After a couple of abnormal-looking mammograms taken in my late 40s, I needed follow-up ultrasound exams. It turns out that I have numerous fluid-filled sacks in my breasts called cysts, which are common among women, but they can make interpreting a mammogram more challenging. In cases like mine, doctors often use ultrasound exams to further screen for breast cancer.
The results from these first nerve-racking ultrasounds came back in my favor each time. While waiting, my mother would reassure me, “Your Grandma had ‘cysty’ breasts, too, but she never had breast cancer.”
First Surprise: Needle Biopsies Can Be Difficult
That’s when I learned the first surprising thing about breast cancer: needle biopsies are real medical procedures and can be physically and emotionally difficult. I no longer take them lightly.
Because I didn’t want to cause myself unnecessary worry, I tried to be nonchalant about the biopsy. I also wanted to prevent this pesky procedure from disrupting my work. Looking back, I wish someone in scheduling would at least have given me a heads up about taking the morning off after a biopsy and maybe even asking a friend to drive me to and from the hospital.
Without me knowing, the area the doctor tested turned out to be quite close to my chest wall. This might have explained the unexpected twinge of pain I experienced during the procedure. When I flinched, the doctor asked me how I was doing. Then she gave me additional anesthetic. From that point on, though, my tension increased as I anticipated the possibility of more unexpected pain.
After the doctor finally removed her long needle, I thought I could relax. But then, without warning, one of two young technicians assisting in the room started pressing down on my breast with both her hands.
Although my breast was numb, having someone suddenly push down on such an intimate part of my body—with no notice or explanation—further upset me. I stayed quiet, though, and kept acting like a grown up as best as I could.
With tears rolling down my cheeks, I tried to soothe myself and stay calm.
“How much longer are you going to press on my breast?” I asked her.
“Three minutes,” she said, as she kept me pinned to the table with her hands. Three minutes have never lasted that long.
After being released off the table, I was told I’d need a mammogram immediately. “What?” A mammogram is painful under normal circumstances. During biopsies, a small metal marker is placed in a woman’s breast for future reference. A mammogram after a biopsy confirms the location of this metal marker.
Maybe knowing beforehand that I’d be placed in the vice grip of a mammogram machine after my biopsy, I would have been better able to deal with this news. But maybe not.
As I leaned into the familiar jaws of this machine, I felt myself go weak and lightheaded. I alerted the nurse that I thought I was going to faint.
“Please try to stay standing,” she said. “I can finish this quickly.”
“I don’t think I can,” I said, letting her know any second I’d be falling down.
Scurrying to another room for a chair, she rolled it underneath me just in time and handed me a small bottle of apple juice. After regaining full consciousness, I got through the mammogram. Then I spent 15 minutes lying on a recovery table before driving myself to a 10:00 a.m. meeting with clients, who had no idea what I’d just been through.
Looking back, I think I took the biopsy lightly because I wanted to pretend it wasn’t happening. At the end of a predictably hot June in Arizona, I was getting ready to fly home to fulfill a dream of mine to work at a distance and spend at least one month with family in the cool mountains of Utah and then Wyoming. The summer was supposed to be the beginning of my virtual business and my new life.
“Don’t worry about the biopsy,” I kept telling myself. “Don’t let anyone know anything’s going on unless you have to.”
As it turned out, I couldn’t keep the biopsy from my family for long. The pain made me barely able to pick my luggage up off the carousel in the airport and then completely unable to lift my luggage out of my sister’s car without her help.
I thought, “How am I going to keep this a secret?” My mother was the first to notice. I told her in private about the biopsy and reassured her there was nothing to worry about.
“Don’t fret about the test results,” I told her. “I’m sure I don’t have cancer.”
It was July 2nd. My twin sister, my mother, and I had pulled off a small miracle getting all three of us together to celebrate the 4th of July in Utah. We had tickets to the annual “Stadium of Fire” evening extravaganza at the local university football stadium. Our time together was meant to mark the beginning of better days ahead, since Sarah and Mom had been dealing with their own challenging health problems.
On July 3 at 4:55 p.m., the day after my biopsy and just before he closed his office for the holiday, my doctor in Arizona called me in Utah. First he apologized for giving me this news by phone, but he knew I’d been planning to be out of state for a month. He urged me, instead, to return to Arizona as soon as possible to meet with a specialist. I had breast cancer.
“Well, there go our better days ahead,” I thought. Then I slowly walked downstairs, afraid to break the bad news to my mother and sister, who were already dealing with chronic illnesses themselves. I was supposed to be the healthy one. The strong one.
The three of us spent July 4th, 2013 in shock. We tried to stay calm, positive, hopeful, and strong together, but we were profoundly sad, worried, and afraid about what the future would hold. We forced smiles, fun, and celebration, but it was tough to pretend, even for each other’s sake.
I postponed all my summer plans indefinitely. It was like I’d just fallen through the bottom of my newly created world—stunned.
On July 5th, I kept trying to reach the doctor who had performed the biopsy. Finally, by mid-day, I got the news that I had treatable, early stage breast cancer. I felt relieved. My twin sister was inconsolable.
Second Surprise: My Greatest Fear was Financial
A year before my diagnosis, I had resigned from a benefits-paying job at the university to become a self-employed, self-insured businesswoman. I was dealing with an unreliable stream of income, and, as I never would have imagined, facing the emotional fear, anxiety, and even anger that I had had to choose a $15,000 deductible on my already-expensive insurance policy. This financial worry felt worse than facing a potentially life-threatening illness.
I’d personally witnessed many other women survive breast cancer. My own younger cousin had tragically died of breast cancer in her early thirties after a five year, heroic battle, but given what I had been learning about different forms of breast cancer, I believed I would likely survive my own cancer.
So dying didn’t keep me up at night. What kept me up at night was this unrelenting fear about how I would stay ahead of the inevitable medical bills and support myself as a single woman and a small business owner. I had always been responsible with my money and had never been in financial distress before. The degree of fear I experienced was irrational, since I’m sure family or friends would have helped me financially, if I had needed it. But I didn’t want to have to ask. I was too embarrassed. I had gotten myself into a financially vulnerable position, so I had to work it out. And I did.
My compassion for uninsured or underinsured people facing any illness, let alone a chronic or serious illness, multiplied exponentially during this period of my life.
I was surprised to discover that what worried me as much or more than repeatedly facing needles inserted into the most sensitive areas of my breast while wide awake, was the amount of money each test and every treatment was costing me.
Third Surprise: A Wide Range of Treatment Options
When I returned to Arizona to begin meeting with various doctors and researching breast cancer treatment options, I was surprised to learn that no matter what stage of breast cancer a woman faces, she has a wide range of treatment options to choose from, depending on her own individual circumstances and preferences.
For example, even though my breast cancer was early stage and the size of a small pea, I could have opted for a double mastectomy. This shocked me. I couldn’t believe I was even meeting with a plastic surgeon to discuss this option. It seemed surreal and extreme.
However, many women choose this option because of a family history of breast cancer or because they never want to face the threat and anxiety of dealing with mammograms, ultrasounds, needle biopsies, and breast cancer again. Other women, like me, choose more conservative options. Then, if they have additional incidences of breast cancer, they might choose to have a single or double mastectomy later.
For me, a double mastectomy would have been more expensive and traumatic than I could handle at the time. I wasn’t ready to do away with my breasts. I felt too young and optimistic about the option I finally chose: a lumpectomy (also known as a partial mastectomy), followed by six weeks of daily radiation.
Earlier this year (one and a half years after my surgery and radiation), I had another abnormal mammogram, causing me to revisit the financial worry and fear of facing breast cancer treatment again. This time, if the biopsy indicated my cancer had returned, I knew I would likely choose a double mastectomy. I didn’t want to go through any of this again, including having to pay for very expensive biopsies. Fortunately, this most recent stereotactic biopsy came back negative. I’m happy to report that I’m still cancer free.
This second scare, however, had me realize that if breast cancer was going to be an ongoing issue for me, I needed to talk with more women who had faced my same journey. In March, I contacted Banner Desert Cancer Center and began attending a breast cancer support group and other activities—yoga each Monday evening and a special Day of Art for cancer survivors.
Fourth Surprise: Stage 1 is Breast Cancer Too
This spring when I attended my first breast cancer support group, I was surprised to learn that being with these women, who had been treated for cancer at many different stages—including terminal cancer—made me realize that I was one of them.
Before going to the support group, I had been minimizing my experience as “only” a Stage 1 breast cancer survivor, even ignoring the fact that I’m still being treated for cancer to help ensure the disease doesn’t return. But because I hadn’t lost my breasts or my hair, I’d been negating the reality and the difficulty of my cancer experience.
Talking with these women helped me see the obvious: I had undergone disfiguring surgery, radiation, skin burns from radiation, frozen shoulder, extreme fatigue, and more severe and frequent hot flashes than I should have to experience now because I cannot use hormones to treat my menopausal symptoms—breast cancer feeds on estrogen.
I also have to deal with the cost and inconvenience of taking Tamoxifen and extra calcium daily. I cannot eat grapefruit (no big sacrifice) because it interferes with drugs like Tamoxifen. I’ve been seeing my oncologist and having blood draws and mammograms four times a year now for two years. This frequency will end in December 2015. Then I’ll gladly shift to having blood draws and mammograms only twice a year for the next three years.
Realizing that my breast cancer is just as valid as any other woman’s breast cancer has been a huge surprise for me. I’m grateful that in my case, the breast cancer screening system worked. It detected my breast cancer early so I could be treated, survive, and continue living my life and building my business.
I’m now proud to call myself a breast cancer survivor. Even though I realize it’s a bit late, I’m grateful to be one. It means I’m not alone.