Tuesday, 16 October 2012

National Hereditary Breast Cancer Helpline

As I've already mentioned, my mum was diagnosed with breast cancer at just 36 years old. This is quite young and if you have a first degree relative who was diagnosed with breast cancer under the age of 40, you are considered at moderate risk of developing the disease yourself - the odds are 1 in 3 to 1 in 6. My sister and I will both have regular mammograms from the age of 35 - the usual age is 50. 

In 2008 I received a letter from my local health authority asking if I was interested in genetic testing to find out if my mum had carried one of the known gene faults which predisposes a person to breast cancer. If she carried one of these gene faults it would be wise to test my sister and I too, to see if we'd inherited it. At the time I thought 'no thanks, I'd rather not know'. Ignorance is bliss, I thought, and I tore the letter up and forgot all about it.

About six months later I happened to see a documentary by Dawn Porter called 'My Breasts Could Kill Me'. Matt and I watched aghast as it transpired that Dawn's mum died of breast cancer aged just 36 and Dawn was to undergo genetic testing herself as her mum hadn't left a blood sample for testing. If she had inherited the genetic fault, she would be a 'high risk' - giving her an 80-90% chance of developing breast cancer herself.

It seemed ridiculous that I had been given a chance to get ahead of the game and I hadn't taken it. The information I'd been given in the letter had been so minimal, I hadn't fully understood the implications. An 80-90% chance of developing breast cancer?? My mum had left a blood sample specifically for the purpose of genetic testing and I had chosen not to use it. I was so angry with myself.

The documentary featured a woman called Wendy Watson, who had been identified as carrying one of the genetic faults herself and had undergone a preventative mastectomy in order to minimise her chances of developing the disease - the first woman to do so. Her daughter, 24 year old Becky Measures had also tested positive for the gene fault and had undergone preventative surgery and reconstruction.

Wendy founded the National Hereditary Breast Cancer Helpline - a charity which provides a helpline for men and women who have been identified as carrying the faulty genes and those who are interested in genetic testing. The Helpline exists to provide 'peer support' - advice and support from people who have actually experienced genetic testing and counselling and in many cases, have undergone preventative surgery. They don't just know all the facts and statistics - they understand the feelings, fears and confusion too.

I contacted the Helpline, spoke to Wendy and Becky and they helped to get me started on the long road of genetic counselling. I wanted to be more involved with the Helpline and began to train as an advisor so that I could help to relieve the burden that Wendy shouldered - she had manned the Helpline 24 hours a day since 1996. There isn't a moment, day or night, that you can't call the Helpline and speak to her - I know, I have spoken to Wendy whilst she has been shopping in Morrisons!

I attended a seminar on familial breast cancer at NOWGEN in Manchester and met Wendy, Becky and many other dedicated volunteers. Most of the women I met had been through preventative surgery and reconstructions and I was gobsmacked by how happy and positive they all were. These women were fighters. It was inspirational.

Sadly, before I got any further with my Helpline training, my grandma was diagnosed with cancer of the oesophagus. I'd already lost a grandparent to cancer, as well as several of his siblings and, of course, my mum. It it hit me hard and I decided to take a step back from the Helpline as I didn't feel I had anything positive to offer anyone when it came to cancer. I felt like it was stalking my family and I didn't want to project my pessimism onto anyone else.

The Helpline has gone from strength to strength. Last year Wendy won Tesco Magazine's Mum Of The Year award and published her book I'm Still Standing which tells her story. There are now regional support groups and a group for under-25s which hold regular meetings and the Helpline's first charity shop opened just a couple of weeks ago.

Wendy is an amazing woman - she has gone to extreme lengths to fight for what she believes in, not just for herself but for every other person out there whose family has been affected by breast cancer. It is down to Wendy that genetic testing is available on the NHS and it is because of her that preventative surgery is an option. In 1997 Wendy sold her farm to fund her fight to keep the two breast cancer genes from being 'patented', she challenged a multi million pound coordinated lobby in the European parliament and won. Testing by the company that own the patents in the USA, where the genes are patented, costs three times as much as here in the UK - stopping the patent has saved £millions for the UK. Wendy Watson vs Myriad Genetics is now a teaching module/round table discussion in America!

If you have any concerns about hereditary breast cancer you should visit the Helpline's website (click on the logo above) for more information and contact them if you need advice, help or support. I can't stress enough how lovely and supportive they are, if you're concerned about familial breast cancer they are the people who will understand and can help you.


  1. This is an amazing post showing the true generosity of some people. Not matter what life throws at them, they get back up and do better things with their life.

    On my blog I have a Day Zero Project, and I have said to myself for every task I fail to complete £10 will go to charity. This post has inspired me to donate my money to Cancer Research UK, specifically Breast Cancer charities.

    An inspiring story of both yours and Wendy's. I hope you complete your training!!

    N x

    1. Thanks Nicola, what a great idea ref the donations. I will be adopting that myself :-) xx

  2. Such a beautiful piece of writing, thanks so much for sharing it with me. Brought a little tear to my eye (not good when I'm i the office :D), but today's and important day in my family's fight against breast cancer, as my Grandma is having a double mastectomy today.

    I too was like you, when my mum was diagnosed with breast cancer I got asked if I wanted to be tested for the gene, but decided to play ignorant and let life leads its course, but now that my grandmas has Breast Cancer also, I have read up more on the subject and like you am shocked at how much your odds increase if you do have the gene, so have decided to be genetically tested. I'm yet to make the appointment with my doctor, but plan on doing so soon.

    If's a scary thought and process, and something that is forever in the back of my mind, but charities like this are what makes it easier for girls like us.

    Thanks you sooooo much for sharing this darling :D xxxxx


    1. All good wishes to your grandma today Cat. You're absolutely right, it's scary to have to face these things but forewarned is forearmed, there's a wealth of information and help out there for you. If you need ANY advice or help in arranging your genetic testing, DO contact the Helpline - they can arrange all this for you. And if you ever want to chat about any of it just drop me a line. I'll be thinking of you xx

    2. Thanks so much lovely, it's nice to know I have someone to talk to :D xxxx

  3. I found this blog post truly inspirational. You are so strong, best wishes! x x


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