Why Choose Us for Systemic Mastocytosis Care
At Huntsman Cancer Institute, you receive expert, compassionate care for systemic mastocytosis. Our Comprehensive Cancer Center is a nationally recognized leader in research and treatment for this disease. Your multidisciplinary team includes hematologists, allergists, dermatologists, and gastroenterologists who collaborate to ensure you receive comprehensive care tailored to your needs. We work with you to balance the symptoms and related complications of this rare disease to improve your quality of life.
“Everyone at Huntsman Cancer Institute has been so terrific. I cannot say enough good things about the staff and everyone I worked with."
Systemic mastocytosis patient
Treatments We Offer
Treatment depends on your disease stage, location, and preferences:
- Histamine blockers and mast cell stabilizers
- Chemotherapy
- Targeted therapy
- Stem cell transplant
- Bisphosphonate therapy, used to prevent the loss of bone density
- Clinical trials
- Watchful waiting
Our Expertise
As the only center in the region recognized as a Center of Excellence for Mastocytosis by the American Initiative in Mast Cell Diseases (AIM)—and as the National Cancer Institute-designated Comprehensive Cancer Center serving the Mountain West—we provide the latest treatments and the highest level of care. We offer patients access to the following:
- Highly experienced systemic mastocytosis specialists
- Expert diagnosis and treatment plans for this rare and complex disease
- Advanced approaches not widely available elsewhere
Patient Care Philosophy
We believe no one should face cancer alone. Our dedicated and world-renowned doctors, nurses, and medical staff are at the forefront of patient-centered care. We treat the whole person, not just their cancer.
Each day, our medical, surgical, and radiation oncologists work together across disciplines to create and coordinate treatment plans for every patient. We understand cancer is a complex disease. That is why we use a team approach that includes social workers and support groups, as well as wellness and integrative health services such as acupuncture, massage, creative arts, and more.
Find a Systemic Mastocytosis Doctor
Systemic Mastocytosis Research
Our expert research teams are leading the way in research on systemic mastocytosis, working closely with other top experts around the world to develop and test new treatments and improve quality of life. As the only American Initiative in Mast Cell Diseases clinical trial site in the Mountain West, we lead and participate in trials that give our patients access to emerging treatments that aren’t available anywhere else in the region.
By participating, you play an active role in advancing care and helping others facing the same diagnosis. Interested in learning more?
Talk to your doctor about whether a clinical trial could be right for you.
Clinical Trials
Make an Appointment with a Systemic Mastocytosis Specialist
To make an appointment with a systemic mastocytosis specialist, fill out our appointment form or call 801-587-7000. Our team will determine if your insurance covers treatment at Huntsman Cancer Institute or if you need a referral from a primary care doctor.
External providers can refer a patient using the online referral form or by calling 801-587-7000 to speak to a patient registration specialist.
Systemic Mastocytosis Basics
Systemic mastocytosis is a rare disorder that happens when too many mast cells build up in parts of your body. Mast cells are a type of cell in your body’s connective tissue. These cells are part of your immune system and help fight disease and infection. Systemic mastocytosis originates in the bone marrow, and can happen in the skin, liver, spleen, stomach, small intestine, or colon.
Systemic mastocytosis can occur as two main types:
Non-advanced systemic mastocytosis
This type includes indolent systemic mastocytosis (ISM) and smoldering systemic mastocytosis (SSM). These are slow moving and in the early stages. Mast cells build up in the tissues and organs, but the buildup of cells does not cause problems in the organs.
Advanced systemic mastocytosis (AdvSM)
Mast cells build up in organs and tissues and cause problems in the organs they invade. ADvSM has three subtypes:
- Aggressive systemic mastocytosis (ASM)
- Systemic mastocytosis with associated hematologic neoplasm (SM-AHN)
- Mast cell leukemia (MCL)
Need help navigating your care? The Cancer Learning Center is here to support you with personalized guidance, resources, and answers to your questions.
These are the warning signs of systemic mastocytosis:
- Allergic reaction that causes low blood pressure, hives, itching, flushed or pale skin, and swelling in the tongue or throat that can make it hard to breathe
- Skin rashes, itching, hives, or flushing of the skin
- Abdominal pain, diarrhea, nausea, or vomiting
- Enlarged liver, spleen, or lymph nodes
- Bone pain and/or history of osteoporosis
- Headaches, anxiety, brain fog
- Anemia and bleeding disorders
Many of these symptoms can be caused by other conditions. If you experience any concerning signs, please schedule a screening today.
These are the risk factors for systemic mastocytosis:
- Older age (associated with a more aggressive disease course)
- Anemia, or low amounts of red blood cells, and thrombocytopenia, low blood platelet counts
- High alkaline phosphatase (ALP) levels
- Genetic mutations in genes like D816V, SRSF2, ASXL1, and RUNX1
Understand your risk. Schedule a genetic counseling session today.
Doctors may use these tests to diagnose systemic mastocytosis:
- Physical exam and history: A health care provider examines your body for signs of disease. Your personal health habits, past illnesses, history of allergies to food or drugs, and symptoms of systemic mastocytosis guide the exam.
- Laboratory tests: Through testing body tissues, blood, urine, or other substances in the body, your health care team can check to see how the organs are functioning. They can also look for substances that cells produce when cancer is present.
- Biopsies:
- Bone marrow biopsy: The health care provider removes a small sample of bone marrow to look for abnormal cells under a microscope.
- Biopsies of affected organs: The health care provider removes a small sample of the organs that may be affected by mastocytosis, such as skin, gastrointestinal tract, or liver.
- Imaging tests: Using CT scans, MRIs, and ultrasounds, your health care provider can create detailed images of internal organs.
When a person is diagnosed with cancer, concerns about treatments and side effects, hospital stays, and medical bills are common. Huntsman Cancer Institute offers many ways to support patients, caregivers, and loved ones.
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