The decision to have your healthy breasts removed because of a high risk of cancer is not an easy one. Catherine Scott speaks to a woman who has done just that.
“Agreeing to surgery wasn’t easy but I had no doubt it was what I had to do,” says Louise Birdsall about the difficult decision to have her healthy breasts removed in order to potentially save her life.
Louise, 48, has the inherited BRCA gene mutation which means she had an 85 per cent of developing cancer unless she took radical action. In her case, this meant having a double mastectomy, reconstruction and possibly having her ovaries and uterus removed.
“We make choices every day, often not really giving them much thought. This was different. I was perfectly healthy. Making this decision would mean major surgery and it would take a long time to recover. It would lead to changes in the way I looked, how I perceived myself as a woman, and it would affect my family as I would be unable to carry out the simplest tasks and wouldn’t be able to drive for weeks,” says Louise, from Collingham, near Wetherby.
“I talked to my husband, family and consultants who were all fantastic, but I was the one who had to make the final decision. In the end I told myself that I just had to get on with it. I had an up to 85 per cent risk of developing breast cancer and up to 30 per cent chance of getting ovarian cancer. Luckily I now had the opportunity to reduce my risk of developing these cancers.
“There are moments when, even though you have a great support network around you, you feel alone. It’s your body and at the end of the day you are putting yourself through major surgery.”
Louise, who supports Yorkshire Cancer Research, has decided to talk about her experience to raise awareness during Breast Cancer Awareness month. Despite her mother, grandmother and great grandmother all having had breast or pancreatic cancer during their lives, in the end she had to pay for the test to see whether she had the gene mutation.
Louise found a lump in her breast during her 20s which was benign but meant she was screened annually through the Family History Breast Team at St James’s University Hospital, Leeds. However, BRCA gene mutations had not yet been identified by scientists. But following their discovery in the mid-1990s, Louise was referred to a genetic counsellor after BRCA testing became available through the NHS, but she was told she was not eligible.
In 2009, Louise was referred for genetic counselling again, but still wasn’t eligible.
“They use a scoring system to determine eligibility for the BRCA test and I couldn’t reach a high enough score, even though there were three women with breast cancer in my immediate family and one had pancreatic cancer as well. Because my mum was still alive at that time and the death certificates of my grandmother and great grandmother didn’t say cause of death was breast or ovarian cancer my score was too low.”
Things changed when Louise lost both her parents to cancer. Her father died in 2012 from secondary liver cancer, which was likely to have started in the pancreas. Two years later, her mother died of secondary brain tumours, which were believed to have spread from either the breast or pancreas.
She decided to ask for the BRCA test again. If she did have the BRCA mutation, she would need to decide whether to have chemoprevention, which could have side effects, or undergo preventative surgery.
“It was so hard losing my parents as I was so close to them and they meant the world to me. I couldn’t stand the thought of being in their position and having to leave my family.
“Ovarian and pancreatic cancers are hard to detect and screen for. I was worried that if I did have the BRCA mutation I could be diagnosed with cancer at a late stage when it would be more difficult to treat.”
But she was told she still wasn’t eligible for the BRCA test.
“Not having my mum to talk to about it was extremely hard. But I knew I didn’t have a choice but to have the preventative surgery. Chemoprevention was not an option for me.”
In December last year, Louise decided to pay for a private BRCA test. “If I was not BRCA positive then I would continue being screened before rushing into (preventative) surgery, but if I did have the mutation then the result would move things along more quickly. Knowing I had the BRCA fault would confirm I was taking the right course of action,” she says.
“It was a strange and quite unsettled period for me as I waited for the results to come back. When I got the call confirming I had the BRCA2 mutation it made all the hypothetical conversations real. Choices needed to be made.
“I felt an overwhelming sense of guilt in case I had passed the gene on to my boys, but the genetic counsellor from the private testing company explained that my decision to get tested meant that they would be automatically tested when they were older. They told me that knowledge is power, and knowing about the mutation could ultimately save the lives of not only my children and future grandchildren, but also my siblings and their families, too.”
In March this year Louise took the difficult decision to have her healthy breasts removed.
“I do feel different. I try to look at the positive, but I’ve had days when I’ve felt down. However, it does get better. My husband said when he saw me after the surgery it was like a weight had been lifted off me. My risk had been significantly reduced.”
Louise has delayed having her ovaries, fallopian tubes and uterus removed while she recovers. “It’s been very emotional. I know my parents wanted me to have this surgery, to have the choice that others have not had. I have no regrets.”
BRCA genes are known as ‘tumour suppressor genes’. They repair damage in cells and prevent them from growing and dividing too quickly. If these genes don’t work properly, cancer can develop. Women with BRCA mutations are significantly more likely to develop breast or ovarian cancer than women without the mutations. There is also an increased risk of pancreatic cancer and melanoma. There are a number of options available for women with a positive BRCA result.
If you have a family history of cancer and you’re worried speak to your GP. You can also find support on Facebook by searching for BRCA1/BRCA2 and High Risk Support UK or through yorkshirecancerresearch.org.uk