Medically reviewed by Marla Anderson, MD
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- Treatment of ISM is complex and requires a care team of multiple types of doctors
- Your primary care provider (PCP) can help you coordinate care across specialists
- If you’re having trouble navigating treatment, you may seek care from a rare disease expert, often located within academic medical centers or children’s hospitals
Indolent systemic mastocytosis (ISM) is a form of systemic mastocytosis, a type of cancer in which your mast cells, a kind of immune system cell, can build up in your organs and other internal tissues. This can cause a range of symptoms, and treatment requires a comprehensive plan involving multiple types of healthcare providers.
1. Primary Care Provider (PCP)
Because ISM is a complex condition that affects multiple systems of your body, it’s important to build a team of providers who can help treat your symptoms.
The first step is to find a primary care provider, or PCP. They might be trained as an internal medicine or family medicine doctor. For children, this would likely be a pediatrician, or a doctor specializing in the care of kids.
Your PCP can help you find specialists, coordinate your care, and help you understand the next steps in treatment. However, because PCPs don’t specialize in a specific body system, it’s important to find specialists who can work together.
2. Allergists and Immunologists
Allergists and immunologists have traditionally managed much of the care of ISM. These doctors are specifically trained on the immune system, which is directly affected by ISM.
If you seek care from an allergist or immunologist, they may be able to make an initial diagnosis based on your symptoms and then refer you to other specialists for further testing. They can also help identify and manage mast cell triggers and allergic reactions, including the risk of anaphylaxis.
Allergists and immunologists are a key part of making sure your treatment matches your diagnosis properly and is tailored to your condition.
3. Oncologists
Because ISM is considered a type of cancer, you’ll likely seek care from an oncologist, or a doctor who specializes in cancer diagnosis, management, and treatment. Some oncologists specialize in rare cancers, like ISM, and they can treat you through a range of methods, like chemotherapy, targeted therapy, and more.
4. Hematologists
Hematologists, doctors who specialize in diseases of the blood and bone marrow, may also support your treatment plan. Historically, many people with ISM only saw allergists, but because new diagnosis and treatment techniques involve the bone marrow, hematologists are a key aspect of care for ISM.
5. Dermatologists
Because ISM may present as an allergic reaction on the skin, you may seek care from a dermatologist. They can perform a full body scan to assess symptoms, such as itching, flushing, hives, and other skin manifestations of ISM.
A dermatologist can do an analysis to understand what’s triggering your skin and prescribe medication to help treat your symptoms. If you’re still looking for a diagnosis and suspect ISM, a dermatologist can refer you to additional specialists as needed for further testing.
6. Gastroenterologists
An estimated 60-80% of people with systemic mastocytosis experience gastrointestinal symptoms, such as cramping or diarrhea, as a result of their ISM. Because these symptoms can often look like other conditions, such as IBS, it’s a good idea to consult a gastroenterologist, or a doctor specializing in digestive disorders.
A gastroenterologist can help you understand your triggers and manage symptoms related to your digestion. They may prescribe medications that can help relieve these symptoms.
7. Psychiatrists
Dealing with a chronic, complex condition can have mental health impacts and affect your quality of life. It’s recommended to see a psychiatrist—a doctor specializing in mental, emotional, and behavioral disorders—as part of your ISM care team. They can help you cope with anxiety, depression, and the stress of managing an unpredictable condition like ISM.
A psychiatrist can assess any ways that your symptoms or treatment plan might be affecting your mental health. They can perform a psychiatric evaluation and help you with any medication or therapy that you might need for your mental health.
8. Endocrinologists
Another common complication of ISM is osteoporosis, which is when your bones lose density and become brittle. This happens because mast cells build up in your bone marrow and release chemical messengers that increase bone breakdown.
Endocrinologists, doctors who specialize in hormone imbalances, are the primary providers responsible for identifying and treating osteoporosis, so they’d likely be a part of your ISM care team.
9. Cardiologists
Because people with ISM are more likely to experience cardiovascular disease compared to people without ISM, you may receive treatment from a cardiologist. Mast cells can disrupt plaque in the arteries, which can trigger a cardiovascular incident, like a heart attack. Receiving care from a cardiologist in advance of any incident can help prevent one from happening.
Navigating Your Treatment Plan
Working with a team of doctors with different specialties can help provide a comprehensive treatment plan for ISM.
However, if you need additional support with your diagnosis, symptoms, or treatment, you may consider seeking care from a rare disease expert who specializes in ISM. Another option is to find a team focused on ISM located at an academic medical center or children’s hospital.
Finding a rare disease specialist may help you get the specialized care you need and improve your outcome. The Mast Cell Disease Society has a database of experts you can contact.
