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Sian's story How one woman's cancer continues to influence research after death

On a June day in 2005, a breast cancer patient was approached in her clinic and offered an opportunity to improve care for future cancer patients. On hearing that part of the tumor she was having removed could be used to help develop better treatments for future patients, Sian* was eager to help.

A nurse talked her through the process and she consented to donate blood, a tumor sample and medical data for use in research. Her generous decision that day has contributed to eleven different research projects in four countries, improving treatment for future patients around the world. Her samples have been used to develop blood tests for screening and diagnosis, developed new drugs, taught a computer to recognise tumor cells on a slide, and developed technology to diagnose patients based on changes in their DNA.

Sadly, Sian passed away in 2013, but, through her donation she continues to help in the quest for new knowledge about breast cancer, how to detect it and how to treat it many years after her death. A powerful legacy for anyone to leave behind.

Sian’s blood and tissue samples are still stored in a biobank called the Wales Cancer Bank, which specialises in collecting, processing and storing biological samples that will be useful to researchers. They have been made available to researchers since she first donated her sample in 2005, and so far twenty-seven of her samples have been used in research.

When Sian agreed to donate, the biobank received two pieces of tissue and she gave two extra tubes of blood. Staff from the Wales Cancer Bank work closely with pathologists to make sure the diagnosis and treatment of the patient comes first. Only when there is spare tissue that is not needed by the pathologist can the biobank receive tissue samples.

By careful processing and storage, those four samples have become many more. Dr Alison Parry-Jones, Manager of the Wales Cancer Bank, explained:

“The tissue we hold will be cut into small pieces and stored in different ways. One portion may be frozen and stored in -80 degree freezers and another put into a wax block. Both of these can later be cut into very thin slices so we maximize the amount of samples available for research. Depending on how thick the original piece of tissue is, we may be able to get 10-100 of these sections from a single piece of tissue. We can also extract DNA from the tumour in these blocks.”

One of the researchers who used DNA from Sian’s tumour was Professor Duncan Baird of Cardiff University. His particular area of interest is telomeres, which are the caps at the end of each strand of DNA that protect our chromosomes, like the plastic tips at the end of shoelaces. They are an essential part of human cells and they affect how cells age. Just as shoelaces fray without the plastic tips, DNA strands become damaged without telomeres. Prof Baird’s research has led to the development of a test that measures telomere length to predict the aggressiveness of common types of cancer, such as breast cancer and Chronic Lymphocytic Leukaemia.

Prof Baird said, “Our tests will allow cancer patients and their clinicians to make informed clinical decisions about their disease, and we are looking forward to making the test available to patients in the near future. This test will make a real difference to patients and without the generosity of people like Sian these advances wouldn’t be possible.”

Patients sit at the heart of everything the Wales Cancer Bank does. Not only do they provide samples for future research, but they are also involved in the organisation’s Lay Liaison and Ethics group.

Sue Campbell, Chair of the group, said:

“It was visionary of the Welsh Government to fund the Wales Cancer Bank in 2004 – it was ahead of its time as many biobanks came online in later years, so Wales really got ahead in those early years. There have been reductions in funding recently, not just the core funding but loss of charity funding as well. This is a real shame and has impacted on the great work that the Bank does and has reduced the number of hospitals they can cover. Fewer patients are given the opportunity to donate to the biobank and take part in research. It would be a huge blow if the support the Bank gives cancer researchers has to be reduced again because of further funding restrictions.”

The Wales Cancer Bank is a great resource for cancer research here in Wales and further afield.

It serves two different communities in one – it gives patients the opportunity to take part in research and it supports the scientists doing the important work that will help future generations of cancer patients.

An overwhelming proportion of patients (97%) who are asked if they would donate to the Wales Cancer Bank agree to do so.

Some express surprise that excess samples aren’t routinely used for research and that patient consent must be sought.

Professor Malcolm Mason, founder and past Director of the Wales Cancer Bank, said:

“Nearly all the patients who are asked if they will consent to donate samples and data to the Wales Cancer Bank say yes. They know the research is for the future and so is unlikely to help them, but they see it as an investment for their children and grandchildren. They say that anything that could reduce the likelihood or impact of cancer for future generations is a worthwhile investment.”

Judi Rhys, the CEO of Cancer Research Wales, said:

As one of the founding key-stakeholders, Cancer Research Wales is proud to have helped the Wales Cancer Bank establish itself as pioneer in the use of clinically relevant tissue samples for research. This vital resource has proven an invaluable asset for researchers and clinicians as they strive to deliver the promise of personalised cancer medicine. We envisage a future where the right patient is matched with the right drug at the right time, ensuring the best chance of cure with reduced side-effects

The work of the Wales Cancer Bank is contributing to research across the world. Every patient who donates to the bank is helping to build momentum against the disease as we tackle cancer together.

*In the interests of confidentiality, we have used a false name.

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Created with images by Ken Treloar - "A Reassuring Hand" • webandi - "candle light candlelight"

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