Reading: The Cancer No One Talks About

It began with three words: “heterogeneously dense breasts.”

It was just a note in the findings of the report on my regular mammogram that said, basically, everything looks fine, except that we can’t see everything because you have dense breasts, “which may obscure small masses.” It said my lifetime chance of breast cancer was 8.12%, even though I had been on Estrogen-Progestin Therapy (EPT) which, according to the American Cancer Society, raised my risk to 8 more cases per 10,000 per year. When I’d hit menopause, my excruciating cluster headaches (think brain freeze x100) had moved from intermittent (coming and going every few years) to chronic (every day), so I gambled that bringing my body back to hormone happiness might help. Since there was no breast cancer in my family, my doctor and I thought it was worth a try.

The headaches didn’t disappear, but I was able to manage them with one medication. Plus, I had seven years of blissful sleep and amazing skin.

The Dangers of Dense Breasts
I’ve had dense breasts my whole life. That’s why my mammogram always included an ultrasound. When I moved to New Orleans, however, I learned that they don’t do ultrasound. So, after this “we-can’t-see-everything” mammo, I called my GP and said, “This sounds like a CYA letter. What do we do next?” He put in an order for a six-month follow-up MRI so that I would be assessed at six-month intervals. 

At month six, I felt a lump that I could roll. Remembering that I’d been banned from doing my own breast assessments by a surgeon I’d seen when I thought something was up several years earlier (he’d said what I was feeling was the edge of the breast and not a lump — but how would I know?), I set up the MRI. 

They found two spots that needed biopsies. Which they could schedule in about three weeks. 

Three things in one breast and we’d get to an investigation in three weeks? While I love the laid-back, we’ll-get-to-that-after-Mardi-Gras attitude of my adopted town, dawdling for health answers clashed with my New York get-it-done temperament.

I started having nightmares and losing sleep; the fact that my GYN ordered me off the HRT cold turkey didn’t help. I introduced EFT tapping into my morning meditation practice just to stay sane. Even though I’d written or edited thousands of articles about breast cancer during my years of editing magazines (including Redbook’s award-nominated “What to Do When You Find a Lump”), I was spinning.  

Finding the Best Cancer Center
When I was fed up with the anxiety, I summoned my professional girlfriend network to help me figure out where to go instead. A breast surgeon friend said she could biopsy by the end of the week if I could get up to Pennsylvania. My Redbook publisher, a breast cancer survivor and advocate, offered to hook me up with her doctor at Memorial Sloan Kettering in New York. My research, however, showed that one of the nation’s top cancer centers, MD Anderson in Houston, was just an hour by plane… I could even drive! 

I called my girlfriends in Houston.

To be honest, one of the basic questions I was struggling with was whether I should even start at a top cancer center.

Various doctors had been digging in my left breast for years: I’d had surgery right after delivering my first child to unearth a benign fibroadenoma; there were cysts plus about four other clean biopsies. I joked that if I were ever found dead, the way they could identify my body was not by my dental work but by the six metal clips in my left breast. 

Of course, from writing and editing so many articles about women’s health, I also knew that one of the drawbacks of MRI screening is that it can pick up spots that turn out to be nothing. In fact, according to studies, such “false positives” can range from from 52 to 97 per 1,000 cases. 

I was sure that this would be nothing.

Or was I?

I reached out to a friend from the beauty business who connected me with her friend who had just been through treatment at MD Anderson, and within a week I was walking the halls lined with artistic displays of cowboy boots for a mammogram, sonogram, and the biopsies. The lump, which made the nurse frown (!!!) when she felt it, turned out to be nothing and the two spots were clean as well. But to make 100% sure they had sampled the correct spots, the radiologists added marker clips and put me through one last MRI. When I got home, they messaged me that the clips showed they’d missed sampling one of the lesions. I could come back for an MRI-guided biopsy or do it in New Orleans. 

Since I was zero for three so far, I set up in NOLA.

Three weeks later, the NOLA radiologist looked at the spot through the MRI machine and said it looked much smaller than in the initial report. “You know, it’s so small that ordinarily we might not even do a biopsy,” she said. “But since you’re here, we may as well just go ahead.” I figured she was also proceeding because the PA I’d seen the day before had asked if she and an intern could come and watch the procedure, which they’d never actually seen live. 

And “much smaller” meant it couldn’t be cancer, because cancer doesn’t shrink!

The radiologist told me to look for a report in 5 to 8 days.

The News I Didn’t Expect…
I’m at dinner in New York with my friend Francine, who had just stepped away from the table to use the bathroom. I decide to open my phone to search for the report in the Ochsner app, and my heart freezes: “Invasive ductal carcinoma…”  That’s all I can read before the room disappears beneath my feet. When Francine returns, she asks: “What’s wrong? You look like you’re in shock!” I hand her my phone. She reads the report and tells me I’m going to be okay. Francine had been a nurse in her early years. She tells me she’s had this exact same thing — maybe a stage lower — and had just finished her five years of endocrine therapy. She explains, “Invasive means it’s just broken out of the duct but it’s not the end of the world. It’s small.”

According to Johns Hopkins Medicine, breast ducts are “the passageways where milk from the glands (lobules) flows to the nipple. Invasive ductal carcinoma is cancer (carcinoma) that happens when abnormal cells growing in the lining of the milk ducts change and invade breast tissue beyond the walls of the duct.” The danger is that if not caught early, the cancer cells can spread, breaking “into the lymph nodes or bloodstream, where they can travel to other organs and areas in the body, resulting in metastatic breast cancer.”  

My very long saga ends with the fact that though I don’t consider myself a “lucky” person (the last thing I “won” was a musical jack-in-the-box at age 5), I drew the luckiest cancer cards. I had the easiest to treat, estrogen-positive, tiny (pea size), slow-moving tumor that had not invaded a lymph node. My fabulous surgeon, Dr. Abigail Caudle, and her fantastic team at MD Anderson did such a beautiful lumpectomy that I had to hunt to find the incision around the nipple. My age and type of cancer dictated only one week of radiation and then endocrine therapy by pill (which I’ve just begun) for five years. My doctors answer all my questions, share research papers, and treat me with incredible care. 

Becoming a Proud Breast Cancer Survivor
I am, however, still adjusting to the fact that though I am cancer free, I’m now “a cancer survivor.” When I hear insurance commercials on TV say “if you’re healthy…” I still say to myself, that’s me. And then I realize, oh wait, it’s not me. There’s a lot of cynicism out there about “The Cancer Industrial Complex,” and conspiracy theories abound about how the drug companies don’t want to find a cure because cancer is such a big business. And when I drove through the MD Anderson complex I did wonder how many millions — and how much disease — it took to build all those glass towers.

But there is no question that things are changing fast and survivability is increasing. Though breast cancer accounts for about 30% of all new cancers in US women, “the 5-year survival rate for [those] with non-metastatic invasive breast cancer is 91%” according to research from BreastCancer.org. If the cancer is located only in the breast (which mine was), the relative survival rate is 99%. As my plastic surgeon, Mark Clemens, explained: “Years ago, when women had what you had, we’d take both breasts and lots of muscle. Think Nancy Reagan.”

I was indeed lucky. And here is the freaky thing. When I tell friends about my breast cancer, half of them tell me, “Oh, yeah, I had that, too.” They don’t like to talk about stage zero or stage one because it was so treatable. Because there is no drama (such as chemo), some say they feel embarrassed to admit they’ve even had cancer — especially when other women with later stages are going through such harrowing experiences. One friend’s kids call her DCIS “baby cancer” — as if it’s not serious. Another friend says it makes her feel like a “cancer impostor.” Another friend who took HRT is embarrassed to mention it because she feels she might “have given it to myself.”

At one point I was wishing we had another word that was not so frightening to describe this kind of cancer.

But here’s the truth: cancer is cancer and it’s nothing to be ashamed of.

I know as many people who were not on HRT and got breast cancer as those who were on HRT. In fact, when I asked the radiologist doing my sonogram if she thought HRT gave me cancer, she said, “I see people on this table who are not on HRT with cancer and those who are on HRT and are 80 years old without.” Yes, others are going through awful, terrifying cancer treatments, but that does not negate your experience. Many of us may want to ignore this first real brush with mortality. But the fact is, any encounter with the Big C changes you. It does make you ask, “Am I living the life I want to live? Is there anything I need to change?” And it’s a good time to reassess and possibly reinvent. 

But talking about this “baby cancer” must be a regular part of our disclosure with friends and family. Here’s why: it’s so that if someone you know gets it, they won’t panic because they already know the hundreds of survivors like you and me in their company. 

What You Need to Know About Surviving Breast Cancer
Though I hope you never get diagnosed with breast cancer, here are a few critical things to know if you do:

• Don’t put off your yearly mammogram. According to a recent MedStar Health survey, 59% of women over 40 say they “forgo the recommended routine exam on a yearly basis;” 23% have never had a mammogram! Please don’t let this be you. Catching cancer early really does change the outcome.

• If you have dense breasts, insist on a follow up sonogram or MRI. The lump I felt was nothing. It was the MRI that picked up cancer. Later on, I heard from the NOLA PA that when the radiologist who did the MRI biopsy got the positive results she “freaked out” because even she didn’t think the spot was anything! 

• If something doesn’t feel right, push your doctors. If I hadn’t pushed my GP and the radiologist for next steps, I might be dealing with something harder to treat.  

• Start with the best cancer center you can find. At MD Anderson, they say where you are treated first for cancer matters most. That’s because you never know if you’ll need a super-duper specialist to handle some funky variation (luckily mine was a boring, vanilla, everyday species). And you want deep, deep knowledge. MD Anderson claims to see more cancers in a day than many doctors see in a lifetime. I have friends with stage zero DCIS who were given six weeks of radiation compared to just one of mine. When I asked my radiologist why, she said, “Maybe they aren’t up on the latest research.” 

• Don’t be afraid to ask questions. I’m a big researcher. That’s how I make my way in the world. Some of the doctors were surprised: “Wow, you’re really up on things.” None of them were challenged by my knowledge and were happy to explain whatever detail I needed.

• Know that in many cases, cancer may not be an emergency. For me, part of the freak out was the slow pace of treatment. When I really dug into it, however, friends with MDs told me that the three weeks I would have had to wait for biopsies in NOLA wasn’t going to make a difference in outcome. What they did say, however, is that you can’t get those three weeks of awful worry back, either. Ask your provider: Is this an emergency or can we take our time for next steps?  

• Reach out to your friends for help. If you’re over the age of 40, your friends or colleagues have been here already. They’re just not talking. Put it out there and see the survivors among you. I can tell you from experience, not all breast cancer is a death sentence.