Partnering With Patients Is Integral for a Good Outcome

After being diagnosed with Hodgkin lymphoma, I was fortunate to find two guardian angels whom I credit with saving my life.

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Paula Ngon

Paula Ngon

About 3 years ago, I woke up from a sound sleep and was having a hard time breathing. It felt like someone was sitting on my neck, constricting my airways. I could feel prominent swelling in my lymph nodes along my neck and clavicle, and I was scared. A trip to the emergency room proved fruitless, and it was a pre-cursor to the initial poor care I received after my eventual diagnosis of stage II nodular sclerosis Hodgkin lymphoma. However, I was also fortunate to find two guardian angels along my cancer journey whom I credit with saving my life.

I was told by the emergency room physician that a blood test found nothing unusual and to go home; instead of being comforting, that only added to my fear. Just age 26 at the time, I never worried about my health and rarely got sick. But I know my body and knew instinctively something was very wrong.

Because of my usual good health, I didn’t have a primary care physician. An online search for one brought me to my first guardian angel. Like me, the physician is a woman of color, and the moment she walked into the exam room, I could feel my fear lift. I was finally interacting with someone who was listening to my symptoms and who took immediate action.

“We are going to figure out today what is going on for you,” she said. A chest x-ray the physician ordered showed a shadow in my chest, and she immediately recommended a computed tomography scan. A few days later, she called to tell me the results indicated I most likely had cancer. She set up appointments for additional tests, including a tissue biopsy of a swollen lymph node, which along with the imaging scans, confirmed the diagnosis of stage II nodular sclerosis Hodgkin lymphoma.

Challenging Medical Authority

An oncologist the doctor recommended wasn’t in my health insurance plan, and what followed was a series of medical mishaps that nearly cost me my life. The oncologist I found through a major academic medical center’s health system recommended the standard-of-care chemotherapy regimen for this type of lymphoma: doxorubicin, bleomycin, vinblastine, and dacarbazine.

Before starting treatment, I elected to freeze my eggs to protect my fertility and immediately ran into problems. While in the recovery room after the egg retrieval procedure, I began having difficulty breathing. The doctor said it was likely from ovarian hyperstimulation syndrome, and the problem would subside over time. But I continued to have trouble breathing and decided to check myself into the emergency room, where it was discovered that fluid was building up in the space between my lung and chest wall. Thoracentesis was performed to clear the fluid from my lung cavity, but my health problems didn’t end there.

Despite my reservation, my oncologist insisted I have a port implanted in my upper chest before I began chemotherapy, and once again I encountered a severe complication. As I dressed after the procedure, my right arm felt numb and turned blue. When I showed my arm to the oncologist, he said the tumors on that side could be causing the problem; once I began chemotherapy and the tumors started to shrink, the issue should resolve and to just be patient. In the meantime, he agreed to remove the port.

After days and then weeks passed and the chemotherapy was having no effect on the numbness and discoloration in my arm, I felt I had to confront my oncologist and challenge his authority. I had been telling him since the problem in my arm began that it was serious, but I felt he wasn’t listening to my concerns and taking action to relieve the issue. Finally, he agreed to have my arm examined by a radiologist, who immediately sent me to the emergency room for tests. There, imaging scans showed numerous blood clots in my arm, and I spent the next week in the intensive care unit for treatment to dissolve the clots.

During that time, I never heard from my oncologist and realized I no longer felt safe in his care.

Changing Despair Into Hope

Then my second guardian angel entered my life. I am fortunate to have an amazing network of mentors. One of them recommended a family friend, John P. Leonard, MD, the Richard T. Silver Distinguished Professor of Hematology and Medical Oncology and Senior Associate Dean for Innovation and Initiatives, Weill Cornell Medicine, New York. The moment I met Dr. Leonard, he said: “We are going to make this the most boring and easy experience for you.” He then answered all my questions and introduced me to the nursing and social work services staffs; they provided me with patient information from the Lymphoma Research Foundation, where Dr. Leonard is Past Chair of the Scientific Advisory Board and the Leukemia & Lymphoma Society.

Dr. Leonard’s knowledge about this cancer, his kindness, and willingness to hear my concerns changed my perspective on having cancer and turned my despair into hope. After completing treatment in 2021, I remain in remission and feel positive about my future.

Advocating for Other Survivors

My experience as a young Black cancer survivor has led me to build a nonprofit patient community website that offers support for Black patients diagnosed with cancer or another serious illness. I plan to launch the website soon.

I’ve learned many lessons since my cancer diagnosis. Most important, the partnership between oncologist and patient is integral to a positive outcome. Patients benefit when they are empowered to have a voice in their health care, and so do oncologists. Shared decision-making is the cornerstone of patient-centered care. It equips patients with the information they need to make informed choices about their care and helps oncologists engage more effectively with their patients.

Now my goal is to advocate for other cancer survivors, especially Black cancer survivors, who may not have the resources to advocate for themselves. Cancer is tough, and no one should have to go through this journey alone. 

Ms. Ngon, who lives in New York, is a public relations and brand communications professional in the media and entertainment industries and has represented such publications as Vanity Fair, People, and Entertainment Weekly, as well as The Estée Lauder Companies. She is on Forbes magazine’s 30 Under 30–Media list for 2024.

Editor’s Note: Columns in the Patient’s Corner are based on information received from patients and should be considered anecdotal.