A mother and daughter who believe their lives were saved by £40 ovarian cancer tests are calling for it to be more widely used in Scotland.
Mary Hudson and her daughter, Julie Goedkoop, say they are only alive because Mary got the blood test CA-125, which not only identified that she had ovarian cancer, but led to further tests which showed she was a carrier of the rare RAD51D gene.
Mary, 71, from Springboig near Glasgow, said: “My daughter and I believe we are only alive because I finally got the CA-125 blood test four years ago.
“We want to see it being used far more often in Scotland to save others. We recognise it won’t spot every case of ovarian cancer, but it does flag up three out of four and, at around £40 a test, it sounds very little to save a life.”
Mary spoke out after the Sunday Post highlighted serious problems with treating ovarian cancer in Scotland, which have included women paying up to £30,000 in order to get urgent treatment in England, and others struggling to get access to the CA-125 test.
After being diagnosed with triple negative breast cancer in 2007, Mary went on to develop ovarian cancer twice. After a worryingly high result in a CA-125 blood test in 2019, her doctors also advised genetic testing.
The results showed Mary was carrying the rare RAD15D gene which vastly increases the risk of cancer.
‘Awful’ wait for ovarian cancer test results
Mary said: “That came as a complete shock, not just for me but for the whole family, particularly as I have three daughters. Waiting for the results was awful.”
Two daughters tested and were clear but Mary said: “Julie was also found to have the RAD15D gene.
“She immediately took the brave decision to have a full hysterectomy to prevent development of ovarian cancer.
“My brother’s daughter was also found to be a carrier, and tests showed she was already suffering from cancer.
“She started treatment straight away, but tragically she died from a blood clot while she was still battling cancer. My niece was just 47 years old. She had two sons and husband who adored her. Losing her has shattered the whole family.
“The terrifying thing was that although she had cancer, like so many women, she had no symptoms and had no idea at all that she had the deadly disease.
“As far as my daughter and I are concerned, me finally getting the blood test CA-125 was the catalyst that saved both our lives.”
Mary had first been told she had triple negative breast cancer when she was 57. Treatment included radiotherapy, chemotherapy and surgery.
She said: “Sadly, I wasn’t offered the CA-125 blood test at that time.
“We know it is not going to be 100% accurate for everyone, but what happened to us proves it can and does save lives.”
The National Institute for Health and Care Research discovered that the CA-125 blood test was far more accurate than first thought, flagging up three in four ovarian cancers, and 85% of those most likely to be fatal.
But Mary was only given the CA-125 test in 2019 when she had already developed the symptoms of ovarian cancer.
Despite surgery, chemotherapy and radiation treatment, Mary’s ovarian cancer returned two years later.
She successfully fought with NHS Greater Glasgow and Clyde to pay for her treatment with a private surgeon in London.
Julie now faces a six-year wait to discover whether her own daughter may be carrying the gene.
Mortgage specialist Julie, 47, from Glasgow, said: “When I was found to be carrying the gene, I decided to be proactive and have a hysterectomy.
“I know I made the right decision because when I had the operation, my surgeon told me that my ovaries were covered in cysts.
“Being a RAD51D carrier means I’m also at very high risk of breast cancer, and I’ve been begging my specialists to remove them.
“I would rather not have them than live with the increased risk. But my surgeon refuses to sanction the surgery.”
Trailing behind
Julie worries that specialists here are trailing behind those in the US who take more radical action.
She said: “I’m in touch with many women in the US and while women here are told being a RAD51D carrier is a moderate risk for cancer, in America women are told it is high risk and they tend to have surgery to remove their breasts to prevent the development of the disease.”
Julie’s daughter is just 12 years old, but she will not be given the genetic test until she is 18.
The mum of one said: “I don’t think we should have to wait to know the truth.
“That’s another six years of stress.
“She is either a carrier or she isn’t. Genetic tests can tell that at any age.
“We fear despite all the rhetoric from the Scottish government, Scotland’s cancer services are trailing far behind other countries.
“Much more investment is needed to keep up.
“Genetic testing is regularly used overseas while we appear to be stuck in the past.
“Specialists seem to be aware of the BRCA cancer gene here but mention the RAD15D gene and I find they know very little.”
Campaigners slam health board refusal to reimburse patients as Health Plan snubs ovarian cancer
Mary and Julie are also campaigning over access to mammograms for women more at risk.
In Scotland, women over 70 no longer get regular checks, and those aged 50-70 get called for checks only every three years.
She said: “Women like us who are at greater risk should be getting mammograms every year no matter our age.
“Much more must be done to identify those at greater risk, and much more must be done to ensure there is yearly testing.”
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