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Mastocytosis - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find some basic information about this disorder, which may or may not become cancerous, and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Mastocytosis. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Mastocytosis is a term that describes a group of disorders that are caused by too many mast cells in the body. A mast cell is a type of blood cell made in the bone marrow that is involved in allergic reactions and fighting parasitic infections. Mast cells produce histamine, a chemical that can cause itching, sneezing, congestion, swelling, and wheezing. Mast cells can increase along with some non-cancerous (benign) conditions. Sometimes, certain types of cancers may begin from the growth of abnormal mast cells.

There are two general forms of mastocytosis: cutaneous, which involves the skin, and systemic, which involves the entire body.

Cutaneous mastocytosis

Cutaneous mastocytosis is an increase of mast cells in the skin. About 90% of people with mastocytosis have the cutaneous type. Subtypes of cutaneous mastocytosis include:

Urticaria pigmentosa. The most common form of cutaneous mastocytosis is urticaria pigmentosa. Tan or red-brown spots on the skin are the main sign of urticaria pigmentosa. These spots generally appear on the midsection of the body at first and then spread throughout the body. A person with this type of mastocytosis may also have nausea, vomiting, and diarrhea.

Solitary mastocytoma. This type of mastocytosis is more common in infants and children than in adults. It usually forms a large nodule on an arm or leg about 3 centimeters (cm) to 4 cm in diameter. 

Diffuse erythrodermic mastocytosis. Found most commonly in children younger than three years old, diffuse erythrodermic mastocytosis may not be noticeable when a child is born, but it can later show up as a rapid thickening of the skin. Symptoms of systemic mastocytosis (see below) and blisters are also common.

Telangiectasia macularis eruptiva perstans. This type of cutaneous mastocytosis develops mainly in adults. The most common sign is lesions that do not itch and are smaller than those of urticaria pigmentosa (see above).

Systemic mastocytosis

Systemic mastocytosis involves internal organs throughout the body, including the gastrointestinal tract, bone marrow, liver, spleen, and lymph nodes. Lymph nodes are tiny, bean-shaped organs that help fight infection. In 85% of people with systemic mastocytosis, urticaria pigmentosa (see above) develops first. The risk of developing systemic mastocytosis increases with age. Depending on the number of mast cells in an organ, it is classified as either indolent (slow-growing) or aggressive (fast-growing) mastocytosis. As the number of mast cells builds up in an organ, the symptoms of the disease may get worse.

Systemic mastocytosis can become malignant (cancerous). The risk of systemic mastocytosis becoming cancerous is 7% when the disease begins in childhood and as much as 30% in adults. Mast cell leukemia involves the blood, while mast cell sarcoma involves the body’s soft tissues.

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Mastocytosis - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find information about how many people learn they have this disorder each year. To see other pages, use the menu on the side of your screen.

Mastocytosis is a rare disorder, and its true incidence rates are unknown.

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Mastocytosis - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this disorder. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing a disease. Although risk factors often influence the development of mastocytosis, most do not directly cause the disorder. Some people with several risk factors never develop mastocytosis, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors may raise a person’s risk of developing mastocytosis:

Age. Most often, cutaneous mastocytosis begins during infancy and early childhood. The risk of developing mastocytosis also increases during middle age

C-kit receptor mutation. The c-kit receptor is a protein on the surface of some cells that binds to a substance that causes certain types of cells to grow. A mutation of c-kit may cause some types of mastocytosis.

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Mastocytosis - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

People with mastocytosis may experience the following symptoms or signs. Sometimes, people with mastocytosis do not show any of these symptoms. Or, these symptoms may be caused by another medical condition.

General symptoms

  • Hives
  • Red, itchy rash
  • Diarrhea
  • Abdominal pain
  • Fainting
  • Facial flushing, reddening of the face
  • Shortness of breath
  • Wheezing, trouble breathing
  • Psychological changes, for example, irritability or trouble concentrating

Urticaria pigmentosa

  • Tan or red-brown spots on the skin
  • Abdominal pain
  • Nausea
  • Vomiting
  • Diarrhea
  • Headache
  • Increased heart rate
  • Facial flushing
  • Psychological changes

Solitary mastocytoma

  • Raised or flat reddish-brown spot on the skin
  • Hives
  • Itching

Diffuse erythrodermic mastocytosis

  • Thickening of the skin
  • Blisters

Telangiectasia macularis eruptiva perstans

  • Small lesions that do not itch

Systemic mastocytosis

  • Skin lesions
  • Urticaria pigmentosa
  • Facial flushing
  • Itching
  • Nausea
  • Vomiting
  • Diarrhea
  • Abdominal pain
  • Ulcers in the stomach and duodenum (small intestine)
  • Headache
  • Lightheadedness
  • Heart palpitations, an irregular or unusually rapid beating of the heart
  • Bone pain
  • Anemia, a low red blood cell count, which can cause fatigue
  • Psychological changes

Symptoms of systemic mastocytosis can sometimes occur as “attacks,” where more than one symptom appears at the same time. Following an attack, the person may feel tired and lethargic (drowsy, lacking energy).

If you are concerned about one or more of the symptoms or signs on this list, please talk with your doctor or a dermatologist, a doctor who specializes in skin problems. The doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If mastocytosis is diagnosed, relieving symptoms is an important part of your care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Mastocytosis - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find a list of the common tests and procedures that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose a disease and find out its extent. Some tests may also determine which treatments may be the most effective. A biopsy is the only way to make a definitive diagnosis of mastocytosis. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. This list describes options for diagnosing this condition, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of disease suspected
  • Signs and symptoms
  • Previous test results

In addition to a physical examination, the following tests may be used to diagnose mastocytosis:

Blood/urine tests. Tests are done on samples of the patient’s blood and urine that may be able to find high levels of mast cells and histamine. Blood tests can also show how well the liver, kidneys, and other vital organs are working. The blood’s level of an enzyme called tryptase may be higher than normal for people with systemic mastocytosis, which may help distinguish systemic mastocytosis from similar disorders.

Biopsy. Skin biopsies are often used to diagnose mastocytosis. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that mastocytosis is present, but only a biopsy can make a definite diagnosis. The sample removed during the biopsy is analyzed by a pathologist. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

Bone marrow aspiration and biopsy. A sample of the bone marrow helps diagnose systemic mastocytosis. Bone marrow aspiration and biopsy are similar procedures and are often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. The sample(s) are then analyzed by a pathologist. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used.

Molecular testing. Your doctor may recommend running laboratory tests on the mast cells to identify specific genes, proteins, and other factors unique to the mastocytosis. Results of these tests will help decide whether your treatment options include a type of treatment called targeted therapy.

After these diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is mastocytosis, these results will help the doctor identify the type and help plan treatment.

The next section helps explain the different stages of this condition. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.

Mastocytosis - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will learn that because mastocytosis is not a type of cancer there is no standard staging system. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the disease is located, if or where it has spread, and whether it is affecting other parts of the body. There is no standard staging system for mastocytosis. Doctors will review several factors, including the type of mastocytosis, to learn more about the disease and plan treatment.

The next section helps explain the treatment options for this condition. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Mastocytosis - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will learn about the different ways doctors use to treat people with mastocytosis. To see other pages, use the menu on the side of your screen.

This section outlines treatments that are the standard of care (the best proven treatments available) for this specific type of disease. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new approach to treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Your doctor can help you review all treatment options. For more information, visit the Clinical Trials and Latest Research sections.

Treatment overview

The treatment of mastocytosis depends on the symptoms of the disease, its extent, and the person’s overall health. In many cases, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team.

Descriptions of the most common treatment options for mastocytosis are listed below. There is no cure for mastocytosis, although several treatments can be used to relieve symptoms and remove a mastocytoma (tumor). One important treatment for mastocytosis is to avoid anything that may cause the mast cells to release histamine, such as extreme temperatures, alcohol, emotional stress, insect bites, and certain medications.

Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Managing symptoms

An important part of care for mastocytosis is relieving a person’s symptoms. The most common treatments to help relieve the symptoms of mastocytosis are listed below.

Medications. Antihistamines can help relieve symptoms, such as itching, flushing, and other skin reactions. Other medications can help relieve diarrhea and stomach pain. Steroids may be used to reduce the size of skin lesions. Nonsteroidal anti-inflammatory drugs (NSAIDs) should be used with caution, as these medicines may trigger the release of histamine and can cause severe reactions. Often, people being treated for mastocytosis will carry a syringe of epinephrine, a hormone made by the adrenal glands, in case of a severe allergic reaction.

Ultraviolet light. Sometimes, exposing the skin rashes to a source of ultraviolet (UV) light can help relieve symptoms.

Surgery

Surgery may be performed to remove lesions. Many surgeries on the skin can be performed quickly and easily. Learn more about surgery.

Chemotherapy

Chemotherapy is sometimes used if mastocytosis becomes cancerous. Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication, or a hematologist, a doctor who specializes in treating blood disorders.

Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Targeted therapy

Targeted therapy is a treatment that targets the disease’s specific genes, proteins, or the tissue environment unique to mastocytosis that contribute to its growth and survival. This type of treatment blocks the growth of mast cells while limiting damage to healthy cells.

Recent studies show that not all diseases have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors involved in your mastocytosis. As a result, doctors can better match each patient with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them.

Tyrosine kinase inhibitors are a type of targeted therapy. For mastocytosis, the target is the unique protein called the c-kit tyrosine kinase receptor (see the Risk Factors section). Treatment with tyrosine kinase inhibitors, including dasatinib (Sprycel), imatinib (Gleevec), midostaurin (PKC412), and nilotinib (Tasigna), is sometimes considered for patients with a mutation in the c-kit tyrosine kinase receptor. See the Latest Research section for more information. Patients with more advanced systemic mastocytosis should be tested for this genetic mutation. 

Talk with your doctor about possible side effects for a specific targeted therapy and how they can be managed. Learn more about targeted treatments.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which unhealthy bone marrow is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Stem cell transplantation is not used frequently in people with mastocytosis because treatment results are inconsistent and there are significant risks with this treatment approach. Learn more about bone marrow and stem cell transplantation.

Getting care for side effects

Mastocytosis and its treatment often cause side effects. In addition to treatment to manage the condition, an important part of treatment is relieving these side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the disease and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and supportive care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it is addressed as quickly as possible. Learn more about palliative care.

Remission and the chance of recurrence of mastocytosis-related cancer

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED. Recurrent mastocytosis-related cancer is cancer that comes back after treatment. 

A remission can be temporary or permanent. This uncertainty leads to many survivors feeling worried or anxious that the cancer will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the cancer returning. Understanding the risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

Often the treatment plan for a recurrent mastocytosis-related cancer will include the therapies described above, such as surgery and chemotherapy, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Supportive care will also be important to help relieve symptoms and side effects.

People with recurrent cancer often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Recovery from mastocytosis-related cancer is not always possible. If treatment is not successful, the disease may be called advanced or terminal mastocytosis.

This diagnosis is stressful, and this is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced cancer and who are expected to live less than six months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.

Mastocytosis - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat patients with mastocytosis. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to chemotherapy or surgery, and new methods of treatment. Patients who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating mastocytosis. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with mastocytosis.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

For specific topics being studied for mastocytosis, learn more in the Latest Research section.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer or cancer-related condition.

The next section helps explain the areas of research going on today for mastocytosis. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.

Mastocytosis - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about mastocytosis and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about mastocytosis, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

Targeted therapy. As explained in the Treatment Options section, some people with mastocytosis have a mutation of the c-kit tyrosine kinase receptor, which causes mast cell growth. Early results from clinical trials show that the drug imatinib and other tyrosine kinase inhibitors, such as dasatinib and nilotinib, may help treat mastocytosis. In addition, a new drug called midostaurin is also being studied for mastocytosis.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments for mastocytosis in order to improve patients’ comfort and quality of life.

To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases now. Please note this link takes you outside of this guide.

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.

Mastocytosis - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of mastocytosis, but it may help to know that preventing and controlling side effects is a major focus of your health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for mastocytosis are described in detail within the Treatment Options section. Learn more about the most common side effects of mastocytosis and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the length and dosage of treatment(s), and your overall health.

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with mastocytosis. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your medical care

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Mastocytosis - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will read about your medical care after treatment for mastocytosis is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for mastocytosis ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. Follow-up visits will include blood tests and possibly scans or other imaging studies. Normally, follow-up visits are most frequent in the first three years after treatment, but patients are encouraged to have lifelong, follow-up care.

If you have received treatment for a mastocytosis-related cancer, ASCO offers cancer treatment summary forms to help keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

People who received ultraviolet (UV) rays for the treatment of cutaneous mastocytosis should be aware of an increased risk of skin cancer in the future. Follow-up physical examinations and skin evaluations are important in the early diagnosis and prevention of this condition.

Chemotherapy may cause several long-term side effects:

  • People who have received certain drugs may develop lung damage.
  • Heart damage in the form of a weakened heart muscle may occur in people who have received a higher dose of doxorubicin (Adriamycin) or radiation therapy to the chest.
  • Infertility (inability to have children) or early menopause can occur in people who have received high-dose cyclophosphamide (Cytoxan, Neosar) or other chemotherapy. Learn more about fertility concerns and preservation for men and women.
  • Secondary cancers like leukemia are more common in people who received chemotherapy. Secondary cancers are cancers that develop as a result of the treatment for another type of cancer.

People recovering from mastocytosis are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about the next steps to take in survivorship, including making positive lifestyle changes.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.

Mastocytosis - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

  • What type of mastocytosis do I have?
  • Can you explain my pathology report (laboratory test results) to me?
  • Should my mast cells be tested for the c-kit mutation?
  • Are there other skin lesions that should be biopsied?
  • How can I manage the symptoms of mastocytosis?
  • What are my treatment options?
  • What clinical trials are open to me? Where are they located, and how do I find out more about them?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment?
  • What is my prognosis (chance of recovery)?
  • What are the possible short-term and long-term side effects of each treatment?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment and follow-up care?
  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?  
  • Could this treatment affect my sex life? If so, how and for how long?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?
  • If I’m worried about managing the costs related to my medical care, who can help me with these concerns?
  • How long will it take to heal?
  • What is the likelihood that mastocytosis will come back?
  • Are there medications that I should avoid?
  • What follow-up tests will I need, and how often will I need them?
  • What support services are available to me? To my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Mastocytosis - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Mastocytosis. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond. Here are a few sections that may get you started in exploring the rest of Cancer.Net:

This is the end of Cancer.Net’s Guide to Mastocytosis. Use the menu on the side of your screen to select another section to continue reading this guide.