As a practicing Physician Assistant of 12 years, I am trained in the conventional medical model; disease states require treatment and preventative screenings prevent disease. Only after I was diagnosed with ovarian cancer in 2023 and I suddenly became a patient did I really understand the gaps in our current model of medical care.
After a diagnosis of cancer, your days are filled with medical appointments: oncologists, chemotherapy and surgeons. In my case of BRCA2 gene mutation, I now have a pancreatic specialist, a breast specialist and dermatologist to manage screenings to keep my risk of other types of cancer low. Truthfully, I have learned more in the last 16 months as a patient than in the 10 years I’ve been a provider.
Here are the four lessons I have learned the hard way:
1. Interactions matter
My most vulnerable moments were shaped not by the provider who was caring for me but by the front office staff and the nurses on their team. On two separate occasions, it was the nurse who created an environment where I simply never returned to that office. It didn’t matter to me how wonderful the doctor was, either. The negative energy was established and cemented before they ever walked through the exam room door to meet me. On the other hand, it was the wonderful nurses, CNAs and dietary staff in the hospital that truly cared for me and lifted my spirits during my multiple hospitalizations for complications. Every single person who participates in patient contact has the power to shape that experience — positively or negatively.
2. Advocate, advocate, advocate
While practicing in dermatology, I would see 40 patients a day. What I used to look at as another 15-minute appointment slot was actually an appointment that as a patient I would count down to, prepare endless questions for and have anxiety over what the treatment plan/course of action would be. The mental load on the patient is so much greater than providers can anticipate and it’s important to be mindful of that entering into these interactions. As a patient, I would recommend that you own your time. Prepare questions and while every topic may not be able to be thoroughly answered in that one visit, have a game plan of what the next steps of evaluation/treatment would look like. Leave the appointment when you feel comfortable and satisfied with your care.
3. Consider alternative therapies
I finished chemotherapy in September 2023, bald, broken and bloated. I was thrown into surgical menopause, endured four surgical procedures and six rounds of chemotherapy. I was a shell of the person that I was prior to diagnosis. After ringing the bell, I was simply released to celebrate, heal and move forward with my life. Instead, I was faced with the stark reality of what I lost. I had no idea how to address the 30-pound weight gain, the painful joints, the debilitating fatigue and the depression of this new season. I realized there is an immense gap in our current medical model between eradicating disease and promoting wellness. It was frustrating to me that I had all these questions as a patient, even though this was the world that I worked in, what were all the other people doing that didn’t have the same privilege of a medical background? I am so thankful for my doctors, but had to expand my treatment team to include integrative medical providers, hormone specialists and nutritionists to help heal the side effects of a year of intensive cancer treatment.
4. Keep your preventative appointments
Life is busy. How easy is it to reschedule your yearly physical or push out that mammogram because the thought of the appointment is just a bit too much, or it is the one thing left on the to-do list that never gets accomplished, always carried over to the next day? Preventative screenings save lives. Yearly physical exams and labs can detect abnormalities early, mammograms and pap smears, colonoscopies and dermatology screenings are all such important appointments that can help avert a cancer diagnosis or allow for intervention at an early stage. Think about it depicted in the movies when the hero saves the world from collapse in the future and then travels back in time. No one knows what could have been, only that life continues as normal and that is such a beautiful thing. The best outcome of keeping your regular screening appointments and being an engaged patient is that nothing ever happens. I have learned that a boring patient is the best kind.