November 4, 2021, 10:15 a.m.
Mammogram day. I arrive at one of Boston’s most esteemed hospitals, early and anxious. I’m always anxious before my annual mammogram, and this year, I’m edgier than usual because I haven’t touched base in advance with my dear friend Bonnie. Bonnie knows absolutely nothing about medicine, but for decades she has been my magic charm for mammogram anxiety. “It’ll be fine,” she always tells me. And I’ve always tried to believe her.
The mammogram hurts today, as always — how could it not, with each breast getting smashed between two slabs of hard plastic — but who cares? It’s the results I care about. In the old days, my wonderful radiologist did my mammograms and read them right away. He’d give me the good news, then we’d chat for a few minutes and I’d be on my way. Another year of freedom. Another bullet dodged.
This time, I have to wait. The day after my regular screening mammogram, the nightmare begins, quietly. I learn through the patient portal system that I have to go back for diagnostic imaging of the “questionable calcifications” on the left, and possible “architectural distortion” on the right. There is a number to call.
I call right away. I cannot have the second mammogram and ultrasound, I’m told, until December 13 — five weeks away! The system, not a friendly doctor as I’d once had, has just told me that I might have cancer — or even two different kinds of cancers, one in each breast — but I won’t find out for at least five weeks because this hospital is “fully booked.”
Fully booked? I can’t believe this wait can be blamed totally on COVID-19. I suspect preexisting, patient-unfriendly hospital bureaucracy as well.
Waiting for anything can be agonizing. For a loved one to call. For a college acceptance. For a needed paycheck. Stressful, but normal. Waiting for medical test results? Excruciating. And, to my mind, at least somewhat avoidable.
Granted, growing cells in culture or analyzing pathology specimens takes time. But when “the system” chugs along at its own sluggish pace, when doctors or their surrogates don’t call back promptly, when online patient portals give only partial information? That’s unforgivable. And would be fixable, if patients, not bureaucracy, always came first.
The basic dictum of medicine is primum non nocere: “First, do no harm.” But being made to wait for weeks to find out if you have cancer, or any other serious disease for that matter, is harm — it evokes fear of the unknown. “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown,” is how horror writer H. P. Lovecraft put it. Philosopher and writer Joseph Campbell interpreted the struggle with what he called “our greatest fear” this way: “Many of us would enter a tiger’s lair before we would enter a dark cave.”
As humans, we crave information to help us understand everything that comes at us every day. What underlies the fear of the unknown is “the perceived absence of information at any level of consciousness,” wrote psychologist R. Nicholas Carleton, who has studied the phenomenon, in a 2016 paper. And unpredictability makes it worse. In experimental settings, people show more stress if there is a 50 percent chance of receiving an electric shock than if there is a 100 percent chance, according to a 2016 study published in Nature Communications journal.
On the surface, this does not make rational sense — we should be only half as anxious if there’s only half the risk. But that’s not how our minds work. With uncertainty, the brain, particularly the fear center, the amygdala, revs up into a state of hypervigilance.
And so, I wait. I meditate. I swim. I do my relaxation tape. I swim some more, 2 miles at a time. I use a meditation app on my phone. I wait.
Some days, I can concentrate on work. Other days, I’m imagining a double mastectomy, reconstruction, Stage 4 cancer. I Google madly, pore over reliable websites, print out reams of cancer data. And I fume. Cancer wasn’t in my life’s plan. It’s not in anybody’s. I’m stunned by my own anger. Why would I expect to be any luckier than anybody else?
And I’m angry at the hospital that did the mammography. Couldn’t the mammography center predict how many questionable scans like mine are likely on any given day, then plan to save slots the following day for subsequent tests?
I call my primary care physician who, God bless her, works the system and gets me in for the second round of mammograms sooner, just a week away.
November 11, 2:45 p.m.
Breast imaging at a different top Boston hospital.
Two gentle radiologists do more mammography and ultrasound. “We have to do some sampling,” says the senior radiologist. “I’m afraid I have to use a scary word — 'mass’ — on the right.” The left seemed less worrisome.
I lose it. “You mean I could have two different cancers?” At least I can ask the doctors in front of me right away.
“It’s possible,” she says.
I ask for my husband. He comes in, strokes my back. Double biopsies are scheduled, 18 days away. We go out to eat. I have a martini and a half. He does, too. The fear is running away with me.
I go home and log onto the hospital’s online patient portal. I need more information. I click on the little envelope icon that suggests I might be able to initiate contact with the radiologist whose name appears on the test results. No luck — she’s not listed as one of my available contacts.
I try calling. No luck. The hospital switchboard has no record of anyone by this name. I ask about the other radiologist, but she also seems to be unknown to the hospital. I persist. I learn that she’s gotten married and uses a different last name now, not yet updated in the system. When we finally connect by phone, she repeats the results I already have but doesn’t elaborate on them to me — that’s for another doctor to do.
I wait some more. I meditate. I’m up to 2½-mile swimming sessions now.
November 29, 10:15 a.m.
Biopsy day — finally.
Again, two radiologists. They patiently describe the biopsy procedure to me, step by step, then narrate the procedure as they continue their work. The lab tech stands where I can see her and chats kindly with me throughout. Thanks to lidocaine, the procedures are almost painless.
Loaded up with ice packs and care instructions, my husband and I leave, get home, and crash. We sleep for two hours. We know it will be three to five days before we get the results. Compared with the past month, that feels bearable.
As I drive home from an errand, one of the radiologists calls. I pull over, get out a pencil and paper.
The left side is benign. The right, she tells me, has “invasive tubular” cancer.
I’ve never heard of tubular cancer and, Googling later in the day, learn that it’s rare and not too bad. I am remarkably calm, so happy to know. Knowing even something awful is so much easier than not knowing. I’m free of that horrid anxiety, the prison of fear.
The minute I get home, I tell my husband, then swing into action. I e-mail some doctors I’d been lucky to meet over decades of medical reporting for the Globe, asking for help. What’s invasive tubular cancer? How bad is it? Am I going to die? They e-mail right back, cutting short the weeks it could’ve taken to get the information they give me.
One oncologist source is especially reassuring. “This is the most nothing of all breast cancers,” he tells me, with “zero chance of threatening your life.” I know I still have to have surgery and nobody has told me yet who’s in charge. A surgeon? I have no idea whom to call now. Still, I’m delirious.
I’m also curious about the hormone receptor status of my cancer, knowing from all my years of reporting that many breast cancers feed on estrogen, or progesterone, or both, and that will affect my treatment plan. Back to the patient portal. My test results file says information on hormone status will be forthcoming as an addendum. No addendum follows. I e-mail my primary care doctor again. She gets the results and tells me: The cancer is positive for both hormones. Why the patient portal can tell me I have cancer but not tell me the hormone receptor status is a mystery. Hospital bureaucracy again?
Then, suddenly, I’m in “the system” at the Dana-Farber Cancer Institute, a place I’ve written about for decades. I never thought I’d be a patient there.
Now, phone calls are returned quickly.
Appointments are set up efficiently. Nurses call with questions. A COVID test is set up. I’m no longer lost in medical limbo, unable to get information, unable to figure out who’s in charge.
I’m optimistic. A plan is in place. I’ll be OK.
And the next time my mammogram rolls around, I’m calling Bonnie beforehand.