MY BREAST CANCER AND YOUR SURVIVAL What anyone who was downtown on and after 9/11 needs to know

According to the American Cancer Society, there are nearly 290,000 new cases of invasive breast cancers diagnosed every year. Like me, I am sure you can name an aunt, a friend, a sister, a roommate, or a mother who has had it or currently has it. It is the most common cancer in women in the United States, affecting one of every eight women.

In March, I became the one of eight. After an annual mammogram, I was diagnosed with stage 1 ductile carcinoma. It’s the most common and treatable breast cancer, and with my early detection, I am in shape for a good outcome.

But for me, a 43-year-old woman with two kids, the diagnosis was — and still is — a shock.

I grew up in the shadow of my paternal grandmother’s breast cancer, a diagnosis she got at age 48, in 1982, before there was genetic testing or many treatment options besides mastectomy. She beat that cancer and didn’t spend any significant time in my life publicly worrying about it coming back.

“What will be will be,” she often told me, and she was right: her cancer only came back nearly 40 years later in her uterus, and eventually claimed her life three years ago, when she was 84.

Still, with her decades-long success story in hand, I have spent much of my life unconsciously worrying about breast cancer, and all cancers, really. I’ve done all the “right things” to avoid it: I exercise five times a week, I don’t smoke. I’m at a healthy weight, I eat well and I’m not a heavy drinker. I go for routine exams because I am proactive and believe in taking care of myself.

The American Cancer Society recommends women begin screening at age 45, but women aged 40-44 can choose to get them sooner. I started screening at 40, because I thought, you can’t be too safe. Like many women, I have dense breasts. That made me insist on a sonogram (ultrasound) to accompany the mammogram, even though my insurance company doesn’t like paying for it.

So, in February, like I have the previous two years, I went for a mammogram and sonogram.

The mammogram didn’t pick up any abnormalities. But the sonogram did, and that sonogram that no one likes to authorize may well have saved my life.

What happened next is something of a blur: I was told to get a biopsy, which was nearly impossible to schedule. I couldn’t get an appointment for two months, and I tried five different places. Each one told me, “We’re booked through June,” or “We only have one tech.”

The pandemic has done our collective health no favors, claiming a million lives due to COVID, and exhausting our medical professionals to the point of no return.

People have returned to the doctor’s office, and the procedures they’ve put off are piling up. Conditions that could have been treated early and simply now require more attention, and there’s little wiggle room for patients with new conditions. After 10 days of trying to get an immediate appointment anywhere, I was in full-blown freak-out mode. I started calling places in New Jersey when I was offered a last-minute appointment for a biopsy nearly three weeks after I started searching. That visit led to an awful phone call.

“Amanda, unfortunately, your tumor is cancerous.”

A few days later, as I sat in the surgeon’s office, I still had a hard time registering that sentence. She discussed treatment options; my husband and I wept.

Breast cancer mainly occurs in middle-aged and older women. My doctor’s first question was: What have you been exposed to? She cared little about my grandmother’s diagnosis because she was BRCA negative, meaning she didn’t carry the gene that indicates a marker for certain cancers.

The doctor went down the list of common cancer-causing exposures. When she asked whether I’d ever lived and worked near the World Trade Center site, her face tightened when I said yes.

“That makes sense,” she said. “We’ve seen an increase in patients like you in the last year. Are you registered with the WTC Health Program?”

When I said no, she told me to enroll immediately, and set me up with a social worker to help navigate the process.

I have spoken long and often about my experience on 9/11.

I responded that day, and hundreds of other days after, as my first role as a journalist was to produce segments for a show dedicated to the city’s rebuilding efforts post-9/11. If it was WTC-related, I was on it, or I knew about it. I spent time at St. Paul’s Chapel, at the Family Room, at Lower Manhattan Development Corp. meetings. I prided myself (and still do) on being a vessel for the victims who couldn’t speak for themselves. And I became an ally for the families and the first responders who struggled with moving on, with rebuilding a site that is sacred to so many.

But in all my years of coverage — even later reporting extensively on the inevitable health impacts of that dust and debris — I had never signed up for the health program.

I guess it felt like something for the first responders, and not for me. But I should have, because the program is FOR people like me who spent time downtown in the days and months following the attacks.

It is odd to find myself part of a story I have reported on in the news. It is even more bizarre to accept the cancer, certified by the WTC Health Program, is a result of the work I did so early in my career, work that defined who I am and what kind of reporter I wanted to be.

It’s also extremely serendipitous that I now work for the Fire Department as its press secretary. In the year since I’ve had this job, I’ve seen notification after notification about members who have died of 9/11-related illnesses, statistics that have always saddened me but now also scare me to death. But there is comfort in being here, for this time in my life, among so many kind and knowing eyes. Amidst people who understand exactly what I am going through, and from whom I don’t have to hide my suffering, and my sorrow. For whom the shape of 9/11 has changed in two decades, but at its core is still the same: heartbreak.

Of the World Trade Center Health Program’s roughly 110,000 members, about 79,000 are responders. That category includes FDNY, as well as others, like me, whose exposure was due to ongoing work at or near the site. A bit more than 31,000 people are enrolled as survivors.

Despite all I learned about the program over the years, contacting it as a potential participant was still surreal. Thanks to the assistance of some excellent caseworkers, I was able to expedite my application ahead of an anticipated surgery. My cancer was certified as 9/11-related just weeks after applying, opening a door of health coverage and support that has been simultaneously overwhelming and reassuring.

Breast cancers were certified by the program as an approved 9/11-related cancer in 2013. It took a man’s breast cancer diagnosis to enable similar coverage for women survivors and responders. Since then, breast cancer is the most common cancer found in women in the program, with about 2,000 diagnoses so far.

My cancer journey is just beginning, and I am terrified. My breath has been taken away, honestly. I feel like I have so many words, and then none. Overwhelmingly, I am aware that I am lucky: My early intervention will save my life; advocating for myself will lead to a good outcome. But in this regard, I am not typical.

Health issues aside, there is much that troubles me about this experience. Start with the screening. According to the National Cancer Institute, nearly 50% of all women aged 40 and older have dense breasts. Women with dense breasts can be twice as likely to develop cancer as those without. Dense breasts make it harder for mammograms to pick up cancers. And while mammograms are excellent detection tools, they provide optimal results for women with dense breasts while used in tandem with sonograms.

My cancer wasn’t visible in a mammogram; if I hadn’t asked my doctor for a sonogram prescription and been given one, I would be walking around today thinking I was healthy. One oncology nurse told me she believed dense breasts, like family history, should be considered a high-risk marker for a woman’s likelihood of developing breast cancer. It is time to make it required that anyone with dense breasts be given a sonogram/ultrasound without asking or insisting. Early detection is everything.

Second, it shouldn’t be so hard to get a medically prescribed appointment. This isn’t plastic surgery; this is cancer. I’ve heard horror stories from people who wait months for appointments, desperately calling everyone they know to help get them in with a doctor. It’s outrageous that our health-care system requires you to play the game of who-you-know when it comes to treatment plans. People’s lives hang in the balance. In that space of waiting, tidal waves of crippling anxiety creep in; I cried while asking for an appointment on more than one occasion.

If you can’t get an appointment quickly, be annoying. Get your referring doctor involved on your behalf. Call the office of the specialist you’re trying to schedule with and speak with a nurse and an office manager. Explain that it’s urgent. Ask to be added to a cancellation list. Be flexible about dropping everything if you’re called with a last-minute availability.

It’s barely been a few months, and sadly, I’ve already learned more than I ever wanted to know about navigating cancer. This has been the most difficult mental challenge of my life. Fear is debilitating. I’m learning to be present and positive and accept what I can’t control.

Finally — and this is really the most important thing — I implore you, especially if you’re a reporter like I was: If you’re not enrolled in the health program and you were at the World Trade Center site on 9/11 or any days in the months after ... what the hell are you waiting for? The federally funded program is there to help you. And believe me, if you get a cancer diagnosis, you’ll want the help.