Genetic Mutations in the Family
Denise Portner is a breast cancer survivor, a two-term board member of Living Beyond Breast Cancer, and senior vice president at SteegeThomson Communications in Philadelphia. In this contribution to Living Beyond Breast Cancer’s 25th Anniversary Blog Series, Denise describes the feelings the number 25 engenders for parents of daughters who have genetic mutations in the family.
Living Beyond Breast Cancer is celebrating its 25th Anniversary in 2016 and as a board member, I couldn’t be prouder of the organization. Still, I must confess that amidst the planning, the number 25 has been weighing on my mind and generating a whirlwind of emotions.
You see, our daughter turned 25 in June, precisely the age doctors recommend that she be tested for the BRCA2 mutation that my mother, my aunt and I carry, the one that led all three of us to have breast cancer.
First diagnosed at age 60, my mother developed metastatic breast cancer at 75 and today, nearly three years later, she is managing fairly well on a series of medications. But the disease has taken a toll on her health, and some days, on her spirit. Her sister, seven years her junior, also received a diagnosis at age 60, and thankfully, following treatment and surgery, is doing well a decade later.
As for me, I was diagnosed in June 2009 at age 46, just before my daughter's high school graduation. After my mother's recurrence and my aunt's diagnosis, we underwent genetic testing and learned that we all carry the BRCA2 gene mutation, which put us at an increased risk of breast and ovarian cancer (and which will increase our son's risk for prostate cancer if he carries the mutation. His testing is recommended at age 30).
I've had the full tour -- surgery, chemotherapy, radiation, reconstruction, and now hormonal therapy to prevent recurrence. Through it all, LBBC has been a resource, answering questions, connecting me with experts for second opinions, anticipating my concerns in webinars, guides and newsletters. They trained me to be a Helpline volunteer so I could use my experience to support women like the one who called from Alabama and told me I was her first-ever contact with a survivor. At the annual fall conference, a presentation on intimacy and sexuality made it so I didn't have to ask. If I could wave a magic wand (or get a massive grant), everyone diagnosed with breast cancer would receive LBBC’s Guide for the Newly Diagnosed before leaving the oncologist’s office.
Every May for the past five years, I’ve helped organize a yoga team for the Reach & Raise fundraiser. On a peaceful Sunday morning, I am able to look out on the steps of the Philadelphia Museum of Art and beyond, where I see thousands of people gathered to acknowledge where they are in the breast cancer experience, to be there for each other, and to revel in a community who understands. The best poses are the ones in when we link arms and discover there are moves we can do together that we’d never achieve solo.
The Forever 25 Team at Reach & Raise: Yoga for a Reason, May 2016
The secret of LBBC's success is not only what it has provided to women and their families in need, but what it has allowed us to give to others. When you have gotten through a treatment milestone or are consumed with worry about your future, it’s therapeutic to be able to get outside yourself by helping someone else, whether by making a call, writing a blog, or raising funds.
This summer, 25 years after the founding of LBBC, our daughter is living in Manhattan, getting used to a new job and a new apartment. She’s dating, and trying to figure out her direction in life. It’s not a great time for her to think about, and maybe face, a risk for breast cancer. But she's a tough one, and is willing to figure it out and do what needs to be done. She has seen her mother, grandmother and aunt go through testing and treatment. Thanks to LBBC, she knows there are women of all ages with whom she can connect, no matter the outcome.
So as we mark LBBC's 25th Anniversary, I'm overcome with gratitude for my health, concern for my mother's future and angst over my daughter's forthcoming testing. The age of personalized medicine is most definitely not for the faint of heart.
One thing I learned during treatment, however, is that you can manage almost anything if you feel you're not alone. And as long as LBBC is around, no one affected by breast cancer -- whether in our home base of Philadelphia or in the rural counties of Alabama-- is alone. In person, on the phone or online, someone is there with knowledge and compassion.
At 25, that surely is something to celebrate.
Denise, her mother and daughter.
Interested in telling your story as part of our 25th Anniversary Blog Series? Contact Kevin Gianotto at firstname.lastname@example.org.