Cancer counsellor's ultra-rare cancer dismissed as menopause

Jo Shaw Pyke had only just tied the knot last autumn and was supposed to be enjoying her 'honeymoon' period but had persistent itching and eventually pain around her genitals.

The 48-year-old claims doctors blamed the symptoms on her going through the menopause, but after being reportedly dismissed for 18 months, Jo was horrified when she found an 8cm tumour on her vulva.

She was diagnosed with an extremely rare cancer in December 2023 - vulvar mucosal melanoma - that she had 'never even heard of' during her 13 years working as a cancer counsellor.

(Image: Kennedy News and Media)

While there is no cure, Jo is currently undergoing immunotherapy to try and keep her cancer at bay - but sadly this has a very low success rate.

A GoFundMe page has been set up by her friend Karen Murray to raise money to enable the cancer patient to undergo potentially life-saving TIL therapy treatment abroad as it is not readily available in the UK.

The rare disease develops in the mucous membranes, such as those lining the mouth, nose, throat, anus or genital areas and only affects around one per cent of melanoma cases, according to Melanoma Research Alliance.

Jo, who worked as a counsellor for Cancer Connections and lives in South Shields, Tyne and Wear, said: "I've not worked with many vulvar cancers.

"Certainly in 13 years I've never worked with anyone with mucosal melanoma. I'd never even heard of the word.

"I've seen thousands of clients and I've been to more funerals than you've had hot dinners. I've come across lots of different forms of cancer but hadn't heard of it myself. It was like, what am I dealing with here?"

The former cancer counsellor revealed she has a history of cervical cancer and had a hysterectomy in 2020 but after complaining of painful itching in 2022, doctors dismissed her symptoms as being side effects of the menopause.

After being referred to a gynaecologist, the mum discovered she had an eight centimetre tumour in her vulva and was diagnosed with vulvar mucosal melanoma which had also spread to the lymph nodes.

The tumour on her vulva was removed during surgery in January 2024.

Jo said: "As soon as the gynaecologist looked he said 'I'm telling you now, it's definitely vulva cancer'.

"Doctors took an 8cm radius of the tumour. You could see at least half of it was black. The other half was all disfigured.

"I was stitched from top to bottom and all the stitches at the bottom came open and you can't restitch it. It got infected twice.

"I just sat with my legs open for nearly three and a half months. I had to eat everything lying down and I couldn't sit down."

A biopsy revealed Jo's cancer had sadly returned in June 2024.

The 48-year-old has set up her own support group for people living with incurable diseases which meets up every fortnight.

Jo is hoping Karen's fundraiser will enable her to undergo vital TIL therapy treatment and aims to spread vital awareness about mucosal melanoma while encouraging people to get their bodies checked.

Jo said: "It would mean the world to me if I am fortunate enough to get the chance at TIL therapy, as I'm confident it will save my life.

"If I am blessed enough to battle this disease and survive, my focus will be to resume counselling cancer patients, continue my support group for cancer patients living with an incurable cancer and, also be an advocate for anyone who's starting on their journey with mucosal melanoma.

"As soon as I got diagnosed I took to my Facebook. If it saves one person just checking their body or just looking.

"I got so many calls from female friends that said 'I have itchiness as well'. I just said 'go and get it checked out'.

"Luckily everyone came back all OK but it's that great that people are being more vigilant with their bodies and checking. That's not just for girls but for guys as well.

"If I can help point just one person in the right direction then it's all worthwhile what's happening with me."