The 2023 Boston Head & Neck Cancer Symposium Focused on Human Impact and Patient Experiences

 

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Dr. Maria Kukuruzinska, GSDM associate dean of research and professor of translational dental medicine, said every symposium–including this year’s–has showcased the tremendous progress in biomedicine, emerging technologies, and new treatments. Check out our Head and Neck Cancer Symposium 2023 album on Flickr to see more photos. (Photo credit: Rachel Philipson, GSDM) 


 

The patient perspective—as valuable as it is—frequently is overlooked during scientific and clinical applications. To help address this, the 2023 Boston Head & Neck Cancer Symposium championed the patient voice, most notably by adding for the first time a patient panel with three cancer survivors. 

The sixth installment of the symposium, held on October 6th, was co-hosted by Boston University, the Dana-Farber Cancer Institute, Mass Eye and Ear Infirmary/Massachusetts General Hospital, and Beth Israel Deaconess Medical Center.  

“[The symposium] brings together researchers and clinicians, researchers working on head and neck cancer research, and clinicians who are treating head and neck cancer patients, and some people who do both,” Barbara Pyke, GSDM associate director of research said. “[In addition to] initiating conversations or extending conversations between them, so that the work that the researchers are doing can get translated into a human impact and impact on patients, an impact on treatment or prevention or diagnosis.”  

The symposium had sessions focused on HPV-related head and neck cancer, non-HPV related head and neck cancers, translational approaches to head and neck cancer, and salivary gland and thyroid cancers with distinct panel discussions. The patient panel followed the second session’s panel discussion.  

During the patient panel, three cancer survivors–Shawn Elizabeth George, Ian MacDonald, and Mary Lou Rossano-Collier–shared their cancer treatment experiences and offered personal insights on how treatment teams can make treatment easier for patients. They all expressed gratitude for their care teams and emphasized the importance of compassionate care.  

Dr. Tracy Battaglia, Boston University Chobanian & Avedisian School of Medicine community health sciences professor and Women’s Health Interdisciplinary Research Center director, moderated the patient panel. Battaglia thanked the three patients–who have 26 survivorship years between them–for being emotionally vulnerable when sharing their stories. 

“One of the main barriers to translational science is engaging the community in the process,” Battaglia said. “These are really complex diseases with complex solutions, and it’s increasingly recognized that engaging the patients authentically in the solutions is really necessary to impact care. We are really, really lucky to have three survivors with us today.”  

During the panel, George shared that she was diagnosed with adenoid cystic carcinoma, a rare salivary gland cancer, in 2017. After visiting a few doctors, George decided to seek treatment at Mass Eye and Ear, where they performed a partial maxillectomy, removing much of her palate. She also received 35 rounds of proton beam radiation and seven rounds of low-dose chemo at Mass General. She has been six years out from treatment and prays to continue to have no evidence of disease (NED.)  

She now tells her patient story in a variety of platforms, including her Live from the Inside Out podcast, her book Our Struggles Have Purpose, and her work with the Adenoid Cystic Carcinoma Research Foundation. George emphasized the value of having a nurse navigator as a point of contact to ask questions and get answers in a timely manner.  

“The mental game we play in the waiting is really hard,” George said. “I call it ‘The Pause,’ because you don’t want to create stories in your head of good or bad, but you would like to get some answers. A nurse navigator would be beneficial.”  

In 2019, Ian MacDonald was diagnosed with HPV-positive squamous cell carcinoma and metastatic squamous cell carcinoma. While his treatment–which included a newly invented robotic arm to remove the tumor from his left tonsil–was successful, he said recovery was a bit of a challenge for the first few days, as a communication error led to the nurses thinking he only had a tonsillectomy and were giving him solid pills and food. The error was corrected, and his recovery got back on track. While he said his issues were resolved, he noted that others are not as lucky and said there is a need for clear communication and honesty among medical professionals.  

“I’m just very grateful that I didn’t have some of the experiences that a lot of other people [did], and I can understand that,” MacDonald said.  

Despite being a left tonsil cancer survivor for 16 years, Mary Lou Rossano-Collier said she still gets emotional when talking about her treatment experience. She got teary when discussing her multiple complications, including difficulties with her gastrostomy tube (a medical device that brings nutrition directly to the stomach) and painful burns on her body. 

Nowadays, Rossano-Collier is a member of the Boston Head and Neck Cancer Community Advisory Board, creating public awareness about cancer patients’ emotional and physical journeys during cancer treatment. She said patient mental health is equally as important as their physical health.  

“It’s not just the last pill,” Rossano-Collier said. “This is a lifetime journey. But I think we’re all very, very grateful for what people have done for us.” 

In the keynote presentation, Dr. Sana Karam, University of Colorado associate professor of radiation oncology and vice chair of translational research, spoke about radiation immunotherapy combinations targeting head and neck cancers. She has been conducting research on how radiation can trigger an immune response against cancer cells. She expressed that the reason she–and fellow researchers–do their work is to enhance the patient experience and how their work can improve patient outcomes.  

“You do all these experiments [and] it’s exciting [when] you found a solution, but we’re doctors, we’re physicians. Our job is to serve our patients,” Karam said. “So [in] thinking about … the horrendous journeys that our head and neck cancer patients go through, you ask: Do we really want to put the patient through this…Is there any better way to do it?” 

Dr. Maria Kukuruzinska, GSDM associate dean of research and professor of translational dental medicine, said every symposium–including this year’s–has showcased the tremendous progress in biomedicine, emerging technologies, and new treatments.  

“The spirit of symposium is the belief that bringing diverse perspectives from basic science and clinicians really helps to bring together interdisciplinary research teams ,” Kukuruzinska said. “This is likely to drive more expedient development of new therapies and lasting therapies.”

 

By Rachel Grace Philipson