Sue Lim

Sue Lim was a caregiver to her late husband, Carl, who was her best friend, fellow adventure seeker, and life partner of 25.5 years. He passed away in March 2021 from a recurrent metastatic lymphoepithelial-like carcinoma of the parotid gland (LELC).

Diagnosed in May 2016, Carl initially noticed an enlarged left neck lymph node that felt stone hard. He was 45 years old, healthy and had no previous medical conditions, which was actually why it may have taken months to convince a doctor to do a biopsy.

His primary care physician wanted to rule out an infection. Though there were not any changes in his labs, and he wasn’t exhibiting any symptoms, i.e. fever, pain, redness, fatigue or feeling poorly anywhere, a series of antibiotics were prescribed. The enlarged lymph node persisted.

Finally, Sue, an oncology nurse, referred Carl to an ENT specialist and an initial fine needle aspiration was performed. The findings were a false negative. It was only when Sue followed up four weeks later to report that the lymph node had grown larger than an excisional biopsy was ordered and scheduled within days. The pathology then confirmed that he already had Stage IV LELC.

“We had never heard of salivary gland cancers, let alone LELC. The first sign that something was very wrong was when the surgeon came back with the diagnosis with a journal article about the disease,” explained Sue. “In the coming days, while heavily researching on the internet, we learned that it may be an association with Epstein-Bar Virus (EBV) in LELC, as well as a higher prevalence in parts of Asia (particularly in regions of China, Hong Kong). Carl was born in Hong Kong and had lived in the U.S. since age 12.

Carl and Sue then sought treatment at the Seattle Cancer Care Alliance to see one of its Head and Neck Surgeons, the late Dr. Eduardo Mendez. Because of the aggressive nature of LELC, as well as the rapid progression of his swollen neck lymph nodes, it was decided that Carl needed a full left neck dissection with flap reconstruction, but it was complicated by the tumor fully encasing the facial nerve. There was a high risk of accidentally severing the facial nerve during the surgery, resulting in partial facial paralysis. Carl underwent a painstaking 11-hour surgery. Dr. Mendez confirmed that the tumor was removed by excising the entire left parotid gland and that the facial nerve was preserved.

Carl recovered quickly from the surgery and several weeks later, when his surgical wounds were healed, he began concurrent three cycles of chemotherapy with 33 doses of radiation to his left neck. Carl never once complained, despite the side effects (severe nausea and vomiting, radiation burns) and the placement of a PEG tube for liquid nutrition. When his chemoradiation was completed, there was no evidence of disease…or so they thought.

Unfortunately, five months later, Carl noticed a soreness on his left side, which he initially attributed to a stumble while on a walk. When this soreness became a mild pain that lasted three weeks, his oncologist ordered a CT scan, which showed that his cancer may have returned. A biopsy to his rib confirmed the devastating news that the LELC was not only back, but it had spread to his bones.

Thankfully, Carl’s oncologist, Dr. Cristina Rodriguez, was the Principle Investigator (PI) of a clinical trial that he could enroll in immediately. He participated in the clinical trial for two years, and though the cancer was still present, it shrank and was being managed with immunotherapy infusions every three weeks.

“We knew the future was uncertain, and instead of living in fear of the unknown, we decided to live life and do all the things we were not able to do,” explained Sue, “Carl and I traveled the world in between his infusions, watched Broadway musicals, and we made as many memories at home as we could with our beloved corgi, Milo.”

Unfortunately, the third year Carl was receiving immunotherapy for maintenance therapy, a scan showed that he had a lesion in his spine and that other lesions in his abdomen were growing larger in size, beginning to press down on his internal organs.

Sue and Carl went in search of another clinical trial, and Carl then enrolled into a cellular immunotherapy protocol using TIL therapy (tumor-infiltrating lymphocytes).

While waiting for insurance approval for the second clinical trial, Carl’s cancer was rapidly progressing, and he was beginning to have worsening pain. He started treatment again and it was intense. Carl was hospitalized for three weeks, all during the COVID-19 pandemic, which restricted any visitors, including Sue, into the hospital.

Carl was discharged and was pain-free for two weeks before needing to be hospitalized again for an emergent gastrointestinal bleed. He recovered, but to their disappointment, the cancer had decreased in size in some areas but was rapidly worsening in his liver. Only a few short weeks later, Carl passed away peacefully only six days after entering hospice.

“In reflecting back at the past six years, the rarity of head and neck cancers and the isolation we felt without peer support was probably the most difficult part of the journey,” said Sue. “To this day, I have yet to meet or speak to another patient with LELC, and my heart goes out to anyone else who has been diagnosed with this dreadful and aggressive disease.”

“We were fortunate to live in the Puget Sound area where there are at least clinical trials that were viable options for treatment, but even then, choices were few. My hope in becoming a Head and Neck Cancer Alliance Ambassador is to spread the word of the need for more research and funding for head and neck cancers, as well as supportive care to improve the quality of life for patients with oral and salivary cancers.”

To request Sue for your local event, please contact us at info@headandneck.org or complete the online form.