A newlywed diagnosed with incurable cancer claimed doctors dismissed her symptoms as “menopause.”
Jo Shaw Pyke, 48, from South Shields, began suffering from persistent itching around her genitals and pain that felt like she was “urinating on razor blades” in 2022.
But over the next 18 months, Sge said she was told it was menopause and prescribed six separate courses of antibiotics.
It wasn’t until December 2023 that the oncology counselor detected a lump on her vulva (the outer tissue of the female genitalia) that she was referred to a gynecologist.
Tests showed Mrs Shaw Pyke had a tumor measuring 8cm (about the size of a tennis ball) and she was diagnosed with melanoma of the vulvar mucosa which had also spread to the lymph nodes.
Jo Shaw Pyke, from South Shields, began suffering from persistent itching around her genitals and pain that felt like she was “urinating on razor blades” in 2022.
But over the next 18 months, the now 48-year-old woman said 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 that his cancer had returned.
He is now receiving immunotherapy, while his friends are raising money to help fund an experimental treatment not available in the UK.
Recalling her ordeal, Mrs Shaw Pyke said: “I haven’t worked with many vulvar cancers.
‘Certainly, in 13 years I have never worked with anyone with mucosal melanoma. I had never even heard of the word.
‘I have seen thousands of clients and attended more funerals than hot dinners.
‘I have come across many different forms of cancer, but I had never heard of it. It was like “Holy shit, 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 “itch.”
Mrs Shaw Pyke added: “I kept going back and forth to my GP but it was still in the middle of Covid and everyone was being told to stay at home and not go to the doctor.”
‘I kept sending electronic queries to doctors. But they kept saying “it’s menopause. It’s all menopause.”
‘I think I was prescribed six courses of antibiotics and a few days later the GP’s secretary called me and told me to stop taking them because I didn’t have a water infection.
“There was never any follow-up except that I just did an e-consult saying, ‘I have this pain when urinating again and I have this and I’m exhausted and tired.’
“I said enough is enough, they are going to have to refer me to the gynecologist.”
‘The night before that appointment I got out of the bathroom and dried myself with a towel downstairs. A bolt of electricity went through me.
‘I don’t know what possessed me, but I went into the bedroom, grabbed a mirror and got the shock of my life. I ran towards my husband with my legs spread wide and said, “What the fuck is that on my pussy?”
It wasn’t until the cancer counselor detected a lump on her vulva (the outer tissue of the female genitalia) in December 2023 that she was referred to a gynecologist.
Tests showed Mrs Shaw Pyke had a tumor measuring 8cm (about the size of a tennis ball) and she was diagnosed with melanoma of the vulvar mucosa which had also spread to the lymph nodes.
‘My husband told me ‘don’t worry, tomorrow you will be at the doctor’. I don’t think he slept and I certainly didn’t either.
‘As soon as the gynecologist looked he said “it’s definitely vulvar cancer.”
‘The doctors took an 8cm radius of the tumor. You could see that at least half of it was black. The other half was completely disfigured.
Around 1,400 women are diagnosed with vulvar cancer in the UK each year, with women in their 90s being the most likely to be diagnosed with the disease.
Only 58 per cent of vulvar cancer patients are expected to survive 10 years after their diagnosis and the disease kills almost 470 Britons each year.
Vulvar cancer is so rare that it accounts for only one percent of all melanoma cases and currently has no cure.
Vulvar melanoma is a rare type of vulvar cancer. It develops from skin cells that produce pigment.
According to Cancer Research UK, less than 10 per cent of all vulvar cancers are melanomas.
Symptoms usually 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 thought to be preventable and an estimated 69 percent are caused by human papillomavirus (HPV) infection.
HPVs are common viruses that are transmitted through sexual activity and usually do not cause any symptoms, but some are linked to an increased risk of cancer, such as the vulvar and cervical forms of the disease.
This is partly why people in the UK are now offered the HPV vaccine in secondary school.
Mrs Shaw Pyke’s vulvar tumor was removed during surgery in January 2024.
‘They sewed me from top to bottom and all the stitches at the bottom split open and you can’t sew them back up. He was infected twice,” he said.
‘I sat with my legs spread for almost three and a half months. I had to eat everything lying down and couldn’t sit up.’
But a biopsy revealed that Jo’s cancer had sadly returned in June 2024. However, the only treatment available to her now is immunotherapy.
“In the case of mucosal melanoma, there are actually no significant side effects. There are no symptoms. “Some people still go coast to coast and run marathons,” he said.
‘I’m in palliative stage four now.
‘I was only offered this medication in the UK for two years if I can tolerate it. If I can’t, that’s it.
Despite surgery to remove the tumor, a biopsy in June confirmed the cancer had returned.
‘That’s my number here as far as the UK is concerned. I can’t calculate that part. I feel physically great.
“I’m not in bed sick like a dying person because my body doesn’t tell me I’m dying.”
In August some friends set up a GoFundMe page in an effort to raise money for potentially life-saving therapies abroad. To date it has raised £16,000.
She said: “If I am lucky enough to fight this disease and survive, my goal will be to resume counseling cancer patients, continue my support group for cancer patients living with incurable cancer, and also be an advocate of anyone who is starting their treatment. trip with mucosal melanoma.
‘As soon as I was diagnosed, I logged onto my Facebook. If you save a person just by checking their body or just looking.’
