I have a BRCA mutation

Finding out you have a BRCA gene mutation is life changing. The NHS, Jewish community and national charities offer a range of support resources and services for individuals with a BRCA gene mutation, helping them both immediately after diagnosis and throughout their onwards risk management journey. 

NHS Support

NHS Jewish BRCA Testing Programme Helpline

Anyone who tests positive for a BRCA mutation through the NHS Jewish BRCA Testing Programme can access genetic counselling support via their helpline. The helpline can be used at any point after receiving results and individuals do not need to make appointments. The helpline is open 9am-5pm Mon-Fri with extended hours until 7pm on a Wednesday. The number is +44 20 3437 6001

NHS Regional Genetics Centre

Anyone who tests positive for a BRCA mutation through the NHS or privately is eligible for genetic counselling support via their regional genetics centre. Here they can see a genetic counsellor or clinical geneticist who can help them to better understand their diagnosis and options for risk management. 

The NHS provides services to help those with a BRCA mutation to manage their increased risk of cancer. You can read about these in depth here. 

Jewish Community Support

Chai Cancer Care have specialist counsellors who can provide individual and group counselling to individuals with a BRCA mutation. Peer-to-peer supports in also available. Click here to go to their website or call their free confidential helpline on 0808 808 4567

Chana is the leading fertility support organisation for the Jewish community in the UK. They can support (Orthodox) couples in which partner has a BRCA gene mutation who are exploring how they can avoid passing on the mutation to their future children. They can provides 

  • Counselling 
  • Confidential helpline  
  • Information via sessions and webinars  

Click here for their website or call their free confidential helpline on 020 8201 5774

BRCA Journey is a Leeds-based, volunteer-run support network, aiming to promote awareness of BRCA in the Jewish population, and supporting those who are at risk or diagnosed with a gene alteration.  

They can help with information and peer to peer support. 

email: brcajourney@gmail.com 

phone: 07714204664 

twitter: @BRCA_Journey 

facebook: brcajourney 

National Charity Support

Prostate Cancer UK is a charity that provides information, support and research to help men with prostate cancer and their families.

Individuals with a BRCA gene mutation may benefit from their

  • specialist nurse helpline
  • extensive online information 

Call the Specialist Nurses:0800 074 8383

Breast Cancer Now is one of the countries leading breast cancer research and support organisations. They can support individuals with a BRCA mutation via:

  • Specialist Nurse helpline
  • Peer to peer support services – ‘Someone Like Me’
  • Information booklets and videos
  • Webinars

Find out more on their website here. 

CoppaFeel is a national charity focussed on raising awareness of breast cancer amongst young people, with the aim of instilling the knowledge and tools they need to get to know their bodies. They have extensive information about breast self examination and other breast cancer symptoms. 

Ovarian Cancer Action is the UK’s leading ovarian cancer charity. They provide great information about BRCA and ovarian cancer on their website

The Eve Appeal is the UK’s Gynaecological Cancer Research Charity raising awareness & funding research into five gynae-cancers: Womb, Ovarian, Cervical, Vulval and Vaginal. Some of their services are relevant for those with a BRCA gene mutation including their Ask Eve Service. This is a nurse led- email & phone information helpline  

To contact their nurse-led information service about any questions related to gynaecological health, including BRCA-related cancers, call 0808 802 0019 – which is free to call from landlines and mobile phones – or get in touch via email nurse@eveappeal.org.uk. 

Target Ovarian Cancer provides information and support to those impacted by ovarian cancer across the UK. Individuals with a BRCA mutation may benefit from their: 

  • an online community
  • nurse-led information & advice line
  • emotional support

The support line can be contacted on

020 7923 5475

support@targetovariancancer.org.uk

Ovacome is anational UK ovarian cancer charity focused on providing support and information to anyone affected by ovarian cancer. This includes people who have either been diagnosed with the disease or think that they might be at risk, as well as their friends and family and healthcare professionals.

The following are services that may help individuals with a BRCA mutation:

  • Call or email support line 
  • Support groups 
  • Online talks & workshops 

The support line is open 10am-5pm Monday-Friday, on 0800 008 7054 or support@ovacome.org.uk

For general enquiries:  0207 299 6654

BRCA+ Chat  is a small UK national charity which aims to help all anyone navigating a BRCA gene mutation (or other related gene). It can support those considering testing, those who have already been tested, or individuals who have been diagnosed with cancer – or someone wanting to support a friend. 

Our board of Trustees are (mostly) all BRC positive people who all felt overwhelmed and alone when first diagnosed. They recognised a need for more support services in the U.K. 

They can’t provide medical advice, but can support emotionally, or put you in touch with services that can help.

Find out more here. 

Facebook Support Groups

There are several Facebook groups/ communities for individuals with a BRCA mutation. They are an excellent platforms for peer-to-peer support and information. Please contact Jnetics on 020 8158 5123 or info@jnetics.org for a list of these. 

Other

The Royal Marsden NHS Foundation Trust has produced a beginner’s guide to BRCA1 and BRCA2.  

To access the guide, go to the link below.  Then select ‘patients and visitors’ on the top menu. Then select ‘patient information library’. You can search for the guide using the search option. The guide is available for download.  

Visit https://www.royalmarsden.nhs.uk/→ 

If you have any other questions relating to BRCA do not hesitate to contact Jnetics on 020 8158 5123.