This subspecialty clinic is available to children and adults with a confirmed or possible diagnosis of a hereditary susceptibility to paraganglioma or pheochromocytoma.
Genetic conditions that increase the risk for paraganglioma and pheochromocytoma include:
- Hereditary Paraganglioma-Pheochromocytoma Syndrome (caused by the genes SDHA, SDHB, SDHC, SDHD, SDHAF2, MAX, TMEM127)
- Multiple Endocrine Neoplasia Type 2 (MEN 2; caused by the RET gene)
- von Hippel-Lindau Syndrome (VHL; caused by the VHL gene)
What Do We Do?
Some patients with a hereditary susceptibility to paraganglioma and pheochromocytoma have health needs for which coordinated visits with multiple subspecialists are helpful. Our clinical team includes healthcare providers who have seen and treated other patients with paraganglioma and pheochromocytoma and are knowledgeable regarding these rare tumors. Our clinical coordinator can discuss your specific needs and help arrange appropriate visits for you.
Scheduling an Appointment
Please contact our clinical coordinator:
Jessica Marquard, MS, LGC
Jessica is a certified genetic counselor with a special interest in paraganglioma and pheochromocytoma. She coordinates the Hereditary Paraganglioma and Pheochromocytoma Clinic, meets with patients to discuss their personal and/or family history of paraganglioma and pheochromocytoma, educates on associated hereditary conditions, and discusses options for genetic testing as well as implications for family members.
Dr. Eng is a cancer geneticist and Chair of the Genomic Medicine Institute at Cleveland Clinic. She cares for patients with hereditary tumor and cancer susceptibility conditions and provides recommendations for surveillance.
Dr. Berber is the Director of Robotic Endocrine Surgery at Cleveland Clinic. He performs surgery to remove adrenal pheochromocytomas and extra-adrenal paragangliomas, and also manages surveillance for patients with a hereditary susceptibility for these tumors.
Dr. Lorenz is a surgeon in the Head and Neck Institute with expertise in the surgical treatment of paraganglioma. He performs surgery to remove paragangliomas from the neck and also manages surveillance for patients with a hereditary susceptibility for paraganglioma.Dr. Lorenz also treats infrequent side-effects from head and neck paraganglioma tumors, including issues with speech or swallowing, should they arise.
Dr. Adelstein is a medical oncologist in the Taussig Cancer Institute with expertise in the treatment of head and neck cancers. He provides recommendations for chemotherapy agents for individuals with malignant paragangliomas of the head and neck when necessary.
Dr. Greskovich is a radiation oncologist in the Taussig Cancer Institute. He is an expert in radiation therapy for head and neck cancers. He provides radiation treatment recommendations for individuals with paragangliomas of the head and neck when indicated.
Prior to Your Visit
You may be contacted by Jessica Moline, our genetic counselor and clinical coordinator, to have a discussion regarding a time frame for your trip and what visits may be helpful to you based on your personal medical history and needs. If you are coming from out-of-town, we will make every effort to coordinate your visits as closely together as possible to help you minimize travel expenses.
At Your Visit
We will provide personalized expert genetic counseling and education to you and your family. During your visit, you will see a genetics expert (genetic counselor and/or clinical geneticist) for a genetics evaluation.You may also be scheduled with other Cleveland Clinic providers with expertise in paraganglioma and pheochromocytoma during your visit depending on your medical needs and physician availability (see Our Team; hyperlink).
Genetic counseling involves:
- Diagnosis of a genetic condition through review of family and medical history, examination by a clinical geneticist, and if appropriate, genetic testing
- Education about your specific diagnosis and any associated health risks if known
- Suggestions for future medical care to optimize your health
- Discussion of health risks to family members
- Recommendations regarding genetic testing for at-risk family members and coordination of testing, if desired
- If genetic testing is indicated, blood can usually be drawn on the same day following your appointment.
Following Your Visit
After your visit, it may take anywhere from a few days up to two weeks for your clinical appointment notes to reach the healthcare providers that you requested to receive a copy. We are also glad to communicate with your healthcare providers about your case as needed. You are always welcome to follow up with us with questions regarding your visit.
Referral for Genetic Counseling
If your doctor has not already referred you for genetic counseling, please have them order a consult to genetic counseling if they are within Cleveland Clinic. If you are being referred from outside Cleveland Clinic, please have your doctor’s office call us at 216.636.1768 or complete a physician referral form and fax to 216.445.6935.
Physician Referral Form
Before your visit, please make sure to have a copy of the medical records from each healthcare facility where you/your child have undergone treatment, testing, evaluation, surgery, or any other medical procedure. You may send a completed copy of the authorization for the release of medical information from other healthcare facilities to each facility and ask them to send records by fax (if 30 pages or fewer) to 216.445.6935 or postal mail to:
Jessica Moline, MS, CGC
9500 Euclid Ave. NE50
Cleveland, OH 44195
Release of medical records form
It would also be helpful to have a list of your local medical providers available to give the clinicians you are seeing so that your medical records from your appointments in Cleveland are sent to everyone you would like to receive a copy.
Traveling to Cleveland
Cleveland Clinic has experience working with a broad range of insurance providers. We strongly recommend that you contact your insurance company prior to your appointment date to verify coverage. We are happy to write letters of medical necessity as needed to help you obtain coverage for visit costs.
Many insurance companies will cover 96040, which is the CPT code for genetic counseling. However, we do ask that you check with your insurance company to verify that your plan does cover the cost. If your plan does not cover 96040, please contact us at 216.636.1768 and we can discuss the proper payment arrangements with you.
If genetic testing is indicated, your genetic counselor will discuss costs and insurance coverage during your appointment.
Some patients are concern that their genetic information may be used against them. To learn about your patient rights and protections in place to prevent genetic discrimination, read our article on GINA.
Genetic discrimination fact sheet (GINA)
Paraganglioma and Pheochromocytoma Overview
Up to 30% of paraganglioma and pheochromocytoma are believed to be hereditary. Hereditary susceptibility to PGL and PC can be inherited and can be passed on within a family. When a person has a hereditary susceptibility, he or she has inherited a copy of a susceptibility gene with a mutation from one parent, and a working copy of the same gene from the other parent. Individuals who inherit a mutation in a PGL or PC susceptibility gene have a much greater chance for developing PGL or PC, and in some cases, other tumors and cancers. However, not everyone with a susceptibility gene mutation will develop PGL/PC or cancer.
Features suggesting a hereditary susceptibility to PGL or PC include:
- Early age of diagnosis (i.e. PGL or PC at or before age 45)
- Two or more family members with PGL or PC
- Multiple or bilateral PGL or PC
- Abdominal/Thoracic PC outside of the adrenal glands
- Malignant PC or PGL
- Other associated diagnoses such as Medullary thyroid cancer; hyperparathyroidism; tumors of the retina, spinal cord, or brain; kidney cancer or cysts; pancreatic tumors or cysts
Since it is possible for any patient with a PGL or PC to have a susceptibility gene, all patients should consider genetic counseling.