I Was Diagnosed With Aggressive, Invasive Breast Cancer. Here's Why I Feel So Lucky.
In late June of last year, I was told I had three tumors that tested positive for triple negative, aggressive, invasive breast cancer. It was different from the Stage 1, HR-positive, HER2-negative tumor the size of a thumbnail I had the first time I was diagnosed with the disease 17 years ago.
That time I was treated quickly and declared cancer-free. This time, my cancer treatment was grueling and lasted 10 months. Still, I was lucky.
At my annual physical last year, I told my primary care physician about the shooting pain in my left breast that I thought was due to the substantial scar tissue from my first surgery. During a palpation exam she found what turned out to be 7 centimeters of tumors — together they were bigger than a soda can top but smaller than a baseball.
I was lucky. My doctor listened, didn’t hurry me along, and didn’t overbook her patients to meet the quotas required by the insurance companies or hospital administrators. She didn’t insist my visit could be a video visit.
I thought about all the women in doctors’ offices who are rushed, told they are fine — “Go home! Don’t worry!” — or that the pain is all in their head. I thought about all the women who do not have access to breast health care, mammograms or doctors who listen to them. I thought about everyone who doesn’t have a laptop or internet access for telehealth visits. These disparities can be fatal.
A 2019 Today-Survey Monkey poll found that more than half of women “say gender discrimination towards patients is a serious problem in the health care system.” The survey also shows that 21% of women compared with 14% of men say, “a health care provider ignored or dismissed my symptoms.”
I was lucky. I went home and phoned the radiologist I have been seeing for a dozen years, and he scheduled me for the earliest available appointment. Using an ultrasound, he found masses that minutes earlier were not visible on a 3D mammogram or during my annual mammogram a few months earlier. The radiologist told me he would take the biopsy specimen to the lab on his way home. I cried in his office.
So many women would be told by their radiologist or health care provider that they are fine after receiving a clear mammogram. So many women would have undetected breast cancer — Stage 3 like me, or worse — and it would not show up in routine testing. And many would die because they were not believed or treated soon enough.
I had been on Medicare for a few weeks, as I had just turned 65 that month, but the woman working my radiologist’s front desk told me they did not accept Medicare. I had been insured by a major private insurer for years, so payment had never been an issue at this provider’s office.
I was told I could pay for the upcoming lab tests in monthly installments, but I needed to pay over $2,000 for that day’s visit, so I handed her a credit card. I was lucky to have that option. Those who can’t pay for their cancer treatments can quickly go into incredible debt, and some even lose their homes. Or they forgo treatment and die.
A 2017 study of 763,884 cancer cases showed that “substantial and consistent disparities in quality of cancer care exist according to type of health insurance.” I was lucky. My hospital and all the affiliated providers except my radiologist took my Medicare.
I had 21 appointments for tests, exams and consultations in the first two weeks after my diagnosis. Then came three months of weekly chemotherapy with so many side effects and potential complications — black fingernails, hair loss, nausea, exhaustion, mouth sores, body rashes — that they filled a three-ring binder.
I was lucky. My sister Madeleine arranged a group of volunteers to drive and assist me to and from therapy, and they attended more than 50 appointments over several months. I never went alone; I was cocooned in a bubble of compassion by my family and friends.
My sons, friends, sisters, brother and nieces took notes during each visit. I brought a notebook for them because I could remember nothing from any appointments. It was as if the doctors and nurses were all speaking but someone had pressed mute.
I saw other cancer patients struggle with walkers and wheelchairs in hospital hallways and waiting rooms. Many told me they took the bus or train by themselves to get there. They said once they arrived, they took a shuttle bus from one building to the next and tried to navigate the maze-like corridors.
Once, when I was standing in line at the registration desk for my pre-surgery appointment, I noticed an older man in front of me who was alone and holding onto his walker.
“I’m sorry,” the receptionist told him. “You are an hour late, so we have to reschedule you.” She asked him to please go sit in one of the chairs over by the window and she would get to him as soon as she could. There were four other people ahead of him already waiting for their appointments to be rescheduled.
Grateful for excellent care, I did what I was told. I applied salves, swallowed the prescriptions I had delivered, did the physical therapy exercises to try to amend the neuropathy in my hands and feet. The numbness, instability and inability to walk unassisted was a shocking and humbling reminder of the immobility so many millions cope with every day — not to mention the lifetime of mobility I had taken for granted.
For close to six months, I could not walk without a cane, or I had to be pushed in a wheelchair or hold on to a friend, sibling or son. I could not button clothes or use a pen to write. But I could type and sit at my desk, so I worked as best I could whenever I could.
I stayed quarantined, as the doctors told me to do, because for several months my test results showed I was not well enough for a COVID-19 booster and COVID was surging in my area. I masked at the hospital and mostly stayed in my house when I was not seeing a doctor or being treated. I did not go out unless it was for a medical appointment or with a gathering of no more than four people who were always masked too. I had my groceries delivered.
I was lucky. Because I was not tolerating the chemo well, my medical team moved my surgery from December to October, and I had a radical mastectomy on my left side. Thankfully, my chemotherapy had worked and all 11 of the lymph nodes my surgeon removed were cancer-free.
Post-surgery, taking and applying medications, emptying drains, and tending wounds kept me locked in a cancer-sick mindset. The sores on the inside of my mouth and tongue were healing, but eating was still torturous. Most food tasted like it had been doused in gasoline. Still, I was lucky. Friends brought over simple, healthy foods or had meals delivered.
After surgery, I had two more months of weekly chemotherapy appointments, followed by 30 radiation treatments that burned my insides and made my body feel like it was a thin sheet of crumbled newspaper stoking a campfire.
The pain from the surgery and a cavalry of fear-filled thoughts marching across my brain kept me from sleeping well, but I was lucky to have a calm, quiet place to sleep. I felt depleted when I woke up, unable to work my normal long days in one stretch. I grew tired in the early afternoon and would nap before going back to my desk to continue working.
Someone was always checking on me. So many do not have that support or even a peaceful place to lie down.
Despite my devastating diagnosis and my painful treatment, I know I was extraordinarily lucky and, of course, I know not everyone is. I have insurance, a team of doctors who listened, a wide support network of family and friends, and flexible remote work as an independent contractor. I live in a middle-class suburb near a major hospital system. I am white.
A new study from the Kaiser Family Foundation found that Black people, Hispanics, American Indians and Alaska Natives are worse off than white people in a majority of measures it studied related to health and health care.
The American Cancer Society reports that “one-third of Black American women reported experiencing racial discrimination during a visit with a health care professional.” There is also a higher mortality rate for Black people with cancer.
It shouldn’t be this way. Everyone should have access to the care I received and the means to afford it. They should have medical teams that listen to them, as mine did, no matter what they look like, where they live, or what kind of treatment they need.
I was lucky, but with better health care education and medical training to eliminate bias, research that involves inclusive clinical trials, and providers who are informed, compassionate and offer solutions for best outcomes regardless of patient identity, survival would not need to depend on luck or circumstance. It must be and can be universally fair and equitable.
Following my final chemo treatment, my nurses gathered on the chemo floor as I rang the bell, the global ritual for finishing cancer treatment.
It was a glorious sound every person undergoing treatment deserves to hear for themselves, so I rang it twice.
Michele Weldon is an award-winning author, journalist, TEDx speaker, and emerita faculty in journalism at Northwestern University and senior leader with The OpEd Project. She is the author of seven nonfiction books, including her latest, “The Time We Have: Essays on Pandemic Living” and has written chapters in seven anthologies. Her work has appeared in The New York Times, The Washington Post, CNN, USA Today, Salon, Chicago Tribune and more.
Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at pitch@huffpost.com.
