The Human Genre Project

Knowing Who I Am

My body has always had the BRCA 1 mutation. I just didn’t know it until I was tested at age 35.

Learning something about your physical self after thirty-five years is an odd feeling. Your mind starts to go back in time and wonder what it would have felt like to know this about yourself at earlier stages in life. You then start to wonder how knowing this information would have altered the choices you made. Would I have waited so long to get married or had children? Maybe I would not have had children or maybe I would have tried to have my children pre-selected so that they would not inherit the mutation…but at the end of this futile exercise my mind accepts the information as it stands now, and I understand I am who I am.

Having the BRCA1 mutation right now means that at age 36 I no longer have a mother to lean on. Having beaten breast cancer in her twenties she died tragically from ovarian cancer at sixty, after only fifteen months of fighting the disease. It also means that at age 38 I choose to live life without my ovaries and breast tissue. I have silicone breasts instead, in hopes of dramatically reducing my risk and breaking the family curse. This is the curse that took not only my mother, Risa, but also my grandmother Helen, after whom I am named , and my great grandmother Lillian, who was one of 8 siblings of which likely 7 (possibly 8) had the mutation and died or passed the mutation on to other family members who have since died from BRCA cancers.

My two little boys will grow up and one day find out if they too have the mutation. I hope and pray (and ask for my mother’s help from above) that when this day comes there will be better options for them and for others like us.

Heather Fineman is a volunteer Chicago FORCE Outreach Coordinator. FORCE ( is a non-profit organization dedicated to improving the lives of people with BRCA mutations or at high risk for BRCA related cancers. Heather also works as a Patient Support Liaison for Fenner Plastic Surgery ( helping women through the journey of breast reconstruction.

Heather Fineman