It’s always good to remind ourselves of the real life risks of breast cancer during Breast Cancer Awareness Month. For me, getting out on the streets in October is so uplifting when I see the collectors dressed in their vibrant pink outfits, banded together and eagerly chatting to passersby. Not only are they fundraising for one of the biggest ‘killer diseases’ in New Zealand, but they are also spreading awareness and reminding us to – check our boobies!
So lets for a moment shine a light on the 10% of breast cancers which are ‘inherited genetic breast cancers’. Why? Because those breast cancer gene carriers are able to drastically reduce their risk through preventative surgeries. In other words – stop breast cancer and ovarian cancer before they arrive!
I reached out to Mollie Erskine, Health Educator at NZBCF, and asked her to update me on her latest publishings relating to genes and inherited breast cancer information.
“The field of genetics is expanding and holds a very promising future. If you are tested positive for a gene associated with an increased risk of breast cancer you now have the power to make an informed decision.”
Read more about it here: What I need to know about genetic risk of breast cancer?
Closing note from Erskine’s story: To find out more you can watch our latest webinar: Genetic Risk of Breast Cancer, or ring our 0800 BCNURSE line. If you already have a confirmed mutation, you may also want to take a look at the New Zealand Familial Breast Cancer Study.
Every now and then I come across a story about BRCA that I really want to share on my blog, and this is one of them.
Last week at The Basser Centre, New York City, there was a BRCA storytelling night where 4 speakers joined to offer their own candid experiences with the BRCA Mutation. Read about it below…
Evening of Storytelling Speaks to Future of Cancer Research
BY BRITTANY LOVELY - PUBLISHED OCTOBER 09, 2018
“There are a few aspects of this story that are a bit unsettling. I’m sorry about that, but I’m not going to pull any punches, it’s a real story and if it’s going to be told, it has to be told the way it happened.”
This is how Rob Sorin opened his story at the “An Evening of Storytelling” event, presented by the Young Leadership Council (YLC) of the Basser Center for BRCA, part of Penn Medicine’s Abramson Cancer Center.
The room of sponsors, family, friends and colleagues were treated to a night of personal stories from three individuals touched by BRCA mutations. Each speaker touched on their personal journeys as a mother, a caretaker, and a single woman embarking into the dating world post-preventative surgery.
Each story was laced with humor and heartache, but they all spoke to the promising future that research will provide for future patients and the newly BRCA-positive population.
The Caregiver’s Perspective – 1 man’s BRCA story
Sorin told his own story from a caregiver’s perspective. His wife’s journey began in the early days of the BRCA discovery. A lawyer by training, Sorin found that his workplace skillset came in handy taking on the role of researcher.
“I was going to handle the mental task of being the advocate, doing all the research,” he said. “(My wife) was going to fight the physical battle. I was going to push her doctors to think about her case individually.”
Plowing through pages and pages of the latest research, at the time, gene testing was not on doctors’ radar. Though expensive and not covered by their insurance, it was a no brainer for Sorin and his wife to pursue since it could inform a new course of treatment. After chemo, Sorin’s wife, Helene, was scheduled for surgery.
Then, on a normal Tuesday morning, Helene went to work on Wall Street and the Towers fell mere hours later. Sorin remembers thinking, “I spent the last eight months doing everything I could to save her and for the next eight hours I thought I had lost her.”
Helene made it out of lower Manhattan, having ensured that everyone from her floor got out first. Her surgery was one week later.
He mentioned that while the role gave him a sense of control, of being part of the solution, as a caretaker he needed support as well. “I felt it was my responsibility to be positive and always offer a pep talk when Helene was scared. But I think as a spouse my fear was no less intense than Helene’s,” Sorin said. “I decided to see a therapist who was an expert in this area. However you can, I think it is very important for a caregiver to have a caregiver.”
Helene went on to carry the torch in the Salt Lake City Olympics and live for 12 years cancer-free. A self-identified lump led to another malignancy, a case so rare, doctors made a case study of Helene’s second fight with the disease.
After beating the disease for a second time, Sorin and his wife discovered the Basser Center. Their daughter, Jenny, decided to have her genetic counseling at the center and discovered that she is positive for the BRCA mutation.
“Unfortunately, cancer is complicated and there is an art to fighting it. The good news is that the science is growing and the art is shrinking,” Sorin said.
As Jenny begins her journey living with the BRCA mutation, Sorin says that his role as a caregiver has shifted. “Jenny needs to be empowered as a young adult to make her own decisions about her body. I’ll always be there and offer advice if she should ask, but ultimately, she will decide what is best for her. Most importantly, Jenny has knowledge and knowledge is power. Jenny has choices, and hopefully with more advances from Basser she will have more choices.”