What it’s like to be diagnosed with cancer during the COVID-19 pandemic

April 28, 2020 in Disease Management  •  By Miles Varn, MD
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Although the COVID-19 pandemic has created one of the largest, most difficult health challenges the U.S. has encountered in decades, people are still facing the serious health problems they always have, from heart attacks and strokes and serious injuries from accidents to all kinds of cancer. One of our members shared her experience of being diagnosed with advanced ovarian cancer during the pandemic and how she’s coping with both a life-changing diagnosis and the complications of receiving care during the outbreak.

 I’ve always been a fit, healthy person. I’m a marathon runner and cyclist and work out for an hour every day. But towards the end of January, I developed a constant dry cough and chest tightness. I didn’t feel sick, but the cough just wouldn’t go away. I made an appointment with my primary care physician who listened to my chest, requested some lab work, and prescribed the antibiotic doxycycline, suspecting bacterial pneumonia. I asked for a chest X-ray, but he didn’t feel it was needed.

Five days later, I was no better. I couldn’t stop coughing and was seen by another doctor in the practice, who examined me and prescribed an inhaler and steroids but again, no chest X-ray. After a week, my condition hadn’t improved, so I went to urgent care and this doctor was extremely thorough. In fact, she saved my life. She was concerned that the fluid wasn’t in my lungs, but around the lungs, suggesting the problem could be with my heart. She sent me to the local emergency room, where I finally got my chest X-ray, as well as an EKG, CT scan, and bloodwork. The scans showed a lot of fluid in my chest (over 2 liters), which they drained and sent to pathology.

I went home feeling better but two days later, I learned that the fluid contained malignant cells. The full CT scan that followed found a 10 cm mass in my ovaries. I was in shock—I had advanced ovarian cancer. There had been no indication of any problem at my regular GYN visits, so I went into the ER with a cough and came out with a cancer diagnosis and was referred to the hospital’s head of gynecological oncology.

This is when I contacted PinnacleCare. I had lived with serious illness before—my daughter had suffered a brain injury and for the next 19 years, my husband and I had felt absolutely alone in managing her complicated medical care. We had to figure out everything on our own and I was never sure if we were doing the right thing. This time, I wanted and needed someone else to take the lead with my illness, to provide me with the guidance and information I would need to make the best decisions—and that’s what PinnacleCare did.

They vetted the oncologist I was referred to and let me know she was a good choice. My advisor collected all my medical records and PinnacleCare’s chief medical officer had a phone consult with the doctor right after my first appointment. I took great comfort in knowing that I was getting access to the best treatment options, that the clinical trial I was lucky enough to get in was a smart choice, and that I was under the care of a top physician who was experienced treating women with advanced ovarian cancer.

I underwent laparoscopic exploratory surgery the following week and was hopeful when learning that the cancer appeared to have not spread to any nearby organs. And just like that, two days later, I had major surgery to remove my uterus, ovaries, and fallopian tubes. One ovary actually had a 15 cm tumor and the other had an 8 cm tumor – a full pound of cancer!

When I was discharged after surgery, the effects of COVID-19 in my area were starting to become more apparent. Each time I went to the hospital for testing or chemotherapy, the effects were more in evidence—checkpoints at every door, people asking about my health, my contacts, and my travel history. Unfortunately, because of the restrictions to limit the spread of the disease, no one could come with me to the seven-hour long chemo treatments and I could not take advantage of the complementary medicine services the hospital usually offers for cancer patients like acupuncture.

But something else that was interesting is that, unlike if I had been diagnosed with cancer and started treatment before the pandemic, it wasn’t just me working and staying home in quarantine, it was everyone! And that made the experience somehow easier for me—I felt less separated, less the odd person out. I was still part of the community because everyone was going through this extreme lifestyle change together, not just me.

PinnacleCare has made a tremendous difference for me in getting through my illness. I completely turned my care over to them, knowing they would cross all the Ts and dot all the Is and give me the information I needed to make decisions and not second guess myself. For the first time when dealing with a serious family health problem, I have no fear. I don’t have to figure everything out on my own because PinnacleCare is with me and will continue to be with me through the whole experience. I sincerely have confidence in my care, and that’s what makes it possible for me to sleep at night, even with stage 4 cancer.

 

 

 

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