I always try to face the tough stuff in life with optimism, so when I was diagnosed I thought “Cor, this is going to be a weird old adventure”. And so began my new role as a kind of strange explorer. But the type who sets out ill-prepared, still naive about what’s to come. And in my case it meant navigating the choppy and uncharted territory of small cell carcinoma of the ovary (hypercalcemic type).
The type of tumour I had wasn’t just rare, but it also normally affects younger women: the average age at diagnosis is 24 years old. My hospital had only ever treated one case before mine, 10 years earlier. So when I desperately searched around for other ovarian cancer ‘explorers’, most hadn’t heard of my type of tumour and they were all a fair bit older than me. Most women I met at groups had already had their families, fulfilled career plans and gone through the menopause, so I felt like we weren’t always facing the same challenges. It felt very lonely.
Rare cancers can often go hand in hand with words you never really want to hear coming out of the mouths of your oncology team. “Poor prognosis”, “Experimental treatment”, “No standard practice”, “We don’t really know”, or the dreaded “We’ve never actually tried this before”.
So I felt a bit like I was out in the wilderness – carving a path of my own and trying to find any footsteps that had gone before me. I desperately needed some kind of guide, some tips from others who had tried to tackle this before.
One day I discovered I wasn’t out there on my own. God bless the internet.
Tucked away in a far-flung corner of the web was a forum. There I found a group of women dotted all over the world, sharing and swapping their treatment tips, experiences and helpful medical contacts.
I discovered others like me who had tried the surgery, the chemo and some of the other first line treatments that hadn’t been fruitful. They shared other treatment ideas that proved critical for me during some dark times. I found a global drug trial that I qualified for. And when that sadly didn’t work as hoped, I followed other advice about immunotherapy and radiotherapy that proved to be crucial in saving my life.
I approached my oncology team with the idea of immunotherapy. Because we were out of other options at this point, it seemed like it was a viable last resort for me, and they agreed to go ahead with it. And at this point in my journey I was really starting to go downhill, so it was now or never.
I was lucky that the particular immunotherapy drug that I needed was a popular one: often used for melanoma cases and lung cancers. As it wasn’t standard practice to use to treat ovarian cancer, though, it wasn’t available to me on the NHS. Private medical cover also wouldn’t cover it because it was deemed ‘too experimental’. This is the conundrum with rare cancers – where there’s no standard practice there’s often fewer options overall.
So, I had to fundraise. This meant doing a very uncomfortable thing, asking for donations in order to cover the hundreds of thousands that the treatment would likely cost.
I got incredibly lucky. My GoFundMe page attracted a lot of attention on Facebook and was shared around the internet. It made the 6 ‘clock news, and the story was covered in national newspapers. With the generosity of friends, family and complete strangers, I made all of the money I needed to get the treatment. Again I was reminded that I wasn’t on my own – there were lots of people out there, willing me onwards.
And here you find me, a slightly older and wiser explorer. The landscape I’m travelling through is now more familiar and well sign-posted. The immunotherapy and radiotherapy shrunk my tumours right down, and I’ve been in remission for over 5 years. I’m still coming to terms with some of the sacrifices I’ve had to make: losing my fertility means I’m learning how to navigate the menopause in my thirties. But I’ve learnt that although being diagnosed with a rare cancer can be very lonely at times – and it’s a little less straightforward – with perseverance you’ll find others out there who are facing similar challenges, and you’ll discover you aren’t alone.
My symptoms were like many of the ovarian cancer symptoms, and they flew under the radar. Bloating, weight loss, an unexplained lack of appetite and needing to wee more. I also kept having unexplained panic attacks. In the end I realised something wasn’t right, so I got it checked out. Most GPs will never see a case like mine walk into their practice, but luckily I had a thorough GP who didn’t dismiss my symptoms because of my age. My advice would be to anyone who thinks something isn’t right: be persistent and get yourself fully checked out if you think there’s something wrong. You only have one body and one life. So make sure you look after yourself.