Who to tell, when to tell and how to answer all those questions about your cancer.
Tanya Tuttle-Barth needed a couple of days to let the news sink in. Her husband, Ralf, was with her when she received a diagnosis of MALT lymphoma, a rare form of non-Hodgkin lymphoma, but she didn’t feel compelled to rush out and tell others right away.
“I knew I had to tell people in order to get the emotional support I needed, and I wanted my loved ones to hear it directly from me,” she says. “We have a close-knit family, and this is the kind of thing we share together.”
Tuttle-Barth, a nurse coordinator in North Ridgeville, Ohio, informed her grown children first, followed by friends and extended family. “I disclosed the diagnosis and what it means,” she says. “We talked about treatment options and the favorable statistics on attaining remission.”
Disclosing a cancer diagnosis—and all that goes with it—is never easy, but it is necessary, experts say. If patients don’t inform immediate family and close friends, they won’t receive the emotional and physical support they could need over the long haul. Likewise, a reluctance to tell supervisors and co-workers could mean not getting needed time off and other benefits to which they are entitled.
“Many people don’t want to share this kind of news because they don’t want to be ‘outed’ or seen as ‘the cancer patient’ and pitied,” says Jill Kaplan, an oncology social worker at Memorial Sloan-Kettering Cancer Center in Basking Ridge, N.J. “Others feel out of control or are very private people and simply don’t want others knowing their business.”
Sometimes, Kaplan adds, the type of cancer can make talking about it more difficult. “When someone is diagnosed with an advanced cancer or a more challenging cancer, it can carry more weight,” she explains.
Richard Valentine, a retired school administrator in Boynton Beach, Fla., was in his early 20s when he received a diagnosis of testicular cancer and embryonal carcinoma in 1975. It proved to be a sensitive topic. “Testicular cancer was not spoken about like it is now with Lance Armstrong and others prominently in the media,” Valentine says. “Initially I just said I had cancer of the lymph system. I was young and not real comfortable mentioning testicular cancer.”
Many people don’t want to share this kind of news because they don’t want to be ‘outed’ or seen as ‘the cancer patient’ and pitied.
Upon receiving a cancer diagnosis, patients must determine whom to tell and how much to reveal. “I think the best thing patients can do is look at those closest [to them] and begin working outward in a circular fashion,” says Joel Marcus, director of psychosocial oncology and palliative care services at the Ochsner Cancer Institute in New Orleans. “I invite people to use the metaphor of getting into a swimming pool. We frequently do not dive right in. We put our toes in. We test the water and get in as deep as we feel comfortable.”
Spouses or partners are generally informed first. It is also important to inform children soon. “It’s been my experience that children, when given ageappropriate information, will be able to deal with a family member’s cancer diagnosis,” Kaplan says. “Kids are resilient. I have worked with children as young as 3 years old, and they got it.”
Supervisors and co-workers should also be informed, especially if the patient will need time off or other special considerations for treatment. Often, Marcus says, co-workers automatically rally around a sick colleague, which can help ease recovery.
How much information to share with family, friends and co-workers is an individual decision, Kaplan says. Before reaching out, patients should understand the type of cancer they have, what treatment will entail, anticipated side effects and what the prognosis looks like—this is the type of information people most commonly ask about.
Patients should not feel obligated to tell everyone everything, Kaplan adds—only what they feel comfortable sharing. However, communicating more details about treatment and progress might be beneficial to those who are closest.
Marcus suggests starting with an acknowledgment of the cancer diagnosis, then state three pieces of necessary information (for example, the type of cancer, the treatment and the anticipated outcome), then ask if the person has any questions. Some patients prepare a brief script before reaching out to others so that they don’t forget important information or specific phrasing. (This can be especially helpful when talking to young children, Kaplan notes.) Tuttle-Barth created a script to tell her family and friends about her cancer and her treatment plans. “I disclosed my diagnosis to my supervisor, and I told him it was OK to tell my co-workers,” she adds, “and that I was open to talking about my cancer if anyone had questions.”
In addition, it can sometimes be helpful to bring another person when sharing a cancer diagnosis. “If the patient feels it’s too challenging to do it on their own, then I would encourage them to bring someone with them,” says Kaplan. “Sometimes the person is there just for emotional support, and the patient does all the talking.”
There are numerous ways to inform family, friends and co-workers. However, it might be best to inform immediate family members and close friends in person if possible, Kaplan advises. Others can be informed by phone, email or via Facebook and other social media.
“I informed those closest to me in person,” says Allison Peeler Schwartz, a YMCA program assistant in Dallas who received a diagnosis of breast cancer in October 2012. “I wanted them to see that I was OK and not in pain, that I’m the same Allison I’ve always been.” Close friends who did not live nearby were informed via email. “Each method served me well,” Schwartz says.
Social media have become a common avenue for sharing cancer news, but there is always the risk that personal medical information could be viewed by strangers, Kaplan warns. Her recommendation: CaringBridge.org, a free service that allows patients to set up a private news-sharing website that can be viewed only by approved friends and family or others, according to the patient’s wishes. “It’s all about communication and support staying within the circle,” Kaplan says.
Patients who want to share should prepare a brief script so they are ready to respond to questions about their cancer.
Once immediate family, friends and co-workers have been notified of the cancer diagnosis, phone conferences, email blasts, blogs and Facebook posts are all good ways to provide regular updates to as many people as possible.
“These are all effective ways to report important treatment milestones, such as remission, progression and change of treatment,” Marcus says. “But make sure your primary circle is prepared first, so they aren’t taken by surprise.”
Cancer can be a life-changing event, but the experience can be far easier when surrounded by informed family and friends. “Be forthcoming and honest, and don’t hesitate to reach out to others for tips, advice and help,” Valentine advises.
“A few years ago I was approached by two family friends, one who had testicular cancer and another with prostate cancer, and I was happy to offer advice, support and encouragement,” Valentine says. “I didn’t have any of this when I had cancer, and the doctors had nothing to offer me.”
Peeler Schwartz notes that every cancer is different, so patients should trust their instincts.
“Do and say what you feel comfortable with at the time,” she says. “Rally your ‘village’ and accept their love and help.”