11 February 2020
Libby’s legacy shared in new video
A mother whose daughter died from cancer after treatment at the
Royal United Hospital (RUH) in Bath has spoken about the value of
joining the 100,000 Genomes Project for research and for helping
her to come to terms with her grief.
Diane Woodland's daughter Libby volunteered for the project
after she was admitted to the RUH and diagnosed with a rare cancer.
She died aged 25 in August 2018.
Diane said: "The doctors told us they'd never seen a cancer
before like the one Libby had and they didn't know what treatment
to give her.
"My deepest fear was that, having produced Libby and her brother
George, it was something my husband and I had passed on to
her."
Tracie Miles, RUH gynaecology clinical nurse specialist for
gynaecology cancer and legacy genomics practitioner, recruited
Libby to the 100,000 Genomes Project through the West of England
Genomic Medicine Centre (WEGMC) while she was being treated at the
hospital.
The national project was a major NHS initiative to sequence
100,000 genomes from patients with rare inherited diseases or with
cancer and to transform NHS services to include genome sequencing
as standard care for future patients. The ambitious aim to sequence
100,000 genomes (DNA sequences) from NHS patients was reached in
December 2018.
Tracie said: "Libby wanted to know about her cancer. Her biggest
fears were for her family and their future - she wanted more
information for herself and for them. In addition she wanted to
help patients in the future with information from her stored
genomic data. The results that came back showed there was no
inherited reason for her succumbing to this cancer. This was a real
relief for her mum and her dad."
Diane said: "It was just amazing to find out that George is very
unlikely to have it, I can't express how much that means.
"Signing up for the trial means that, hopefully, things will be
discovered that go on to help other people, which is what Libby so
wanted to do from such an early age. It might take five or 15 years
but I just hope that the information that's needed is supplied -
and I'm so proud and lucky that my daughter has been able to take
part in this research."
Tracie added said: "Genomics has the ability to influence the
care we give today. For example a woman newly diagnosed with
ovarian cancer will have her tumour tested to see if she carries an
alteration of her BRCA 1 or 2 gene. If that's the case it may
mean that her oncologist, the doctor who prescribes her
chemotherapy, could have other therapeutic choices for her, and it
may increase her survival advantage. It will also give important
health information for her family, who may choose to be tested to
see if they carry the altered gene, enabling them to access
relevant screening and other cancer risk reducing strategies. So,
the learning is already making a difference now for patients, not
just in the future."
The current focus for the local WEGMC teams is on returning
results to patients and their families, where appropriate, and also
sharing the important impact that this project, and genomic
medicine in general, will have on future patients locally,
nationally and potentially across the world.
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