In the early fall of 2015, my daughter and I were on our way to our favorite nail salon to get picture-perfect ready for a gala later that evening at Lincoln Center for the Performing Arts in New York, when I got a call from my gynecologist saying I had “flunked my Pap test.” The Pap smear showed atypical glandular cells of uncertain significance, she explained, and “although it was probably nothing,” I needed to come back to the office for further tests.
In a few months, I had gone from a high-functioning writer and communications executive to a patient with cancer, and it was difficult to reestablish a sense of self.— Cynthia Hayes
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After we hung up, I continued to walk to the nail salon, still trying to comprehend what I had just been told. It wasn’t until I did a Google search of the term and learned atypical glandular cells are markers for several types of cancer, including, it turns out, mine—uterine papillary serous carcinoma—that I started to panic. Photos from the gala show that my nails were perfect, but my face already revealed my distress.
My best friend had died of cancer just 9 months earlier, and I was convinced that I, too, would succumb to the disease.
Choosing a Compassionate Surgeon
After an endometrial biopsy confirmed a diagnosis of uterine papillary serous carcinoma, I was devastated. Although I didn’t know the stage of the cancer at that point, I knew this cancer was very aggressive and I needed to act quickly if I were to have a chance for a cure. Within hours of my biopsy results, I had made appointments with a radiologist for computed tomography (CT) scans of my torso to determine whether the cancer had spread to other organs and two top surgical oncologists my gynecologist had recommended, who would likely perform a radical hysterectomy and bilateral salpingo-oophorectomy.
It is remarkable how differently these two surgeons approached their interaction with me. The first one warmly shook my hand when I walked into his office, and after reviewing the CT scan results, reassuringly said, “Cynthia, there are two types of cancer; the one we can deal with and the one we can’t. Yours is a cancer we can deal with, and I’m telling you right now, you don’t need to worry.” It was the first time I was actually able to catch my breath since I learned I had flunked the Pap test, and I could feel my anxiety level dropping.
The following day I met with the second surgeon, who not only didn’t shake my hand when we met, he never even made eye contact with me. Instead, he spent the whole visit talking to me in the most technical terms about the virtues of robotic laparoscopic surgery and explaining where he would make the tiny incisions to remove my uterus, fallopian tubes, and ovaries. I felt he never showed any human warmth. I had the feeling that he saw me as just another patient with a tumor to remove, not as a whole person with a life, family, friends, and a future. I could feel my anxiety rising again, but he made my decision very easy. I chose the compassionate surgeon. And, as it turned out, the location of my tumor and the size of my uterus made it impossible for me to undergo laparoscopic surgery anyway.
Putting Back the Pieces
The pathology examination of the tissue and cell specimens from the hysterectomy and surrounding lymph nodes showed the cancer was confined to my uterus. It was stage I, which was extremely good news. Still, because uterine papillary serous cancer is so aggressive, my oncologist recommended that I undergo six rounds of a combination chemotherapy regimen of carboplatin and paclitaxel.
Although he counseled me on what to expect from the treatment’s physical side effects, I was unprepared for the completely unrecognizable person I soon saw looking back at me in the mirror. With my hair, eyebrows, and eyelashes gone, I no longer looked like myself. Even worse, the treatment had sapped me of my energy and dulled my mind, so I also didn’t feel like myself. I wondered if I would ever be the same again after treatment was over and I was in recovery.
I also wasn’t prepared for the lingering anxiety and emotional swings I experienced following completion of my treatment. After all, what if the cancer recurred? In a few months, I had gone from a high-functioning writer and communications executive to a patient with cancer, and it was difficult to reestablish a sense of self.
Suffering in Silence
As the months passed and I became physically and mentally stronger and more confident that I was likely cured of my cancer, I started connecting with other cancer survivors who had completed treatment; I learned they, too, experienced the same type of emotional whiplash I was having. The feelings of exhilaration that came with an all clear after a 3-month checkup, followed by high anxiety in anticipation of the next one, were recurrent themes. The more I spoke with these cancer survivors, the more clearly I saw other patterns emerge. Feelings of isolation, depression, anxiety, and uncertainty about the future were frequent, yet caught many of us by surprise.
Even though I had experienced emotional turbulence when I was in active treatment, it never occurred to me to talk about it with my oncologist. I blamed myself for my perceived emotional weakness and vulnerability, not understanding that these feelings are foreseeable and are even driven by the chemical changes that cancer and its treatment produce. And, from my unscientific, limited sampling of other cancer survivors, these emotions were pretty universal.
I am sure I looked like I had things under control—I have always put on a brave front. But no one on my medical team told me to anticipate emotional side effects. And no one asked me about my emotional state or inquired whether I would like a referral to talk with a social worker, psychiatrist, or psychologist. I didn’t know psychosocial help was available, so I suffered in silence.
The lessons I’ve learned through my own experience with cancer and in talking with other survivors led me to launch The Big Ordeal (thebigordeal.com), a website for survivors and caregivers struggling with the psychological impact of cancer. I’m also a mentor in the Woman to Woman program at the Mount Sinai Hospital and the Blavatnik Family–Chelsea Medical Center at Mount Sinai in New York City, which provides one-on-one peer support to women undergoing treatment for gynecologic cancers. Recognizing that the psychosocial effects of cancer aren’t unique to American cancer survivors, I’ve also become involved with Global Focus on Cancer (globalfocusoncancer.org/about), a nonprofit organization dedicated to decreasing the stigma of cancer and raising awareness of the benefits of early detection in low- and middle-income countries as well as peer support.
The work is rewarding and challenging, but I never imagined it’s what I’d be doing at this time in my life. This disease changes you in big and small ways. I wish I never had cancer. But rather than think about what it has taken from me, I choose to focus on what it has given me: a focus to use my experience and expertise to help others, because no one should have to go through cancer alone. ■
Ms. Hayes lives in New York City.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.