FOLLOWING A LIFE-THREATENING DIAGNOSIS, the whirlwind of chaos starts quickly. In my case, I was lucky, because I was part of the 15% of pancreatic cancer patients who qualify for surgery. The challenges before me were significant, but being eligible for surgery improved my odds from grim to bleak.
Myriad choices suddenly faced me: How should I select my surgeon? What other specialist doctors would I need to fill out my team? Should I join a clinical trial? As a former pharmaceutical executive in research and development, I am quite familiar with clinical trials and appreciate the potential opportunities provided if you can find one that meets your unique needs as a patient.
I received my pancreatic cancer diagnosis in 2014 at age 54. I underwent nine months of treatment, including one cycle of chemotherapy supplemented with vitamin D infusions as part of a clinical trial, Whipple surgery followed by eight weeks of recovery, three more rounds of chemotherapy with vitamin D, and two months of proton beam radiation. The journey since those treatments ended in 2015 has also been challenging, including multiple surgeries and hospitalizations to cope with complications.
The choices I made early on laid the groundwork for my care. Below are some tips for making the right decisions for you.
Evaluate experience. My immediate challenge was to find an experienced surgeon—not someone who had performed dozens of Whipple procedures, but rather hundreds of them. Fortunately, there were two experienced surgeons near my home in the suburbs of Philadelphia. I was impressed with both surgeons. They explained the journey ahead, including the surgery itself and associated recovery. There was no sugar-coating.
I also realized that ultimately my oncologist would be the captain of my medical team, so I needed someone knowledgeable and current on pancreatic cancer. I was lucky to live in close proximity to several world-class medical research and training institutions. In my case, my oncologist was my personal docent for my pancreatic cancer journey and clearly explained the nuances of my options so I could make a more informed decision.
Advocacy groups, in my case the Pancreatic Cancer Action Network (PanCAN), are often a good first port of call to learn about your disease, but also to identify hospitals and doctors with expertise in your disease.
Know yourself. I am an inquisitive patient. I do my research and ask a lot of questions of my doctor. I also had many colleagues in the pharmaceutical industry who were quite knowledgeable and happy to share their views. Therefore, I needed an oncologist who was not only knowledgeable about her field, but willing to be challenged by her patient while being empathetic and supportive to both the patient and caregiver.
Other patients might have different preferences. Some people want to be very proactive in their decisions; others are very intent on deferring to their doctors and doing as told. It is important to establish a medical team that you are comfortable with.
Find a good communicator. Communication is a two-way street. A good doctor knows her patient and can thoroughly explain the situation in an understandable way, without ignoring the complexities of the medical situation. Likewise, the doctor needs to be a good listener and really hear what the patient is saying. However, there is also a third direction of communication: The doctor must advocate for her patient. Many a time my doctor has intervened on my behalf with other medical specialists to get things done and put things in context, doctor to doctor.
Finally, it helps if your doctor communicates well with your loved ones. In my case, my wife was instrumental in finding my oncologist. I was already working with another oncologist on my clinical trial, but one day we tried to fill a prescription and there was no record of it at the pharmacy. My wife contacted the on-call oncologist, who sent over prescriptions to my pharmacy and provided a few suggestions to help me. But the deal was sealed the next morning when the same oncologist called to ask how I was doing. The path forward was clear.
Choose team players. I realized it was critical to identify a top-tier surgeon and oncologist as soon as possible, but these two doctors are only part of my medical team. I literally had enough specialists to field a soccer team: a dermatologist, colorectal surgeon, primary care physician, hematologist, psychiatrist and radiation oncologist, as well as multiple GI doctors, infectious disease doctors and interventional radiologists.
And of course, each of these medical specialists has a team of nurse practitioners, nurses and technicians who keep everything going. As we all first learned playing the game Red Rover in our youth, a team is only as strong as its weakest link. An excellent doctor is usually surrounded by an excellent medical team making sure things get done. This is hard to assess in advance, but talking with other patients can be helpful in identifying a group who will work together seamlessly.
Consider a trial. Since my cancer was detected early, I was eligible for surgery and doctors told me to just “cut the tumor out” as soon as possible. However, I enrolled in a trial that investigated high doses of vitamin D before and after surgery for three reasons. Given the long recovery time for the surgery, I wanted to start attacking any cancer immediately that might have spread beyond the tumor itself. I hoped that the treatment might stabilize the tumor, or even shrink it. And finally, I wanted to “pay it forward.” There is little data available on pancreatic cancer because tumor removal is a viable option for only a very small number of patients. I believe that the science in this area needs to progress and hope that future patients are able to benefit from any insight obtained. Advocacy groups can be a good source to find possible trials, and many maintain up-to-date lists of trials. Clinicaltrials.gov lists all clinical trials but can be a bit difficult to navigate.
Value compassion. I truly believe that my oncologist feels the pain and challenge I am experiencing and does what she can to alleviate the suffering. I am struck by the emotional drain that must accompany this, particularly for an oncologist who sees a lot of patients suffering from pancreatic cancer. I recently sent my doctor a happy birthday message “to my favorite oncologist.” She responded that she does not hear that very often and thanked me for being a resilient patient. At first, it struck me as an odd reply. She is a phenomenal doctor and beloved by her patients. But then it hit home. Few of her patients survive for an extended period of time. Many pancreatic patients die within a year of diagnosis, yet she is fully invested in our journeys.
The bottom line is to make sure you do your diligence in selecting a doctor. Find the right specialist. Find the right health care system. Determine the best path forward, be it standard-of-care treatment or a clinical trial. Consider location and logistics and then pursue what is best for you and your family to score a goal.
This article is adapted from posts on his blog, Through the Patient Lens.
Cancer Today magazine is free to cancer patients, survivors and caregivers who live in the U.S. Subscribe here to receive four issues per year.