When she was just 36 years old, Sarah Saphier was told she had the BRCA1 gene mutation. She was given a 95 percent chance of developing breast cancer in her lifetime and a 70 percent chance of developing ovarian cancer.
Sarah, a mobile hairdresser, made the difficult decision to undergo a double mastectomy, hoping that the preventative surgery would keep breast cancer at bay and allow her to live her life without worrying so much about cancer.
After her surgery, Sarah felt much more confident about her cancer risk. In fact, she even canceled a life insurance policy that would have paid out in the event that she was diagnosed with cancer. And she went on with her life.
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But in April of 2014, while she was taking a shower, she performed a self-exam on her remaining breast tissue and felt a lump the size of a pea in the middle of her right breast.
Sarah went to see a doctor and was diagnosed with an aggressive type of triple-negative breast cancer.
“When I found the lump, I could not believe it. I was absolutely devastated,” says Sarah. “I felt like I’d put myself through massive operations and reconstructions – all for nothing.”
Sarah was given a few treatment options, but she ultimately opted to have her double mastectomy redone, followed by chemo. Medical advances over the last several years had enabled surgeons to remove more tissue than they were able to in her first mastectomy, hopefully making the surgery more successful.
Then, the day before her 47th birthday, Sarah started a chemotherapy regimen.
“It was horrendous. Chemotherapy nearly killed me,” she recalls. “I lost all my hair and had absolutely every side effect – sickness, diarrhoea, fatigue.”
Now, however, five years after her cancer diagnosis, Sarah is cancer-free, and the doctors say it’s unlikely to come back.
A case like Sarah’s is rare, but it can absolutely happen. Double mastectomies can lower a person’s risk of developing breast cancer, but they cannot completely prevent the disease.
“I was the third person in the country to develop breast cancer after having my breasts removed – they now call it risk-reducing, not preventative,” says Sarah. “Now, after seeing what I went through, I want my sons to know if they’ve got a high risk.”
Sarah, now 53, is campaigning to raise awareness for the genetic risk of breast cancer for both men and women in every way she can, and she’s hoping to have her sons, ages 16 and 18, tested for the BRCA1 gene mutation within the next couple of years.
“I want my boys to get tested, and, when they’re both of age, they will do it together,” says Sarah. “Men don’t realise that they can get breast cancer or tend not to check their breasts. My boys – if they have the gene – have a higher risk of getting breast cancer, and I also want them to be tested in case they have daughters. After seeing what I went through, I think they’d want to know if they’ve got a high risk. I always say knowledge is power.”
BRCA gene mutation testing is something that people tend to consider as only being important for women, but Prevent founder and chairman Mr. Barr stresses that it can be vital for men as well in certain situations:
“Men should be tested for the BRCA1 gene as well – especially if they have daughters – as they have a much higher than average possibility of getting breast cancer, and a higher than average risk of prostate cancer.”
Mr. Barr also stresses that it’s extremely rare to get breast cancer after a risk-reducing mastectomy surgery. “There are hundreds of women in the UK who have had risk-reducing mastectomies, and it doesn’t eliminate the risk 100 percent. There are now a handful of women who have gone on to develop breast cancer – it’s very unusual but it can happen.”
People with the BRCA1 or BRCA2 gene mutation who are considering a double mastectomy should know it is still possible to develop breast cancer, but it should not be a large influencing factor in the decision, since it is so rare.
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