Two Northamptonshire women have shared their experiences in a bid to raise awareness of the dangers of hereditary breast cancer.
Hereditary breast cancer could be responsible for up to 10 per cent of breast cancers, but awareness is still very low among women worldwide despite some high profile celebrities like Angelina Jolie having preventative surgery themselves.
Anita Care, designers of post-surgical lingerie and swimwear, is sponsoring a journal for the National Hereditary Breast Cancer Helpline featuring 12 women who have all had risk-reducing breast surgery because they are carriers of a hereditary faulty gene (most commonly BRCA1 or BRCA2) which leaves them with an 80-90 per cent chance of developing breast cancer.
They have all lost mums, sisters, aunts or other close family members to the disease.
Among the 12 women featured in the journal are Kelly Brawn of Corby and Louise Rowe of Pipewell.
The journal will be used by the charity as a tool for newly diagnosed women to record their own journeys as they make decisions about how to proceed with the news that they are carrying one of the faulty genes.
There is a lot of confusion about the BRCA1 gene and other mutated genes but the simple facts are that if you are a carrier of the faulty gene (a blood test will confirm if this is the case) then you have an 85 per cent chance of developing breast cancer.
It is a hereditary gene that can be passed through the mother or the father and of course having a mastectomy means that the risk is massively reduced so more and more ladies are making the brave decision to undergo surgery in order to avoid developing cancer later on.
Anita Care has launched the journal during October, Breast Cancer Awareness month.
My name is Louise Rowe, I’m in my early 50s, full of life and fabulousness. I’m a hugely positive fun-loving person, relatively fit and happily healthy. Last year I married for the first (and last) time. I have a twenty-eight-year old son, two fluffy dogs and a great bunch of friends.
I lost my mother and two aunts to breast cancer. Mum was 61 when she died, her eldest sister just 37 and this year her youngest sister died aged 76.
For two generatons every female member has had breast cancer; I am no exception. I was 40 and looking down the barrel of a breast cancer diagnosis.
I had known that the BRCA 2 gene mutation was in the family, but I had decided not to get tested. (It was a relief when I was tested and found to have the gene.)
Clearly I got through the cancer (lumpectomy, lymph node removal [it had spread], chemo, radio, Zoladex, Arimadex) and I learned to look forward not back.
But in 2012 my BRCA diagnosis was back in the spotlight. I opted to have my ovaries removed and two years later at The Genetics Unit at the Royal Marsden, London, we agreed that my only true option was to have a nipple- sparing double mastectomy with immediate reconstruction. To me, it was like jumping from a plane with four main parachutes and 16 reserve chutes for extra insurance.
I had the operation that summer (I was only in hospital for the one night). Unfortunately, my ‘naughty boob’ (the one that had cancer) rejected the implant. An expander replaced the implant. Again naughty boob rejected it.
It was emoved and for a year I only had one boob. I changed surgeons and went locally to Mr Musa in Kettering. He was the one who gave me the two-boob look by inserting a different expander which my body, at last, accepted.
I am happy with the results, although I don’t envy anyone making the decision, but I feel that no woman should be defined by her boobs.
I didn’t have counselling as, for me, the decision was simple: I was reducing the risk of breast cancer returning from 80 per cent to two per cent. It was a no-brainer. To have done nothing would have taken more courage than undergoing my operations.
Kelly Brawn introduced me to the helpline in 2016 and I wanted to help immediately. The message has to get out there that some breast cancers are heredity, it can be passed down through the male and female lines and if there is a multiple history of breast cancer in your family, you need to check it out. Radical surgery isn’t really that bad, I miss my real boobs but I’d have missed my life more. And my husband, my son, my two fluffy dogs and my great friends would probably miss me too.
My name is Kelly Mary Theresa Brawn and I am 38 years old, married with two lovely boys.
My mum passed away in 2000 from ovarian cancer having beaten breast cancer 12 years earlier. We didn’t know anything about hereditary breast cancer until I received a letter out of the blue from Addenbrooke’s in 2004 telling me that Mum had a BRCA1 gene fault and that they would like me to go in for tests. I was shocked at this news and underwent some counselling with the genetic counselling team before going on to be tested.
The tests confirmed that I too was carrying the gene fault. We now know that the gene has affected at least three other family members including my cousin.
Back in 2004/05 there was not a lot of information available on hereditary breast cancer. My genetic counsellor advised that I should just have regular checks and MRI scans which I did. Over the following six years I began fundraising for breast cancer charities to spread awareness of the BRCA gene. I did the Moonwalk, The New York Marathon and the Great North Run among many others.
I found the helpline in 2010 and Wendy and Becky were very supportive to me throughout my experience.
I finally had a risk-reducing double mastectomy with reconstruction in 2016 after having my two wonderful boys. It was hard for my eldest son Xander who had to adapt to me not being able to pick him up for a while and who still asks me today if I am OK now I have had my operation. I did this for my boys and my family’s future. I also set up a Facebook group called ‘My BRCA1 Boobie Journey’ to share my story with others and hopefully get the message out there. The experience has been daunting and I am still recovering emotionally from the whole journey but I have made some good friends along the way and the idea that I might not be around to watch my boys grow up was totally unacceptable to me so I don’t regret the surgery one bit.
Although it is not scheduled yet I will also have my ovaries removed at some point in the future to reduce the risk of the gene fault causing ovarian cancer.
IF you have a solid link of breast cancer in your family ie: mother/father/sister then please don’t let your GP say no to a test for a hereditary gene.
If you can’t get help from your GP then call the helpline (01629 813000) and Wendy and the team will advise and guide you through the process.