A cancer counsellor is urging women to get any unusual symptoms checked by a doctor after her own diagnosis of a rare terminal cancer was initially dismissed as menopause. Jo Shaw Pyke, 48, from South Shields, Tyne and Wear, endured 18 months of itching and pain around her genitals, symptoms which doctors attributed to menopause. However, in December 2023, Jo was horrified to discover she had an 8cm tumour on her vulva and was diagnosed with vulvar mucosal melanoma, an ultra-rare and aggressive form of cancer.
Jo, who had just tied the knot in autumn 2022, was supposed to be enjoying her honeymoon period but found herself battling an illness she had never even heard of, despite her 13 years of experience working as a cancer counsellor. Vulvar mucosal melanoma is a rare disease that develops in mucous membranes such as those in the mouth, throat, or genital areas, and accounts for only 1% of melanoma cases.
“There’s no cure for this type of cancer, and I had never come across it before,” Jo said. “I’ve seen thousands of clients with different cancers, but this one was new to me. It was like, ‘what am I dealing with here?’”
Despite surgery in January 2024 to remove the tumour, Jo’s cancer returned in June, and she is now undergoing immunotherapy, although the success rate for her condition is low. Jo’s friend, Karen Murray, has set up a GoFundMe page to raise money for Jo to receive potentially life-saving TIL (tumour-infiltrating lymphocyte) therapy abroad, as it is not readily available in the UK.
In her bid to raise awareness about vulvar mucosal melanoma and encourage people to be vigilant about their health, Jo has become an advocate, urging others to pay attention to their bodies and seek medical advice if something feels off.
If I can help just one person get checked and get the right diagnosis, then everything I’ve been through is worth it,” Jo said. I’ve had so many calls from female friends saying, ‘I have itchiness too.’ My advice is always: get it checked out.
Jo, who also runs a support group for people living with incurable diseases, remains hopeful that she can undergo TIL therapy and continue her work helping others navigate their own cancer journeys.
“It would mean the world to me if I could get the chance at TIL therapy, as I believe it could save my life. If I survive, my focus will be on helping other cancer patients and raising awareness about this devastating disease.”
Jo’s story serves as a powerful reminder for people to listen to their bodies and not dismiss unusual symptoms, particularly when they persist. For Jo, the diagnosis came too late to stop the spread of cancer, but her message of awareness could help others catch it earlier.
For those interested in supporting Jo’s journey, Karen’s fundraiser can be found on GoFundMe, with proceeds going towards funding her TIL therapy.
