I have studied cancer for 20 years. None of this prepared me for receiving my own IV diagnosis.
In medical school, students are taught, “When you hear hooves, think of horses, not zebras.”
This should remind doctors to think of common diseases first and not rare diseases when diagnosing patients. So when I started feeling pain in the upper right quadrant of my abdomen last spring, I told myself to be rational. The feeling reminded me of the pain I felt after a car accident when I was younger. After a bit of googling, I concluded that the cause was most likely a gallstone, no big deal.
I am a professor of biology with a doctorate in molecular, cellular and developmental biology who studied the regulation of the tumor suppressor gene BRCA1 (BReast CAncer 1 gene) and genes that promote breast cancer metastases 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 the proliferation of breast cancer cells.
That’s part of the reason I decided to wait a few days before calling to make a doctor’s appointment – it was the end of the semester and I wanted to turn in my final grades.
But then I happened to be talking to a colleague, who happened to tell me that a family member was nearing the end of his journey with cancer. I shuddered and immediately called to schedule an appointment with a primary care physician as soon as possible.
The doctor also initially suspected gallstones. Until that moment, I felt a lot of pain. It hurt to take a deep breath. The appointment was on Friday, so tests to evaluate gallstones will not be scheduled until next week. I asked if there was any alternative test that could be done that day. I was worried, given the level of pain, that I wouldn’t be able to make it through next week.
They told me that if the pain worsened, I should go to the emergency room, where they would immediately perform the necessary tests. I insisted that there had to be something that could be done to assess my medical situation that day, without resorting to an overpriced emergency room visit. If I don’t stand up for myself, who would?
After an intense discussion between the doctor, the nurse and the office manager, I had a CT scan that afternoon. By evening I received a phone call with the results. The doctor told me that the scan showed multiple lesions in my liver, indicating metastases. There was also a visible mass in my small intestine. I had stage IV cancer.
I couldn’t believe the diagnosis. First I thought of my three children and the fact that I would not live to see them graduate from high school and college. I wouldn’t live to retire and be able to enjoy that time with my husband. I wouldn’t live to be a grandmother.
I regained focus and asked the doctor about next steps. I was scheduled for a liver biopsy to determine the type of cancer I actually have, and then once that is determined I will be referred to an oncologist.
Although my original scan showed a tumor in the small intestine, it just so happens to be there five types of cancer that occur in the small intestine, each with different biology, differing in prognosis, treatment options and overall survival. When the nurse called with the pathology results, she stumbled over her words as she told me I had a “grade 1 well-differentiated neuroendocrine tumor.”
Her casual tone made it seem like my test results were back to normal. I was absolutely shocked that this is how news is delivered to cancer patients, without any additional context.
Fortunately, as stated above, I happen to be a biology professor who teaches cancer biology and is involved in breast cancer research. I understood what a well-differentiated grade 1 tumor is. In fact, I had already read the pathology report online the day before the nurse called me and started researching my diagnosis so I could make informed decisions.
Neuroendocrine tumors (NET) are a rare type of cancer that occurs in neuroendocrine cells that can be found throughout the body, and most often appear in the gastrointestinal tract, pancreas and lungs.
It turned out that those hoofbeats were from a zebra after all; the cancer awareness ribbon for neuroendocrine cancer is black and white zebra stripes.
Before seeing my oncologist, I searched the literature and read voraciously. I learned that although my type of tumor is slow growing – given my stage – my cancer is incurable. I was horrified to learn that there are a limited number of treatment options that can help delay progression. The strategy would be to choose the treatments in the optimal order to extend my life as long as possible.
I came to the oncologist’s appointment armed with a list of questions. I wanted to know more about my particular case and the prognosis, especially since it has been over a month since my initial diagnosis. It is an understatement to say that I left the visit very disappointed.
My anger grew as I thought about the name. Although he ordered additional tests, including a specialized PET (positron emission tomography) scan that detects neuroendocrine tumors to give a more accurate estimate of my tumor burden and prognosis, when he discussed treatment options, they were all generalities, not specific to my case.
He avoided my questions or gave vague answers. I also couldn’t believe that as a newly diagnosed cancer patient, I was not given any resources to consult for additional information about neuroendocrine tumors.
What if I’m not a cancer biologist? If I only had the minimal information given to me during the appointment, I would be extremely uninformed and ill-prepared to make future decisions.
I tried to let go of my anger and give him the benefit of the doubt. Certainly, after he got the results of the PET scan and discussed it with the other doctors at the hospital tumor panel, the action plan would come true. The oncologist said the PET scan would be done in a few weeks. The “couple” turned into seven weeks.
I tried to speed up the process and arrange my own imaging at another institution, however, the oncology nurse told me that the imaging material had already been ordered and that it would be a waste of money to cancel the imaging with them. “Leave things as they are,” I was told.
I began to see my healthcare team as adversaries instead of allies. It wasn’t until later that I found out that the delay was due to a supply chain problem getting the tracer and contrast needed for my scans. No one told me about it then.
In the meantime, I — on my own — looked up neuroendocrine cancer professional associations, read consensus guidelines written by doctors who are experts in NET cancer, listened to podcasts, and attended virtual conferences to learn all I could about NET.
Finally, two months later, I met with the oncologist again to discuss the results of my PET scan. I expected to review my scans, discuss test results and treatment options, and come up with a plan of action. He said they had discussed my case at the tumor board and recommended we “watch and wait”.
I expected him to elaborate, but he didn’t. I asked him to explain his reasoning. 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 in disbelief. I asked him why they don’t recommend surgery to remove the primary tumor, since studies show it gives patients better outcomes and longer overall survival. Not to mention that the primary tumor could continue to form new tumors in my liver and possibly elsewhere. He said the data was “inconclusive,” offering no further explanation.
I asked about liver-directed therapies to address the tumor in my liver, since liver failure is a real possibility that would hasten my death. The answer was the same. “Watch and wait.” He added: “Most patients are happy to hear they are not going to have surgery.”
I told him I wanted to meet with an oncologist. He offered a recommendation and shortly thereafter left the room without saying a word. I decided that if I stayed with this oncologist, “watch and wait” meant that I would To watch my tumors are growing and to wait die.
I ended up seeking a second opinion from a neuroendocrine tumor specialist at an out-of-state hospital. I was hesitant at first because I was already so tired and didn’t want to fight the insurance company over my claims. Fortunately, the hospital turned out to be in-network.
I sent them all my scans and test results electronically and had a virtual appointment with the oncologist and surgeon. Both of them answered all my questions in detail and backed up their reasoning and explanations with data. That’s exactly what I expected from the beginning.
Furthermore, they both agreed that I was a good candidate for surgery. Not only could they remove the tumors in my small intestine and lymph nodes, but also the ones in my liver.
They made it clear that surgery is not a cure, as there are still unmeasurable cancer cells lurking in my liver and most likely elsewhere, which will eventually grow into new tumors. But since these are slow-growing tumors, if I’m lucky, I could live another 10 years.
My new surgeon contacted another local oncologist on my behalf so that I would not have to travel out of state for additional tests and imaging prior to surgery. Except someone at the local hospital tried to redirect things to the original oncologist who left me to “watch and wait”.
Ultimately, with my help cancer support group host, I have made direct contact with this new local oncologist. When his nurse called to discuss upcoming appointments, she told me (without prompting) that she appreciated me advocating for myself.
According to the American Cancer Society, the overall average lifetime risk of developing cancer is 1 in 2 for men and 1 in 3 for women. Being aware of this, I never thought, “Why me?” The reality is, “Why not me?”
Although my experience in academia and cancer research has given me the ability to educate myself about neuroendocrine tumors and make informed decisions, it is difficult to accept that all 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. WITHstudying cancer did not prepare me for the experience of having to advocate for myself as a cancer patient and find my allies in healthcare.
I decided to go ahead with the surgery at the end of the semester. While it’s not a cure, it will reset the clock and buy me more time with my family. Now I’m hoping that instead of a zebra, I’m really a unicorn.
Kimberly M. Baker, PhD, 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 contributor to the Public Voices OpEd project.