Caring and Expert Treatment for Patient’s Rare Neuroendocrine Cancer

Jennifer Niedzewiecki, a Brooklyn wife and mother of two, was diagnosed with neuroendocrine cancer in December 2018. This rare and serious condition spreads slowly. But it affects many parts of the body. It also drastically increases the production of serotonin, which caused serious damage to two valves in the right side of Jennifer’s heart.

Jennifer had been healthy and leading an active life, working as a physical therapist at Maimonides Medical Center, with an array of hobbies, including biking, furniture restoration and modeling. Her medical background gave her the ability to carefully monitor her condition—and ask important questions—as she started to experience an odd assortment of symptoms in the early summer of 2018. It started with hair loss, then progressed to difficulty digesting food, chest pain, and flushing. She saw several medical specialists, who were puzzled by her unusual symptoms. It wasn’t until a nutritionist did an extensive series of blood and urine tests that she learned her serotonin level was dangerously high. And it kept rising. This turned out to be an important clue. After a variety of imaging tests, physicians at Maimonides diagnosed neuroendocrine cancer. Because this is such a rare condition, they sent her to Mount Sinai’s Carcinoid and Neuroendocrine Tumor Center, one of the world’s largest treatment centers for the condition, where highly specialized therapy is available, to be cared for by Edward M. Wolin, MD, Director of the Center.

In January 2019, Jennifer was started immediately on a medication to slow her body’s production of serotonin. Dr. Wolin recommended four treatments of peptide receptor radionuclide therapy (PRRT), under the care of Nasrin Ghesani, MD, a molecular and interventional radiologist. PRRT provides targeted radiation right to the cancer cells.

But first Jennifer had to regain some of the weight she had lost and have her heart valves repaired. In August 2019, she had open heart surgery performed by David Adams, MD, Marie-Josée and Henry R. Kravis Professor and System Chairman of the Department of Cardiovascular Surgery at the Icahn School of Medicine at Mount Sinai and the Cardiac Surgeon-in-Chief of the Mount Sinai Health System. Another challenge was waiting.  Because of the location of her tumors, her doctors were concerned that the inflammation that goes along with PRRT treatment could harm her spinal cord and brain. The solution: traditional radiation treatment to shrink the tumors so that the anticipated swelling wouldn’t cause any damage.  

In January 2020, Jennifer had her first PRRT treatment—just as COVID-19 was establishing its hold on the world. Her follow-ups were in March and May. Jennifer was nervous about going to a hospital during the worst of COVID-19. She knew her ongoing treatment had left her somewhat  immunosuppressed, making her especially vulnerable to the novel coronavirus. However, she also knew that if she delayed treatment, the cancer could do more damage to her heart—and the rest of her body.

She felt reassured when she learned the protocols Mount Sinai had put in place to keep patients safe. Telehealth visits were scheduled whenever possible. Jennifer had some of her bloodwork done near her home in Brooklyn, which saved her travel. When she came into Manhattan, to The Mount Sinai Hospital, she was tested for COVID-19 prior to the procedure.  Everyone she encountered in the hospital wore full PPE. The hospital gave her a dedicated room and bathroom when she came in for treatments. And she wore an N-95 mask covered by a surgical mask for maximum protection.

“I’m living proof that Mount Sinai takes good care of you,” Jennifer told Brooklyn News 12. “You don’t have to worry about coming in for treatment.”