Newlywed cancer counsellor Jo shared her harrowing experience after doctors misdiagnosed her persistent itching as a menopausal symptom, only to later discover she had a rare terminal cancer. Jo Shaw Pyke had recently gotten married but was plagued by itching and pain around her genitals, which doctors attributed to menopause. However, after being dismissed for 18 months, Jo found an 8cm tumour on her vulva and was diagnosed with vulvar mucosal melanoma, an extremely rare cancer, in December 2023.
Despite working as a cancer counsellor for 13 years, Jo had never encountered this type of cancer. She is undergoing immunotherapy, which has a low success rate, and a GoFundMe page has been set up to raise funds for potential life-saving TIL therapy treatment abroad. This rare cancer affects mucous membranes and only accounts for around 1% of melanoma cases. Jo, from South Shields, Tyne and Wear, expressed her shock at the diagnosis and recounted the challenges she faced with doctors attributing her symptoms to menopause.
After discovering the tumour and undergoing surgery to remove it, Jo’s cancer returned in June 2024. Having started immunotherapy, she emphasised the importance of appreciating life and spreading awareness about mucosal melanoma. She has set up a support group for those with incurable diseases and hopes to undergo TIL therapy for a chance at survival. Jo’s advocacy for self-care and body awareness highlights the importance of seeking medical attention for unusual symptoms and conducting regular health checks.
Jo’s courage in sharing her journey and raising awareness serves as a reminder of the unpredictability of life and the significance of cherishing each day. Her resilience in the face of adversity and commitment to helping others facing similar challenges is truly inspiring. Jo’s story reinforces the importance of early detection, timely treatment, and the power of community support in battling rare diseases like vulvar mucosal melanoma.