One of the amazing and uplifting facets of the movement to stamp out breast cancer is the community of survivors that has emerged. Women bound together by scars, by sorrow, by struggles, they are also sisters united in triumph. They are perhaps the most valuable resource, yet their voices are rarely heard. These are the warriors on the front lines in the battle against this disease. These are their stories, their voices, their gifts. First names have been changed upon request.

Celine, a 50 year old mother of 3, was diagnosed with breast cancer at 47. Her mother had battled and lost the fight at the age of 65. Celine remembrs the terror she felt upon hearing the diagnosis. “I thought of my mom. I thought of losing all my hair and getting so sick from chemo, you know? And I just thought, this is it, I need to figure out how [my husband] can manage without me, with the kids and all. I wish somebody told me then it was different today but how was I going to know?” After surgical removal of a tumor measuring less than 2 centimeters and several lymph nodes, she underwent radiation and drug therapy. Within only a few months she was in remission and has been cancer free since.

“I’ll tell you what else, I didn’t know that chemotherapy and radiation were two different things. No clue about that. I thought all my hair was falling out, I would need to have both breasts taken off, and I would probably die anyway. I was clueless about the reality of the disease NOW as opposed to THEN.”

Celine is not alone. Margery, a bright single college professor, was shocked when she went ahead with a double lumpectomy and chemotherapy without being told by her doctors that this would likely cause her body to go into early menopause. She was 38 at the time of her diagnosis and had no children.

“I wanted children. I faced the fact that the cancer was bad enough that I would need these treatments but I now question whether I might have beaten it without the chemo. The thing is, I had no children. I wanted children. When my periods stopped and the technician casually mentioned that ‘most women go menopausal right off’ I went out to my car and SOBBED. I could even face losing my breasts if it kept me alive but losing the children I didn’t yet have? This broke my heart! As it turned out, my periods came back not long after and everything was fine. It was a few long months of heartache, though, let me tell you.”

Margery has a daughter now, and has been cancer free for a year after a brief recurrance. Several women belonging to bulletin boards and e-groups for breast cancer expressed similar sorrow and anger at not being warned about the effects of chemotherapy in bringing on early menopause. “It’s like these male doctors consider it trivial,” Margery says. “I wish they would understand that we want to know EVERYTHING that is going to happen to our bodies.”

Her desire to be better informed is a common theme among survivors. “More than anything else,” wrote a survivor on an e-group, “I wish someone had told me the very day I was diagnosed that most women who get breast cancer do not die from the disease. If I had only known that fact, I believe that I would not have had the extreme amount of fear that I experienced. I had early breast cancer. My chances of never having it again were very good. Too bad nobody told me.”
The failure to inform, the fear of the unknown, and the lack of readily accessible information seems a common battle cry from these women on the front lines. The “Pink Ladies,” a group of survivors who do physical therapy together at a swimming pool in Boston, Massachusetts, noted that the internet has been a valuable resource.

“Back when I was [younger] we didn’t have the world wide web like you young gals do,” says Millie, a 78 year old survivor of radical bi-lateral mastectomy. “We got handed some little flyers and did what we were told. I see the young girls coming into the class [for post-surgical physical therapy] and they know a lot more than we did. I think it’s great!”
Eloise, a younger member of the group, says internet support systems helped her make important decisions. “My husband was afraid to get involved,” she says. “He supported me, but you know-- he didn’t want to talk about it. And I was feeling really guilty about wanting to keep my breasts, like, shouldn’t I be willing to just have them taken off if it meant living or dying? But I didn’t feel that way, I really wanted to keep my body like it was. I went online and found other women who were going through it or... went through it, too, and they were like ‘girl, don’t feel guilty for that!’ and somehow it almost-- gave me the guts to tell my doctor what I thought.”

Support, information, and acceptance have changed the battle field on which the war against breast cancer is waged. Women armed with the moral support of their fellow survivors are taking an active role in their own recoveries, and voicing their fears. More detailed and honest dialogues between doctor and patient are beginning, at long last, to take place. As so many of the survivors interviewed or e-mail polled acknowledged, fear of the unknown was the darkest spectre before them when diagnosed. As we begin to listen to those who have beaten breast cancer it becomes clear that the days of death sentences and terror are past us. The battle rages on, but it is being won. If we listen to the voices on the front lines, those waging this war where it strikes, we can hear the truth above the din: we are gaining ground every day, we are beating the enemy, we are surviving, and the next wave of warriors can, too.

Next Month: Breast Cancer: Beyond Survival