When I was diagnosed with breast cancer, uttering the word "cancer" was so terrifying that at first I told no one outside my family. But one thing led to another, and by the time I finished treatment a year and a half later, my secret was out.
For me, openness about my diagnosis was inevitable. I was determined to work during my treatment, and even if I'd kept my mouth shut, my hair spoke volumes as it transitioned from hippie mane to tidy wig to wisps of granny gray. Then there was the social dilemma: If I told Person A but not Person B, would Person B be offended if she found out later that I'd told Person A and not her? I solved the problem by telling anyone and everyone. Naturally, they all felt the need to weigh in. I was like the star of my own reality show—in good ways and bad.
There are as many benefits to keeping mum as there are to broadcasting the news. As Bernadette Slavin, a volunteer on SHARE's breast-cancer helpline, points out, "This is a very personal decision."
But how to make that decision?
"The important thing is to focus on your own needs and move from there," says Marjorie Schwartz, a SHARE breast-cancer support-group facilitator. When Marjorie was diagnosed, her mother had recently lost her husband and an adult child, Marjorie's older brother. In addition, she was a "first-class worrier" who suffered from anxiety. So Marjorie decided not to tell her about having cancer. "I scheduled my visits to my mother around my treatments, and yes, I had a very good wig," she says. Many of Marjorie's friends and family members questioned her decision. They felt that a mother had a right to know, that it was dishonest not to tell her, and that she deserved a chance to rise to the occasion. "Now, 10 years later, there is no question that what I did was right for me," Marjorie says. "Extreme as it may sound to some, I feel I protected both my mother and me—her from heartache and worry, and me from having to manage her when I already had too much on my plate."
A clinical psychologist who volunteers on the breast-cancer helpline had no problem sharing her diagnosis with her two sons—despite her own fears, she assured them she would be fine—but it was a little more complicated discussing her two recurrences with them. Even more complicated was telling her patients. "I felt I had to tell them because they could see the changes in me physically, and at times I had to adjust my schedule," she says. In the end, she feels it was beneficial. "It made me more human to them."
Kathy Mone, a breast-cancer helpline volunteer who has also had uterine cancer, was determined to be frank. She shared her diagnoses with her teenage children "so they could learn that like anything in life, this situation could be faced openly and honestly." She was motivated to be just as frank with her co-workers by the recollection of a supervisor whose attempt to keep her diagnosis to herself backfired. The supervisor's unexplained leave of absence spurred gossip, including a rumor that she was having a nervous breakdown. To head off any speculation, Kathy was forthright about her illness. She hoped to show colleagues that it was possible to work and maintain a positive attitude even in adversity. Her example inspired them to raise funds for a breast-cancer organization in her name.
Diane D'Angelo, who schedules volunteers for the breast-cancer helpline, found that there were some downsides to telling people outside her inner circle about her diagnosis. "They would ask me, 'Was it your weight?' 'Are you in remission?' 'How did you get it?'—questions I was not ready to answer." Everyone handles things differently, she says, but "being private is O.K. It gives you time to understand and heal."
In deciding whom to tell, consider the traits that have defined you in the past, advises Mark Goldstein. A breast-cancer survivor who counsels men with the disease, Mark points out that being diagnosed with an illness associated with women may embarrass men, make them feel emasculated, or cause concern about the social and business ramifications of speaking openly. "The answer to this question is the one that lies within you. If you are outgoing, optimistic, defiant, self-confident—don't abandon those characteristics just because you developed a disease," he says. "If you feel comfortable sharing your diagnosis, go for it." But pick your confidants carefully, and no matter how outgoing you are, be wary about making health announcements on social media: "It could be a source or a cesspool."
Though there's no rule dictating whom to tell, practical realities can force your hand. "Unfortunately, it is very difficult to hide being sick," says Jane Madell, a breast-cancer survivor whose daughter has also been diagnosed. "If you do not tell people at work or in your social group why you are not well, they may think you are being unfriendly—or worse. In my experience, it is best to be up front about it, and if you are doing well they will be impressed. If you need support (and we all do), then you need to tell people you have cancer so they can provide support."
Age and culture may play a role in your decision. Gladys, a volunteer on SHARE's breast-cancer helpline, was inducted into the world of breast cancer nearly 50 years ago, when her mother was diagnosed. Back then, breast cancer was a taboo topic. But it was often hard to keep it a secret. As Gladys recalls, there was only one surgery available—a radical mastectomy. "When women found out you had breast cancer, their eyes would drop to see which side. The clothing never looked right. The bras and prostheses were horrible." Now, in many cases, women can choose between lumpectomy and mastectomy, and if they have a mastectomy, they have the option of reconstructive surgery or natural-looking breast forms—or going commando. Unless they want it to, their appearance doesn't give their health history away. Though Gladys chooses not to bring up her breast-cancer experience with strangers, she doesn't hesitate to communicate frankly with newly diagnosed women. "Seeing someone who is functioning well should be a comfort to them," she says.
Grace Munoz, who volunteers on the breast-cancer helpline and facilitates one of SHARE's Spanish-language support groups, remembers working long ago with a woman who wore a cardigan draped over her shoulders at all times, covering her chest. "I could not understand why she always had it on. She was very attractive but never seemed happy." Years later Grace learned that the woman had been diagnosed with breast cancer in 1960 and had a radical mastectomy. Her marriage fell apart and her spirit was crushed. "Keeping the secret had to be lonely," Grace says. By the time Grace was diagnosed and had a mastectomy, in 1993, people were more open, but Grace remembers her grandmother advising her not to mention her diagnosis to certain relatives. "Of course, I told everyone!" Grace says. "I needed all the prayers I could get!"
Grace may have felt free to speak about her diagnosis, but she felt self-conscious about her appearance, even though she wore a prosthesis. "I went out and invested a lot of money in beautiful scarves—all colors, all sizes—and hid behind a piece of silk," she says. Working on the helpline has been cathartic for Grace. "The cutting, the poison, the burning we endure will fade in time, but this experience can damage the spirit if you let it. Do whatever you need to do to fight those feelings. Sharing can be healing."
Do you have insights into deciding whom to tell? Please take a moment to share them with us. Do you have a question you'd like to pose to our panel of seasoned survivors? Let us know that too.