One of my favorite things about being a writer is the opportunity to learn about a variety of subjects that lay outside my realm of experience. Up until seven months ago, this story would have been just another one of those opportunities. But in November 2022, over the course of three fear- and tear-filled days, my husband, Ethan, was diagnosed with acute lymphoblastic leukemia. Our lives quickly took a dramatic turn — from empty nesters joyfully starting their “second acts” to cancer patient and caregiver.
Our story isn’t that unique. The American Cancer Society estimates that in 2022, 1,918,030 new cancer cases were diagnosed in the United States. Most of those people were dropped into an entirely unfamiliar world in which everyone wears different colors of scrubs, uses terminology they can’t comprehend and spends an inordinate amount of time answering questions about bathroom routines.
So, what do you need to know now that could help you in the future if you or a loved one faces a cancer diagnosis? I asked three people, including my husband, to share what they wish they had known before their experiences.
Get a second opinion
Devra Davis, a highly lauded researcher, epidemiologist and scientist who was the founding director of the Center for Environmental Oncology at the University of Pittsburgh Cancer Institute and a member of the 2007 Nobel Peace Prize–winning team alongside Al Gore, is a bladder cancer survivor, but she wasn’t suffering from cancer when she was first diagnosed in 2008.
“I didn’t realize that doctors could overtreat and overdiagnose cancer,” she says. After getting a second opinion, Davis learned that she really had a precancerous abnormality of the lining of the bladder, of which about 10 to 20 percent of cases turn into cancer. This reclassification taught Davis, 77, two lessons: (1) Always get a second opinion when presented with a cancer diagnosis. (2) Doctors are humans.
Know your odds and options
Unfortunately, Davis was among the 1 in 5 precancer diagnoses who go on to develop bladder cancer, which occurred five years later. When it was time for the treatment, she was “flabbergasted” to learn the statistics on success for her type of cancer.
“I’m going to confess ... I didn’t even look at the data because I didn’t want to know. I just assumed it was going to work and everything was going to be fine.”
After treatments failed, Davis was left with a remaining option: a brutal and deforming surgery. But with her background, she started to investigate less invasive ways to treat her cancer and found an alternative therapy using mistletoe. This isn’t always an option, but standard practices in one place may not be the same elsewhere. Knowing alternatives is vital to getting the best treatment plan for you.
Take care of you first
The most important lesson Ruth Howard wishes she had known before her breast cancer diagnosis in 2004 was that it’s OK to focus your attention inward.