A newlywed cancer counsellor, Jo Shaw Pyke, shared her harrowing experience of initially being misdiagnosed by doctors, who attributed her persistent itching and pain around her genitals to menopause. Despite their reassurances, Jo later discovered she had an ultra-rare terminal cancer called vulvar mucosal melanoma, a diagnosis she had never encountered during her 13 years working as a cancer counsellor. This revelation came after enduring 18 months of being dismissed by medical professionals, only to find an 8cm tumour on her vulva.
In December 2023, Jo received her diagnosis and began undergoing immunotherapy in a bid to manage the cancer, which has a low success rate. To explore potentially life-saving treatment options not readily available in the UK, a GoFundMe page was set up by her friend, Karen Murray, to raise funds for Jo’s TIL therapy abroad. This rare cancer affects mucous membranes and only makes up about 1% of melanoma cases, according to the Melanoma Research Alliance.
Following a hysterectomy in 2020 due to cervical cancer, Jo, from South Shields, Tyne and Wear, continued to experience concerning symptoms but was repeatedly told they were menopausal side effects. It wasn’t until a gynaecologist discovered an 8cm tumour on her vulva, which had spread to her lymph nodes, that she was formally diagnosed in December 2023. Despite surgery to remove the tumour, Jo faced complications and a subsequent metastasis was confirmed in June 2024.
With limited treatment options due to a wild-type BRAF gene, Jo relies on immunotherapy and remains optimistic despite the challenges. Her focus now includes raising awareness of mucosal melanoma, emphasising the importance of regular body checks, and supporting others through her own support group for people with incurable diseases. Through her journey, Jo hopes to inspire vigilance and proactive health initiatives in others to potentially save lives.
To support Jo on her treatment journey and mission to raise awareness, donations can be made via her GoFundMe page. Jo’s resilience, positive outlook, and commitment to helping others facing similar battles serve as a beacon of strength in the face of adversity.