Treatment FAQ

what treatment for paraganglioma with no symptoms

by Kaylie Armstrong Published 3 years ago Updated 2 years ago
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Many paragangliomas do not require immediate treatment. Active Surveillance If you have a small tumor that isn’t causing symptoms, your doctor may recommend periodic MRI imaging and physical exams without other interventions. Radiation Therapy A form of radiation therapy called stereotactic radio surgery or CyberKnife may be recommended.

Radiation therapy uses high-energy beams, such as X-rays and protons, to control tumor growth. Radiation therapy might be recommended if the paraganglioma can't be removed completely with surgery. It can also be used to relieve pain caused by a paraganglioma that spreads to other parts of the body.Jan 11, 2022

Full Answer

How do you treat paraganglioma tumors?

 · Treatment options include: Treatments to control hormones produced by the tumor. If your paraganglioma produces excess hormones, you may need treatments to reduce hormone levels ... Surgery. Surgery is used to remove the paraganglioma. Even if the paraganglioma can't be removed completely, your ...

Should I talk to my doctor about my paraganglioma symptoms?

Less common symptoms of pheochromocytoma include: Being much paler than you usually are. Nausea and/or vomiting. Diarrhea. Constipation. Elevated blood glucose levels ( hyperglycemia ). An extreme drop in blood pressure upon standing suddenly ( orthostatic hypotension ). Unexplained weight loss.

Is paraganglioma in the head and neck curable?

5 rows · If possible, the treatment of choice for the condition is paraganglioma surgery, either open or ...

What is the best test for paraganglioma?

A combination of medicine, surgery, and radiation may be used to treat your paraganglioma. Your doctors will recommend their approach based on its type (benign or malignant) and where the tumor is located. Surgery. Paragangliomas are typically removed completely through surgery. In rare cases, a paraganglioma tumor can release hormones after surgery.

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What is the treatment for paraganglioma?

Surgery is the main form of treatment for paragangliomas. During the surgery to remove the tumor, your surgeon will check the surrounding tissue and lymph nodes to see if the tumor has spread. If it has, your surgeon will remove the affected tissue(s) as well, if possible.

How long can you live with a paraganglioma?

Patients with a small paraganglioma that has not spread to other parts of the body have a five-year survival rate of about 95%. Patients with paraganglioma that has grown back (recurred) or spread to other parts of the body have a five-year survival rate between 34% and 60%.

What kind of doctor treats paraganglioma?

A surgical oncologist is a doctor who specializes in cancer surgery. When it is possible, completely removing the entire tumor is the standard first treatment. For people with a head and neck paraganglioma that does not produce catecholamines, “watchful waiting” may be recommended instead.

Should you biopsy a paraganglioma?

However, a tumor suspected to be a pheochromocytoma or paraganglioma should not have a biopsy, unless it is absolutely necessary to confirm a diagnosis. A biopsy of these tumors can cause a serious and even life-threatening release of catecholamines.

Can paraganglioma shrink?

If your paraganglioma has spread, your doctor may recommend chemotherapy to help shrink the tumors. If your paraganglioma produces excess hormones, you'll receive medications to control the hormone levels before undergoing chemotherapy. Targeted drug therapy.

Is paraganglioma curable?

There are currently no cures for cancerous paraganglioma. However, existing treatment options may reduce the tumors and prolong survival.

Is paraganglioma a terminal?

Paraganglioma of the filum terminal/cauda equina is a rare slow growing tumor which originates from the ectopic sympathetic neurons. Surgically, total excision may be difficult for this well demarcated tumor surrounded by couple of rootlets but is usually possible in nearly all cases.

What does paraganglioma feel like?

Some of most common symptoms are pain, hoarseness, fainting (syncope), difficulty swallowing (dysphagia), eye problems (Horner syndrome), and paralysis of the tongue. Cervical paragangliomas are slow-growing tumors that can cause palsy and spread into the skull base.

Do paragangliomas come back?

People treated for a pheochromocytoma or paraganglioma need lifelong follow-up care. This is important because pheochromocytomas and paragangliomas can recur years after initial treatment. This care may include regular physical examinations, medical tests, or both.

What is paraganglioma syndrome?

Hereditary paraganglioma-pheochromocytoma syndrome is a condition in which tumors develop in structures called paraganglia. Paraganglia are bundles of cells of the peripheral nervous system (the nerves outside the brain and spinal cord). A tumor that develops in the paraganglia is called a paraganglioma.

Can a pheochromocytoma be missed on a CT scan?

Pheochromocytomas appear on scintigrams as focal increased concentrations of radioactivity in the adrenal medulla but also in ectopic adrenergic tissue or metastases (Fig. 5). Paragangliomas can easily be missed on CT and MRI scans.

What does elevated chromogranin A mean?

An increased Chromogranin A level in a person with symptoms may indicate the presence of a tumor, but it is not specific for the type of tumor or its location. In order to diagnose the condition, the tumor itself must be located, biopsied, and examined by a pathologist.

Are paragangliomas fatal?

Paraganglioma are found in 2 out of every million people each year and is the cause of high blood pressure in less than 0.2% of people with high blood pressure. However, because paraganglioma release adrenaline in uncontrolled bursts, they can cause serious health problems like stroke, heart attacks, and even death.

How long does it take for a paraganglioma to grow?

14, 17 The variation in the growth rate of growing paragangliomas is remarkable; we estimated a Td between 0.6–21.5 years. This observation was made in malignant tumors as well and can be explained in part by the influence of tumor size on growth rate.

Do paragangliomas come back?

People treated for a pheochromocytoma or paraganglioma need lifelong follow-up care. This is important because pheochromocytomas and paragangliomas can recur years after initial treatment. This care may include regular physical examinations, medical tests, or both.

How long can you live with a carotid body tumor?

The mean survival of the complete group was 26.40 years after diagnosis, whereas the mean expected survival was 28.02 years. The average loss of life expectancy is therefore 1.62 years. Separately analyzed, patients with carotid body tumors lost 4.33 years, which is explained by the surgical mortalities.

Symptoms and Causes

Signs and symptoms of paraganglioma happen when the tumor releases too much adrenaline or noradrenaline into your blood. However, some paraganglioma tumors don’t make extra adrenaline or noradrenaline and don’t cause symptoms (are asymptomatic). Common symptoms of paraganglioma include episodes of:

Diagnosis and Tests

Since paraganglioma is a rare tumor and is sometimes asymptomatic, it can be difficult to diagnose. Healthcare providers sometimes find paragangliomas when they order a test or procedure for another reason.

Management and Treatment

Treatment options for paraganglioma depend on several factors, including:

Prevention

Unfortunately, you can’t prevent developing a paraganglioma. However, if you’re at risk for developing a paraganglioma due to certain inherited syndromes and genes, genetic counseling can help screen for paraganglioma and potentially catch it in its early phases.

Living With

If you’ve been diagnosed with paraganglioma and experience concerning symptoms, contact your healthcare provider.

Can paraganglioma be treated?

Paragangliomas, if detected early, can be successfully treated and managed in the vast majority of cases. If possible, the treatment of choice for the condition is paraganglioma surgery, either open or laparoscopic.

Is paraganglioma metastatic?

This figure shows where paraganglioma can be found. Paraganglioma in the head and neck are less likely to be metastatic than tumors in the chest, abdomen and pelvis. Paragangliomas, if detected early, can be successfully treated and managed in the vast majority of cases.

Is paraganglioma a slow growing tumor?

Paraganglioma (păr′ə-găng′glē-ō′mə) is a rare, slow-growing tumor that is closely related to pheochromocytoma. It originates in the parasympathetic or sympathetic nervous system. They occur in both men and women equally, and they affect every race of people.

When does paraganglioma peak?

They can occur at any age, but the peak incidence occurs in the third to fifth decade in life. Just like pheochromocytoma, paraganglioma is also characterized by the presence of an excess amount of hormones called catecholamines, which include norepinephrine (noradrenaline), epinephrine (adrenaline), and dopamine.

What hormones are involved in paraganglioma?

Just like pheochromocytoma, paraganglioma is also characterized by the presence of an excess amount of hormones called catecholamines, which include norepinephrine (noradrenaline), epinephrine (adrenaline), and dopamine. It is these hormones that lead to persistent or episodic high blood pressure and other symptoms.

How old do you have to be to get paraganglioma?

Paraganglioma can occur at any age, but most commonly affects people between the ages of 20 and 50. While very rare, the illness often causes a range of symptoms that when recognized can help with diagnosis. Many of these symptoms can be caused by multiple other conditions as well.

Can high blood pressure cause paraganglioma?

It’s important to get a prompt diagnosis. Although high blood pressure is a primary sign of a paraganglioma, most people with high blood pressure don’t have a paraganglioma, and not all patients with a paraganglioma have hypertension.

How to diagnose paragangliomas?

Imaging scans can help us diagnose paragangliomas of all types. At Mount Sinai, we typically use these diagnostic test: 1 Computed tomography scans helps us see whether the tumor has moved into any of the nearby bony structures including the petrous bone, temporal bone, and bones of the head and neck. 2 Magnetic resonance imaging is the best diagnostic test for paragangliomas. It helps us see how big they are and whether the blood vessels have moved into adjacent structures and other vascular areas. 3 Angiography demonstrates the vascularity of paragangliomas, venous drainage, and movement into vascular structures such as the jugular vein or the sigmoid sinus.

What are the symptoms of paragangliomas?

The symptoms may include headaches, hypertension or high blood pressure, palpitations, excessive sweating, and anxiety.

Is paraganglioma a tumor?

They are rarely if ever cancerous. Almost half of all paragangliomas appear in the bone on the side of the head/skull (temporal bone). These tumors are relatively simple and frequently associated with other neurological tumors that develop in embryos, such as chemodectomas and neurocristopathic tumors. At Mount Sinai, we take a multispecialty ...

Can a paraganglioma cause palsy?

Cervical paragangliomas are slow-growing tumors that can cause palsy ...

What nerve is involved in paragangliomas?

When the tumor extends beyond the jugular foramen, it may involve the 12th cranial nerve, which can produce paralysis and/or weakness in your tongue. Secretory paragangliomas canoccur in up to one in eight patients and may involve the release of catecholamines.

What nerves can cause paralysis?

Vagal paragangliomas can cause paralysis to the lower cranial nerves (including the 10th cranial nerve, which can cause paralysis of the diaphragm), 12th cranial nerve paralysis (with paralysis of the tongue), problems in swallowing, and problems with raising your shoulder.

Can you have a genetic test for paraganglioma?

Genetic testing may be recommended by a genetic counselor for patients who: Have a personal or family history of traits linked with inherited pheochromocytoma or paraganglioma syndrome. Have tumors in both adrenal glands. Have more than one tumor in one adrenal gland.

Is paraganglioma the same as pheochromocytoma?

Pheochromocytoma and paraganglioma are rare tumors that come from the same type of tissue. Pheochromocytoma is a rare tumor that forms in the adrenal medulla (the center of the adrenal gland). Paragangliomas form outside the adrenal gland. Certain inherited disorders and changes in certain genes increase the risk of pheochromocy toma ...

What is the difference between paraganglioma and pheochromocytoma?

Pheochromocytoma and paraganglioma are rare tumors that come from the same type of tissue. Paragangliomas form in nerve tissue in the adrenal glands and near certain blood vessels and nerves. Paragangliomas that form in the adrenal glands are called pheochromocytomas. Paragangliomas that form outside the adrenal glands are called extra-adrenal ...

Can pheochromocytoma be detected?

Signs and symptoms of pheochromocytoma and paraganglioma may occur at any time or be brought on by certain events. Tests that examine the blood and urine are used to detect (find) and diagnose pheochromocytoma and paraganglioma.

What is the term for paragangliomas that form outside the adrenal glands?

Paragangliomas that form outside the adrenal glands are called extra-adrenal paragangliomas. In this summary, extra-adrenal paragangliomas are called paragangliomas. Pheochromocytomas and paragangliomas may be benign (not cancer) or malignant (cancer).

What is a pheochromocytoma?

Pheochromocytoma is a rare tumor of the adrenal medulla. Usually, pheochromocytoma affects one adrenal gland, but it may affect both adrenal glands. Sometimes there is more than one tumor in one adrenal gland. The adrenal glands make important hormones called catecholamines.

How to remove paraganglioma?

Surgery: Once paraganglioma is diagnosed, you may have surgery to remove the tumor. Sometimes surgery is not an option, in which case, your doctor will discuss other options with you. Radiation therapy: Radiation therapy can be used to slow the tumors from growing and to help relieve symptoms.

What tests are done to check for paraganglioma?

Lab Tests: If you have symptoms of paraganglioma, your doctor will order lab tests of your urine and blood to check your hormone levels. Imaging: Your doctor will use imaging scans such as MRI, CT, and PET to look at where the tumor is and how big it is.

What is paraganglioma tumor?

Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands . The adrenal glands are important for making hormones that control many functions in the body and are located on top ...

Can paraganglioma cause shaking?

Some people with paraganglioma have symptoms, but others don’t. Symptoms can include: • High blood pressure. • Fast heartbeat. • Sweating. • Headache. • Shaking or tremors. Lab Tests: If you have symptoms of paraganglioma, your doctor will order lab tests of your urine and blood to check your hormone levels.

Can paraganglioma be inherited?

Yes, paraganglioma can run in families, but not always. Some of these inherited cases may be associated with a genetic condition, such as Multiple Endoc rine Neoplasia Types 2a and 2b, Von Hippel-Lindau Syndrome, and Neurofibromatosis type 1.

How long does a paraganglioma patient live?

Patients with a small paraganglioma that has not spread to other parts of the body have a five-year survival rate of about 95%. Patients with paraganglioma that has grown back (recurred) or spread to other parts of the body have a five-year survival rate between 34% and 60%.

Where is paraganglioma located?

Paraganglioma is a type of neuroendocrine tumor that forms near certain blood vessels and nerves outside of the adrenal glands. The adrenal glands are important for making hormones that control many functions in the body and are located on top of the kidneys.

Can paraganglioma be treated with surgery?

We all know that surgery is the single recommendable treatment to cure the condition of paraganglioma. If you leave it untreated, it leads to life-threatening or severe damage to your brain. In some cases, untreated paraganglioma progresses to reach a point, where you fail to overcome your condition even with surgical treatment.

What are the symptoms of paraganglioma?

Stomach or chest pain. High blood glucose or sugar levels. Symptoms in Paraganglioma patients take place whenever the tumor releases adrenaline hormones in excessive amounts in their bloodstream. A few people even experience such symptoms multiple times in one day, while others have on a weekly or monthly basis.

What happens if you leave paraganglioma untreated?

If you leave it untreated, it leads to life-threatening or severe damage to your brain. In some cases, untreated paraganglioma progresses to reach a point, where you fail to overcome your condition even with surgical treatment. (5)

Where does paraganglioma take place?

Paraganglioma belongs to the category of a tumor, which takes place from an individual’s peripheral nervous system. Here, the peripheral nervous system implies the part of one’s nervous system that remains outside of the spinal cord and brain.

Can paraganglioma spread to other parts of the body?

If you leave your Paraganglioma untreated, you may experience several adverse conditions, including a severe form of damage to your brain. On the other hand, the untreated tumor of this type may spread to other body parts to become a cancerous disease. Hence, we recommend you visit a doctor once you experience certain groups ...

Can paraganglioma cause high blood pressure?

Persistent high blood pressure or its various episodes, which are difficult to control is the common symptom of Paraganglioma. You may experience a few of the additional problems with uncontrollable hypertension if you have Paraganglioma, such as rapid heartbeat rate, headache, and heavy sweating issue.

How often do you experience paraganglioma symptoms?

A few people even experience such symptoms multiple times in one day, while others have on a weekly or monthly basis.

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