences with others.
I found it very challenging to speak up about my diagnosis and the impact it has had on my mental health, but doing so has paid dividends.