I Don’t Have Cancer, Just An Awful Conundrum
by Ilona Fried
As an eight year old, I once stood nearly naked as a Swiss doctor inspected me. My parents, alarmed by a discoloration on my neck, brought me in to be examined. Stumped, the physician invited colleagues into the examination room. As the group of white-coated men milled around, I felt like a specimen on a slide. They murmured amongst themselves, apparently mystified. Or perhaps they engaged in polite theater, giving the impression of serious consideration so as not to embarrass my mother and father, a physicist whose summer job had brought us to Europe. The diagnosis? A poorly washed neck.
Not everything that looks suspicious is necessarily a problem, or urgent.
At the end of 2017, the radiologist who reviewed my mammogram told me she spotted something and recommended a needle biopsy. I asked to see the area of concern. On a computer screen, she showed me a barely perceptible cluster of cells whose characteristics hinted at the possibility of cancer. Still, without symptoms or a lump, I wondered if she’d scrutinized the image too insistently, looking for trouble too soon. In theory, I could have refused the biopsy, preferring to wait. But a friend of mine, before passing away, endured gruesome surgeries in trying to save her life from an aggressive cancer that mammography didn’t catch. My mother developed breast cancer almost 12 years ago when she was 70, detecting it early.
Better safe than sorry, I told myself.
When I checked into the hospital for the biopsy, I signed several forms. The medical staff had me voice what they were about to do and why, part of obtaining consent. I signed more forms agreeing to the procedure. At each of these points before I lay facedown on the table, stripped from the waist up, I could have changed my mind and left. I didn’t. After the doctor removed a bit of tissue and inserted a tiny metal marker, I had another mammogram to record its location. After several days of agonizing waiting, I got a phone call from my primary care doctor telling me I had cancer and I’d need to meet with a surgeon and oncologist.
Freaked out, I asked my younger brother, whose wife and many acquaintances have survived breast cancer, to join me in late January to meet the surgeon (who reminded me of Van Jones). Contrary to what I’d heard, he explained I did not have cancer, but a 3-4 times higher risk of developing it than women my age. Surgical excision would remove all suspicious cells. As I absorbed these facts, my younger brother raised the possibility of genetic testing. Being of Ashkenazi Jewish descent, it’s possible I inherited a BRCA (“braca”) gene, associated with higher risks of breast and ovarian cancer. Those who test positive often opt for preemptive bilateral mastectomies and oophorectomies. After my mother learned she was BRCA negative, I assumed I was in the clear. While her cancer didn’t warrant radical surgery, she decided to have her breasts removed to relieve herself of future procedures. At the time, her decision struck me as barbaric rather than badass, even though she fought against a conservative medical establishment to have her wishes honored. Eventually, she convinced a senior female surgeon to do the job.
That my brother and Dr. “Van Jones” began bandying about BRCA testing bothered me. For a moment I felt like my eight year old self, emotionally invisible as men had a discussion in my presence, but without my participation. It’s as if they’d zoomed ahead on an intellectual highway to a statistically rare scenario: if I were a BRCA carrier, I’d be facing mastectomy. In that moment, I did not have cancer, just elevated risk. Although I periodically enjoy geeking out with data, I wasn’t prepared to engage in a conversation that ended with me losing my breasts.
I recovered from the emotional whiplash and told them to not get ahead of the situation. I agreed to meet a genetics counselor, to discuss what testing entails, but that I might not go through with it, even though the genes could have been passed down by my father.
Several days later, with gray clouds hovering overhead, I drove to meet the counselor, whose office is on the 9th floor of a Boston hospital. A sign on the glass door warned people with colds not to enter because many patients had compromised immune systems. I felt as if I were stepping into Cancer Land, a place I didn’t want to visit even briefly. I had a fleeting urge to turn tail. Instead, I steadied myself by staring at the bleak horizon until the counselor invited me to her office. She showed me a print out of my family tree, which I had completed online. To see it in black and white stirred a sadness as deep and abiding as the sea: the women in my father’s family, his two sisters and mother, perished in the Holocaust, leaving me to inherit their names, along with many unanswered questions about their short lives.
The counselor, whose patience and lack of agenda felt like an oasis, gently shared that because my mother is not a BRCA carrier, and because I did not have a cancer diagnosis, my insurance would not cover the test. While the sum ($250) was within reach, I didn’t leap at it. With a 2.5% chance of testing positive, the odds were in my favor, right? In the midst of mid-winter blues, I decided not to risk turning my depressed mood into despair by testing and waiting for results. Instead, I seized the moment and took off for a live-work retreat in Morocco. If it turned out I had cancer, genetic testing could help determine treatment.
I scheduled the excision for 10 days after my return. I arrived at the hospital at 7am on a Friday, two hours before surgery so the radiologist, aided by fresh mammograms, could insert a thin wire into my breast as a guide. Before numbing the area she shared, in an upbeat voice, that the needle biopsy had retrieved a clean, precise sample. Indeed, those rogue cells no longer appeared on the screen. She thought this good news would reassure me.
“So why are we going through this?” I asked, still in denial.
“Because we always follow up with an excision,” she said. “Just to be sure.”
I glanced at the wire sticking out of me like a strange antenna, unsure whether to marvel at the technology or mourn the impending loss of my surgical virginity. Dr. “Van Jones” later appeared in blue scrubs. We shook hands and he gave me a chance to ask questions. I faded just after the IV drip began. When I awoke to see him again, he smiled and told me the procedure had gone well. Still, I iced the wound for five days and felt disoriented by the anesthesia for almost as long. Two weeks later, I went for a post-operative check up. By then I’d received the results.
“No cancer!” a member of his staff told me over the phone. I read the pathology report online. One of the items, lobular carcinoma in situ (LCIS), had that alarming “c” word in it, so I looked it up. LCIS is an indicator for higher cancer risk, but is not cancer. In focusing on “not cancer”, I posted on Facebook that I’d received the “all clear.”
Except as the surgeon explained the findings, I discovered that all was not clear, rather murkier than before. LCIS, a rare lesion that is often only detected via biopsy, made it 6-8 times more likely I’d develop breast cancer than women my age. He asked me if I had the results of genetic testing.
“I didn’t do it,” I said.
“Are you going to?” he asked.
“There’s a 1 in 40 chance of I’ll have BRCA,” I said, in a moment of uncharacteristic optimism.
“But if you have it, then your risk of breast cancer is at least 50%!”
He looked at me as if I were delusional. In this world, there are people who want to do every test and know everything, and others who would rather not know everything, or at least not before it’s absolutely necessary to know it. We might as well be different species. And, sometimes I am both people at once, which can make my life confusing as hell.
“Let’s assume I am not a BRCA carrier,” I said. “How would you treat LCIS?”
He recommended surveillance, including a mammogram and MRI (magnetic resonance imaging), six months apart. On the heels of a biopsy, a surgery, and a mammogram marathon, the thought of repeating these painful rituals left me distraught. Suddenly, I understood my mother’s unorthodox choice to bid adieu to her bosom. He mentioned taking tamoxifen daily for five years to lower my risk by approximately half. He suggested I meet with an oncologist to discuss it. As an aside, he said if I chose a mastectomy, he wouldn’t be the person to do it. At least he knew his limits, but hearing the “m” word again caused my innards to shrivel.
His office set up an appointment with an oncologist two weeks later. Because 14 days loomed like an eternity, I asked if I could meet with a different specialist sooner. My new assigned oncologist, a forty-ish woman with long hair and tall boots, arrived late, about 15 minutes after I had jumped through the hoops of having a medical bracelet snapped onto my wrist, repeating my date of birth until it sounded meaningless and being weighed, measured and having my blood pressure taken. All that, plus the palpation of my breasts (again!?) made me feel like a patient, even though I do not have cancer.
As she reviewed my computerized record, she conducted herself with the matter-of-factness of someone determined to be productive, no matter what. As a highly sensitive person, prone to absorbing others’ energy and agenda, I planted my feet on the floor to anchor myself. Like the surgeon, this doctor had achieved fluency in scary statistics. She explained that the LCIS diagnosis increases my breast cancer risk by 1% each year, an even more alarming figure than what I’d heard before. I tried to slow her down by asking questions: How frequently do treatment protocols change? Were there better options coming down the pipeline? What would happen if I chose not to take medication, which carries risks, or to wait several months before starting it?
“I’m not playing question roulette,” she said, in hot pursuit of linearity. I wanted to explore possibilities, understand the big picture and, most importantly, be heard. Perhaps I should have stood up and left.
In the middle of the meeting, an older woman in a white lab coat and supported by a cane limped into the room. The oncologist introduced her as a nurse navigator, who guides patients through the medical maze. She brought a calming presence. I don’t remember what conversation followed her arrival, except it ended abruptly.
“I need to wrap this up,” the oncologist said as she typed on the keyboard, as if I were responsible for her lagging schedule. “Do you want to start medication?”
Having the wise nurse in the room emboldened me to hold my ground.
“Is it urgent that I begin soon?” I asked. “Am I going to shorten my life if I wait a month?”
“No,” she said.
“I’m not going to decide today,” I said. “If I do genetic testing, the results might change things.”
She seemed frustrated by my response, which meant that a field in my computerized record would remain blank, perhaps even blink, with uncertainty. Except the uncertainty was mine, not hers. If I were prepared to linger in that space, that was my right. I told her I’d return in six weeks, although maybe I will insist on seeing a different oncologist. She stood and swept out of the room. The nurse navigator remained.
“You probably feel like you’ve been hit by a truck,” she said.
“Thank you for saying that,” I said. At least she was attuned to me, not focused on statistics and probabilities. “You are the sanest person I have met so far.”
The nurse told me that not everyone heeds the treatment protocol. Some women never return. Some follow up for a while and then quit. She told me I could cancel my next appointment or, come back, give the medication a try and, if it worsened the quality of my life, stop. She understood that not everyone values risk minimization or even longevity above all, and that what makes life meaningful is subjective. While I don’t harbor a death wish, I can’t imagine putting myself through the medical and emotional wringer every six months to be palpated, squished and imaged for years and years, waiting each time to see if the statistical seeds remained dormant or had sprouted into cancer cells.
What slammed me hardest was not the treatment, per se, but the implication I would need to stay in one place to receive consistent care. The thought of being shackled to a medical institution and a team of doctors punctured my spirit, withering my dreams of lengthy overseas sojourns. My brain nearly imploded when considering this conundrum: how could I remain cancer-free, or catch it early, while minimizing interactions with the medical complex?
In that light, a bilateral mastectomy suddenly seemed more practical than perverse. It might be traumatizing and painful but leave me with greater peace of mind and freedom. With that warped thought in my head, I made an appointment for genetic testing. Just before my meeting, while driving to the hospital, I developed a serious case of nerves. As I hoped I’d make it to their restroom in time, I remembered having similar intestinal freak outs before high school debate tournaments. I hadn’t loved it, but I had followed my older brother’s footsteps and joined the team. I wondered if my body had been trying to tell me then, and also now, that I was following another person’s script.
Yet, having already opened one breast and a Pandora’s box of risk, genetic testing offered the possibility of creating clarity, however searing it might be. The calm counselor again explained the scope and implications of the testing. I thought I’d only be tested for BRCA genes but, in fact, the laboratory could include other mutations to “maximize diagnostic yield”, according to the handout she gave me.
“Do you want the ‘multi cancer panel’?” she asked, as if taking my order at a restaurant. That would cover a smorgasbord of 83 genes.
“I will just stick to the breast and gynecological genes,” I said. Those number 23, still plenty to digest.
“If you change your mind, you have 90 days to ask the lab to test for the others,” she said.
In the meantime, just as doctors dug into my breast, I am digging into their data. I am holding out the possibility of finding a study that casts doubt on their treatment protocol. Perhaps less is more, or simply enough. If I can limit machine screenings to once a year, it might feel like a tiny victory, room to breathe.
January 14, 2019
December 19, 2018
November 14, 2018