BRCA

BRCA Kent is a group set up by volunteers to support women in Kent with a BRCA mutation, on a regular and consistent basis. The group is run independently from any healthcare trust and provides experience, support and friendship to women living with a BRCA mutation.

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All the women in the group have had a BRCA1 or 2 confirmed diagnosis and are at various stages of their BRCA journey. The group has many ladies who have had all or part of their risk-reducing surgeries, others that have chosen to have regular surveillance, and newly diagnosed members. The only requirements to membership are that women are over 18, diagnosed as BRCA1/2 positive and live in Kent.

The group is run by Elizabeth Leech, Jo Considine, Suzannah Fitzgerald and Natalie Savage. Due to group numbers increasing, they hold meetings at venues in Maidstone, Canterbury and Margate to ensure that they are easily accessible to members in East and West Kent. They ensure the meetings are accessible, and the atmosphere remains friendly, non-intimidating and not over-crowded. The number of meetings and venues means that it is never too long to wait if you really need to speak to someone. Ladies can attend any of the meetings at any of the venues, as little or as often as they like.

BRCA Kent say:

‘We are passionate about supporting local women and understand that it can feel like a whole new world, from understanding the different surgical techniques, to managing HRT. This means that we are able to support each other locally, often having experience of the same surgeons and hospitals. Between us all, we have a huge array of experience that we can share, to help ladies feel less isolated, better informed and more empowered to make the right choices for them.’

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Elizabeth Leech Lead Volunteer – BRCA Kent

Back in October 2008, at the age of 41, I discovered that I had inherited a BRCA2 gene alteration from my mother who had sadly been diagnosed with Grade 3C Ovarian Cancer. Little was known about the gene alteration from the patient’s perspective back then, and there was little support available. As I had completed my family, I decided to have risk-reducing surgery and opted first for a total hysterectomy in April 2009, followed by a skin-sparing bilateral mastectomy with immediate reconstruction (implants) in November of that year.

I felt incredibly lucky that I was able to find out that I carried the alteration and could do something positive about it. However, even though I was fully supported by my husband, immediately family and close friends, I still felt isolated as nobody really knew what I was going through and how I was feeling. This is when I started to think of ways that I could help other local women in the same situation as me. I knew that I had come through my surgeries relatively smoothly and thought I could offer other ladies some useful guidance and support.

Around about this time, I was approached by the late Caroline Langman, who was Senior Research Nurse at Guy’s Hospital, to see if I wanted to help facilitate their BRCA support groups in Maidstone and Canterbury. I jumped at the chance and this is where I was lucky enough to meet Suzannah Fitzgerald, Breast Care Clinical Nurse Specialist. In the meantime, a good friend of mine got in touch with me to see if I could talk to a lady she knew who was due to have risk-reducing surgery, Jo Considine. Jo and met up and chatted for hours, and I showed her my breast reconstruction and shared all my information and experiences. After her surgery, Jo started attending the Maidstone support group where she also met Suzannah and other local BRCA ladies.

Very sadly Caroline passed away in November 2015, which was a huge loss to us all! This is when Suzannah and I decided to set-up a voluntary-led support group with Jo’s help. A Facebook Group Page had already been established the year before, so this was a great platform to promote our new face-to-face meetings.

Our first face-to-face meeting took place in December 2015 and since then we have grown from strength to strength. As well as supporting local ladies, we have organised one day educational events for local healthcare practitioners, attended many GP events to promote our group and to increase awareness of the gene alteration. We have also given talks to the community, including The British Menopause Society, NHS Dartford & Gravesham NHS Trust and John Lewis and have been interviewed by BBC Radio Kent.

I am extremely proud of what our group has achieved and feel very honoured to know so many strong and wonderful women within our BRCA community. Everyone respects each other and are incredibly kind, which creates a safe and caring environment for all our members. I am forever grateful to all our volunteers and advisers for giving up their own time to help run the group. As for me, I am very grateful to have had revised breast reconstruction (Diep Flap) 2 years ago in the middle of the Covid Pandemic and recovered so well. I continue to live in a village near Tonbridge with my husband, two cats and ducks, have two grown-up daughters and work full-time as private secretary to my husband’s medical practice. I love spending my time volunteering for this group, which ties-in well with my other voluntary work in the community; I am also a volunteer for Breast Cancer Now and help with their ‘Someone Like Me’ service and am responsible for the charity’s information stand at Peggy Wood Breast Care Unit at Maidstone Hospital. I’m delighted to have been nominated by Breast Cancer Now for the Tracey Williams Outstanding Volunteer Award both in 2022 and 2023.

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At this moment in time, the Amara Clinic is unfortunately unable to see patients under the age of 18, and we sincerely apologise for any inconvenience this may cause

 

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