Recurrent Thymic Cancer: Meet Debi

Proton Therapy: Pivotal Treatment for Recurrent Thymic Cancer

For the past 30 years, 55-year-old Debi Walsh Lembo has battled and triumphed over recurrent thymic cancer, a rare cancer that originated in the thymus gland deep in her chest. Debi remained positive and strong while she endured multiple cancer recurrences, several surgeries, and a diagnosis of myasthenia gravis, a chronic autoimmune disorder. In 2022, when Debi learned that her thymic cancer had returned and had metastasized, she harnessed the therapeutic power and precision of proton therapy to treat the cancer while protecting surrounding healthy tissues. Today, Debi is cancer free and is looking forward to continuing her mission to help others, including spreading awareness on the benefits of proton therapy and the pivotal role the New York Proton Center (NYPC) played in her recovery and renewed sense of hope.

Fueling Change: From Thymic Cancer to Myasthenia Gravis

Thymic cancer forms in the cells of the thymus, a small organ that lies above the heart and under the breastbone, in the space between the lungs known as the mediastinum. Mediastinal cancers are often found during imaging tests that are done for other reasons.

In Debi’s case, doctors found a large thymoma during a lung screening for chronic bronchitis in 1995, when Debi was 25 years old. “It was a great time in my life,” recalls Debi. “I was working in my dream job in the financial district in Manhattan. When they told me I had a thymoma the size of a grapefruit, my life came to a screeching halt. I immediately underwent a thymectomy, surgery to remove the tumor, and from that point on, everything changed.”

Three years later, in 1998, Debi was diagnosed with myasthenia gravis, an autoimmune disease related to thymomas that affects the voluntary muscles and causes fatigue. The symptoms of myasthenia gravis set in rapidly and significantly impacted Debi’s quality of life. In 2004, fueled by her own experience and a desire to help others, Debi left the field of finance and went back to school for a nursing degree. For numerous years, Debi enjoyed stable health and a rewarding career as both an oncology and hospice/palliative care nurse and believed the worst was behind her. Then, in 2018, Debi began to have chest pains and was found to have an anterior mediastinal tumor and an anterior lung nodule near her left mammary artery – recurrences of her thymic cancer – which were removed by surgery.

Weathering a “Perfect Storm” with an Army of Support

Four years later, in 2022, Debi experienced what she calls “the perfect storm.” “Between the pandemic and overworking, my myasthenia gravis worsened,” she says. “My muscle strength was  declining, impacting my vision, breathing and ability to walk. My doctors recommended I undergo testing to see if the cancer came back.”

The tests revealed Debi had stage 4A thymic cancer in the pleura, the lining of her lungs, and in the pericardium, the lining of her heart. Her physicians told her she would need to undergo immediate surgery followed by radiation therapy to eradicate the cancer.

“Dr. James Huang, thoracic surgeon at Memorial Sloan Kettering (MSK), prepared me this would be a very  complicated surgery, but I made it through better than expected, due to my skilled surgeon and the MSK team, an army of supportive family and friends, and a positive outlook,” she says. “Next, I would need to undergo radiation, but I was concerned about having radiation so close to my heart and lungs, and because I already had three surgeries in the same region, I was worried about damaging that tissue.”

Reduced Long-Term Toxicities and Wound Complications with Proton Therapy

Dr. Huang recommended Debi see Dr. Charles B. Simone II, radiation oncologist at MSK and Chief Medical Officer of the New York Proton Center (NYPC). Dr. Simone is an internationally recognized expert in the use of proton therapy to treat thymic malignancies and other thoracic cancers.

“Dr. Simone’s high level of expertise and professionalism were evident from the start. He was thorough and comprehensive in explaining everything to me, including the risks and benefits of proton therapy, and he addressed all my questions, ensuring I felt confident to move forward. My health obstacles seemed insurmountable at times, and this unfamiliar type of radiation treatment felt intimidating at first. But I had no doubt after meeting with Dr. Simone that we had found the right treatment plan and the right radiation oncologist,” says Debi. “He was that kind, outreached hand that saved me at a time that I was feeling like I was about to go under. Knowledge is empowering, because the scariest thing is not understanding or not knowing what to expect.”

Dr. Simone explained to Debi that when mediastinal tumors are treated with conventional radiation, it is difficult to deliver a high enough radiation dose to control the cancer without also damaging the normal lungs, esophagus, heart, and spinal cord. Proton therapy can more effectively treat these tumors while better protecting critical structures from radiation. As a result, protons have the potential to minimize side effects such as lung inflammation (pneumonitis), scarring (fibrosis), difficulty swallowing, heart complications, hospitalizations, and other side effects that are commonly seen with conventional radiation treatment.

“Proton therapy could effectively treat her mediastinal masses and reduce long-term toxicities and wound complications, which was particularly important for Debi given her multiple prior surgeries and the location of her tumors on her heart and lungs,” says Dr. Simone. “Her myasthenia gravis symptoms were also quite debilitating, so we felt the less normal tissue we treated, the less likely we would cause immunosuppression or otherwise negatively impact her myasthenia.”

Debi had 28 sessions of proton therapy from October through December 2022 at NYPC, commuting from Long Island with her husband and #1 supporter, Charlie.

“The NYPC felt just like home to us,” says Debi. “Even waiting in the treatment area with other patients was like a safe haven where we would sit, talk, and support each other, which is very important, because going through cancer can feel isolating at times. Being able to connect through our shared proton therapy experience became a very meaningful and positive part of the experience.”

“I actually looked forward to my appointments at the NYPC, because I knew I was receiving the best possible care, in a state-of-the-art facility, by a highly skilled team that was rooting for me each step of the way,” she continues. “I am indebted to the entire team, including nurse practitioner Alisa Ryncarz, social worker Chrissy Rubin, and clinical unit coordinator Shawn Giordano, who made it an exceptional patient experience.” “As a nurse, I can recognize when someone  is invested and wants to be part of your journey, and that was Dr. Simone, says Debi. “My cancer is rare, but Dr. Simone has a great deal of knowledge and experience with it, and an interest in its complexities, as well as how it affected me as a whole patient.”

Looking Toward the Future

Today, nearly three years have passed with no evidence of disease. “I will continue to see Dr. Simone for lifetime surveillance,” says Debi. “A month ago, he brought to my attention that this year would be 30 years since my first cancer diagnosis! It was a very emotional moment for Dr. Simone to frame it that way and humanize this challenging health journey.” 

Now on leave from her nursing job until her myasthenia is under better control, Debi is enjoying volunteering, quality time with family/friends, and living in the moment to enjoy the simple things in life with her husband, like relaxing days at the beach and a cruise to celebrate this 30-year milestone “It’s been a complex journey, but I am continuing on my mission to help others and find ways to use my experience to advocate for others going through challenges,  and I am looking forward to the next chapter of my life,” says Debi. “My first goal is to share my story and give recognition to the exceptional team at NYPC who care enough to go the extra mile to make a difference in all the lives they touch. It made all the difference in mine.”