Most medical centers and major cancer organizations arrange cancers by organ systems. Patients with advanced radioactive iodine refractory thyroid cancers have traditionally been cared for in head and neck groups, and adrenal cancers in genitourinary groups.

Unfortunately, this means that patients with endocrine cancers are embedded in groups that are home to much more prevalent cancers, seemingly relegating endocrine cancers to second-class status. For example, within medical oncology, squamous cell head and neck cancers far outnumber anaplastic thyroid cancer; prostate and kidney cancers eclipse adrenal cortical carcinoma and malignant pheochromocytoma. As a result, these less common but life-threatening endocrine cancers don’t get the attention they need.

Since 2005 Mayo Clinic has bucked this traditional system by pulling endocrine cancers out of the shadows with the formation of its Endocrine Malignancies Disease Group, which spans all Mayo locations. The multidisciplinary group integrates Mayo Clinic specialists in endocrinology, medical oncology, endocrine surgery, ENT surgery, radiation oncology, pathology, radiology and nuclear medicine to focus on these often-neglected cancers.

The structure we’ve adopted at Mayo Clinic allows us to more specifically develop the practice, clinical expertise, research and clinical trials in this previously neglected disease space.”

Keith Bible, M.D., Ph.D.

On the Rochester campus, the disease group spawned the endocrine cancer care team, a standalone entity in the Division of Medical Oncology. Care team members include medical oncologists Keith Bible, M.D., Ph.D., and Ashish Chintakuntlawar, M.B.B.S., Ph.D., and endocrinologists Mabel Ryder, M.D., and John Morris III, M.D.. These physicians, along with chemotherapy nurse Crystal Hilger, combine forces to provide true sub-specialized care for patients with the most advanced and threatening endocrine cancers.

“It’s challenging to gain traction for endocrine cancers when an anatomical-based medical oncology structure is dominant, leading endocrine cancers to be overwhelmed by more common cancers,” says Dr. Bible, founding chair of Mayo’s Endocrine Malignancies Disease Group. “The structure we’ve adopted at Mayo Clinic allows us to more specifically develop the practice, clinical expertise, research and clinical trials in this previously neglected disease space.”

Restructuring of how endocrine cancers are addressed at Mayo Clinic has led to:

• Refined and integrated care across spectrum of endocrine cancers: Achieved disease group unity across Mayo Clinic campuses; implemented biweekly video-conferenced Endocrine Cancer/ Thyroid Tumor Board; developed novel therapeutic approaches for treatment of rare endocrine cancers; expanded education of providers, fellows and residents, and fostered collaborative efforts; instituted annual Endocrine Malignancies Disease Group retreat focused on improving patient outcomes with advanced cancers and unifying the practice. ∙
• Optimized approach to thyroid nodules: Developed care process model for AskMayoExpert to guide evaluation of thyroid nodules across Mayo Clinic — one of the most used care models.
• Improved overall survival in anaplastic thyroid cancer: Increased one-year survival from 10% to 42% from 2000 to 2018 with coordinated use of surgery, chemotherapy and radiation therapy; developed and completed first-ever fully accrued randomized therapeutic clinical trial through Radiation Therapy Oncology Group with 100+ participating sites.
• Increased clinical trial participation: Grew from no therapeutic endocrine cancer clinical trials in 2004 to 12 completed investigator-developed and led trials in differentiated, medullary and anaplastic thyroid cancers as well as paraganglioma/pheochromocytoma and adrenal cortical carcinoma; five trials actively accruing patients in 2019; promotion of trials within cooperative trial groups.
• Increased volume of patients with most threatening advanced endocrine cancers: Tripled medical oncology endocrine cancer practice patient volumes between 2007 and 2009 with implementation of endocrine cancer-focused group.

“Endocrinologists and surgeons are often the frontline providers for patients with endocrine cancers, while patients with the most threatening disease are traditionally seen by medical oncologists,” says Dr. Ryder. “At many medical centers, medical oncologists who treat these patients lack expertise because they might see only one or two such patients per year, making it difficult to be up to date in this area. Complex endocrine cancers also often have life threatening hormone-related complications of their disease, necessitating integrated endocrine oncology expertise. At most institutions there simply aren’t large numbers of advanced endocrine cancer patients, making it a challenge for any physician or practice to have the concentration of expertise have the concentration of expertise necessary to develop novel therapies for these cancers.

“In part due to Mayo Clinic’s commitment to developing and leading practice-changing therapeutic clinical trials in metastatic conditions, we’ve had a significant increase in patient referrals. We now have a high-volume advanced endocrine oncology practice. Our experience demonstrates that developing a subspecialty tumor group for uncommon malignancies offers an opportunity to build expertise, increase patient volumes, and enhance therapeutic options and clinical trials for these historically neglected cancers.”

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This article was originally published in Mayo Clinic's Alumni Magazine, Issue 3, 2019.

Tags: About, Ashish Chintakuntlawar, AskMayoExpert, clinical trials, Crystal Hilger, endocrine cancer, endocrinology, John Morris, Keith Bible, Mabel Ryder, Mayo Clinic Cancer Center, oncology, People, republished, thyroid cancer