Multiple endocrine neoplasia Type 2 (MEN2) is a cancer syndrome found in men and women that increases the chance for tumors in the body, most frequently in the hormone producing organs of the endocrine system. Often the first signs of MEN2 are high blood pressure, episodes of sweating, diarrhea, itchy skin bumps, high levels of calcium in the blood (hypercalcemia), neck mass, neck pain, choking, and/or shortness of breath.
The tumors may occur in many different locations and may be benign (non-cancerous) or malignant (cancerous). The most frequently developed tumors in MEN2 occur in the thyroid gland with 98% to 100% of individuals affected by medullary thyroid cancer over the course of their lifetime.
MEN 2 is further divided into subtypes that all have a high risk for medullary thyroid cancer, but have some differences in age at tumor development and medical issues including:
MEN 2A- Accounts for 70%-80% of cases of MEN2. Includes early adulthood risk for onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland), and parathyroid adenoma (noncancerous tumor in the parathyroid a gland that makes a hormone that helps control the amount of calcium and phosphorus in the blood). MEN2A can further be divided into 4 subtypes.
FMTC (familial medullary thyroid carcinoma)- Accounts for 10%-20% of MEN2 cases. FMTC is often considered a variant of MEN 2A that usually results in later adulthood onset of medullary thyroid cancer and not pheochromocytoma or other tumors.
MEN 2B- Accounts for around 5% of cases of MEN2. MEN2B often results in early childhood onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland) and nerve cell nodules (mucosal neuromas) on the lips and tongue. Children may also often have distinctive facial features with enlarged lips, ganglioneuromatosis (overgrown nerves) of the intestines, and a tall, thin body type with an abnormally curved spine.
MEN2 can run in families or can occur as the result of a new disease causing gene change in the individual.
Multiple endocrine neoplasia type II can also be called:
multiple endocrine adenomatosis type 2
adenomatosis, familial endocrine type 2
familial endocrine adenomatosis type 2
familial endocrine adenomatosis type II
multiple endocrine neoplasms type 2
MEN 2
MEN type 2
MEN II
MEN type II
However, it also has other names that vary by type.
Other names for MEN2A include:
Pheochromocytoma and amyloid-producing medullary thyroid carcinoma
PTC Syndrome (MEN2A)
Sipple Syndrome (MEN2A)
Familiar Medullary Thyroid Carcinoma
FMTC
MTC1
MEN2B is also referred to as:
MENIIB
Multiple endocrine neoplasia type 3
Mucosal neuroma syndrome
Wagenmann-Froboese syndrome
Neuromata, mucosal with endocrine tumors
It should be noted that there is some controversy about whether FMTC is its own sub-type of MEN2 or a variant of MEN2A. In the most strict definition of FMTC, individuals in the family only have FMTC; no one in the family has a pheochromocytoma or hyperparathyroidism. However, others do not agree. Thus, it is important to keep this in mind when reading about MEN2, MEN2A and FMTC.
Multiple endocrine neoplasia type 2 (MEN2) occurs in about 1 in 35, 000 people. MEN2 is made up of 3 types, MEN2A is the most common form that accounts for 70-80% of MEN2 cases. FMTC (familial medullary thyroid carcinoma) accounts for 10%-20% of MEN2 cases. 2B accounts for about 5 % of all cases of MEN2.
Multiple endocrine neoplasia type 2 is most often called MEN2 or MEN type 2. However, it has 3 sub types, therefore, it may also be called MEN2A or MEN2B or FMTC (familial medullary thyroid carcinoma).
Multiple endocrine neoplasia type 2 (MEN2) happens to people all over the world. However, there have been reports of families in certain part of the world where MEN2 is more commonly found. These areas include Cyprus, Italy, and Denmark.
Frequently Asked Questions About Multiple endocrine neoplasia 2
Who else in my family should have testing for Multiple endocrine neoplasia type 2?
After an individual is diagnosed with Multiple endocrine neoplasia type 2 (MEN2) or a mutation or change is found in the RET gene, other family members are at risk to have MEN2. First-degree relatives (siblings, children, and parents) have a 50% chance to have the same genetic change. Second-degree relatives (nieces/nephews, aunts/uncles, grandparents, grandchildren, and half siblings) have a 25% chance to have the same gene mutation. It is recommended that relatives be informed of their risk. Whether testing is right for them is a personal decision. Also, RET testing is not generally recommended for people under 18 years of age.
Genetic counselors can help explain autosomal dominant inheritance and family members who may be at risk to have MEN2. They can also help identify who may want to consider genetic testing for the RET gene. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Where do I find other people with Multiple endocrine neoplasia type 2?
Other people with Multiple endocrine neoplasia type 2 (MEN2) can be found through support groups. Another way to find other people with MEN2 are through Facebook groups such as the American Multiple Neoplasia Support or Association for Multiple Endocrine Neoplasia Disorders. These groups can be found on Facebook by typing "American Multiple Neoplasia Support" or "Association for Multiple Endocrine Neoplasia Disorders" in the search bar.
Where can I get financial help for Multiple endocrine neoplasia type 2?
The medical cost of multiple endocrine neoplasia type 2 (MEN2) can be significant. Some families lack the resources necessary to provide for a chronically ill family member. There are several organizations that provide financial assistance.
The National Organization for Rare Disorders has links to organizations that can provide financial assistance.
The National Human Genome Research Institute has extensive information on finding financial aid for medical treatment and services.
Where can caregivers of people with Multiple endocrine neoplasia type 2 get support?
Taking care of someone with a long-term or chronic condition can be tiring and challenging and this is no different for parents or other caregivers of people with Multiple endocrine neoplasia type 2 (MEN2). If a caregiver is in need of support, resources are available at the Caregiver Action Network. This organization works to improve the quality of life for people who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Disease specific support groups can also help provide support and advice for caregivers.
What types of doctors will I see for treatment of Multiple endocrine neoplasia 2?
Treatment of Multiple Endocrine neoplasia type 2 requires different types of doctors with special training. There doctors include:
What specialist doctors should I see with Multiple endocrine neoplasia type 2?
Different types of doctors are needed to help manage Multiple endocrine neoplasia, Type 2 (MEN2). They include:
What should I tell the school about my child’s Multiple endocrine neoplasia type 2?
Teachers, particularly physical education teachers and coaches, should understand the symptoms of Multiple endocrine neoplasia type 2 (MEN2) and how your child is doing at the time. Tell your child’s teachers about any medications and the special needs of MEN2. Make sure that the school has updated medical files and explain your expectations if your child gets ill at school. It is important to emphasize that the children with MEN2 disease do not have increased risk for learning disabilities and that MEN2 disease cannot "infect" other children.
For more information about how to talk to your child’s teacher or school about MEN2, please talk to your child’s healthcare providers. It may also be helpful to speak with the support groups for MEN.
What should I tell my pediatrician about Multiple endocrine neoplasia type 2?
When a child has or is at increased risk to have Multiple endocrine neoplasia type 2 (MEN2), their pediatrician and the MEN2 specialists should work together as a team. When working with a new pediatrician, it is crucial to explain the disease as much as possible and encourage him or her to speak to a genetic specialist with any questions. They should understand the possible complications of MEN2, so they can monitor for complications during their regular examinations or any sick visits. There are several useful medical articles that your MEN2 doctor can provide your pediatrician about the symptoms and treatment of MEN2 in children. One such article can be found on the GeneReviews website.
What is the main symptom of Multiple endocrine neoplasia type 2?
Multiple endocrine neoplasia Type 2 (MEN2) is a inherited cancer syndrome found in men and women that increases the chance for tumors in the body, most frequently in the hormone producing organs of the endocrine system. The tumors may occur in many different locations and may be benign (non-cancerous) or malignant (cancerous).
Often the first signs of MEN2 are high blood pressure, episodes of sweating, diarrhea, itchy skin bumps, high levels of calcium in the blood (hypercalcemia), neck mass, neck pain, choking, and/or shortness of breath.
The most frequently developed tumors in MEN2 is cancer in the thyroid gland called medullary thyroid cancer. Symptoms of medullary thyroid cancer often include:
What is Multiple endocrine neoplasia type 2?
Multiple endocrine neoplasia Type 2 (MEN2) is a cancer syndrome found in men and women that increases the chance for tumors in the body, most frequently in the hormone producing organs of the endocrine system. Often the first signs of MEN2 are high blood pressure, episodes of sweating, diarrhea, itchy skin bumps, high levels of calcium in the blood (hypercalcemia), neck mass, neck pain, choking, and/or shortness of breath.
The tumors may occur in many different locations and may be benign (non-cancerous) or malignant (cancerous). The most frequently developed tumors in MEN2 occur in the thyroid gland with 98% to 100% of individuals affected by medullary thyroid cancer over the course of their lifetime.
MEN 2 is further divided into subtypes that all have a high risk for medullary thyroid cancer, but have some differences in age at tumor development and medical issues including:
MEN 2A- Accounts for 70%-80% of cases of MEN2. Includes early adulthood risk for onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland), and parathyroid adenoma (noncancerous tumor in the parathyroid a gland that makes a hormone that helps control the amount of calcium and phosphorus in the blood). MEN2A can further be divided into 4 subtypes.
FMTC (familial medullary thyroid carcinoma)- Accounts for 10%-20% of MEN2 cases. FMTC is often considered a variant of MEN 2A that usually results in later adulthood onset of medullary thyroid cancer and not pheochromocytoma or other tumors.
MEN 2B- Accounts for around 5% of cases of MEN2. MEN2B often results in early childhood onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland) and nerve cell nodules (mucosal neuromas) on the lips and tongue. Children may also often have distinctive facial features with enlarged lips, ganglioneuromatosis (overgrown nerves) of the intestines, and a tall, thin body type with an abnormally curved spine.
MEN2 can run in families or can occur as the result of a new disease causing gene change in the individual.
What is Multiple endocrine neoplasia type 2 most often called by doctors?
Multiple endocrine neoplasia type 2 is most often called MEN2 or MEN type 2. However, it has 3 sub types, therefore, it may also be called MEN2A or MEN2B or FMTC (familial medullary thyroid carcinoma).
What gene change causes Multiple endocrine neoplasia type 2?
Multiple endocrine neoplasia type 2 (MEN2) is caused by mutations in the RET gene. The MEN2 sub-type called familial medullary thyroid carcinoma (FMTC) is mainly caused by mutations in the RET gene but can also be caused by changes in the NTRK1 gene.
If an individual has been diagnosed with any type of MEN2, it can be helpful to be referred to a center of excellence or a healthcare team who specializes in MEN2. Genetic counselors specializing in cancer are also available to answer questions about the genetics of MEN2. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What does the gene for Multiple endocrine neoplasia type 2 do?
Multiple endocrine neoplasia type 2 is caused by mutations or changes in the RET gene.
Genes act as the instructions for the body. We all have two copies of the RET gene. We inherit one copy from our mother and one copy from our father. When working properly, the RET genes help to reduce cancer risk. People with MEN 2 have a gene change (mutation) in one of their RET genes that causes the gene not to work properly. A nonworking copy of the RET gene leads to increased risk for cancer. However, when there is a change in the RET gene, it can lead to cells growing out of control leading to cancer.
Genetic counselors specializing in cancer are available to answer questions about the genetics of MEN2 and the RET gene. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What does it mean to have inherited a variant of unknown significance (VUS) in the gene for Multiple endocrine neoplasia type 2?
The gene related to Multiple endocrine neoplasia type 2 (MEN2) is called the RET gene. Sometimes genetic testing shows a change in the RET called a "variant of unknown significance" or a VUS. This means that a genetic change was found that we do not fully understand. In other words, this genetic change may cause MEN2 or it may be normal variation. We need more data to be sure. A genetic counselor or geneticist can help explain what this result means. Over time, scientists may learn more about variants of unknown significance. If someone has a VUS in the RET gene, they should check with their healthcare provider on an annual basis for updates on the VUS.
A genetic counselor can help you understand the meaning of a VUS. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What does a positive result for Multiple endocrine neoplasia type 2 mean?
A positive genetic test for Multiple endocrine neoplasia type 2 (MEN2) means that the laboratory looked at the DNA and found a disease-causing change or pathogenic variant in the RET gene. This is consistent with having MEN2 and increased risk for specific tumors. However, a positive genetic test result cannot tell a doctor how the course or severity of MEN2 in an individual.
A positive test result also have implications for other family members and testing may be indicated for at-risk family members.
Genetic counselors specializing in cancer are available to answer questions about the genetics of MEN2. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What does a negative genetic test result for Multiple endocrine neoplasia type 2 mean?
A negative genetic test result means that the laboratory analyzed the DNA of an individual and found no genetic changes known to cause Multiple endocrine neoplasia type 2 (MEN2). This result has different implications depending on the situation of the person who was tested.
If the person being tested has a family member with MEN2 with a known mutation in the RET gene and the person being tested was negative for this gene change, it is likely that the person being tested does not have MEN2.
If the person being tested does not have a family member with MEN2 with a known RET gene change, then a negative result is less conclusive. In this scenario, a negative result could mean that the person being tested does not have MEN2. It could also mean that the person being tested could have a gene change which causes MEN2 that was not detected by the testing methodology used. Individuals with clinical features raising the possibility of MEN2 can benefit from evaluation by a medical geneticist or another physician familiar with MEN2 and related conditions, as a diagnosis of MEN2 can be made in some individuals based on their clinical features even without positive genetic test results. A clinical diagnosis of MEN2 can allow for appropriate medical care of the affected person, even without positive genetic test results.
Genetic counselors can help explain your genetic test results for MEN2. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What are the symptoms of Multiple endocrine neoplasia type 2?
Multiple Endocrine Neoplasia type 2 (MEN2) impacts the parts of the body called the endocrine system. The job of the endocrine system is to make hormones. Hormones are chemical messengers that help the different parts of the body communicate with each other. In MEN2, the endocrine organ involved is the thyroid. The name of the cancer that happens in MEN2 is called medullary carcinoma of the thyroid (MTC). Often the first signs of MEN2 are high blood pressure, episodes of sweating, diarrhea, itchy skin bumps, high levels of calcium in the blood (hypercalcemia), neck mass, neck pain, choking, and/or shortness of breath.
The tumors may occur in many different locations and may be benign (non-cancerous) or malignant (cancerous). The most frequently developed tumors in MEN2 occur in the thyroid gland with 98% to 100% of individuals affected by medullary thyroid cancer over the course of their lifetime.
MEN 2 is further divided into subtypes that all have a high risk for medullary thyroid cancer, but have some differences in age at tumor development and medical issues including:
MEN 2A- Accounts for 70%-80% of cases of MEN2. Includes early adulthood risk for onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland), and parathyroid adenoma (noncancerous tumor in the parathyroid a gland that makes a hormone that helps control the amount of calcium and phosphorus in the blood). MEN2A can further be divided into 4 subtypes.
FMTC (familial medullary thyroid carcinoma)- Accounts for 10%-20% of MEN2 cases. FMTC is often considered a variant of MEN 2A that usually results in later adulthood onset of medullary thyroid cancer and not pheochromocytoma or other tumors.
MEN 2B- Accounts for around 5% of cases of MEN2. MEN2B often results in early childhood onset of medullary thyroid cancer, increased risk for pheochromocytoma (rare tumor of adrenal gland) and nerve cell nodules (mucosal neuromas) on the lips and tongue. Children may also often have distinctive facial features with enlarged lips, ganglioneuromatosis (overgrown nerves) of the intestines, and a tall, thin body type with an abnormally curved spine.
What are the special health care needs for individuals with Multiple endocrine neoplasia type 2?
Individuals with Multiple endocrine neoplasia type 2 (MEN2) should not take certain kinds of medications. They include dopamine D2 reception antagonists, beta blockers, monoamine oxidase inhibitors, sympathomimetics, and certain peptide and corticosteroid hormones. Before starting any new medications, it is important for individuals with MEN2 to talk with their doctors who specialize in MEN2 to ensure the risk of each medication is reviewed.
People with MEN2 have a higher chance of cancer. It is important to monitor their health and have lifelong healthy habits. It is important to have regulator physical checkups and screening. Therefore, any cancer can be found as early as possible when the tumors is most treatable.
Other healthy habits to decrease the risk of tumors are:
What are the first steps after a diagnosis of Multiple endocrine neoplasia type 2 is made?
The first steps after diagnosis for multiple endocrine neoplasia type 2 (MEN2) may include surgery to remove tumors, surveillance to determine if additional tumors have occurred, and planning of a detailed medical management plan. Monitoring may include age based blood testing for calcium, parathyroid hormone, thyroid hormones, and gastrin levels and imaging such as an abdominal CT or MRI and head MRI. The National Comprehensive Cancer Network has developed management guidelines for people with neuroendocrine tumors, These guidelines are updated frequently, so please review the current recommendations by visiting the National Comprehensive Cancer Network website. Given the unique challenges in developing a monitoring program for patients with MEN2, it can be beneficial to work with a center of excellence or a healthcare team who specializes in MEN2. Support groups such as American Multiple Endocrine Neoplasia Support group can assist patients in finding these centers.
If you have specific questions about the genetics of MEN2, you can talk to a genetic counselor. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
What age does Multiple endocrine neoplasia 2 generally start?
Multiple endocrine neoplasia type 2 (MEN2) can affect individuals of all ages, although specific MEN2 types have different typical ages of onset. Signs and symptoms of MEN2B usually start earliest with possible tumor appearance in infancy to early childhood. In MEN2A and FMTC, signs and symptoms generally begin in adulthood.
Is there newborn screening for Multiple endocrine neoplasia type II?
Multiple endocrine neoplasia type 2 (MEN2) is not one of the conditions included on newborn screening in the United States. A genetic test for MEN2 may be offered to children within the first decade because there is an increased risk for tumors in children with MEN2B. Genetic counseling and education should accompany genetic testing in minors because of the potential for personal and social concerns.
Genetic counselors specializing in cancer are available to answer questions about testing in children for MEN2 and newborn screening. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Is there more than one test for Multiple endocrine neoplasia type II?
Molecular genetic testing can be used to confirm a diagnosis of Multiple endocrine neoplasia type 2 (MEN2). These tests involve studying the RET gene for changes that cause the disorder. This can include sequence analysis, where a part or sequence of DNA within a gene is examined, or gene-targeted deletion/duplication analysis, where missing or extra regions of DNA are looked for within a specific gene. Molecular genetic testing must be done at specialized laboratories. A genetic counselor can explain testing options and help coordinate testing. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Is there clinical research happening on Multiple endocrine neoplasia type 2?
Clinical research is happening on Multiple endocrine neoplasia type 2 (MEN2). The clinical research can be located by searching the clinical trials database. In the search bar type in Multiple Endocrine Neoplasia type 2 or MEN2.
In addition, support groups may be aware of clinical trials that might happen in the future. One such support group can be reached at their website: http://www.amensupport.org
Is there a treatment for Multiple enocrine neoplasia type 2?
The treatment for Multiple endocrine neoplasia type 2 is surgery to remove the entire thyroid which is called a called total thyroidectomy. In addition, lymph nodes in the neck will also be removed. In individuals with a change (mutation) in the RET gene, the thyroid is usually taken out before cancer occurs. Individuals who have their thyroid removed usually take medication to provide the hormones made by the thyroid.
Pheochromocytomas and parathyroid tumors are removed by surgery when found.
Family members of individuals with MEN2 who have not had genetic testing should have surveillance for endocrine tumors. These maybe tests on blood and or urine. If you have questions about the type of surveillance you should have, talk to you doctor or obtain a referral from your doctor to a center of excellence for the treatment for MEN2.
The National Comprehensive Cancer Network has developed management guidelines for people with neuroendocrine tumors, These guidelines are updated frequently, so please review the current recommendations by visiting the National Comprehensive Cancer Network website. Given the unique challenges in developing a monitoring program for patients with MEN2, it can be beneficial to work with a center of excellence or a healthcare team who specializes in MEN2. Support groups such as American Multiple Endocrine Neoplasia Support group can assist patients in finding these centers.
If you have specific questions about the genetics of MEN2, you can talk to a genetic counselor. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Is there a cure for Multiple endocrine neoplasia type 2?
A cure currently does not exist for Multiple endocrine neoplasia type 2 (MEN2). However, early detection of signs and before they become serious issues.
It is best for individuals with MEN2 to have all regular check-ups with MEN2 doctors and specialists. The affected glands, even when treated, can be affected again and new tumors can grow. Monitoring by doctors can ensure changes are addressed quickly. Monitoring may include imaging tests and blood tests. Individuals with MEN2 should consider discussing a monitoring plan with a doctor or specialists, so they know the types of tests and how often they need to be performed.
Is prenatal testing available for Multiple endocrine neoplasia type 2?
Prenatal testing and preimplantation genetic diagnosis (PGD) are available for Multiple endocrine neoplasia type 2 (MEN2) if one of the parents is known to carry a RET gene mutation.
PGD is performed on embryos produced through IVF. PGD allows for parents to only implant embryos into the mother’s uterus that do not have the RET gene mutation.
In prenatal testing, the baby’s DNA is tested during the pregnancy to determine whether the baby has the RET gene mutation. The procedures available to obtain the baby’s DNA during a pregnancy include chorionic villus sampling (CVS) or amniocentesis.
If you have questions about PGD or prenatal testing for MEN2, contact your doctor and ask for a referral to a genetic counselor. Genetic counselors can help explain prenatal genetic testing for MEN2. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Is MEN2 found more frequently in a particular country?
Multiple endocrine neoplasia type 2 (MEN2) happens to people all over the world. However, there have been reports of families in certain part of the world where MEN2 is more commonly found. These areas include Cyprus, Italy, and Denmark.
I have Multiple endocrine neoplasia type 2. How do I know if I am depressed?
Everybody has times when they feel sad or low. However, in some individuals the "blues" can be more severe and last longer than usual. This is called depression. Depression is an illness that involves the body, mood, and thoughts. It affects the way a person eats and sleeps, the way one feels about oneself, and the way one thinks about things. Depression is not a sign of personal weakness or a condition that can be willed or wished away. People with a depressive illness cannot merely "pull themselves together" and get better. Depression often interferes with normal functioning and causes pain and suffering not only to those who have a disorder, but also to those who care about them. Signs that suggest depression include:
I have Multiple endocrine neoplasia type 2? Will my children have it?
Typically all humans have two copies of the RET gene. Children inherit one copy of the RET gene from their mother and one copy from our father. People with Multiple Endocrine Neoplasia type 2 (MEN2) have a gene change (mutation) in one of their RET genes that causes the gene not to work properly. If a parent has Multiple Endocrine Neoplasia type 2, there is a 50% change that each of his or her children will have Multiple endocrine neoplasia Type 2. This is called autosomal dominant inheritance.
When an individual has Multiple Endocrine Neoplasia type 2, usually they have inherited the RET gene from one of their parents. Therefore, one of the parents has MEN2. However, there is a very small chance that an individual with MEN2 has the condition due to a new mutation. This means the mutation occurred just in that individual. It is called a spontaneous or de novo mutation.
A genetic counselor can explain the genetic inheritance and if your child can have the condition without a RET gene mutation. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
I am living with Multiple endocrine neoplasia type 2. What signs indicate that I am anxious?
Many people feel anxious before exams, presentations, or first dates. Individuals affected by anxiety disorders have constant, unremitting worry and fears about everyday activities. Signs and symptoms of an anxiety disorder include:
I am living with Multiple endocrine neoplasia type 2. What are panic attacks?
Panic attacks are repeated episodes of intense fear that strike often and without warning. Symptoms of Panic attacks include any of the anxiety symptoms listed in the questions about anxiety plus:
How often is Multiple endocrine neoplasia type 2 not inherited?
It is possible for a genetic change to occur randomly for an individual during development. This is called a de novo change because the mutation was not inherited from a parent. De novo mutations usually result in the first person in the family being affected with the genetic mutation. When a random genetic change occurs in the RET gene, is causes MEN2. About 5% of cases of MEN2 are due to de novo mutations. Therefore, 95% of the time, MEN2 is inherited from a parent.
How is Multiple endocrine neoplasia type 2 inherited?
Multiple endocrine neoplasia type 2 (MEN2) happens because of changes or mutations in the RET gene. Genes act as the instructions for the body. We all have two copies of the RET gene: one copy inherited from our mother and one copy inherited from our father. The RET gene is a tumor suppressor gene, which means it usually prevents cells from growing and dividing too fast or in an uncontrolled way. When working properly, the RET gene helps to reduce cancer risk. People with MEN2 have a gene change (mutation) in one of their RET gene genes that causes the gene not to work properly. A nonworking copy of the RET gene leads to increased risk for cancer.
If a parent has MEN2 there is a 50% chance that each of his or her children will inherit the nonworking RET gene and also have MEN2. This is called autosomal dominant inheritance. Both males and females can be affected with MEN2.
Some people with MEN2 have inherited a nonworking RET gene from their parents while other times the gene can mutate or change in that individual for the first time. When a mutation occurs in the gene for the first time it is called a spontaneous mutation or a de novo mutation.
A genetic counselor can help explain MEN2, gene mutations, the RET gene, and inheritance patterns. In the US, a genetic counselor can be located by visiting the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
How do I tell my children they have Multiple endocrine neoplasia type 2?
When a parent feels that their child is old enough and mature enough to understand the basics of Multiple endocrine neoplasia type 2 (MEN2), they should set aside a time and a place for discussion. The parents should be open to any questions and be honest about the answers. After the initial discussion parents can ask their children to tell them about MEN2 to make sure they understand and are involved in the conversation. This conversation should occur over several years as the children and their understanding increases. Support groups, such as American Multiple Endocrine Neoplasia Support (http://www.amensupport.org), may be able to provide information and suggestions on talking to your child about MEN2.
Genetic counselors can help explain MEN2 to children and teens. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
How do I get tested for Multiple endocrine neoplasia type 2?
A doctor may suspect a diagnosis of Multiple endocrine neoplasia type 2 (MEN2) because of the presence of certain tumors that are associated with the disorder. To learn more about the chance for an individual to have MEN2, a doctor will do a complete physical examination, review family and medical history, and order lab tests and imaging such as an ultrasound, magnetic resonance imaging (MRI), or CT scan. A doctor may recommend genetic counseling and genetic testing. Genetic testing involves studying the RET gene for disease causing changes (variants or mutations). At-risk members of the family who do not have symptoms can receive genetic testing to see whether they have the disorder.
Genetic counselors specializing in cancer are also available to answer questions about the genetics, diagnosis, and testing for MEN2. In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
How do I get ready for a genetic test for Multiple endocrine neoplasia type 2?
There are no specific requirements or suggestions for an individual to do to prepare for a genetic test for multiple endocrine neoplasia type 2 (MEN2). However, it is important to understand how what the testing may find. A genetic counselor who can explain the test, the benefits and limitations as well as the meaning of the possible results.
In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
How do I find clinical research on Multiple endocrine neoplasia type 2?
You can find clinical research for Multiple Endocrine neoplasia type 2 (MEN2) by searching the clinical trials database. In the search bar type in Multiple Endocrine Neoplasia type 2 or MEN2.
In addition, support groups may be aware of clinical trials that might happen in the future. One such support group can be reached at their website: http://www.amensupport.org
How do I find a center of excellence in Multiple endocrine neoplasia type 2?
Ask your doctor for a referral to a center of excellence or a healthcare team who specializes in MEN2. You can also find a center of excellence near you by looking at the patient support group organizations, which can be found in the "Organization" section. For example, on the American Multiple Endocrine Neoplasia Support website, centers of excellence are listed in the resource section.
How common is Multiple endocrine neoplasia type 2?
Multiple endocrine neoplasia type 2 (MEN2) occurs in about 1 in 35, 000 people. MEN2 is made up of 3 types, MEN2A is the most common form that accounts for 70-80% of MEN2 cases. FMTC (familial medullary thyroid carcinoma) accounts for 10%-20% of MEN2 cases. 2B accounts for about 5 % of all cases of MEN2.
How can I move to a different city and still get good Multiple endocrine neoplasia type 2 care?
Whenever a person is considering a move to a new city or location, there are several factors to consider. Are there better jobs in the new location? Is the cost of living more or less than a current home?
When individuals have Multiple endocrine neoplasia type 2 (MEN2), one of the most important things to learn about is how they will get MEN2 expert care in the new location. The easiest way to figure this out it to talk with their current MEN2 expert and/or contact one of the MEN2 support groups. There is also a list of MEN2 centers of excellence on the American Multiple Endocrine Neoplasia Support website .
Depending on an individual’s specific needs and symptoms, it may be crucial to figure out if there is a good endocrinologists, gastroenterologist, medical oncologists, surgical oncologists, histopathologists/ pathologists, radiologists, clinical geneticists and genetic counselors, that new place that is comfortable working with MEN2. It may be helpful to reach out to other patients with MEN2 in the new area to figure out how things would be different than current care. MEN2 shouldn’t prevent someone from moving to a new place, but it does mean some research is needed to find out the best ways to get the best care.
It may be helpful to think about the questions/issues to ask a new doctor. Such questions/issues include:
Does Multiple endocrine neoplasia type 2 occur the same way in everyone?
All individuals with Multiple endocrine neoplasia type 2 (MEN2) have a very high chance to have cancer of the thyroid, also referred to as medullary thyroid carcinoma (MTC). However, each type of MEN2 is a bit different in timing of tumor onset and symptoms. Symptoms can also be different from person to person, even within the same family. For example, children with MEN2B often have distinctive facial features with enlarged lips, ganglioneuromatosis (overgrown nerves) of the intestines, nerve cell nodules (mucosal neuromas) on the lips and tongue, and a tall, thin body type with an abnormally curved spine while those with MEN2A do not. Also, the tumor risks can also vary as seen listed below the chances to develop specific tumors by type:
Do insurance companies cover testing for MEN2?
Most health insurance companies will cover most genetic testing costs. Your doctor or genetic counselor might need to write a letter to explain why testing is needed. You may want to check with the various support groups for Multiple endocrine neoplasia type 2 (MEN2) to inquire if any free genetic testing programs are available.
Many people are worried that the results of the genetic test will affect the chances of getting health insurance. The federal law known as Genetic Information Nondiscrimination Act (GINA) prohibits health insurers and employers from using your genetic information, which includes the following:
Are there things to avoid if you have Multiple endocrine neoplasia type 2?
There are certain medications to avoid if you have Multiple endocrine neoplasia type 2 (MEN2). Some should broadly be avoided and others relate to specific tumors. For example, Trulicity, a medication that help to control blood sugar, should not be used by all individuals with MEN2.
While individuals with a pheochromocytoma should avoid:
Are there other names for Multiple endocrine neoplasia type II?
Multiple endocrine neoplasia type II can also be called:
Are there good support groups for Multiple endocrine neoplasia type 2 outside the United States?
The support groups for Multiple endocrine neoplasia, Type 2 outside the United States include:
Are there good support groups for Multiple endocrine neoplasia type 2 in the United States?
The support groups for Multiple endocrine neoplasia type 2 (MEN2), include:
Are there different types of Multiple endocrine neoplasia type II?
Multiple endocrine neoplasia type 2 (MEN2) belongs to a group of conditions called Multiple endocrine neoplasia. The other types are called Multiple endocrine neoplasia type 1 (MEN1) and Multiple endocrine neoplasia type 4 (MEN4). Each type of Multiple endocrine neoplasia has distinct signs and symptoms, although MEN4 has similar symptom pattern to MEN1. All types of MENs are due to mutations in different genes.
Multiple Endocrine Neoplasia type 2 (MEN2) has 3 types, each of which has particular symptoms and risk of particular tumor:
Are genetic test results for Multiple endocrine neoplasia type 2 disease private?
Some people may feel concerned about maintaining the privacy of their genetic information. Your doctor isn’t allowed to tell anyone that you have had a genetic test or its results without your consent; however, your health insurance company can request your medical records if you give them permission. Consider discussing privacy concerns with your genetic counselor or doctor.
In the US, a genetic counselor can be located at the Find a Genetic Counselor website on the National Society of Genetic Counselor website.
Any other diseases that look a lot like Multiple endocrine neoplasia type 2?
Other conditions both genetic and isolated can resemble Multiple endocrine neoplasia type 2 (MEN2). These conditions include: