Vulva Melanoma Cancer (and what that even means)

Tuesday, January 2, 2018

This post contains the words vulva and vagina. There is no reason to be offended or embarrassed by these words. This post is serious in nature and details my experience with vulva cancer so far. You might find this to be 'too much information' but I strongly believe that woman's health needs to be discussed without stigma.

I sit here perplexed. Over the past 10 years I've written about so many health-related topics but I honestly never thought I'd ever be writing about my own cancer diagnosis. 

I guess that no one thinks that it will happen to them, but I never thought that it would happen to me for a few reasons:

  1. I have full-scope blood tests every 12 months to make sure that my health is in check (I'm the only person I know who takes their 6 & 12 month doctors check up's seriously)
  2. I know my body, I know how it's supposed to work and I know immediately when something is wrong. Nothing ever felt wrong.
  3. I live my life free of carcinogens. I've never smoked, I don't drink, there are no chemicals in my house and I balance my diet with nourishing, plant based foods.

So when I went to the doctor in mid-2016 after finding a small lump I wasn't surprised when I was told that it was just a skin infection from a small cut. My health was great, I had no symptoms of anything else. In October 2017, after over a year of treating this 'skin infection', I asked to be referred to a gynaecologist who took a biopsy. It was a melanoma, it was aggressive and everything would be different from this moment on.

How does a woman get a melanoma on her vulva? Well here's the kicker, no one knows. When we think of melanomas we immediately blame the sun. Turns out that while most melanomas are caused by the sun, there is a tiny percentage that are created from within the body and pop up in unlikely places, usually places that have never seen the sun. I asked my surgeon how this happened to me and he said 'pure bad luck, it's not supposed to happen'. Not only is a body-grown melanoma incredibly rare, but it's almost unheard of in someone my age (29). The average age that these melanomas appear on women is between the ages of 55-80.

I had surgery the day after my diagnosis to remove the cancer and presumably enough tissue around the site. The following weeks involved a lot of scans, a lot of being poked with biopsy needles, and a lot of sitting in hospital waiting rooms.

Three weeks later I was told that the cancer had spread to the lymph nodes in my groin and that there were also cancer cells on my thyroid. This might sound awful, but it was the biggest relief I'd ever felt in my life. This type of cancer doesn't just linger in one site, it travels quickly and loves to attack organs. The cancer cells had been feeding off my body for a year and a half, a likely outcome was that it had travelled through tissue and organs, nesting itself wherever it could. But it hadn't behaved like other melanomas. It had travelled, it had spread, but it was completely removable by surgery.

Five weeks later I was back on the operating table having more tissue taken from the original site to widen the margins, the lymph nodes in my left groin removed and the left side of my thyroid removed.

It's been three weeks since my last surgery and I'm now cancer-free. 

Recovery is long and remission is permanent. I'll be having regular scans for the rest of my life so that if it comes back, as melanomas like to do, we will catch it early.

This cancer is incredibly dangerous and it has a high mortality rate but that's only because no one knows to look for it. It's so uncommon that your doctor might not have even heard of it. The average time it takes for vulva melanoma to be diagnosed is 2 years for two reasons; it's commonly misdiagnosed as something other than cancer and women are too embarrassed to tell their doctor that something isn't right on their vulva or in their vagina.

I went back and forth on whether I would actually write this post and how much I really wanted to share online. The ultimate deciding factor in talking about this is because when I was diagnosed and I jumped online trying to find out more, the pieces of information was few and far between. Stories from other women who've also had this cancer were non-existent. This is incredibly isolating. It also means that you, as a reader, may not even be aware that this type of cancer is something that could happen to you. 

If it can happen to me, it can happen to you. I want to make sure that you are pro-active in your health. Here's my call to you, grab a mirror and have a poke around. Learn your body. Lumps and bumps are common but you need to know what is normal for you. If anything doesn't seem quite right, tell your doctor. When you have your regular pap smear, ask your doctor to do a thorough check of your vulva and vagina to make sure everything looks normal. Do self exams and do them regularly.

The next thing you can do is talk to your friends. Tell them that you heard about this girl who found a melanoma on her vulva, send them this article, start the conversation and spread the word. We talk so openly about breast cancer, let's not shy away from vulva and vagina cancers.

If you'd like to stay updated on my progress or ask any questions, you can comment below, find me on Instagram and Twitter at @ohrebeccalife or send an email to

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