Woman's incurable cancer was dismissed as 'just the menopause'

A newlywed diagnosed with a incurable cancer claimed medics dismissed her symptoms as 'the menopause'. 

Jo Shaw Pyke, 48, from South Shields, began suffering persistent itching around her genitals and pain that felt like she was 'weeing razor blades' in 2022. 

But over the next 18 months, sge said she was told it was the menopause and prescribed six separate courses of antibiotics.

It was only when the cancer counsellor spotted a lump on her vulva — the outer tissue of the female genitalia — in December 2023 that she was referred to a gynaecologist.

Tests showed Mrs Shaw Pyke had a tumour measuring 8cm — roughly the size of a tennis ball — and she was diagnosed with vulvar mucosal melanoma which had also spread to her lymph nodes. 

The vulvar cancer is so rare it makes up just one per cent of all melanoma cases and currently has no cure.

Despite surgery to remove the tumour, a biopsy in June confirmed her cancer had returned.  

Now, she is undergoing immunotherapy, while friends are raising money to help fund an experimental treatment not readily available in the UK.

Recalling her ordeal, Mrs Shaw Pyke 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.

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'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 "s***, what am I dealing with here?"'

She had previously had cervical cancer and underwent a hysterectomy in 2020 but the only sign something may be amiss in 2022 was the 'itching'. 

Mrs Shaw Pyke added: 'I kept going back and forward to my GP but it was still in the midst of Covid and everyone was being told to stay in your house and not to go to the doctor.

'I kept sending e-consults to the doctors. But they kept saying "it's the menopause. It's all the menopause". 

'I think I had six courses of antibiotics prescribed and within a few days the GP secretary would ring and tell me to stop taking them because I didn't have a water infection.

'There was never any follow up except me just putting an e-consult in saying "I've got this pain when I'm urinating again and I've got this and I'm run down and I'm tired".

'I said "enough is enough, they're going to have to refer me to a gynaecologist". 

'The night before that appointment I got out of the bath and I dabbed myself with a towel down below. A bolt of electricity went through me.

'I don't know what possessed me but I went into the bedroom and got a mirror and got the shock of my life. I ran down to my husband, legs wide open and said "what the f*** is that on my vulva?"

'My husband said "don't worry you're at the doctors tomorrow". I don't think he slept and I certainly didn't.'

'As soon as the gynaecologist looked he said "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.'

Around 1,400 women are diagnosed with vulval cancer in the UK each year, with women in their 90s the most likely to be diagnosed with the disease.

Only 58 per cent of vulval cancer patients are expected to survive 10 years following their diagnosis with the disease killing almost 470 Brits each year.

Vulval melanoma is a rare type of vulval cancer. It develops from the cells in the skin that produce pigment.

According to Cancer Research UK, less than 10 per cent of all vulval cancers are melanomas. 

Symptoms often include changes in the colour of the vulva, itching, bleeding, a lump or an open sore visible on the skin. 

About two thirds of vulval cancers are thought to be preventable with 69 per cent estimated to be caused by infection with human papillomavirus (HPV).

HPV are common viruses spread by sexual activity that usually don't cause any symptoms, but some are linked to increased risk of cancers such as vulval and cervical forms of the disease.

This is partly why people in the UK are now offered an HPV vaccine in secondary school.

The tumour on Mrs Shaw Pyke's vulva was removed during surgery in January 2024.

'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,' she said. 

'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.'

But a biopsy revealed Jo's cancer had sadly returned in June 2024. However, the only treatment now available to her is immunotherapy.  

'With mucosal melanoma there aren't really any significant side effects. There's no symptoms. Some people are still doing coast to coast and running marathon,' she said. 

'I'm on stage four palliative now. 

'They've only offered me this drug in the UK for two years if I can sustain it. If I can't, that's it. 

'That's my number up here as far as the UK's concerned. That part I can't compute. I feel physically great.

'I'm not in bed sick like a dying person because my body's not telling me I'm dying.'

In August friends set up a GoFundMe page in an effort to raise money for potentially life-saving therapy abroad. To date it has raised £16,000. 

She said: '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.'