A newlywed with incurable cancer claimed doctors dismissed her symptoms as ‘menopause’.
Jo Shaw Pyke, 48, from South Shields, started experiencing persistent itching around her genitals and pain that felt like she was ‘peeing razor blades’ in 2022.
But over the next eighteen months, Sge was told it was menopause and prescribed six separate courses of antibiotics.
It was only when the cancer consultant discovered a lump on her vulva – the outer tissue of the female genital organs – in December 2023 that she was referred to a gynaecologist.
Tests showed Ms Shaw Pyke had a tumor measuring 8cm – about the size of a tennis ball – and she was diagnosed with vulvar mucosal melanoma which had also spread to her lymph nodes.
Jo Shaw Pyke, from South Shields, suffered persistent itching around her genitals and pain that felt like she was ‘peeing razor blades’ in 2022
But over the next 18 months, the now 48-year-old says she was told it was menopause and prescribed six separate courses of antibiotics.
Vulvar cancer is so rare that it accounts for only one percent of all melanoma cases and currently has no cure.
Despite surgery to remove the tumor, a biopsy in June confirmed her cancer had returned.
Now she is undergoing immunotherapy, while friends raise money to help fund an experimental treatment not readily available in Britain.
Recalling her ordeal, Mrs Shaw Pyke said: ‘I haven’t worked with many vulvar cancers.
‘Certainly in the thirteen years that I worked with someone with mucosal melanoma. I had never heard of the word.
“I’ve seen thousands of clients and I’ve been to more funerals than you’ve had hot dinners.
‘I have come across many different forms of cancer, but had never heard of them myself. It was like “s***, what am I dealing with here?”
She had previously had cervical cancer and had a hysterectomy in 2020, but the only sign that something might be wrong in 2022 was the ‘itching’.
Mrs Shaw Pyke added: ‘I kept going back and forth to my GP but it was still the middle of Covid and everyone was being told to stay in your house and not go to the doctor.
‘I kept sending e-consults to the doctors. But they kept saying, “It’s menopause. It’s all menopause.”
‘I think I was prescribed six courses of antibiotics and within a few days the GP secretary called to say I had to stop taking them because I didn’t have a water infection.
‘There was never any follow-up other than me just submitting an e-consult saying, “I’m having pain when I pee again and I’m having this and I’m exhausted and I’m tired.”
‘I said: ‘enough is enough, they will have to refer me to a gynaecologist’.
‘The night before that appointment I got out of the bath and wiped myself down with a towel. An electric current went through me.
‘I don’t know what came over me, but I went into the bedroom and grabbed a mirror and got the shock of my life. I ran up to my husband, my legs wide open, and said, “What the fuck is that on my vulva?”
It was only when the cancer consultant discovered a lump on her vulva – the outer tissue of the female genital organs – in December 2023 that she was referred to a gynaecologist.
Tests showed Ms Shaw Pyke had a tumor measuring 8cm – about the size of a tennis ball – and she was diagnosed with vulvar mucosal melanoma which had also spread to her lymph nodes.
“My husband said, ‘Don’t worry, you’ll be at the doctor tomorrow.’ I don’t think he slept, and I certainly didn’t.”
‘As soon as the gynecologist looked he said: “It’s definitely vulvar cancer.”
‘The doctors took a radius of 8 cm from the tumor. You could see that at least half of it was black. The other half was completely deformed.’
Around 1,400 women are diagnosed with vulvar cancer in the UK every year, with women in their 90s most likely to be diagnosed with the disease.
Only 58 percent of vulvar cancer patients are expected to survive ten years after their diagnosis, with the disease killing almost 470 Britons every year.
Vulvar cancer is so rare that it accounts for only one percent of all melanoma cases and currently has no cure
Vulval melanoma is a rare form of vulvar cancer. It arises from the cells in the skin that produce pigment.
According to Cancer Research UK, less than 10 percent of all vulval cancers are melanomas.
Symptoms often include changes in the color of the vulva, itching, bleeding, a lump, or an open sore visible on the skin.
About two-thirds of vulvar cancers are believed to be preventable, with an estimated 69 percent caused by human papillomavirus (HPV) infection.
HPV are common viruses spread through sexual activity that usually cause no symptoms, but some are linked to an increased risk of cancer, such as vulval and cervical forms of the disease.
This is partly why people in Britain are now offered an HPV vaccine at secondary school.
The tumor on Ms 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 sew it again. It has been infected twice,” she said.
‘I sat with my legs open for almost three and a half months. I had to eat everything lying down and couldn’t sit down.’
But a biopsy revealed that Jo’s cancer had unfortunately returned in June 2024. However, the only treatment available to her now is immunotherapy.
‘There are no significant side effects with mucosal melanoma. There are no symptoms. Some people still go coast to coast and run marathons,” she said.
‘I am now in phase four palliative care.
‘They only offer me this medicine in Britain for two years if I can stick with it. If I can’t do it, then that’s it.
Despite surgery to remove the tumor, a biopsy in June confirmed that her cancer had returned
‘That’s my number here, as far as Britain is concerned. I can’t calculate that part. I feel great physically.
“I don’t lie in bed sick like a dying person because my body isn’t telling me I’m dying.”
In August, friends founded a GoFundMe page in an effort to raise money for potentially life-saving therapy abroad. So far it has raised £16,000.
She said, “If I am blessed enough to fight and survive this disease, my focus will be on resuming counseling for cancer patients, continuing my support group for cancer patients living with an incurable form of cancer and also being an advocate are for everyone who is starting their illness. journey with mucosal melanoma.
“As soon as I was diagnosed, I went to my Facebook. If it just saves one person who just checks his body or just watches.”