The Diagnosis Is In: Now What?
3 Critical Things to Do
Originally published by Katie Couric in her newsletter,
Wake Up Call
More than twenty-five years ago I waited impatiently for my doctor to call me back with news I probably had a rare and fatal blood cancer called multiple myeloma. That devastating diagnosis took days to confirm and by then, I’d already devoured all the medical textbooks and manuals I could get my hands on at the local bookstore. More recently, when my mammogram showed a suspicious spot that “could be nothing” but “let’s not take any chances and check it out,” I soon found myself furiously tapping “early-stage breast cancer” into my smart phone.
Nearly a billion results shot back.
All I could think of was, WTF!?
The world has changed immensely since I was given three years to live decades ago—before the internet was a useful tool. The science and technology of modern medicine is downright dazzling. But one ugly truth remains: Our healthcare system is not friendly; it’s fragmented, bureaucratic, and impossible to navigate. To say I’ve learned a thing or two about how to work it in between my diagnoses is an understatement. Obviously, I’m still alive. Whether you’ve got a very treatable cancer or something more serious, it’s hard not to panicwhen that diagnosis lands. Survival means getting organized for your treatment and long-term care. Here are the three things to do from the get-go.
#1: Search Wisely Online and Be Strategic
I’m not alone in turning to the internet for information upon a diagnosis. The vast majority of Americans—a staggering 89 percent—will google their health symptoms before even going to their doctor. And nearly two in five Americans have self-diagnosed themselves by jumping online. But how do you leverage the internet’s powers for good and avoid its pitfalls that can leave you more terrified and possibly sent down the wrong path?
You search wisely and be strategic with the following tips.
Be Precise with Your Words
How you tell the internet what you’re seeking affects the results you receive no matter which search engine you use, including the latest generative AI. For example, searching for “skin cancer” will return different sites than if you had punched in “melanoma” or “squamous cell.” The goal is to be as precise as possible—focus on the specific type of cancer you have, its stage, and where you are in the journey. Hence, a typical search might be the following: “estrogen positive stage 2 breast cancer” and “newly diagnosed.”
Know the Different URLs and Start with the Leading Sites
A website’s root address or “unique resource locator” (URL) will quickly tell you who is behind the information. The most common root URLs end with one of the following:
- .org (nonprofit organizations such as patient advocacy groups)
- .edu (accredited academic centers)
- .gov (government agencies such as the National Cancer Institute)
- .com (diagnostic, pharma, and other health services companies)
While there’s value to be found in all types of sites, it’s ideal to begin with the leading ones. Anyone diagnosed with cancer should at least bookmark Cancer.org, Cancer.net, and Cancer.gov. Also be on the lookout for disease-specific .orgs tailored to speak to your specific ailment (e.g., FightColorectalCancer.org; Multiple Myeloma Research Foundation at www.themmrf.org; LUNGevity Foundation at www.lungevity.org). They will often come up immediately as a .org in your original search. And as you conduct your searches, do not hesitate to call the 800 numbers and helplines to ask what specific resources they offer aside from the website. Sign up for newsletters and join virtual events, chats, and webinars.
#2: Get Second Opinions and Get Them Covered
Confirming your diagnosis can take some time, especially when it comes to nailing the specific biology of what you have and which stage you’re in. You’ll likely be referred to several specialists whom you’ll meet in swift succession and, in doing so, earn important second and third opinions.
I was fortunate that a good internist caught my myeloma early and quickly referred me to a hematologist oncologist—a “heme-onc,” as they are called and who specialize in blood cancers. For you, it’s important to get referrals from your doctor, disease foundation(s), insurance company, and friends. Every specialist you consult with, ask for more referrals or other people to consult with, any additional testing to consider, and their perspective on overall sense of timing. You might at first feel awkward about asking for names of other doctors from your own, but good doctors expect you to obtain additional opinions. It’s routine and there’s no reason to feel awkward so don’t be shy! This is your life—no matter how uncomfortable you may feel. Get used to it. Second opinions should be covered like they were for me, but check first with your insurance company and push back if you get an initial no.
The doctors who diagnose you may not be the ones who treat you long term. As you gather opinions, think of it as an interview process for recruiting your medical team. Whom do you like working with? Do you like the office? Are the nurses and nurse practitioners kind and helpful? Is it geographically convenient? Are you more comfortable at a community hospital or designated “Center of Excellence”? Is the facility built around your needs as a patient? While talking to these doctors, you may begin to see who you want as your lead—someone who will stay with you through your journey.
#3: Think What Matters Now and Establish Your North Star
Most cancer patients remember the exact day and time their diagnosis was confirmed and their life is instantly divided into “Before” and “After.” They pine for the days Before days when they took their health for granted, when they weren’t consumed by doctor’s appointments, needle sticks, paperwork, and life-saving decisions to make.
It’s normal to mourn what you’ve lost, but it’s also important to acknowledge where you are, take stock of what you need and want now, and fully understand how those needs and wants impact those you love.
What do you need just to get through the testing and the treatments? Time? Money? Family? Insurance? Employment? Emotional and logistical support? Who will drive you to appointments? How will you pay your deductible? Who will cover your shift at work? Who will watch your children or help your parents? Who will help maintain the household?
As you also think about your wants, don’t miss this opportunity to sit quietly, by yourself, and write those out. Use an old-fashioned journal or piece of paper, a digital document, or a recording device to capture your thoughts in this exercise. Be as detailed as possible. What would a good day look like? Who are you spending it with? Is there something you still want to see, say, or do? What are your non-negotiables?
Rethinking what matters now ultimately allows you to establish your North Star—that guiding light that holds your most precious priorities. Every time you make a decision going forward, whether about your care or your life, make sure you ask yourself “Does this decision help me get to my North Star?” And if it does, move ahead. But if it doesn’t, you need to ask yourself whether you should change the decision or change your North Star.