We find out more about The BRCA SA Support Group and why sisters, Wilmari Nieuwenhuizen and Ané Pienaar, started it.
The history of cancer in the family
“Elsie Meyer, our mom, was diagnosed with breast cancer at 42; she was in remission for a few years but got secondary cancer and died at 50 in 2010. It was an aggressive form of cancer and we watched our mom suffer so much. A year before she was diagnosed, our grandfather (her father) was diagnosed with breast cancer at age 75. Little did we know then that her cancer came from my grandfather through the BRCA gene. My mom’s oncologist advised that we (four siblings) get genetic testing done when we were older,” Wilmari explains.
However, at first it was only Wilmari who took the doctor’s advice. “I had been doing research for several years before I went for the prophylactic mastectomy. But there was very little info in SA about the BRCA gene; I got most of my info from overseas sites. It took a while for my sisters to listen to my plea and get tested. Thankfully, Ané’s gynae also advised her due to her having gynaecological problems ata young age. Then later, our eldest sister, Elri, was tested. Perhaps my crazy idea wasn’t so crazy after all as both my sisters are still here. Not because of me but because they became aware of their risk and that they had a choice to do something about it. We are hoping our youngest brother will also get tested in the near future,” Wilmari says.
Wilmari Nieuwenhuizen (35) lives in Pretoria with her husband and two children (6 and 8).
BRCA: Negative
Tested at age 30 in 2016.
Preventative surgery: “Despite testing negative, I still had a bilateral mastectomy with delayed reconstruction. It was an easy decision for me to make; a year after my mom passed away I made the decision that I would have it once I was done having children and breastfeeding.”
Ané Pienaar (36) lives in Pretoria with her husband and two children (6 and 7).
BRCA: Positive
Tested at age 32 in 2018.
Preventative surgery: A bilateral mastectomy, immediate reconstruction and nipple tattooing. “Having an hysterectomy at 32 was an eye opener on many levels. It really pushed me to do the genetic testing that I had been putting off for a while. During my genetic counselling, it was strongly suggested that I have an oophorectomy (removal of ovaries) at age 40 due to the BRCA gene increasing the risk of ovarian cancer too. “
Elri Acosta (39) lives in Argentina with her husband and son (7).
BRCA: Positive
Tested at age 37 in 2018.
Preventative surgery: Nipple-sparing double mastectomy and reconstruction. “I wanted to reduce my chances of going through what our mother did. Not only for myself, but to spare my family of what we went through with her. There is still a tiny chance of breast cancer due to the tissue that was left to supple blood to the nipples, but it is very low.”
BRCA SA
While researching the BRCA gene and the pros and cons of preventative surgery, Wilmari says she felt so alone. It is for this reason why Wilmari and Ané decided to start a Facebook group. “If we could spare someone by educating them on their risk and that they have a choice to do something about it and not necessarily get cancer, we want to. We always wanted to get involve in the cancer community since the passing of our mom and this was our opportunity,” Ané adds.
BRCA SA (previously known as BRCA Previvors SA) is a support group for previvors, cancer survivors, and patients who are currently undergoing treatment, have a strong family history of breast cancer, or who want to join in the cause.
“We have recently merged with Breast Cancer Support Pretoria with the aim of reaching more people. We are in regular contact with the Familial Cancer Centre at Netcare Femina Clinic who refer BRCA positive ladies to us for moral support. It’s become a community of women who are there for one another to support and talk about only what we understand: cancer that a family member had, the BRCA gene, the surgery and life after surgery.