Heather Morgan believes she could have avoided ovarian cancer if she had lived in England, where genetic testing for breast cancer patients was available. In Wales, she was not eligible for the test that could have identified her increased risk.
Key points
Heather Morgan lives in Monmouthshire, Wales.
She was diagnosed with breast cancer 12 years ago.
Genetic testing was available for patients in England but not in Wales.
Heather believes the test could have prevented her ovarian cancer.
She expressed frustration over the healthcare policy differences.
Had Heather Morgan lived in England when she was diagnosed with breast cancer 12 years ago, she feels there is a good chance she would never have gone on to develop ovarian cancer.
But her postcode - eight miles (12km) west of the English border, in Monmouthshire - meant she was not eligible for a test which would have revealed that her genetics put her at a much greater risk of developing the secondary cancer.
In 2014, patients in England with triple negative breast cancer who were under 50 - as Heather was - were immediately put forward for genetic testing. But in Wales, they were not.
If Heather had had the test, she said it would have prompted her to have both ovaries removed pre-emptively.
"I am mad annoyed," said the 59-year old.
"It's changed everything," she added, explaining that statistically her 10-year survival chances are 35%.
The Welsh government said a minister for preventative and public health had been appointed to address issues like this and there would be an emphasis on improving early detection in a cancer plan for Wales.
It was not until 2021 that a visible lump in Heather's abdomen prompted further tests, and she was diagnosed with ovarian cancer.
She then learned that she had the BRCA1 gene mutation, putting her at a greater lifetime risk of both breast and ovarian cancer.
"Had I been tested [in 2014] we would have immediately known I was at high risk for ovarian cancer," she said.
"I would have immediately had my ovaries removed. It would have been a no-brainer.
"And if they'd have said to have a double mastectomy at that point, I would have."
Heather was 46 at the time and has kept the letter from the all-Wales genetic testing service telling her why she was not eligible.
In essence, it explained the Welsh government of the day was committed to meeting NICE guidance within the financial year, but at the time work was still being done to increase capacity for testing.
By 2015 the rules in Wales had changed to align with England, but by then Heather had finished her treatment and was not invited for the test.
"If I'm going to the supermarket and I've gone a bit over budget I'll think, why save money? What's the point, you'll be dead next week, just buy it," said Heather.
"Something came through the post about retirement homes - am I going to live that long? Should I be worrying about that? No."
Heather now supports the National Hereditary Breast Cancer Helpline, a charity which gives advice to people with inherited cancers to make them better aware of the options and rules.
The helpline recently opened an information centre in Flint, north Wales - its first in the country - and is also now branching out to offer support for the cancers associated with BRCA gene mutations.
Q&A
Why was Heather Morgan not eligible for genetic testing in Wales?
Heather Morgan was not eligible for genetic testing in Wales because the policy did not include patients with triple negative breast cancer under 50 at the time of her diagnosis.
What could have been the outcome if Heather had received genetic testing?
If Heather had received genetic testing, it could have led to the preemptive removal of her ovaries, potentially preventing her ovarian cancer.
How does the genetic testing policy differ between England and Wales?
In England, patients with triple negative breast cancer under 50 were automatically referred for genetic testing, while this was not the case in Wales.
What is triple negative breast cancer?
Triple negative breast cancer is a subtype of breast cancer that lacks three common receptors known to fuel most breast cancer growth, making it more challenging to treat.
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The helpline's founder, Wendy Watson, said disparities were not just cross-border but could exist between health boards and trusts across England and Wales.
"We do have postcode lottery healthcare," she said.
"We shouldn't have - NICE guidelines should sort that out, but at least we're here to provide people with access to the information."
Heather's family has seen first-hand that discrepancies exist between English health trusts too.
She has two adult daughters and while her youngest has been invited for genetic testing in the north-east of England, her eldest daughter in the north-west, has not.
BRCA1 and BRCA2 gene mutations greatly increase an individual's chance of developing certain cancers, including breast and ovarian.
According to the NHS women in the UK have a 12.5% chance, on average, of developing breast cancer in their lifetime and a 2% chance of developing ovarian cancer.
For women with BRCA1 gene alterations, those lifetime risks increase to 72% for breast cancer and 44% for ovarian.
For women with BRCA2 gene alterations, the lifetime risks increase to 69% for breast cancer and 17% for ovarian.
They both come with an increased risk of developing the cancers at a younger age.
NICE guidance recommends annual MRIs to women with BRCA gene mutations from the age of 30-49, with annual mammograms possible from 40 onwards.
While Louise Owen's experience is different, there is a common theme of conflicting advice and discrepancies which prompted her to lean on the support of the helpline.
The 36-year-old has known for over a decade that she carries the BRCA2 gene mutation, again putting her at an increased lifetime risk of breast and ovarian cancers.
When she turned 30 she had her first MRI as part of the screening available for those with an inherited risk.
But she was told subsequent annual MRIs were not possible as she was breastfeeding, despite her own research suggesting they were safe.
Each conclude that while personal choice is key, it is safe to continue breastfeeding after an MRI "as there is no evidence of risk to the baby/child".
However Breast Test Wales said: "MRI breast screening is possible while a woman is breastfeeding but the accuracy of the imaging is reduced due to the changes in breast tissue, which can also lead to unnecessary interventions."
Louise, a mum-of-two, said: "I'm really angry about it, because I feel like why should I have to choose whether I get screening or whether I stop breastfeeding?"
Having seen her own mother go through years of cancer treatment before she passed away in 2016, Louise said her own risk of developing cancer played on her mind a lot and screening would help allay those fears.
However, as a breastfeeding peer support worker, she also feels strongly that she wants to continue feeding her three-year-old until he is ready to stop.
She explained her mental health suffered when she stopped breastfeeding her first-born sooner than she would have liked.
A spokesperson for Breast Test Wales said: "The All-Wales programme for screening this very high risk group of women was rolled out earlier this year across all regions of the country, to provide a consistent service across Wales which is delivered at a hospital in their region.
"The most recent guidance from the Royal College of Radiologists says that undertaking MRI or mammogram screening while women are pregnant is not recommended, as the sensitivity of the screening is significantly reduced due to changes in the breast.
"This could lead to incorrect results - including missing a cancer. It could also lead to a false positive result and an unnecessary intervention like biopsy.
"MRI breast screening is possible while a woman is breastfeeding but the accuracy of the imaging is reduced due to the changes in breast tissue, which can also lead to unnecessary interventions.
"Breastfeeding for the first six months of a baby's life provides them with the best nutrition and also helps in reducing the risk of breast cancer in the mother.
"Breast awareness is always important but particularly so for this group of women at higher risk, and we would advise that they continue to carry out self-examination regularly, and seek medical advice if concerned, while pregnant and breastfeeding."
