In medical school, students are taught, “When you hear hoofbeats, think of horses, not zebras.”
This is meant to remind physicians to think of common ailments first rather than rare diseases when diagnosing patients. So when I started experiencing pain in the upper right quadrant of my abdomen this past spring, I told myself to be rational. The feeling reminded me of the aches and soreness I had felt after a car accident when I was younger. After some Googling, I decided the cause was most likely gallstones, nothing dire.
I am a biology professor with a doctorate in molecular, cellular, and developmental biology who studied the regulation of the tumor suppressor gene BRCA1 (BReast CAncer gene 1) and genes promoting breast cancer metastasis in graduate school. I have taught at primarily undergraduate institutions for nearly 20 years and my current research with students involves the use of dietary phytochemicals (chemicals found naturally in fruits and vegetables) as chemotherapeutic agents to inhibit breast cancer cell proliferation.
This is part of why I decided to wait a few days before calling to make an appointment with a physician ― it was the end of the semester and I wanted to get my final grades submitted.
But then I happened to speak with a colleague, who happened to tell me that a family member was nearing the end of their journey with cancer. I got goosebumps and immediately called to schedule the soonest available appointment with a primary care physician.
The doctor also suspected gallstones initially. By this point, I was experiencing severe pain. It hurt to take a deep breath. The appointment was on a Friday, so the tests to assess for gallstones would not be scheduled until the following week. I asked if there was an alternative test that could be run that day. I was worried, given the level of pain, that I would not be able to make it until the following week.
They told me that if the pain got worse, I should go to the emergency department, where they could complete the necessary tests immediately. I insisted there had to be something that could be done to assess my health situation that day, without resorting to an emergency department visit with its exorbitant prices. If I didn’t advocate for myself, who would?
After an intense discussion between the physician, nurse and office manager, I had a CT scan that afternoon. By the evening, I received a phone call with the results. The doctor told me the scan showed multiple lesions in my liver indicating metastasis. There was also a mass visible in my small intestine. I had stage IV cancer.
I couldn’t believe the diagnosis. My first thoughts were of my three children and that I would not live to see them graduate from high school and college. I would not live to retirement and be able to enjoy that time with my husband. I would not live to be a grandma.
I regained my focus and asked the doctor about next steps. I was scheduled for a liver biopsy to determine the type of cancer I actually had, and then once that was determined I would be referred to an oncologist.
While my original scan indicated a tumor in the small intestine, there happen to be five types of cancer that occur in the small intestine, each with a different biology, varying in prognosis, treatment options and overall survival. When the nurse called with the pathology results, she stumbled over her words while telling me that I have a “well-differentiated, grade 1, neuroendocrine tumor.”
Her casual tone made it seem as if my test results had come back normal. I was absolutely shocked that this is how news is delivered to cancer patients, with no additional context whatsoever.
Luckily, as stated above, I happen to be a biology professor who teaches cancer biology and does breast cancer research. I understood what a well-differentiated, grade 1, tumor was. In fact, I had already read the pathology report online the day before the nurse called, and began researching my diagnosis so that I could make informed decisions.
Neuroendocrine tumors (NET) are a rare type of cancer that occurs in neuroendocrine cells which can be found throughout the body, most commonly occurring in the gastrointestinal tract, pancreas and lungs.
Turns out those hoofbeats were from a zebra after all; the cancer awareness ribbon for neuroendocrine cancers is black-and-white zebra stripes.
Prior to the appointment with my oncologist, I did literature searches and read voraciously. I learned that although my type of tumors grow slowly — given my stage — my cancer is incurable. I was dismayed to learn that there are a limited number of treatment options to help delay progression. The strategy would be to select the treatments in the optimal order to extend my life for as long as possible.
I came to my oncologist appointment armed with a list of questions. I was eager to learn more about my specific case and prognosis, particularly, since it had been over a month since my initial diagnosis. To say I left my visit highly disappointed is an understatement.
My anger grew as I reflected on the appointment. Although he had ordered additional tests, including a specialized PET (positron emission tomography) scan that detects neuroendocrine tumors to provide a more accurate assessment of my tumor burden and prognosis, when he discussed treatment options, it was all generalities, not specific to my case.
He evaded my questions or gave nonspecific answers. I also could not believe that as a newly diagnosed cancer patient, I was not given any resources to consult for further information on neuroendocrine tumors.
What if I wasn’t a cancer biologist? If I had only the minimal information given to me during the appointment, I would be grossly uninformed and ill-prepared to make future decisions.
I tried to let the anger go and give him the benefit of the doubt. Surely, once he had the PET scan results and discussed it with other physicians at the tumor board, an action plan would materialize. The oncologist indicated the PET scan would happen in a couple of weeks. A “couple” turned into seven weeks.
I tried to expedite the process and arrange for my own scan at another facility, however, the oncology nurse told me that the material for the scan had already been ordered and it would be a waste of money to cancel the scan with them. “Leave things as they are,” I was told.
I was beginning to view my healthcare team as adversaries instead of allies. It wasn’t until later that I learned that the delay was due to a supply chain issue obtaining the tracer and contrast needed for my scans. At the time, no one communicated this to me.
In the meantime — on my own — I sought out the professional associations related to neuroendocrine cancer, read consensus guidelines written by physicians who are experts in NET cancer, listened to podcasts and attended virtual conferences to learn all that I could about NETs.
Finally, two months later, I met with the oncologist again to discuss the results of my PET scan. I expected to go over my scans, discuss my test results and treatment options, and devise a plan of action. He said that they had discussed my case at the tumor board and they recommended we “watch and wait.”
I expected him to elaborate, but he didn’t. I asked him to explain his rationale. How did he come to that decision? He indicated that since I was relatively symptom free, there was no need to do anything at this time.
I was incredulous. I asked him why they were not recommending surgery to remove the primary tumor, since studies indicate that doing so gives patients better outcomes and longer overall survival. Not to mention that the primary tumor could continue to seed more tumors in my liver and possibly elsewhere. He said that the data was “inconclusive,” without offering further explanation.
I asked about liver-directed therapies to address the tumors in my liver, since liver failure is a real possibility that would hasten my death. The response was the same. “Watch and wait.” He added, “Most patients are happy to hear that they aren’t having surgery.”
I told him I wanted to meet with a surgical oncologist. He offered to make a referral and shortly thereafter left the room without saying a word. I decided that if I stayed with this oncologist, “watch and wait” meant I would watch my tumors grow and wait to die.
I ended up seeking a second opinion with experts in neuroendocrine tumors at an out-of-state hospital. Initially, I was reluctant to do so, because I was already so fatigued and did not want to fight the insurance company over my claims. Fortunately, it turned out that the hospital was in-network.
I sent all of my scans and test results to them electronically and had a virtual appointment with an oncologist and surgeon. They both answered all of my questions in detail and supported their rationale and explanations with data. This was exactly the way I had expected things to be from the beginning.
Furthermore, they both agreed that I was a good candidate for surgery. Not only would they be able to remove the tumors in my small intestine and lymph nodes, but those in my liver as well.
They made it clear that the surgery isn’t a cure, as there are still undetectable cancer cells lurking in my liver and most likely elsewhere that with time will grow into more tumors. But, since these are slow-growing tumors — if I’m lucky — I might live another 10 years.
My new surgeon reached out to another oncologist locally, on my behalf, so that I would not have to travel out of state for additional tests and scans prior to my surgery. Except someone at the local hospital tried to reroute things to the original oncologist who left me “watching and waiting.”
Ultimately, with assistance from my cancer support group leader, I made direct contact with this new local oncologist. When his nurse called to discuss upcoming appointments, she told me (unprompted) that she appreciated how I advocated for myself.
According to the American Cancer Society, the overall average lifetime risk for developing cancer is 1 in 2 for males and 1 in 3 for females. Since I am aware of this, I never thought, “Why me?” The reality is: “Why not me?”
Although my background in academia and cancer research gave me the ability to educate myself on neuroendocrine tumors and make informed decisions, it is difficult to accept that all of my training and knowledge will not allow me to ultimately control my cancer or how long I will live.
However, I can control things like who I choose to be my oncologist and surgeon. Studying cancer didn’t prepare me for the experience of having to advocate for myself as a cancer patient and to find my healthcare allies.
I have decided to move forward with the surgery at the end of the semester. Although it isn’t a cure, it will reset the clock, and buy me more time with my family. My hope now is that instead of being a zebra, I am really a unicorn.
Kimberly M. Baker, Ph.D., is an associate professor of biology at the University of Indianapolis and a molecular geneticist by training. She has published research articles on the transcriptional regulation of oncogenes and tumor suppressor genes involved in the development and progression of breast cancer. She is a Public Voices Fellow with The OpEd Project.
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