Two years ago, Joelle Kaufman scheduled a preventive double mastectomy after witnessing her mother and sister undergo treatment for breast cancer. But the day before her surgery, she received a shocking call from her doctor: A routine screening had revealed a malignant tumor.
“Two thousand things were going through my mind,” said Kaufman, an executive coach and the author of “Crushing the Cancer Curveball.”
She couldn’t form a coherent thought beyond: What should I do now?
A diagnosis of a serious illness can be overwhelming, whether it’s happening to you or someone you love. So I asked Kaufman and other experts about what to do immediately after hearing bad news — and in the weeks to come.
Focus on right now.
Everyone responds differently to a distressing diagnosis; there is no right or wrong way to feel, said Stephanie Alonso, an outpatient oncology social worker at UChicago Medicine.
Don’t feel pressure to be positive, or to be a “fighter,” Kaufman said.
Instead, remind yourself that you do not have to make every decision at once, said Alison Snow, senior director of oncology social work at Mount Sinai in New York. Ask yourself: What do I need to get through the next hour? What do I need to get through this day?
Writing down your thoughts can be therapeutic “and stop them from spiraling,” Dr. Snow said.
If you’re being treated at a hospital, ask if they have a social worker on staff who can share resources to help you cope with the emotional, financial and logistical needs that may arise, Alonso said.
Decide whom to tell and how.
“Ask yourself, ‘Who is a need-to-know, and who might I tell later?’” Alonso said. Once the news is out there, you can’t pull it back, she added. “There are many times where I hear people say, ‘I told all these people. And now I’m being just flooded with people checking in on me.’”
If you’re announcing your illness to a group, Kaufman recommended using CaringBridge, a free nonprofit health platform that helps you communicate updates and simplify care coordination. “The exhaustion of telling the same thing over and over again is real,” she explained.
If you’re making a group announcement, Kaufman added, specify what you need — and what you don’t. Some people whom Kaufman shared her diagnosis with wanted to help but had no idea what to do, she said, so she issued requests like dropping off meals or driving her to appointments.
As for what Kaufman didn’t want: pity, links to random articles, or stories about other people’s cancers, “like the person’s aunt that had cancer 30 years ago.”
When you’re ready, start researching.
Someone who first hears a diagnosis will probably feel “frozen,” said Susan Enguídanos, an associate professor of gerontology at the University of Southern California Leonard Davis School of Gerontology. But as soon as you are able, she said, research your condition.
And get your information from reputable sources rather than frantically searching the web, which can yield misinformation, Dr. Enguídanos said. She recommends using resources from the Mayo Clinic’s health library or from medical organizations such as the American Heart Association. You can also ask your providers for the sources they use, she said.
Then make a list of questions for your doctor, and put them in order of priority, she said, “because unfortunately, a lot of physicians are booked in, like, 20-minute slots.”
And for your next appointment, whether it’s with the same doctor or with a specialist, ask if you can record the session with your phone, Dr. Enguídanos said. “Then you can listen back when you’re not in crisis,” she added.
All the experts said to get a second opinion. Make the appointment as soon as you can, or try several doctors, because some can be fully booked a few months out, Dr. Enguídanos said. Not all insurance companies will cover a second opinion, she said, so check with yours.
Consider leaning on groups or buddy programs.
It can be helpful to talk to a person who has had a similar diagnosis, Dr. Snow said. Ask your doctor to recommend a support group or buddy program for people with your condition. For example, she recommends the free nonprofit organization Imerman Angels, which provides one-on-one mentoring for cancer patients and their caregivers.
If your condition has a national association, consult its website for support groups, which may be offered in person or online. The Better Breathers Club, a program by the American Lung Association, connects people with lung diseases; the Parkinson’s Buddy Network is a free online platform from the Michael J. Fox Foundation that offers ways to connect, both one on one and in groups.
Don’t be put off if you don’t click with the first group you try, Alonso said. Sometimes it can take a few attempts to find one that feels right.
Kaufman, who is now cancer-free, found small ways to stay upbeat throughout her treatment: Every Wednesday, when she had chemotherapy, she put people on a schedule. She would ask a different friend to take her to her appointments each week, so she could have a 20-minute visit during the drive. One of her sons would make her a mood-boosting playlist, another would write her an inspiring letter and a friend would text her a joke.
Engineering these weekly pockets of happiness “was something I could control in a situation that felt out of control,” she said. “It was a way to be gentle with myself.”
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