A Second Opinion
The important thing is not to stop questioning. – Albert Einstein
The cancer center in downtown Boston was tightly surrounded by other high-rise buildings, but as it was constructed mainly of glass, the lobby and waiting rooms were imbued with natural light. It was uplifting. The colored banners featuring patient testimonies spoke directly to me. I felt hope for the first time in a long time.
“Hi. I am checking in for a second opinion,” my husband said.
I waited with anticipation for the receptionist to look at my husband and register confusion as to who exactly was the breast cancer patient. Would she look up and shift her gaze from him to me? Would she assume that my husband was speaking on my behalf and address her next question to me? My entire experience would be easier if the receptionist knew that men can also be diagnosed with breast cancer and recognized that she was, in fact, speaking with the patient.
“Hello. We need to check your insurance information. Then, we will have you take a seat and complete the patient intake form. The medical assistant will call your name from the far door in the waiting room,” the receptionist said, all while looking my husband in the eye.
I signed with relief. I didn’t need to explain that HE was the patient. This was a good sign.
We sat down in the waiting room. While my husband was filing out the form, I took out a carefully folded piece of paper to review my list of questions.
There were only three questions on the page, but I had written them down to avoid forgetting them once the doctor entered the room. I looked down at the piece of paper to remind myself of the questions but couldn’t concentrate. My husband’s pen scribbled away next to me, and I closed my eyes for a moment.
It hadn’t been difficult to find the name of another breast cancer doctor at a top medical center, who could render a second opinion on my husband’s treatment. But for the longest time, I couldn’t bring myself to perform the simple internet search for a name or pull the trigger on making the appointment. Because it would feel like a betrayal of our current cancer team.
The husband of a friend offered to search for a “male breast cancer” specialist on my behalf. Within a day, he sent me the names of several physicians. One happened to be in Boston at a renowned cancer center. As this center was close to my sister-in-law’s home, the decision to make the trip became easier.
“Waldorf,” I heard someone call and opened my eyes.
We stood up and made our way to the clinic room. I felt my anxiety ticking up a few points on the way. Would he recommend a new treatment? Or offer my husband a spot in a clinical trial that might provide him some benefit? Would my husband need to move to Boston for a while to take advantage of care that couldn’t be provided in Seattle?
The medical assistant took my husband’s vitals, entered data into the computer and left the room. This was a patient room just like the ones in Seattle, but it felt different. I had big hopes pinned to this appointment and this doctor. I squeezed my husband’s hand in silence. Neither one of us had much to say out loud.
It wasn’t long before the doctor entered. Glasses, brown hair, serious expression. He introduced himself and asked us to do the same, then wasted no time in getting straight to the point. He began by asking if we had any questions, I gave him the piece of paper.
“The first question is,” he read, “What is my chance of survival? Good question. As you know, men with breast cancer tend to be diagnosed at a later stage when the disease is more advanced. You had an extensive burden of cancer in your lymph nodes…fourteen lymph nodes positive, I believe, and some positive next to the heart that they couldn’t remove. Based on this, your cancer is a Stage 3C. In a group of men with the same stage, we would estimate that 50- 60% would be alive at 5 years, but this is just an estimate.”
This assessment matched what I had learned through my research. Comparing breast cancer stages, men had a lower survival than women, but it wasn’t clear if this was a unique feature of male breast cancer or generally due to their lower life expectancy. Although the survival of women with breast cancer had improved dramatically over the years, this was not true for men. Why this wasn’t the case, was a mystery.
“New medications are coming out that may change this number,” he added. “You may have heard of Verzenio, which targets rapidly dividing cells and has been linked with better survival for advanced stage breast cancer. We only have two years of data, but this would be good to add to your regimen of Tamoxifen once you have completed radiation. More drugs may become available, as well.”
I silently agreed. We had been told about Verzenio and were eager to add this to his regimen. The idea that cancer drugs were coming out each year, and that one of these might extend his life was surprising to me. In the field of obstetrics, only three drugs had been approved in the last 70 years to prevent preterm birth, a leading cause of newborn mortality. There was currently only a single drug in clinical trials – yet, for cancer, there were thousands of drugs in development and real hope for new drugs in the pipeline. It was amazing.
Sensing that our question had been answered, he turned back to the piece of paper. “The next question is…our home cancer center has recommended that after radiation I shouldn’t have any further CT scans unless I develop a new symptom, what are your thoughts?”
He hesitated for a moment to collect his thoughts before answering. I could see that he was preparing to disagree with our home breast cancer specialist and wanted to choose his words carefully.
When one doctor disagrees with another’s treatment plan, it can be due to several factors. First, disagreement may happen when there is no standard in the field and the medical evidence isn’t clear; the first doctor chooses the approach that seems best in their experience but may differ from the experience of the second doctor. Another possibility is that despite a standard in the field, one doctor feels that there are extenuating circumstances in a specific case that warrant a different treatment than what is usually recommended. A final possibility is that one doctor made a treatment decision based on a lack of knowledge that is simply mistaken. Regardless of which reason underlies the disagreement in treatment plan, there is a strong hesitancy on the part of physicians to label the medical judgment of another physician as wrong.
“The standard of care for the follow up of patients after radiation can differ, but we would image you in one form or another on an annual basis. You are welcome to come here for this testing,” he said.
“Thank you. We will come here for imaging,” I said with genuine relief. This disagreement seemed like a difference in their standards of care. I was happy for my husband to have more imaging. If we could catch a recurrence on the early side, there might be a better chance to keep it controlled with another round of chemotherapy before it had spread too far.
“And the final question,” he read, “How long should I take the anticoagulation pills? The blood clot was very large, and I am worried that it might come back if the blood thinners are stopped too soon. It has been recommended that I stop the anticoagulation after 6 weeks,” he finished. Again, I saw the small hesitation building as he stopped to think. Another disagreement was brewing.
“I would push back on this recommendation. I saw the radiology report and your blood clot was extensive. Even though you had the port removed, you still have at least two ongoing risk factors for blood clotting – the cancer and the chemotherapy. If you were my patient, I would be hesitant to stop the anticoagulation at this point.”
This time, the disagreement felt more heartfelt, and it seemed like he felt it was medically unwise to stop the anticoagulation. I agreed and felt immediate relief. The idea of another blood clot that might be fatal was hard to stomach. This was the reassurance that I needed to go back and press this point with our oncologist.
“I have one more question,” I said. “Why did he get breast cancer? He has no genetic mutations that they can find predisposing him to breast cancer? He has a very healthy diet and exercises daily. The only reason we can think of is that he lived in Eastern Europe for a while and may have been more exposed to toxic chemicals in the water.”
“Have you heard of Camp Lejeune in North Carolina?” he asked.
We looked at each other and shook our heads.
“It was a U.S military base, which has been linked with a large number of male breast cancers in the soldiers and children that lived on the base. It was discovered that the wells supplying the drinking water at Camp Lejeune were contaminated. Toxic chemicals may be a factor in cases of male breast cancer not explained by genetics.”
The disease detective in me perked up, as I made a note to read more about Camp Lejeune. What we could learn about risk factors for breast cancer in men might also be used to improve the care of women. Even a possible reason for why this happened was interesting to me.
The scientist side of my brain started racing. If toxic chemicals increased the risk of breast cancer in men, then it must also be the case that this is true for women – if indeed, their disease process is similar. Might some cases of breast cancer in women also be due to toxic chemical exposure?
I thought that I could learn something by studying what is known about the male breast cancers diagnosed in the men who had lived at Camp Lejeune. As I learned, there were many other groups of men with exposures to toxic chemicals, who were known to have higher rates of cancer that also had unexpectedly high rates of male breast cancer. Camp Lejeune was not an isolated case.