The National Hereditary Breast Cancer Helpline

The National Hereditary Breast Cancer Helpline was founded in 1996 by Wendy Watson, at a time when little or nothing was generally known about Hereditary Breast Cancer. How it all began:

Wendy held the first Hereditary Breast Cancer Awareness week to mark the launch of the helpline. This was warmly received by the whole genetic community and supported by the late Princess Diana (click the letter to the right to read). Two genes had at that time been found which, if faulty, conferred around an 80-90% breast cancer risk.

The main aim of the helpline was to ensure that those worried about their family history had access to full information on all the options currently available, referrals where appropriate, and full peer support for whatever option was chosen. Most importantly that those affected had the opportunity to make informed choices. It is also an important role of the helpline to reassure those worrying unnecessarily. To that end the Helpline has been enormously successful, given the feedback over this past 19 years.

From the outset one of the main problems was inequity of service. The Helpline was instrumental in bringing the ‘Management of women at risk’ to the attention of the DoH and in 2006 guidelines were developed and announced by NICE, with representation and approval from the Helpline. The Helpline has also been involved with the current moratorium on ‘Genetic testing and insurance’, and was also active in alerting the government to the worrying situation of the gene patent, which, if allowed to go forward, would have made genetic testing prohibitively expensive for the NHS, thus costing lives.

The Helpline is manned as near as possible 24 hours per day, every day, although an answering service is always available. To date many thousands of calls have been taken worldwide and Wendy has given numerous talks internationally. In 2001 Wendy was called upon to help advise on the launch of a similar incentive in the USA.

Our founder, Wendy, took part in an interview on Radio 5 Live with the lovely Richard Horsley and his daughter Jill Ryder , regrading our first ever genes don’t care what you wear day. Please have a listen by pressing the play button below:

Wendy Watson Helpline Founder

Wendy Watson
Helpline Founder

hrh_letter

Wendy held the first Hereditary Breast Cancer Awareness week to mark the launch of the helpline in 1996. This was warmly received by the whole genetic community and supported by the late Princess Diana (click the letter above to read).

Summary of recommendations on surveillance for women with no personal history of breast cancer

Moderate risk High risk
Age Moderate risk of breast cancer 1 High risk of breast cancer (but with a 30% or lower probability of being a BRCAor TP53carrier) 2 Untested but greater than 30% BRCAcarrier probability 3 Known BRCA1or BRCA2mutation Untested but greater than 30% TP53carrier probability 4 Known TP53mutation
20-29 Do not offer mammography Do not offer mammography Do not offer mammography Do not offer mammography Do not offer mammography Do not offer mammography
Do not offer MRI Do not offer MRI Do not offer MRI Do not offer MRI Annual MRI Annual MRI
30-39 Do not offer mammography Consider annual mammography Annual MRI and consider annual mammography Annual MRI and consider annual mammography Do not offer mammography Do not offer mammography
Do not offer MRI Do not offer MRI Annual MRI Annual MRI
40-49 Annual mammography Annual mammography Annual mammography and annual MRI Annual mammography and annual MRI Do not offer mammography Do not offer mammography
Do not offer MRI Do not offer MRI Annual MRI Annual MRI
50-59 Consider annual mammography Annual mammography Annual mammography Annual mammography Mammography as part of the population screening programme Do not offer mammography
Do not offer MRI Do not offer MRI Do not offer MRI unless dense breast pattern Do not offer MRI unless dense breast pattern Do not offer MRI unless dense breast pattern Consider annual MRI
60-69 Mammography as part of the population screening programme Mammography as part of the population screening programme Mammography as part of the population screening programme Annual mammography Mammography as part of the population screening programme Do not offer mammography
Do not offer MRI Do not offer MRI Do not offer MRI unless dense breast pattern Do not offer MRI unless dense breast pattern Do not offer MRI unless dense breast pattern Consider annual MRI
70+ Mammography as part of the population screening programme Mammography as part of the population screening programme Mammography as part of the population screening programme Mammography as part of the population screening programme Mammography as part of the population screening programme Do not offer mammography

[3] Women with Jewish ancestry are around 5–10 times more likely to carry BRCA1 or BRCA2 mutations than women in non-Jewish populations.

[4] In most cases, this will equate to less than a 3% 10-year risk of breast cancer at age 40 years.

[5] National breast screening programmes: England – NHS Breast Screening Programme (NHSBSP); Wales –Breast Test Wales; Northern Ireland – NI Breast Screening Programme

[6] For the purpose of these calculations, a woman’s age should be assumed to be 40 for a woman in her forties. A 10-year risk should be calculated for the age range 40–49.

[7] At the time of publication (June 2013), tamoxifen did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing and managing medicines and devices for further information.

[8] At the time of publication (June 2013), raloxifene did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing and managing medicines and devices for further information.

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