While rare cancers are defined as those with fewer than six cases per 100,000 people per year, collectively, they are surprisingly common—with one in five cancers diagnosed in the U.S. considered a rare cancer [see sidebar for a list of the cancers that are characterized as rare].
“We have been seeing a significant number of rare cancers since the expansion of our cancer program and have recognized that these patients require specialized care. We developed the Rare Cancers Program at MD Anderson Cancer Center at Cooper to meet the needs of this unique patient population—providing them with a dedicated clinical team focused on highly coordinated clinical care and supportive services,” explains Tae Won B. Kim, MD, Director of the Rare Cancers Program.
“Patients are seen by all of the crucial specialists appropriate for their disease type at their initial visit,” he continues, noting that in this patient-centric model, the various disciplines come to the patient instead of the patient having to visit different specialists.
“Because of the scope of our cancer program we have experts in every disease type. If we need the expertise of an orthopaedic oncologist, or a thoracic oncologist—we have them, and we bring them in as members of the team,” he says. “We also have dedicated clinic schedules for rare cancer patients so that the team and the care are fully coordinated.”
“ This focused, multidisciplinary approach facilitates the advanced care coordination patients need and allows disease site experts to come together to discuss the patient’s care plan,” he adds. “This is important because the standard of care often isn’t well defined for rare tumors.”
“This multidisciplinary approach helps patients leave their initial visit with a clearer understanding of their disease and what their treatment will entail as well as the confidence of knowing that an entire team is working collectively and collaboratively on their behalf,” he says.
“The services offered through MD Anderson at Cooper’s Rare Cancers Program are extensive, and include special testing of tumors when appropriate,” Dr. Kim notes.
Our pathologists subspecialize in the analysis of different types of tumors, and when appropriate, consult with experts at MD Anderson Cancer Center in Houston to ensure accurate pathology findings,” he says. “Advanced studies such as molecular profiling enable us to get the data we need to make definitive diagnoses efficiently and definitively.”
The Rare Cancers Program gives patients access to more treatment options than ever before, including standard chemotherapy, radiation, and surgical oncology, as well as access to the latest immunotherapies and targeted drug regimens specific to the patient’s cancer.
“Our access to experts at MD Anderson Cancer Center in Houston is also a distinct advantage,” Dr. Kim says.
“Through our partnership with one of the nation’s leading cancer centers, we can call upon our colleagues in Houston who may have considerable experience dealing with particular types of rare cancers— consulting with them to determine the best course of treatment. We don’t have to reinvent the wheel with a new protocol.”
In addition, ongoing research and clinical trials enable the MD Anderson at Cooper team to offer patients novel treatments before they are widely available.
Another vital resource that the Rare Cancers Program provides is supportive care services, including nut r it ion counseling, complementary medicine therapies, palliative care, financial counseling, and social work. These services make a vital difference in the well-being of our patients.
“We also have dedicated nurse navigators to help patients and their families through the health care system in a meaningful, thoughtful way,” Dr. Kim notes. “The Rare Cancers Program is a patient-centered effort that allows for efficient communication and delivery of care based on the latest scientific knowledge.”
The Rare Cancers We See
Our program sees the full range of cancers characterized as rare:
Oral Cavity and Pharynx
- Salivary gland
- Floor of mouth
- Gum and other mouth tissue
- Trachea, mediastinum
- Small intestine
- Anus, anal canal, and anorectal
- Retroperitoneum, peritoneum, omentum, and mesentery
- Male breast cancer
- Inflammatory breast cancer
Brain and Central Nervous System
- Spinal cord, cranial nerves, and other parts of CNS
- Pituitary gland
- Pineal gland
Other Rare Cancers
- Soft tissue sarcomas, including heart
- Bone sarcomas
- Cancer diagnosis during pregnancy
- Pregnancy in cancer survivors
For a physician-to-physician referral to the Rare Cancers Program at MD Anderson Cancer Center at Cooper, please call Dr. Kim directly at: 215.516.9660.