My mother, my daughter, myself

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When choosing Alamo Breast Cancer Foundation patient advocates to profile this year, I looked for women with different stories to tell, such as Kat Werner's BRCA background and New Zealand's Moana Papa, whose passion is helping the indigenous women in her country. Tomorrow you will read about Sueann Mark, PhD, a sexologist in San Francisco, who began specializing in the sexuality issues of cancer patients after her own diagnosis at 34. Then you will read about Rochelle Schoretz, who founded Sharsheret, the national organization for young Jewish women with breast cancer.After writing up the day's profile and interviewing Sueann, I attended the Alamo Breast Cancer Foundation Hot Topics session when mentor physicians go through the days' presentations and summarize the high points. I glanced around the room during the discussion and was amazed at the number of young women. At past SABCS meetings, it didn't seem there were this many. After the Hot Topics session, I attended a survivorship panel focusing on young women with breast cancer that was moderated by Olympic gold medal winner Scott Hamilton, who was diagnosed with testicular cancer in 1997. I give you this blow by blow of my day to take you to that moment when I was digesting all the information as I headed back to the hotel at the end of the day. First I realized that I had chosen mostly young women to profile. As I considered this, I felt something tugging at my subconscious.Rochelle was diagnosed at 28. My daughter Kirtley is 25. It stopped me in my tracks. When I was diagnosed in 1986 at age 37, Kirtley was a year old. What kept me awake at night was the fear I would not live to raise her. As the years passed, the fear subsided. Then in 1991, five years to the week after I was diagnosed, my mother was diagnosed with metastatic breast cancer. She died six months later. Kirtley was 6.Her death and the growing awareness of genetic predisposition to breast cancer brought my focus once again to Kirtley. Would I live to see my daughter get breast cancer? The fear I had felt in the past for her was about losing me. This fear was for her life, and I connected for the first time with my anger at this disease and the snail's pace we have made in understanding why women get breast cancer. Because Kirtley was only 6 when my mother died, it was easy to put my fear for her on the back burner. It came up again when I was diagnosed with DCIS in my other breast in 2007. I had decided to be tested for the BRCA genes when Kirtley graduated from college, feeling she needed to be 21 to make a decision on what to do if I tested positive. My ductal carcinoma in situ (DCIS) diagnosis caused me to move that date up a year. Luckily I was negative for both genes. But, as the genetic counselor pointed out, we are part of a familial cluster of some kind; it just hasn't been found. That was three years ago, and again I was able to put my concern for Kirtley on the back burner. Now the reality of my daughter's risk is again hitting me. I know that young women are still at much lower risk for breast cancer, but that does little to lessen my concern. Luckily I have a daughter who is taking good care of her health. She now has her own gynecologist in New York who took her history and then immediately asked her if I had been tested.I am also going to suggest to Kirtley that she join the Love/Avon Army of Women – and look at the possible studies that are giving us more information about every aspect of breast cancer, including undiagnosed women and prevention. Dr. Susan Love talked about the army this evening and noted that more than 44,000 women have joined clinical trials through the army I also suggest all of you join.(You can view our interview with Dr. Love on prevention and Army of Women here).