After losing her mother at a young age to breast cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs, and even going through her own experience with it, Jane had always been vigilant in screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening and checking her own breasts for abnormalities but never thought to check anywhere else.
It wasn’t until one day in July 2022, when Jane started to experience discomfort and soreness “down there”. Initially she ignored it, but the pain intensified to the sensation of broken glass being smashed in between her legs and she knew she had to do something about it.
“I experienced fevers and pain while urinating, during intercourse and sometimes randomly for no reason at all,” Jane recalls.
“While feeling somewhat embarrassed, I decided I had to see my doctor about it, so I booked an appointment. She listened to my symptoms and determined that I was perimenopausal, she didn’t even look down there.
“I went on living in pain for six months before going back to her and insisting on a referral to see a Gynaecologist. She referred me and I went to the appointment, where again they did not even look! Instead, they gave me cognitive behavioural therapy for perimenopause and sent me on my way.
“I knew it wasn’t just perimenopause, so I bit the bullet, took out the mirror and looked down there myself. I remember looking and thinking “Oh my God”.
Jane saw two big lesions on the outer skin of her vagina that were raised, red and angry. Feeling panicked, Jane immediately went back to her GP and insisted she take a look down there to confirm what these lesions were.
“I remember afterwards she was frantically typing on her computer and said to me “you need to go to the hospital and see somebody about this now”.
“It took six months for me to get a diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results; it was just before Christmas in December of 2022. The specialists at the hospital saw me straight away. They were nothing like the medical professionals I’d encountered so far, they were kind, understanding and listened to my concerns. They took a biopsyremoval of a section of tissue to analyse for cancer cells and the results came back with a diagnosis of Stage 3 Vulvar cancer.
“What’s a vulva? Was my first thought. I had never heard of it before. My thoughts then went to the other word “cancer” which I knew about all too well.”
The next few months saw Jane undergo two surgeries to remove the lesions and surrounding tissuea group of cells that work together to perform a function. Unfortunately, further testing showed the cancer had also spread to her lymph nodessmall bean-shaped structures that filters harmful substances from lymph fluid, so she also had to go through six weeks of radiation and chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells.
“It was a very emotional time and took its toll on me both physically and mentally. I felt so vulnerable and had so many questions about whether things would still be able to function properly down there after all of this. I have a husband and two young children, so the impact of this was felt through the whole family.
“Thankfully I have recovered well, I started seeing a psychologist who has been wonderful, and now nearly 18 months later I am happy to say I am still doing well.
“But there’s a real stigma in our community, and amongst medical professionals, about going to get your vagina checked if something is wrong, which I find strange because we’re so good at getting our breasts checked.
“My experience was awful, I really had to fight to be taken seriously and advocate for myself, which was hard because I’m quite a shy person. But because I’ve had this happen to me, I feel like I need to speak up a lot more, so I’m pushing myself out of my comfort zone to create change and talk about things I wouldn’t have before.
“I want people, especially women, to know my story and learn from my experience. We have a vulva and it can get cancer, cancer that spreads!
“I even have a little wax candle that’s shaped like a vulva and I take it with me when talking about my cancer to show people what it looks like, because so many don’t know.
“If I had one message to leave with people, it would be to get to know your own body and to listen to it. If you feel like something’s wrong, go get it checked, because it could save your life.
Thursday 26 June is Rare Cancers Awareness Day. You can show your support for people affected by rare, less common and complex cancers by downloading an Aware of Rare Info Kit or taking our online pledge for rare.