Angela Terry: EGFR Positive UK

We had two visitors at today’s meeting, Angela Terry of EGFR Positive UK and Leigh Harvey of Open Road. EGFR Positive UK is President Mo’s chosen charity for his Presidential year and Open Road was Immediate Past President Peter’s chosen charity for his year.

IPP Peter introduced Leigh, who gave us an update on Open Road, which provides support for those suffering from drug addiction, alcohol addiction and steroid misuse as well as other services to the community. She told us the charity had kept operating throughout the Covid pandemic because the need for their services did not diminish and some people were unable to access help any other way. The staff and volunteers did have to test themselves regularly.

If anything, Open Road is now busier than ever. She put this down to an increased willingness of some people to seek the help they needed. However, the lockdowns did mean that the charity did not receive all the donations it had before, so our financial contribution was welcome.

Angela Terry of EGFR Positive UK was our main speaker. EGFR stands for “Epidermal Growth Factor Receptor”. This is a form of lung cancer which is caused by a genetic mutation that is present at birth but does not manifest itself until the sufferer is an adult, most commonly among women in their twenties or thirties. Men account for only 16% of those who are EGFR positive.

One of the problems with EGFR is that those with the mutation do not show any cancer symptoms and can feel perfectly healthy. It can give rise a cough but most GPs are likely to ascribe that to something else, so it doesn’t get picked up quickly and can be incurable by the time it is diagnosed. EGFR Positive UK mounted a campaign last year to make GPs more aware of EGFR. A similar campaign this year will be aimed at a wider range of medical personnel, including community pharmacists.

Angela is herself an EGFR sufferer but in her case it was not diagnosed until she had reached retirement age. Even then it was only discovered when she was given an MRI scan in an Austrian hospital following a skiing accident. By that time it was incurable.

Fortunately there is now a simple oral treatment available to tackle the genetic mutation. Unfortunately it only works for a limited time, after which more traditional treatments such as chemotherapy have to be used. Angela expects that will be the case with her shortly.

Lung cancer can spread to the brain. If this happen the sufferer will no longer be allowed to drive. Angela had to get to our meeting by train and taxi.

EGFR Positive UK was formed 2-3 years ago by two British ladies who had first become aware of each other when they both used the same US support forum. Although not one of the founders, Angela is now Chair of the charity. It provides support for both patients and carers. This includes discussion groups where patients can talk about their condition and exchange information. EGFR Positive UK has found it helpful to have separate groups for carers as their needs and experiences differ from those of the patients themselves.