I Studied Cancer For 20 Years. None Of It Prepared Me To Receive My Own Stage IV Diagnosis.

In medical school, students are taught, “When you hear hoofbeats, think horses, not zebras.”

This is intended to remind clinicians to think of common ailments first rather than rare diseases when diagnosing patients. So when I started having pain in my right upper quadrant last spring, I told myself to be rational. The sensation reminded me of the aches and pains I had felt after a car accident when I was younger. After googling, I decided gallstones were probably the cause, nothing serious.

I am a biology professor with a Ph.D. in molecular, cell, and developmental biology who studied the regulation of the tumor suppressor gene BRCA1 (breast cancer gene 1) and genes that promote breast cancer metastasis in graduate school. . I have taught primarily at undergraduate institutions for almost 20 years and my current research with students involves the use of dietary phytochemicals (chemicals naturally found in fruits and vegetables) as chemotherapeutic agents to inhibit the proliferation of breast cancer cells.

This is part of the reason I decided to wait a few days before calling to make an appointment with a doctor: it was the end of the semester and I wanted to send in my final grades.

But then I spoke to a colleague, who told me that a family member was nearing the end of his or her journey with cancer. He gave me goosebumps and I immediately called to make the earliest available appointment with a primary care doctor.

The doctor also initially suspected gallstones. At this point, she was experiencing intense pain. It hurt to take a deep breath. The appointment was on a Friday, so tests for gallstones would not be scheduled until the following week. I asked if there was an alternative test that could be done that day. I was worried, given the level of pain, that I wouldn’t be able to do it until the following week.

I was told that if the pain got worse, I should go to the ER, where they could do the necessary tests right away. I insisted that there had to be something that could be done to assess my health that day, without resorting to an exorbitantly priced emergency department 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. In the 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. 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 would not be able to enjoy that time with my husband. I wouldn’t live to be a grandmother.

I regained my focus and asked the doctor about the next steps. I was scheduled for a liver biopsy to determine what type of cancer I really had and then once it was determined I would be referred to an oncologist.

Although my original scan indicated a tumor in the small intestine, it turns out there is five types of cancer that occur in the small intestine, each with a different biology, which varies in prognosis, treatment options, and overall survival. When the nurse called with the pathology results, she stumbled over her words as she told me that she had a “grade 1 well-differentiated neuroendocrine tumor.”

His casual tone made it sound like my test results had been normal. I was absolutely shocked that this is how the news is delivered to cancer patients, without any additional context.

Fortunately, as stated above, I am a biology professor who teaches cancer biology and conducts research on breast cancer. 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 started researching my diagnosis so I could make informed decisions.

The author with her husband and children.

Photo courtesy of Kimberly M. Baker

Neuroendocrine tumors (NETs) are a rare type of cancer that occurs in neuroendocrine cells that can be found throughout the body, most often in the gastrointestinal tract, pancreas, and lungs.

Turns out those hooves were from a zebra after all; cancer awareness ribbon for neuroendocrine cancers is black and white zebra stripes.

Before 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 slow the progression. The strategy would be to select the treatments in the optimal order to extend my life as long as possible.

I came to my appointment with the oncologist armed with a list of questions. I was eager to learn more about my specific case and prognosis, particularly as it had been over a month since my initial diagnosis. To say that I left my visit very disappointed is an understatement.

My anger grew as I pondered the date. Although he had ordered additional tests, including a specialized positron emission tomography (PET) scan that detects neuroendocrine tumors to provide a more accurate assessment of my tumor burden and prognosis, when he discussed treatment options, it was generalities, Not specific to my case. .

Evaded my questions or gave unspecific answers. I also couldn’t believe that as a newly diagnosed cancer patient, I wasn’t given any resources to go to for more information about neuroendocrine tumors.

What if you weren’t a cancer biologist? If I only had the minimal information that was given to me during the appointment, I would be very uninformed and ill-prepared to make future decisions.

I tried to let go of the anger and give him the benefit of the doubt. Surely once he had the PET scan results and discussed them with other doctors in the tumor board, an action plan would materialize. The oncologist indicated that the PET scan would be done in a couple of weeks. A “couple” became in seven weeks.

I tried to speed up the process and arrange for my own exam at another center, however the oncology nurse told me that the exam supplies had already been ordered and it would be a waste of money to cancel the exam with them. “Leave things as they are,” they told me.

I was beginning to see my health care team as adversaries rather than allies. It wasn’t until later that I found out that the delay was due to a supply chain issue in getting the necessary tracer and contrast for my scans. At that time, no one communicated this to me.

In the meantime, on my own, I researched neuroendocrine cancer-related professional associations, read consensus guidelines written by NET cancer clinicians, listened to podcasts, and attended virtual conferences to learn as much as I could about NETs.

Finally, two months later, I met with the oncologist again to discuss the results of my PET scan. I was hoping to review my scans, discuss my test results and treatment options, and devise a plan of action. He said they had discussed my case at the tumor board and recommended that we “watch and wait.”

I expected him to explain, but he didn’t. I asked him to explain the reason for it. How did he come to that decision? She stated that since she was relatively symptom free, there was no need to do anything at this time.

I was in disbelief. I asked him why they didn’t recommend surgery to remove the primary tumor, since studies show that doing so gives patients better outcomes and longer overall survival. Not to mention that the primary tumor could go on to grow more tumors in my liver and possibly elsewhere. He called the data “inconclusive,” without offering further explanation.

I asked about liver-targeted therapies to treat the tumors in my liver, as 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 know they won’t be having surgery.”

I told him I wanted to meet with a surgical oncologist. He offered to make a reference and shortly after he left the room without saying a word. I decided that if I stayed with this oncologist, “watch and wait” meant that clock my tumors grow and Wait To die.

I ended up seeking a second opinion from neuroendocrine tumor experts at an out-of-state hospital. Initially, I was reluctant to do it because I was already very fatigued 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 an oncologist and surgeon. They both answered all my questions in detail and supported their rationale and explanations with data. This was exactly how he had expected things to be from the beginning.

Also, they both agreed that I was a good candidate for surgery. Not only could they remove the tumors from my small intestine and lymph nodes, but also those from my liver.

They made it clear that surgery is not a cure, as there are still undetectable cancer cells lurking in my liver and most likely elsewhere that will develop into more tumors over time. 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 scans prior to surgery. Except someone at the local hospital tried to reroute things to the original oncologist which left me “watching and waiting”.

Finally, with the help of my cancer support group leader, I got in direct contact with this new local oncologist. When his nurse called to discuss upcoming appointments, she told me (spontaneously) that she appreciated how he stood up for me.

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. Because I am aware of this, I never thought, “Why me?” The reality is: “Why not me?”

Although my academic and cancer research experience gave 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 control my cancer or how long I will live. .

However, I can control things like who I choose to be my oncologist and surgeon. yesStudying cancer did not prepare me for the experience of having to stand up for myself as a cancer patient and find my allies in health care.

I have decided to go ahead with the surgery at the end of the semester. Although not a cure, it will reset the clock and allow me to spend more time with my family. My hope now is that instead of being a zebra, it’s actually 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 at The OpEd Project.

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