What to consider before testing

Making your decision 

Finding out you have a BRCA gene mutation impacts many areas of your own life and that of your family. Therefore the decision to get tested shouldn’t be made in haste and needs to be fully informed. Anyone thinking about BRCA testing needs to take time to consider whether and when the timing is right, focussing on important factors such as:

  • personal circumstances
  • family circumstances
  • age
  • stage of life
  • fertility/reproductive wishes
  • personal attitude
  • religious considerations. 

Women in particular need to think about their fertility, family planning and reproductive options, as well as the options they may be offered for breast and ovarian cancer risk management. 

Ask yourself these questions 

The questions below may help you to think about what the repercussions or implications of testing may be, therefore aiding you in making an informed choice about if the timing is right or not. Remember these two things first:

  • there are no right or wrong answers
  • there is a range of resources available (listed below) to help if you need further support or information to explore these questions 

1) If I find out that I have a BRCA gene mutation, what options will I have for risk management? 

  • Which options are available at my current age and stage of life, and how may this change over time? 
  • Is there any reason for me to test if I can’t or will not access the risk management options yet?
  • Would it be beneficial for me to know early so that I can plan? 

2) Is the timing right for me to take the test?

  • What else is going on for me personally, both practically and emotionally?  
  • Am I planning a family? (see below) 

3) If I find out that I have a BRCA gene mutation, what might this mean if I am planning a family? 

  • Do I want to test before or after having children? 
  • Would knowing the test result help plan when to have a family as well as contraceptive choices? 
  • Would I consider the reproductive options available to avoid passing on a BRCA gene mutation? 

4) If I find out that I have a BRCA gene mutation, how might it impact me emotionally? How may my emotions change over time?

5) If I find out that I have a BRCA gene mutation, what impact may his have on my relatives (such as siblings, children, parents)?  

6) If am not married but intend to be – do I want to find out before I get married or after?  

This particular question is likely to be more pertinent to those identifying as Orthodox or Charedi. These individuals may wish to consult their local Rabbi to discuss the views of Halacha (Jewish Law) on this topic.

Is there a right age for testing? 

When it comes to BRCA gene testing, there is no ‘one size fits all’ and therefore there is no right or wrong age to test – as long as the decision to test is fully informed.  

Additionally, age must be considered with the stage of life too. For example, 35-year-old women who has finished having her family may feel differently about testing compared to 35-year-old women who is about to start her family.   

Each individual needs to take time to assess their personal situation and use this to make their decision, irrespective of what others around them may choose.  

Need more help in making a decision?

There is a range of information and support resources available to individuals considering getting BRCA gene testing.  

This is for Jewish individuals living in England and thinking about testing via the new NHS Jewish BRCA Testing Programme.  

Through this service individuals can speak to an NHS genetic counsellor over the phone and without making an appointment 

The helpline is open Mon-Fri 9am-5pm with extended hours until 7pm on a Wednesday 

Phone number: +44 20 3437 6001 

Chai Cancer Care has specialist counsellors who are able to support individuals n making a decision about BRCA testing. They can also support those who have a received a positive test result. 

Visit chaicancercare.org or call 0808 808 4567 

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/→ 

Ovarian Cancer Action is a UK charity that funds world-class scientific research into ovarian cancer leading to innovative treatment and progressive solutions. 

They provide useful information about BRCA via their Hereditary Ovarian Cancer Information hub.  

Visit ovarian.org.uk → 

The Eve Appeal runs ‘Ask Eve’ is a nurse led specialist gynaecological advice service. It is led by Dr Tracie Miles, an oncology nurse specialist who is dedicated to supporting women who are confronted by gynaecological issues. 

Freephone helpline: 0808 802 0019 

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.  

email: brcajourney@gmail.com 

phone: 07714204664 

twitter: @BRCA_Journey 

facebook: brcajourney 

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. 

The National Hereditary Breast Cancer Helpline  is charity that provides help and information for people concerned about hereditary breast cancer or identified as having a breast cancer risk gene fault (such has BRCA). 

It has a range of support forums including one for the Jewish community. The website includes personal stories, factsheets, and an on-line forum. 

helpline: 01629 813 000 

Visit breastcancergenetics.co.uk →