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There is more than a little irony that the death of Elizabeth Edwards coincided with the beginning of the most prestigious breast cancer symposium in the world. “The death of Elizabeth Edwards underscores why we’re here,” said one of the first speakers at the 33rd Annual San Antonio Breast Cancer Symposium (SABCS). “We are winning the battle on breast cancer!” Tell that to Elizabeth Edwards’ family, I thought. I don’t think they would agree with that, and after sitting through five days of this symposium, I’m not sure I agree with that statement either.
I was fortunate enough to have crossed paths with Elizabeth Edwards a couple of years ago when I asked her to write an essay for my book, “The Breast Cancer Sisterhood: A Guide to Practical Information & Answers to Your Most Intimate Questions.” I identified with her on many levels: we were the same age, daughters of military pilots who, as Elizabeth said, “Gave us the ability to reach out to others and make life-changing connections.” We were diagnosed and began treatment about the same time and were professional women who’d been married to powerful men who’d let us down. To say Elizabeth Edwards was “amazing” would be an understatement.
At the SABCS, I interviewed Dr. Lisa Carey, Elizabeth Edwards’ oncologist for the last five years. “She uniformly demonstrated grace under the worst of circumstances and a remarkable desire to use her misfortune to help others,” Dr. Carey said. “Like many people, I was often surprised and always impressed by her resilience, which was as evident in private as it was in public.”
“One of the first things Elizabeth did as a newly diagnosed breast cancer patient was to participate in a clinical trial in which tumors were collected so that scientists could try to understand why some cancers respond to treatment, while others do not,” Dr. Carey said. “Her life was marked by many such acts of selflessness, but I mention this one in particular because only through this kind of partnership between patients and researchers will we finally end cancer.”
There wasn’t as much good news at this symposium as I’d hoped for, plus there was a significant lack of psychosocial research that addressed areas like depression and sexuality. Here are some of the understandable bits and pieces I’ve managed to cobble together from a small sampling of five days of nonstop presentations. Keep in mind I’m just a layman with chemo brain, so forgive me for the things I’ve missed and/or misunderstood:
• Duration of survivorship with metastatic disease is increasing.
• A new cytotoxic, Eribulin, is on the scene.
• Biomarkers may predict how well drugs work in patients and compare different drugs to each other more quickly.
• Stress reduction may reduce recurrence by 20%.
• PARP Inhibitors may be a new way to target & repair damaged DNA in BRCA1 and 2.
• Circulating tumor cells can be a useful tool in metastatic breast cancer.
• Re-biopsy should be a part of metastatic evaluation so you know what you’re treating.
• HER2 has an increasing number of treatment options which have the potential to become too complicated and expensive for patients.
• Obese women and those with positive lymph nodes have higher risk of recurrence.
• One third of estrogen positive early breast cancers returns.
• Many oncologists view genetic testing as a hassle.
• 70% of doctors don’t understand genetic testing implications for the patient’s family members.
• Best outcome for women carrying BRCA genes is a mastectomy at age 25 and oophrectomy at 40.
• “Beam me home, Scotty!” Breast cancer tumors may send out signals that attracts growth mechanisms.
• We don’t know the difference between cure and dormancy.
• 65-70 percent of American women with metastatic breast cancer will spread to the bone.
• Avastin costs $90,000 a year, per patient, and does little to stop early or locally advanced breast cancer.
• Women with breast cancer need to pray and hope they’re one of the genetically lucky ones who’s cancer doesn’t metastasize.
Over the course of the San Antonio Breast Cancer Symposium, I’ve been hoping to hear something in plain English that would tell me where the war on breast cancer stands, hoping to hear that Elizabeth’s death and the deaths of everyone else has not been in vain. Elizabeth Edwards was more than a sister in our fight against breast cancer. She was the face of hope for everyone who’s experienced a devastating loss or a serious illness. In many respects, we lost part of our hope when she died, but like Elizabeth, I think most of us are resilient. We must embody some of her courage and move forward, regardless of what the statistics say, or maybe because of what the statistics say. I am going to leave you with some advice Elizabeth gave to me:
“Cancer doesn’t have us. We have cancer. Cancer doesn’t own us. We own us. We decide how we are going to face this disease, how we are going to live each day. Inspired by my marvelous family, by the doctors, the nurses, the technicians, the caregivers, and most of all by my brothers and sisters in this struggle, I decide that today I am alive, and I decide not to waste today worrying about tomorrow.”
