The first time I had breast cancer it was 1996 and I was 46. It was so frightening because I thought I was going to die. The stress of this was heightened because I knew nothing about breast cancer. I was someone who made an effort to avoid reading or learning about cancer. As though this would protect me from getting it.
My husband and I had to have a crash course in breast cancer in order to be able to understand the recommendations of my doctors and to make informed decisions. The book that was the most helpful was “Dr. Susan Love’s Breast Book.” She frequently updates it in new additions so when I was diagnosed again at 60, her information was up to date.
Fortunately the cancer was very small and I just needed a lumpectomy and radiation. After my surgery, I went to a support group. People were very friendly. When it was my turn to speak, I remember saying over and over, “I’ll never be the same, I’ll never be the same.” And this young man sitting next to me, who also had cancer, said “No, you’ll be better.” My eyes filled with tears from his warmth and kind words.
I’ve been a therapist for 30 years, first working in mental health and for the last 15 years I’ve been Clinical Director of The Breast Cancer Survival Center and leading support groups and co-leading retreats. We are a program for post treatment breast cancer survivors. The program was started by a woman, Susan Santangelo, who had cancer in 1998, and like me looked for a group for survivors. Back then there weren’t any. Everything was for people in treatment.
I hear some of the women, who come to the groups fresh out of treatment, echo my words and say things like “I don’t know who I am” or like me, “I’ll never be the same”. And then a few years later, they are comfortable with who they are and are moving away from cancer being the central focus in their life, to it being a part of their life experience and a smaller part of who they are.
I was diagnosed again with breast cancer when I was 60. I was miserable because this time it meant I needed a mastectomy. But… I wasn’t afraid I would die because I knew so much more about cancer.
A big question was whether to tell the woman in the support groups. I didn’t want them to feel they had to take care of me because they had their own needs. When I learned I needed chemo and would lose my hair, I had no choice. They were very supportive and caring, but because I was in a good place emotionally, getting the care I needed from others, they were able to focus on themselves and talk about their feelings and fears. My husband was wonderful, I saw a therapist, and talked to friends who have had cancer and felt very supported.
I’ve agree with the sentiments I’ve read by other women who’ve had cancer, that if you have it and survive, it can bring so many positive things to your life. I’ve found that. I’ve met so many wonderful women and some men; I never would have met, had I not had cancer. And had I not wanted to lead support groups. It’s so wonderful that so many young people like Caleigh are learning about cancer because if it happens to them or to their loved ones, they will be so much more informed, more prepared and better able to handle it than I was.
Nina Marino, LCSW
Clinical Director of The Breast Cancer Survival Center