Our Rare Genetic Syndrome team specializes in comprehensive surveillance and care coordination for people with rare tumor predisposition syndromes, such as Li-Fraumeni and Von Hippel-Lindau.
We offer early, proactive management of these disorders, which is essential to achieving optimal health outcomes.
Our comprehensive evaluations involve gathering a personal and family history, previous laboratory and imaging studies, and molecular test results. That way, our multidisciplinary team can develop and implement a highly personalized care plan.
What patients are seen by the rare genetic syndrome team?
We treat people with a wide range of rare tumor predisposition syndromes, some of which include:
- Li-Fraumeni
- Von Hippel-Lindau
- Hereditary Paraganglioma-Pheochromocytoma
- Neurofibromatosis type 1
- NF2-, LZTR1-, and SMARB1-related schwannomatosis
- Multiple Endocrine Neoplasia type 1, 2A, 2B, 4
- PTEN-Hamartoma Tumor Syndrome
- Nevoid Basal Cell Carcinoma Syndrome
The rare genetic syndrome consists of a team of specialized professionals, including a board-certified clinical geneticist, genetic counselors, and nurse practitioners with expertise in oncology care. Our multidisciplinary team also features expert gastroenterologists, obstetrician-gynecologists, urologists, and other specialists who provide targeted, site-specific care.
Throughout your care journey, a nurse navigator will be your dedicated guide, assisting with all aspects of care coordination.
Personalized care provided in the rare genetic syndrome clinic:
Based on your needs, your care team may include a:
- Geneticist
- Gastroenterologist
- Radiologists
- Oncologist
- Surgeon
- Advanced Practice Provider
- Genetic Counselor
- Health Coach
- Nurse Navigator
The experts at Sylvester specialize in:
Genetic testing and counseling
Genetic testing can tell you whether you've inherited a genetic mutation, which significantly increases your risk of developing cancer. Our genetic counselors can educate you about genetic testing and help you decide whether testing is right for you. They can also talk to you about your results and your options.
Risk-reduction surgery referrals
If you're at high risk of developing specific types of cancer for which preventive surgery may be recommended, we're here to help you understand all the risks and benefits. Surgery is a difficult decision; we help you understand genetic testing results and offer emotional support every step of the way. We make sure you know all your preventive options so that you can make an informed choice.
Pharmacologic Prevention
This preventive approach uses medicines to lower your cancer risk. Your care team will talk to you about the possible side effects and risks of chemoprevention and help you decide if it's right for you.
Our program also offers a High-Risk Prevention and Wellness clinic for patient families who want to be tested to understand their risk of developing cancer.
Your Health Coach provides lifestyle modification advice regarding your diet and nutrition, tobacco cessation, weight management and exercise physiology, all of which can help reduce the risk of developing cancer.
To schedule an appointment with a health coach specialized in cancer prevention, please call 305-689-RISK (7475).
