Patient news and updates

Hereditary Diffuse Gastric Cancer Family Workshop

The 3rd Hereditary Diffuse Gastric Cancer (“HDGC”) Family Workshop took place on 6th June 2019, hosted by the Cancer Research UK Cambridge Institute (“CR-UK CI”). Patients and their families were able to talk about the condition and the issues it gives rise to with each other and with clinicians and researchers.

Those attending included participants in the Familial Gastric Cancer Study here at CR-UK CI who have a long term relationships with staff.  Through the research and the clinical expertise offered in Cambridge we are able to offer support and guidance to those who need it, through genetic testing, endoscopy surveillance and where necessary, prophylactic gastrectomy surgery. Nearly 100 patients and research participants with family members from the Familial Gastric Cancer Study attended from across the UK, and some from France. The HDGC multidisciplinary and research team were present and there were also staff members involved in patient care.

The morning session was introduced by Prof. Carlos Caldas, Professor of Cancer Medicine and Senior Group Leader at CR-UK CI, and Prof. Rebecca Fitzgerald, MRC Clinician Scientist and Hon. Consultant Gastroenterologist   There were talks from clinicians and researchers on the HDGC International Guidelines following a recent meeting in New Zealand, the role of the pathologist in HDGC, endoscopy, post-surgical follow-up, and the principles of nutrition affecting eating after a gastrectomy.  Marina Sergides, a research participant, spoke of the TVFS charity established in memory of her sister Vicky Emma who had diffuse gastric cancer.  Marina also gave us a generous donation from the charity towards the research we do in Cambridge for HDGC.

In the afternoon there were talks about forthcoming Gut-brain research, on the involvement of psychiatrists in the HDGC clinic and at endoscopy, a genetic update and about breast screening for lobular breast cancer in HDGC.  Each talk ended with an opportunity for Q&A and there was lively audience participation.  The Workshop concluded with open Q&A to members of the multidisciplinary team.

The 2019 Workshop can be counted a success.  Feedback comments included:-

“…an excellent occasion on many levels…!”

“I was very pleased … fantastically helpful!”

“We were very glad we attended…and certainly did find it useful.”

“We…had the opportunity to talk to other people with CDH1…it felt good to be talking with people who had gone through similar experiences to ourselves…”

We would like to try and include your news and events, photos plus any articles or information that you think it is worth including. If you would like to contribute to this page then please get in touch: susan.richardson@addenbrookes.nhs.uk

 

Downloads

2 HDGC Family Workshop

Hereditary Diffuse Gastric Cancer Syndrome

The Vicky Sergides Foundation Talk

The science behind eating after gastrectomy

Follow-up After Prophylactic Total Gastrectomy

Nutrition Considerations for Gastrectomy

Psychiatry and Gut-Brain Research in the HDGC clinic

All in the family - Genetics aspects of HDGC

Choices for having children

Genetics and Insurance