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7 Things I Wish I Knew Before My Cancer Diagnosis

Must-Have Information to Track, Treat and Take Care of Yourself During Treatment


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Devra Davis has been in complete remission from bladder cancer for seven years.
Courtesy Davis

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. 

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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.

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“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.

“You need to worry about yourself and not anybody else,” she says. “Women, in particular, are caretakers, and they are always worried about everybody else. ... Don’t be.”

Howard, 58, an executive coach and member of the National Association of Commissions for Women, says holding onto pieces of your life that existed before the diagnosis is key to getting through it. She went back to work within four weeks of getting released from the hospital following her breast cancer surgery.

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“Do the things you want to,” Howard notes. “Continuing to do what you enjoy is what keeps you from thinking about it.”

One thing, Howard says, that she wished well-meaning friends and others also knew: It’s up to them to step up if they want to help.

“It’s the whole ‘If you need anything, let me know’ thing,” she continues. “My thing is, if you want to do something for somebody, do something. Send them flowers, send them a card, get them a gift certificate to their favorite restaurant or something like that. Because the majority of us aren’t going to say we need something.”

Take notes

Both Howard and Davis suggest taking good notes throughout treatment — or bringing a person with you who can take notes — so that you can refer to them later.

I am that person for my husband. From the first appointment we went to until now, I am meticulously recording his white blood count, hemoglobin and all of the other “vitals” that doctors watch closely.

Count pennies and look for financial assistance wherever you can

The financial toll a cancer diagnosis takes is severe. Even with the best insurance, costs add up.

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“No matter how much a person tries to be diligent and save and have safety nets in place, it’s an impossible financial shock that nobody can weather unscathed,” says Ethan, whose treatment for his type of leukemia will cost up to $1 million.

Howard says she’s astounded by the amount she’s paid over the years for prescriptions and copays. “It is a little surprising … when you add up the numbers over years.”

But help is out there. After losing a prescription that would have cost $6,000 out of pocket to replace, Howard found a company offering coupons on the internet for a free month’s supply of that same medicine. Other online companies, like GoodRx.com, offer discounted medications for people with or without insurance. AARP also provides a free prescription discount card through Optum Rx for savings at 66,000 pharmacies nationwide on all FDA-approved medications.

Ethan, who has worked in human resources for 25 years, offered a couple suggestions that everyone can do before facing the unexpected. First, set up as many bills as possible on auto-pay and route them through electronic payments. It is extremely helpful for managing expenses. Second, purchase a long-term disability insurance policy through your employer. “It’s such an important benefit. But through this cancer process, I was surprised by the number of people I talked to who didn’t recognize what it was and didn’t see it as essential.”

Make your health care team work for you

One action you can do now to get ahead of any diagnosis is to have a primary caregiver and schedule regular physicals. The speed with which Ethan’s primary care physician scheduled a video visit, ordered tests and then referred him to a hematologist-oncologist when the results indicated a blood disorder saved his serious situation from becoming dire.  

Once diagnosed, Howard advises patients to become their own advocates and know when to escalate things with their care team. “Utilize your team to get the things that you need,” she says. Howard recently had issues scheduling an MRI directly. Once she got her care team involved, she had an appointment the next day.

Stock up on patience

Flexibility, patience and endurance are vital when navigating this process, Ethan says. “It’s important to recognize that this is a long journey that takes a lot of endurance. That was a big surprise to me because I never expected it to take this long.” It has required “more patience and endurance than I expected it would.”

Davis adds that she believes that prayer is a powerful tool. “I’m saying this as a scientist: It’s clear that people who have faith in whatever they consider to be God or whatever higher powers they acknowledge — that having faith is very, very important in recovery.”

Share Your Experience: What do you wish you had known before managing a cancer diagnosis for yourself or a loved one? Tell us in the comments.

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