“She called me this afternoon and told me I have lung cancer, and I have to schedule a biopsy.”
I only vaguely processed the other cars on the road and the clouds breezing past the gray sky, the rest of the world moving on as mine suddenly stood still.
“O.K.,” I said, buying time to find some of the words I had heard family members of my own patients use for reassurance. “There are still a lot of things a mass in the lungs could be, like an infection, or scar tissue. It’s not cancer yet, until a biopsy shows that it’s cancer.” So the saying in oncology goes: “Tumor is a rumor, tissue is the issue.” I continued. “You haven’t gotten a biopsy, right?”
“Well, no. But my doctor seemed pretty sure this was cancer.”
“It’s not cancer yet,” I said, more son than doctor, trying to convince myself as much as her.
Over the next few days, I played an unfamiliar role. Rather than doctor providing information, I became the family member trying to obtain it, and also attempting to help schedule a procedure in an unfamiliar hospital many states away.
My mother’s doctor faxed me the report from the CT scan, which described a lobulated mass over three centimeters long, typical of cancer. Scheduling the biopsy proved more challenging, though, and after several phone calls the best the interventional radiology department could provide was a tentative date, 10 days in the future.
We entered the purgatory of waiting for a diagnosis. As those days passed, my mother formulated a number of “If this is cancer” questions: “If this is cancer, what are the next tests I will need? Will I need surgery? Chemotherapy? Can I keep working? When will we know?”
Until the diagnosis was made, I could answer only in generalities, and speculate.
Three days after the biopsy of the mass in her lung, the one that looked ominous as a cumulonimbus cloud on her CT scan, my phone buzzed with her message: “The test was positive. Call me, I’m home.”
I never imagined that the diagnosis would arrive by text. Then again, perhaps texting allowed her, and me, some distance from the new truth that had just dawned. I ducked away from my own clinic full of cancer patients to reach her.
“I just talked to my doctor. The biopsy showed cancer.” It was the first time she had used the word, and I noted again how she distanced herself from it, as if the biopsy had the cancer, not her.
“Did your doctor mention what kind of cancer?” I asked. She read the unfamiliar words from the paper on which she had taken notes.
“Adenocarcinoma. Consistent with pulmonary origin.” There was silence on the phone line as we both processed the information. “What is the next step?” she asked.
The next step was to determine how far the cancer had spread — its stage. In this respect, lung cancer is quite different from the cancer I treat, leukemia. Leukemia doesn’t have a stage, as it appears throughout the blood and bone marrow at diagnosis. If we did try to tag a stage to leukemia, it would be stage 4 or stage 0: Either you’ve got it, or you don’t.
The staging for lung cancer is predicated on the tumor’s size, whether it has spread to lymph nodes, the location of those lymph nodes, or whether it has metastasized to another organ or to the bones. This is assessed by additional scans, and often more biopsies. I explained this to her and asked whether she wanted the tests performed closer to her home in Rhode Island, or where I live and practice, in Cleveland.
“What do you want?” she asked.
It was hard to answer. I just wanted her better.
She decided to have her staging and consultations at my hospital, and flew west the following week to begin her appointments, starting with an M.R.I. of the brain to check if the cancer had spread there, some lab tests and a PET/CT scan.
Positron emission tomography or PET scans involve injection into the veins of a radionuclide “tracer” attached to glucose. Cells in the body that are active (and thus consuming glucose), such as cancer cells, accumulate the tracer and “light up” on the scan. The test can thus show both the main tumor and areas where the tumor has spread. Other cells that are active, which can occur with infection or inflammation, can also light up, though, leading to false positive results, meaning the scan shows cancer erroneously.
The next day we met first with the surgeon, who showed her the M.R.I. scans on the computer screen in his clinic room. He told her that her brain was free of cancer, and that it was “young” appearing.
She was thrilled with both details and visibly relaxed. “That was my biggest fear, that it had spread to my brain.”
Next, he showed the PET scans. “Here’s the tumor we saw on the CT scan,” he said, pointing at a fiery, globular mass. “And here are a couple of lymph nodes in your mediastinum,” in the middle of the chest, pointing at two smaller flames where the cancer had spread.
Instead of stage 1 lung cancer, meaning cancer that was confined to the initial mass and could be removed surgically, she had stage 3 and would need to receive chemotherapy and radiation therapy. Then, only if the cancer regressed, would she be eligible for surgery.
It also meant the chance she would be cured had just plummeted manifold.
“I want to be sure that those lymph nodes really have cancer in them,” the surgeon said as much to her as to himself as he considered the PET scan. “I’ll arrange for you to have a biopsy by a pulmonologist.”
She met next with a medical oncologist, a lung cancer specialist and close friend who also coached my son’s baseball team. In the cruelest of ironies, he had recently lost his own mother to stage 4 lung cancer, and he regarded me and my mother with that special kind of empathy reserved for those who are equally embattled cancer soldiers and their caregivers. He walked us through his treatment plan and also paused as he reviewed the PET scan. “We’ll biopsy those lymph nodes before starting any of this,” he said, reinforcing what the surgeon had said.
Two days later, my mother underwent the additional biopsy, and an hour after that, the pulmonologist called me.
“The lymph nodes were totally clear,” he said over the phone. “No cancer. The PET scan was a false positive.”
I repeated the words back to him to make sure I had heard them correctly, and then choked up as a wave of relief washed over me. She was back to stage 1, and would just need surgery. I told her the good news in the recovery area, following the biopsy.
Walking from the procedure, my mother and I ran into the medical oncologist and told him the biopsy results. This man, whose own mother was denied any chance of cure for her lung cancer, was selflessly overjoyed at our good fortune. He hugged us in congratulations.
“I have to wonder,” my mother asked him, “would I have been treated with chemotherapy and radiation elsewhere, based only on the PET scan results?”
He nodded, grimacing. “Unfortunately, that happens a lot.”
My mother underwent surgery, and has now returned to work. She had a great outcome, but she also had a strong, connected advocate, in me, and the means to travel to a specialty cancer center. I was happy for her, but the experience was discomfiting. It left me wondering how commonly cancer patients are treated inappropriately because they don’t have that same access, based on tests that aren’t always accurate.