Diagnosis Disclosure

Having a plan makes it easier when telling loved ones about a cancer diagnosis.

The words may stick in your throat, but telling the people in your life that you have cancer can trigger important benefits to your treatment.

“When diagnosed with cancer, you can feel very isolated, vulnerable and alone,” says Frances Baumgarten, PhD, clinical psychologist, president and co-founder of Fran's Place, the Center for Cancer Counseling in Newport Beach, Calif. “The enormous amount of emotion around the diagnosis, treatments and the future are unbearable if you don’t share your thoughts and feelings with loved ones. It is so important to have the love, strength and support of family and friends throughout the entire journey.”

Despite these needs, disclosure may not be easy, she says.

“No matter how much press there is about cancer, it is still very traumatizing to be told you have cancer,” she says. “There is so much information to absorb and so many emotions to manage that it can feel nearly impossible to find the words to tell your loved ones and friends. The words ‘I have cancer’ can cause so much anxiety, that they get stuck in your throat.”

Baumgarten herself, who was a psychologist for several years before her own diagnosis of stage 3 breast cancer in 1989, says she had trouble telling people.

“With all of my education, training and tools, I struggled with these words, too,” she says.

Baumgarten recommends telling at least one person, someone you can rely and depend on for support. “This will help wrap your brain around what’s happening,” she says. “Having a family member or friend say ‘I’m here for you’ feels really good.”

When to first disclose your diagnosis to others is a totally individual decision, she says. You can choose to let people know when there is a suspicion of cancer or well after the diagnosis is confirmed. You may choose to tell different people at different times, but having a plan on when, who and what information to disclose is helpful in the long run.

“Reach out when you feel comfortable reaching out,” she advises. “There is no right or wrong way to do this.”

At the same time, avoiding that discussion completely is not helping you process the information, she says.

“Every time you repeat the story, you get a better handle on it,” Baumgarten says. “Talking about details and emotions with partners and family is very important. It helps you feel like you have more control over the situation, brings everyone closer and enables you to deal with the cancer as a team.”

The simplest approach is often the best, says Mark Kantrowitz, a testicular cancer survivor who created the website CancerPoints.com to provide practical guidance for cancer patients. Stick to the basic facts of your type of cancer, stage, treatment and prognosis, he says.

When you tell people your diagnosis, they will likely ask what they can do to help. Kantrowitz recommends making a list of things you need to get done on a daily basis, including taking care of children, doing household chores, taking notes during doctor visits or sitting with you during treatments. When friends ask what they can do, find something on the list.

Once you tell people your diagnosis, they may want to keep up with your health. A point person can field phone calls and provide web-based updates on blogs, FaceBook accounts or websites like Caring Bridge or Lotsa Helping Hands.

“Having someone taking calls for you, blogging or using the Internet so you don’t have to constantly answer calls is very, very helpful,” Baumgarten says.

Telling your employer about your diagnosis may require a different approach. It is important to let your employer know about your diagnosis in order to be covered under certain laws, including the Americans with Disabilities Act and the Family Medical Leave Act. Telling your human resources department is essential in providing time off, flex time and other workplace adaptations. Having a proactive plan, including any questions your employer would have, proposed leave time and discussion of a shift in duties may help the conversation go smoother. (For more information on talking to your boss about your cancer diagnosis, read “To Tell or Not To Tell” and visit the website for Cancer and Careers for additional advice and resources.)

Talking about your cancer with acquaintances or even strangers is not necessary, Baumgarten says.

“Have a couple of pat answers if you run into someone at the grocery store and they ask about you,” she advises. Phrases such as “It’s going on schedule” or “It’s going fine” can help you get out of the conversation quickly without insulting anyone when you are caught off guard, Baumgarten says.

Disclosing your cancer is the result of a myriad of personal parameters, and there is no one correct way. Women may tend to tell more than men. Cancers that are easier to beat may be easier to disclose than cancers with a high mortality rate. Cultural differences can also be an important factor. (Read “The Diagnosis Dilemma.”)

But the bottom line, says Baumgarten: Tell someone in your life to make coping with cancer more manageable.