Get your cancer journey started right.
More than 25 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 my doctor decided to check out to be safe, I found myself furiously tapping “early-stage breast cancer” into my smartphone soon after the appointment.
Nearly a billion results shot back. All I could think 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 are 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, and I can tell you now that surviving cancer requires getting organized. Whether you’ve got a very treatable cancer or something more serious, it’s hard not to panic when that diagnosis lands. If you or a loved one find yourselves in this position, this guide will help you manage your treatment so that you find the best care and minimize stress as much as possible.
Search wisely online and get information you can trust
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?
Be precise with your search terms
How you tell the internet what you’re seeking affects the results you receive no matter which search engine you use, including the latest AI. For example, searching for “skin cancer” will return different articles and websites 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. For example, “estrogen-positive stage 2 breast cancer” would be a good way to get specific and accurate information about this scenario. Adding a phrase like “newly diagnosed” will help you find even more targeted commentary.
Rely on reputable sources
A website’s root address or “unique resource locator” (URL) will quickly tell you who’s 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. When it comes to health resources, you’re safest with nonprofit organizations (.org), government platforms (.gov), and educational research (.edu). 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, and LUNGevity Foundation at www.lungevity.org). They will often come up immediately as a .org in your original search. 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.
Get second opinions and get them covered
The value of second opinions cannot be underestimated. According to a 2023 review study by Memorial Sloan Kettering Cancer Center in New York, between 23 and 57 percent of patients across four different types of cancer had their cancer management — diagnosis or treatment plan — changed significantly based on the second opinion and which resulted in a better prognosis or quality of life. Those second opinions led to some patients avoiding surgery, taking a less aggressive but equally effective approach, or shifting to active surveillance.
Getting second opinions 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’re called, who specializes in blood cancers. For you, it’s important to get referrals from your doctor, disease foundation(s), insurance company, and friends. Ask every specialist you consult for more referrals, any additional testing to consider, and their perspective on timing. You might 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!
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. Most private, commercial insurance plans cover second opinions, especially if the doctors you consult are within your network. Always get the green light directly from your insurance company and be mindful that in some cases, second opinions are necessary before undergoing certain procedures. Otherwise, your out-of-pocket costs might be higher. Members of Medicare, who make up the majority of cancer patients aged 65 or older, are generally covered but usually only if a doctor recommends that you have surgery or another invasive therapeutic procedure. And if the second opinion is different from the first opinion, a third opinion is also covered but you’ll pay 20 percent of the Medicare-approved amount. You can look through Medicare’s database of providers at Medicare.gov. Depending on where you live, you may be able to receive a remote second-opinion appointment via telemedicine.
Establish your north star
Most cancer patients remember the exact day and time their diagnosis was confirmed and their life was instantly divided into “Before” and “After.” They pine for the Before days when they took their health for granted and 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 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.
Unlike other challenges, you cannot ignore a diagnosis when your life is at stake. It’s fearsome, but if you approach your diagnosis methodically and thoughtfully, you can get through it one step at a time. As I did all those years ago, you can go from fatal to fearless.
To follow Kathy’s cancer journey and learn her insights on how to cope with a diagnosis, read Fatal to Fearless.
