Extending the care continuum
By Dawn Stapleton
Dana-Farber is well known for providing cancer patients with the best care available today, while also developing cures for tomorrow. Yet many people are unaware that this support begins even before a diagnosis is made, and continues long after survivors have finished their medical treatments.
In the fall of 2005, Nina Manolson tested positive for an abnormal BRCA1 gene, which increases a woman's lifetime risk of developing breast cancer to 50 to 85 percent and ovarian cancer to 40 to 50 percent. Having a strong family history of women's cancers — her grandmother died of ovarian cancer and her aunt of breast cancer, and her sister and cousin are both breast cancer survivors — Manolson says her sister "made her" schedule an appointment with the Friends of Dana-Farber Risk and Prevention Clinic when yet another cousin was diagnosed with the disease.
A 42-year-old mother of two, Manolson was still breast-feeding her youngest at the time she consulted Judy Garber, MD, MPH, the director of the clinic, and Kathy Schneider, MPH, a genetic counselor. They discussed removing her ovaries and possibly her breasts — drastic but effective preventive measures for women found to carry the gene mutation.
"The choices really felt like non-choices," says Manolson, who took a year to think and mourn before deciding to have her ovaries removed last fall. "The genetics piece is mind bending. It's strange to take action from a place of being very, very healthy and taking off healthy parts."
For her, the decision-making process was deeply private. Though she considered attending a support group, she never did. Then, Schneider asked her to speak as part of a patient panel at the "Looking Back, Facing Forward: 2006 A Day for Patients and Families" conference, which is held at Dana-Farber every other year.
"The conference was a big shift for me," says Manolson. "It was the first time I was in a room with others who were affected by the disease, and it made the abstract concrete. I was part of something instead of separate. Interacting with the other women and hearing their stories was both overwhelming and powerful."
- Next: Connecting on different levels
- Page: 1 | 2
