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Familial Cancer Specialists - a unique team supporting patients with suspected inherited cancer

Wendy Chorley is the Lead Familial Cancer Specialist at University Hospitals of Derby and Burton NHS Foundation Trust. She leads a team of five familial cancer specialists, most of whom are nurses or allied health professionals.

For Genomics Conversation Week, Wendy talks about the work of her team who act as the point of contact for all enquiries on inherited cancer across the trust’s vast catchment area. They receive over 1,000 referrals a year from GPs, specialist nurses and consultants.

When she started in the role 22 years ago, the service had only recently been set up by colleagues to support clinicians, GPs as well as their patients who have, or are concerned about, inherited cancer.

The vast majority of patients with inherited, or familial, cancer often have complex family histories that require in-depth knowledge and time to explore the significance.

Wendy Chorley, Lead Familial Cancer Specialist
Familial Cancer sign
Familial Cancer sign

Wendy added:

“We take the stress off the GPs and other clinicians who don’t have the time for these in-depth discussions within their appointment times. We are supported by regional clinical genetics services based in Nottingham or Birmingham.

“We have a track record of developing clinical pathways with our colleagues from different disciplines such as breast, gynaecology and bowel.“

Cancer is not usually inherited, but some types including breast, ovarian, colorectal and prostate cancer can be strongly influenced by genes and can run in families. We all carry certain genes that are normally protective against cancer. However, if a person inherits or develops a faulty ‘variant’ of these genes, it increases their risk of developing cancer.

“For patients who are diagnosed with certain cancers at an early age, or with specific characteristics, we do a full assessment. This includes drawing a family tree to find out who else in the family has had cancer, the type of cancer and at what age they got it.”

"This assessment will confirm if a patient meets the criteria for genetic testing or not. If the patient meets the criteria, they are offered genetic testing which can determine whether or not their cancer is inherited, or if its a chance happening. This testing is currently available for some cancers including breast, ovarian and colorectal cancers. However, genetics is developing and more tests will be available for other cancers. Results of such genetic testing can significantly influence clinical decisions and treatments, therefore prompt access to such testing is paramount.

“Some patients’ genetic test results may mean that they are eligible for certain research studies and trials. This can be very positive as they may be able to have new treatments as part of the trial and researchers can develop more knowledge about gene variations which predict the success or failure of cancer treatments.”

This may also highlight other family members who may also be at risk of developing cancers.

“As well as helping those who are diagnosed with a form of inherited cancer we follow up with their relatives when we are given the appropriate consent to do so. We also receive referrals from GPs for patients who are worried about their risk of having an inherited cancer.

The team is able to identify and implement relevant screening for those at risk and refers to tertiary genetics for predictive testing if possible. They work closely with multidisciplinary teams to ensure the correct type and frequency of screening for cancers, considering procedures (including surgery) and medications to reduce cancer risk.

She concluded:

“The service has grown significantly over the years and developed in line with the advances in cancer genetics. It provides patients and clinicians with a defined pathway ensuring nothing is missed clinically. Importantly it also ensures patients and family members have access to the counselling and support they need.”

Royal Derby Hospital
Royal Burton Hospital
More about the team

Prior to moving to this role Wendy set up the first MacMillan cancer genetic nurse specialist post based at the Royal Free Hospital in London.

Everyone in the team has either a cancer or science background. They either have, or are working towards, a relevant Master’s qualification.

As well as supporting patients directly, the team make sure that the treatment pathway for patients is smooth; provide ongoing education for colleagues, along with audits, research and publications.

More about the Trust

Derby and Burton NHS Foundation Trust covers a big geographical area. The team hold clinics within the Trust’s four hospitals at Derby, Burton, Lichfield and Ashbourne. More information on the Trust can be found on their website Home | University Hospitals of Derby and Burton (UHDB) | University Hospitals of Derby and Burton NHS (opens in a new tab).