What Cancer and Heart Failure Survivor Jen Singer Wants You To Know About Navigating Your Healthcare Journey
These are her top tips.
Three years ago, medical writer Jen Singer faced a sudden, life-threatening health emergency that would have lifelong ramifications. Singer—already a cancer survivor—was rushed to the hospital, where doctors discovered a complete heart block. The electrical system of her heart was shutting down, putting her at risk of sudden cardiac arrest.
After a five-day hospital stay, she received a pacemaker and a new diagnosis: heart failure, which is when the heart has trouble pumping enough blood to the organs. Today, she cannot ignore the reality of living with heart failure, which affects many parts of her daily life. "I can’t do things I used to do, like play tennis or use the leaf blower or carry 40-pound bags of wood pellets down into the basement. Sometimes, even walking up stairs makes me feel winded, and I am careful never to push through fatigue."
The 56-year-old writing coach, developmental editor and mother of two from New Jersey already had some experience with serious medical conditions, having survived cancer after being diagnosed with non-Hodgkin's lymphoma roughly 15 years ago. Her cancer treatments spanned about six months in 2007, followed by a nerve-wracking wait for the final PET scan in early 2008 to confirm that she achieved remission.
“I thought I was done with the ‘oh, damn’ diagnoses, as though everyone just gets allotted one in a lifetime,” says Singer.
After her heart failure experience, she was inspired to create a series of guides (fittingly titled "The Just Diagnosed Guides") designed to help recently diagnosed patients navigate their healthcare experiences.
Parade asked her to share some important tips for people going through a health journey, based on lessons she learned through her own experience.
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Connect With Someone Who Has Been in Your Shoes
One of the things Singer tells all new patients is to find somebody who's had the same diagnosis as you. For Singer, it was a neighbor who’d had the same kind of cancer and achieved remission.
"You can usually find a friend of a friend who had the same or a similar type of cancer, or the same heart condition," she says. "It’s especially helpful if they're local because then they're going to know all the good doctors and hospitals. But even if they're not, they can at least tell you what to expect. Because what the doctors tell you is often different than what a patient will tell you.”
Don’t Hesitate To Seek a Second Opinion
The more serious your diagnosis, the more you need a second opinion, Singer explains. She was first diagnosed with a different type of lymphoma at her local hospital before opting for a second opinion at a teaching hospital in New York City, where she was ultimately diagnosed with and treated for non-Hodgkin’s.
"People are afraid to do that because they think they're insulting their doctor," she says. "But you're not. If you had a hot water heater that breaks and someone's telling you that you need a new one, you might get a second opinion on whether it actually could be fixed or not. You should do the same thing for your own body parts. Get a diagnosis [from the initial doctor] and a treatment plan. Take that to another doctor who's not in the same practice—preferably not even in the same hospital system—and then get a second opinion on whether that doctor would agree with the diagnosis and would do the same treatment plan or not. So you have options.”
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Use Online Support Groups With Caution
At some point, people who receive a certain medical diagnosis will end up online. But according to Singer, it's important to proceed with caution—both when it comes to Googling any symptoms, and joining or posting in support groups.
"If you do happen upon a support group, I would recommend that you just observe for a long time before you post," she says. "Because you need to protect yourself from the flood of information that can come in and overwhelm you. And a lot of it isn't entirely accurate—it may be accurate for the other patient, but they may have a different situation than you. So I would lurk before I post. And when you do post, protect yourself emotionally—both online and everywhere."
Singer reports witnessing posts with inaccurate information, such as heart failure patients who insist that the condition is always reversible through behavioral changes, such as diet and exercise. “But some people have damage to their hearts from chemo and radiation, like me, or a congenital heart condition, and their prognosis may differ,” Singer says. “When it comes to your own treatment plan, defer to your doctor.”
She adds that people often want to tell patients that they have to be strong, they have to be positive and that their attitude is somehow going to cure their cancer—and that is patently false. "Your feelings, whatever they are (and they will change from day to day and sometimes from hour to hour) are entirely valid," says Singer. "Don't let people talk you out of them.”
Patients Getting Innovative Care Can Offer Valuable Insight
"Follow the patients that are going to the teaching hospitals or the best hospitals for your particular disease, anywhere in the United States or worldwide, because they are getting cutting-edge information from their doctors on how to treat your condition," says Singer. "Especially if you're in a rural area and you don't have access to that kind of care, you can learn a lot from those patients.”
She cites the experience of a brain cancer patient who left her local hospital, which had treated only a handful of patients with her type of cancer, for a teaching hospital where patient volume—and, therefore, experience—was greater.
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Stay Informed Through Leading Authorities and Top Organizations
Sign up for the email list from an association related to your condition. “In my case, it is the American Heart Association, American Cancer Society and the Leukemia & Lymphoma Society, and I’ve directed other patients to hospitals, research institutions, and doctors that specialize in rare conditions," Singer says.
"They are going to provide you with the latest information. You'll learn who the most renowned doctors are for your particular condition," she adds. "Especially if you have something rare, you want to know who those experts are, and find out if you can see that doctor and get a second opinion there—which you can do online, in some cases.”
Examine All Documents—Especially Medical Bills—Closely
A very high percentage of medical bills contain errors, Singer says, so make sure you get the entire thing printed out and go through it line by line to see if they're charging you for something that you didn't get.
“I am watching an EOB [Explanation of Benefits statement] for a pacemaker surgery in the amount of $371,000—the price of a Zillow listing—and if it should turn into a hospital bill, I’ll go over it line by line,” Singer explains.
"If you have a medical person in your family—the cousin who's an ER doctor or the sister-in-law who works in hospital billing—those are people to ask for help with this," she adds, noting that non-profit organizations related to your condition may also have staff who can assist you in reviewing medical bills.
Next up, find out what 'medical gaslighting' means—and how to know if you're a victim of it.
