A Sunshine Coast woman has revealed the frightening moment she was told she had a rare and aggressive cancer she had never even heard of.
Melissa White, 49, was just 43 when she was diagnosed with mucosal melanoma, a cancer that develops in the body’s mucous membranes, often in private or hidden areas.
Mucosal melanoma accounts for about one per cent of all melanoma cases in Australia and, unlike most melanomas, is not linked to sun exposure.
The cancer in Ms White’s pelvic area was discovered in June 2020 after her symptoms were initially mistaken for a benign condition.
“At that initial appointment I didn’t feel comfortable with the diagnosis, something about it felt unusual to me and I just had a sense that something wasn’t quite right,” Ms White said.
As time passed, the area changed rapidly, confirming her fears that something more serious was happening.
“My tumour started growing very aggressively in a short period of time,” she said.
Once further investigations were carried out, doctors confirmed the diagnosis.
“Hearing that diagnosis was incredibly frightening. I had never even heard of mucosal melanoma before,” she said.
Ms White said a professor specialising in gynaecological cancer surgery stressed the severity of the condition, warning “it would take me out if not removed urgently”.
“The way it was said felt very insensitive, but hearing those words was the moment the reality of being diagnosed with such an aggressive cancer truly sank in,” she said.
Ms White said her first symptom was a small area of discolouration that later became increasingly painful as the tumour grew.
“I believe the reasons why mucosal melanoma is often difficult to detect early is that the symptoms can appear quite minor or be mistaken for more common conditions,” she said.
“This type of melanoma occurs in mucosal areas of the body, which are often very private or hidden parts of the body, so there can also be an element of embarrassment in raising concerns about symptoms in these areas.”
Her treatment journey has been gruelling.
Since her diagnosis, Ms White has experienced four recurrences of the disease and undergone 14 surgeries, many requiring skin grafts and reconstructions.
“I’ve undergone weeks of radiation in an effort to stop the cancer,” she said.
“Those radiation treatments left me with third-degree burns, severe osteoporosis, lymphoedema, chronic pain and ongoing fatigue.”
She has also been told the cancer is likely to return and carries a genetic mutation that makes the disease even more aggressive.
The experience has motivated Ms White to speak out about the little-known disease.
“Many people – and even some medical professionals – have limited awareness of it,” she said.
In response, she created the Facebook page Mucosal Melanoma Australia to raise awareness, share information and provide a platform for patients and families to tell their stories.
Warning: some readers may find the image below disturbing
Her campaign also calls for increased research and earlier access to potentially life-saving treatments.
“In Australia, patients with mucosal melanoma are often required to wait until their cancer becomes more advanced before they are eligible for potentially life-saving drug treatments,” she said.
“If there is one message, I would want people to take away, it is to listen to your body and seek medical advice if something feels unusual or continues to change.
“It is also so important to advocate for yourself when it comes to your health. If something doesn’t feel right, trust your instincts and push for answers.”
For more information on mucosal melanoma visit Melanoma Patients Australia.
