Adenoid Cystic Carcinoma - Introduction
ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Adenoid Cystic Carcinoma. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.
Adenoid cystic carcinoma (AdCC) is a rare form of adenocarcinoma. Adenocarcinoma is a broad term describing any cancer that begins in the glands or glandular tissue that lines some organs. Most often, AdCC is found in the salivary glands.
About the salivary glands
Salivary glands contain tissue that produce saliva. Saliva is important to the body because it:
-
Helps keep the mouth moist
-
Contains enzymes that begin breaking down food
-
Helps prevent infections of the mouth and throat
There are clusters of salivary glands in several places in the head and neck. Salivary glands are divided into 2 groups based on their size:
Minor salivary glands. The minor salivary glands are small clusters of salivary glans that can be found in these parts of the head and neck:
-
Palate: roof of the mouth
-
Nasopharynx: an air passageway at the upper part of the throat and behind the nose
-
Tongue base: the back third of the tongue
-
Mucosal lining of the mouth: the inner lining of the mouth; glands located here produce mucus
-
Larynx: the voice box
-
Trachea: the windpipe
Major salivary glands. There are 3 pairs of major salivary glands:
-
Parotid glands: the largest salivary gland found on either side of the face in front of each ear
-
Submandibular glands: found under the jawbone
-
Sublingual glands: located in the bottom of the mouth under the tongue
About adenoid cystic carcinoma
Cancer begins when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.
In general, AdCC is a cancerous tumor that begins in glands found in the head and neck region. In rare cases, it can form in other parts of the body, including in the brain, breast, lung, or the uterus. Most often, AdCC starts in the salivary glands found in the lips, mouth, tongue, nose, throat, vocal cords, and part of the esophagus and windpipe. This part of the body is known as the "upper aerodigestive tract." AdCC is sometimes classified as a disease of the minor salivary gland, even though it may begin at other locations.
Besides being classified based on where the cancer begins, AdCC is also described based on what the tumor cells look like under a microscope. This is called the histologic variations of the tumor. The tumor can be classified as:
-
cylindroma: a tumor with tube-shaped cells
-
cribriform: a tumor with gaps between the cells, giving it the appearance of Swiss cheese
-
solid AdCC
When AdCC spreads, it tends to spread along nerves, known as perineural invasion, or through the bloodstream. It spreads to the lymph nodes in about 5% to 10% of cases. If AdCC spreads to another part of the body beyond the lymph nodes, it is called metastatic cancer. The most common place for AdCC metastases is the lung.
AdCC is known for having long periods of no growth, also called indolence, followed by growth spurts. But AdCC can behave aggressively in some people. This makes the course of AdCC unpredictable.
This guide covers AdCC. Learn more about other types of salivary gland cancers and other head and neck cancers in separate guides on this website.
The next section in this guide is Statistics . It helps explain the number of people who are diagnosed with AdCC and general survival rates. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Statistics
ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with adenoid cystic carcinoma (AdCC) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.
How many people are diagnosed with AdCC?
AdCC is an uncommon type of cancer. Each year, an estimated 1,300 people in the United States are diagnosed with AdCC. Worldwide, an estimated 200,000 people have this disease. About 60% are women. AdCC can occur in adults and children.
What is the survival rate for AdCC?
There are different types of statistics that can help doctors evaluate a person’s chance of recovery from AdCC. These are called survival statistics. It is important to remember that statistics on the survival rates for people with AdCC are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
One study found that the 5-year survival rate for people in the United States with AdCC is approximately 80%. The 10-year survival rate is about 61%, and the 15-year survival rate is approximately 29%.
The survival rates for AdCC vary based on several factors. These include the stage of cancer, a person’s age and general health, and how well the treatment plan works.
Late recurrences are common among people diagnosed with AdCC. A late recurrence is cancer that has come back many years after treatment has finished. About half of the time, recurrences of AdCC are diagnosed at the metastatic stage, meaning it has spread to other parts of the body. However, tumor growth for AdCC is often slow, and people may live a long time with metastatic disease.
Experts measure survival rate statistics for AdCC cancer every 5 years. This means the estimate may not reflect the results of advancements in how AdCC is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics .
Statistics adapted from the websites of the Adenoid Cystic Carcinoma Research Foundation, the National Organization for Rare Disorders, and the Oral Cancer Foundation. Additional statistics are from Jang S, Patel PN, Kimple RJ, McCulloch TM. Clinical Outcomes and Prognostic Factors of Adenoid Cystic Carcinoma of the Head and Neck. Anticancer Res. 2017 Jun;37(6):3045-3052. (All sources accessed February 2023.)
The next section in this guide is Risk Factors . It describes the factors that may increase the chance of developing AdCC. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Risk Factors
ON THIS PAGE: You will find out more about the factors that increase the chance of developing adenoid cystic carcinoma (AdCC). Use the menu to see other pages.
A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. Knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.
The cause(s) of AdCC is not known at this time, and risk factors for this type of cancer have not been proven consistently with scientific research. There is some evidence that a specific gene called the p53 tumor suppressor gene is somehow inactivated in advanced and aggressive forms of AdCC. The p53 gene limits cell growth by monitoring the rate at which cells divide. Research is ongoing to learn more about this.
The next section in this guide is Symptoms and Signs . It explains what changes or medical problems AdCC can cause. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Symptoms and Signs
ON THIS PAGE: You will find out more about changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.
People with adenoid cystic carcinoma (AdCC) may experience the following symptoms or signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like by taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, people with AdCC do not have any of these changes. Or, the cause of a symptom or sign may be a medical condition that is not cancer.
The initial symptoms of AdCC depend on the location of the tumor. Early lesions of the salivary glands may appear as painless, usually slow-growing masses underneath the normal lining of the mouth or skin of the face. Because there are many salivary glands under the mucosal lining of the mouth, throat, and sinuses, lumps in these locations could be from this type of tumor. Other symptoms may include:
-
A lump on the roof of the mouth, under the tongue, or in the bottom of the mouth
-
An abnormal area on the lining of the mouth
-
Numbness of the upper jaw, palate, face, or tongue
-
Difficulty swallowing
-
Hoarseness
-
Dull pain
-
A bump or nodule in front of the ear or underneath the jaw
-
Paralysis of a facial nerve
If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you have been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.
If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. Managing symptoms may be called "palliative care" or "supportive care." It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.
The next section in this guide is Diagnosis . It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Diagnosis
ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the problem. Use the menu to see other pages.
Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.
For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.
How adenoid cystic carcinoma is treated
There are many tests used for diagnosing adenoid cystic carcinoma (AdCC). Not all tests described here will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:
-
The type of cancer suspected
-
Your signs and symptoms
-
Your age and general health
-
The results of earlier medical tests
In addition to a physical examination, the following tests may be used to diagnose AdCC:
Biopsy.
A
biopsy
is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. The pathology of the salivary gland may be complicated, even among experienced pathologists. This is why it is important that the tissue is examined by a head and neck pathologist who is experienced in diagnosing salivary gland diseases.
The biopsy can be performed in different ways: using a fine needle biopsy or by surgically removing part or all of the tumor. A fine needle biopsy is also called fine needle aspiration or FNA. This procedure uses a thin needle to remove fluid and cells from the suspicious area. An AdCC tumor is characterized by a distinctive pattern in which bundles of epithelial cells surround and/or infiltrate ducts or glandular structures within the organ. Frequently, diagnosis of AdCC is made after the surgical removal of a tumor first thought to be benign.
Imaging tests. Imaging techniques, primarily magnetic resonance imaging (MRI) or computed tomography (CT) scan, are useful to help doctors see the size and location of the tumor before surgery. A positron emission tomography (PET) scan may also be used to determine if the tumor has spread to other parts of the body. Each scan is described in more detail below.
-
Magnetic resonance imaging (MRI).
An
MRI
uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow. An MRI is very useful for identifying perineural spread of AdCC. Perineural spread is growth of the tumor along nerve branches.
-
Computed tomography (CT or CAT scan).
A
CT scan
takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.
- Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan . However, you may hear your doctor refer to this procedure just as a PET scan. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. However, the amount of radiation in the substance is too low to be harmful. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.
After diagnostic tests are done, your doctor will review the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer. This is called staging.
The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Stages
ON THIS PAGE: You will learn about how doctors describe an adenoid cystic carcinoma (AdCC) tumor’s growth or spread. This is called the stage. Use the menu to see other pages.
What is cancer staging?
Staging is a way of describing where a cancerous tumor is located, if or where it has spread, and whether it is affecting other parts of the body.
Doctors use diagnostic tests to find out the cancer’s stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment, and it can help predict a patient’s prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.
This page provides detailed information about the system used to find the stage of AdCC and the stage groups for AdCC, such as stage II or stage IV.
-
TNM staging system
-
Stage groups for AdCC
TNM staging system
AdCC is staged using the TNM system for salivary gland tumors. If the tumor originates from a major salivary gland, the staging system for a major salivary gland tumor is used. If the tumor originates from a minor salivary gland, the TNM staging system used for the location or primary site is used. For example, a AdCC that arises from a salivary gland in the palate will be staged according to the TNM staging system for the oral cavity. Doctors use the results from diagnostic tests and scans to answer these questions:
-
Tumor (T): How large is the primary tumor? Where is it located?
-
Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?
-
Metastasis (M): Has the cancer spread to other parts of the body? If so, where and how much?
The results are combined to determine the stage of cancer for each person. There are 5 stages: stage 0 (zero) and stages I through IV (1 through 4). The stage provides a common way of describing the cancer so doctors can work together to plan the best treatments.
Staging can be clinical or pathological. Clinical staging is based on the results of tests done before surgery, which may include physical examinations and imaging tests. Pathological staging is based on what is found during surgery, including biopsy. In general, pathological staging provides the most information to determine a patient’s prognosis.
Here are more details on each part of the TNM system:
Tumor (T)
Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the size and location of the tumor. Tumor size is measured in centimeters (cm). A centimeter is roughly equal to the width of a standard pen or pencil.
Stage may also be divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.
TX: The primary tumor cannot be evaluated.
T0 (T zero): No evidence of a tumor is found.
T1: The tumor is small, 2 centimeters (cm) at its widest dimension. It is also noninvasive, which means it has not grown outside the area where it began.
T2: The tumor is larger, between 2 cm and 4 cm, but noninvasive.
T3: The tumor is larger than 4 cm, but not larger than 6 cm, and has spread beyond the salivary gland. However, the tumor does not affect the seventh nerve, which is the facial nerve that controls such expressions as smiles or frowns.
T4a: The tumor has invaded the skin, jawbone, ear canal, and/or facial nerve.
T4b: The tumor has invaded the skull base and/or the nearby bones and/or encases the arteries.
Node (N)
The “N” in the TNM staging system is for lymph nodes, the small, bean-shaped organs help fight infection. For AdCC, lymph nodes near the head and neck are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.
NX: The neck has undergone an intervention that prevents the evaluation of lymph nodes.
N0: There is no evidence of cancer in the regional nodes.
N1: The cancer has spread to a single node on the same side as the primary tumor, and the cancer found in the node is 3 cm or smaller.
N2a: The cancer has spread to a single lymph node on the same side as the primary tumor and is larger than 3 cm, but not larger than 6 cm.
N2b: The cancer has spread to more than one lymph node on the same side as the primary tumor, and no tumor measures larger than 6 cm.
N2c: The cancer has spread to more than one lymph node on either side of the body, and no tumor measures larger than 6 cm.
N3: The cancer found in the lymph nodes is larger than 6 cm.
Metastasis (M)
The "M" in the TNM system describes cancer that has spread to other parts of the body, called metastasis.
MX: Distant metastasis cannot be evaluated.
M0: The cancer has not spread to other parts of the body.
M1: The cancer has spread to other parts of the body.
Return to top
Stage groups for AdCC
Doctors assign the stage of the cancer by combining the T, N, and M ( see above ) classifications.
Stage I: This stage describes a noninvasive tumor (T1 or T2) with no spread to lymph nodes (N0) and no distant metastasis (M0).
Stage II: This stage describes an invasive tumor (T3) with no spread to lymph nodes (N0) or distant metastasis (M0).
Stage III: This stage describes a smaller tumor (T1 or T2) that has spread to regional lymph nodes (N1) but shows no sign of metastasis (M0).
Stage IVA: This stage describes any invasive tumor (T4a) that either has no lymph node involvement (N0) or has spread to only a single, same-sided lymph node (N1), but with no metastasis (M0). It is also used to describe a T3 tumor with one-sided nodal involvement (N1) but no metastasis (M0), or any tumor (any T) with extensive nodal involvement (N2) but no metastasis (M0).
Stage IVB: This stage describes any cancer (any T) with more extensive spread to lymph nodes (N2 or N3) and no metastasis (M0).
Stage IVC: This stage describes any cancer (any T, any N) with distant metastasis (M1).
Recurrent: Recurrent cancer is cancer has come back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.
Return to top
Used with permission of the American College of Surgeons, Chicago, Illinois. The original and primary source for this information is the AJCC Cancer Staging Manual, Eighth Edition (2017) published by Springer International Publishing.
Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Types of Treatment
ON THIS PAGE: You will learn about the different types of treatments doctors use for people with adenoid cystic carcinoma (AdCC). Use the menu to see other pages.
This section explains the types of treatments, also known as therapies, that are the standard of care for AdCC. “Standard of care” means the best treatments known. When making treatment plan decisions, you are encouraged to discuss with your doctor whether clinical trials are an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn through clinical trials whether a new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option for all stages of cancer. Your doctor can help you consider all your treatment options. Learn more about clinical trials in the About Clinical Trials and Latest Research sections of this guide.
How adenoid cystic carcinoma is treated
In cancer care, 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 . Cancer care teams include a variety of health care professionals, including physicians, physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.
People with AdCC may work with physicians and other health care professionals in different specialties. These include:
-
Medical oncologist: a doctor who specializes in treating cancer with medication
-
Radiation oncologist: a doctor who specializes in giving radiation therapy to treat cancer
-
Surgical oncologist: a doctor who specializes in treating cancer using surgery
-
Maxillofacial prosthodontist: a specialist who performs restorative surgery in the head and neck areas
-
Otolaryngologist: a doctor who specializes in the ear, nose, and throat
-
Plastic, or reconstructive, surgeon: a surgeon who specializes in the reconstruction of facial and body tissue and the improvement in a person's appearance
-
Oncologic dentist or oral oncologist: dentists experienced in caring for people with head and neck cancer
-
Audiologist: a health professional who specializes in hearing and balance problems
-
Physical therapist: a health professional who addresses functional challenges that may develop as a result of cancer and cancer treatment
-
Speech pathologist: a specialist who helps people use muscles in the mouth and throat
-
Mental health providers: health professionals who diagnose and treat mental health problems, such as a psychiatrist or a psychologist
It is extremely important that the cancer care team creates a comprehensive treatment plan before treatment begins, and people may need to be seen by several specialists before a treatment plan is fully developed.
Although eliminating the cancer is the primary goal of treatment, preserving the function of the nearby nerves, organs, and tissues is also very important. When planning treatment, doctors consider how it might affect a person’s quality of life, such as how a person feels, looks, talks, eats, and breathes.
Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient's preferences and overall health. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. These types of talks are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your care. Learn more about making treatment decisions .
Common types of treatments used for AdCC are described below, including surgery, radiation therapy, and systemic therapies using medication. Your care plan may also include treatment for your symptoms and side effects, an important part of cancer care.
-
Surgery
-
External-beam radiation therapy
-
Neutron and proton radiation therapy
-
Physical, emotional, and social effects of cancer
-
Metastatic adenoid cystic carcinoma
-
Chemotherapy for metastatic AdCC
-
Targeted therapy for metastatic AdCC
-
Remission and the chance of recurrence
-
If treatment does not work
Surgery
Surgery is the removal of the tumor and some surrounding healthy tissue during an operation.
Surgical removal of the tumor is the best treatment for AdCC as long as it can be done safely and is likely to have a good outcome. During surgery, the surgeon will remove the tumor and an area of healthy tissue surrounding it, called a margin. Surgery is considered the most successful if the margin removed during surgery is found to be “clean,” which means there is a minimum of 2 millimeters (mm) of cancer-free tissue surrounding the tumor. The extent of surgery will vary depending on the location of the tumor and the area of the body involved.
Because AdCC may frequently spread along nerves, the surgeon should examine and determine whether nerves are involved. Major nerves that are not involved should be identified and spared during surgery. Smaller branches of nerves should be analyzed to determine if the cancer has spread to the space surrounding the nerve. For a later-stage tumor or one that significantly involves nerves, the surgeon should remove as much of the tumor as possible while sparing the organs and functions of the face. These are difficult decisions to make. Talk with your doctor about how to find a surgeon with the necessary level of expertise, experience, and training to perform this type of surgery.
Side effects from surgery vary depending upon the surgical site. For example, surgery of the parotid salivary gland may damage facial nerves, which can cause the muscles in the face to droop. Sometimes, a facial nerve graft or other reconstructive procedure (plastic surgery) may be recommended to restore the function of the facial muscles after surgery to remove the tumor. Learn more about the basics of surgical reconstruction .
Before surgery, talk with your health care team about the possible side effects from the specific surgery you will have and whether reconstruction will be needed. Learn more about the basics of cancer surgery .
Additional cancer treatment may be needed after surgery, called adjuvant therapy. Occasionally, it is not possible to remove AdCC using surgery. This type of tumor is called inoperable or unresectable. In these cases, your doctor will recommend other treatment options, such as radiation therapy or cancer medication (see below).
Return to top
External-beam radiation therapy
Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells.
The most common type of radiation therapy is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period.
Radiation therapy is particularly effective for AdCC as an adjuvant therapy by helping to eliminate any microscopic cancer cells that may remain in the body after surgery. Adjuvant therapy is cancer treatment given after surgery. In general, radiation therapy is not used before surgery for this disease. That is because many surgeons feel that the surgical wound heals better if radiation therapy is not given prior to surgery.
A specific method of external-beam radiation therapy, known as intensity modulated radiation therapy (IMRT), allows for more effective doses of radiation therapy to be delivered while reducing the damage to healthy cells and causing fewer side effects.
Since radiation therapy is targeted to a specific area, the side effects will depend on where the radiation therapy was given. Generally, during head and neck treatments, people may experience a sore mouth and/or throat that can cause pain and difficulty in swallowing. They may also have a skin reaction or burn that causes some pain over time.
Before beginning radiation therapy for any head and neck cancer, people should receive a thorough examination from an oncologic dentist. Since radiation therapy can cause tooth decay, damaged teeth may need to be removed. Often, tooth decay can be prevented with proper treatment from a dentist before beginning treatment. Learn more about dental and oral health during cancer treatment .
People should also receive an evaluation from a speech pathologist with experience treating people with head and neck cancer. The speech pathologist can teach exercises that will help maintain the strength and flexibility of the muscles used during speech and swallowing. If side effects are affecting a person's nutrition or weight, talk with a registered dietitian nutritionist (RDN) about coping with eating challenges .
Long-term side effects of radiation therapy vary with the sites involved, but they may include permanent loss of saliva, causing dryness of the mouth and deterioration of the teeth. In some cases, a drug to stimulate the parotid salivary gland and increase or restore saliva levels may be given. Currently, amifostine (Ethyol), a drug to protect tissues during radiation therapy, is being studied. Scarring or fibrosis, which is the hardening or thickening of the skin and muscles, may develop several months to years after radiation therapy and lead to problems with wound healing, neck stiffness, and trouble swallowing.
Other long-term effects that can develop include accelerated narrowing of the carotid arteries, which supply the head and neck with blood. There may also be lower thyroid gland functioning, called hypothyroidism, which can be managed with thyroid hormone replacement medication. Learn more about the basics of
radiation therapy
.
Return to top
Neutron and proton radiation therapy
Neutron therapy is a different form of radiation therapy that uses neutrons rather than x-rays. Compared with conventional radiation therapy, neutrons can deliver 20 times to 100 times more energy along their path length, causing much greater damage to the cancer cells. Neutron radiation therapy has been tested on many different types of tumors, and its treatment for salivary gland tumors and AdCC has shown the greatest benefit.
In certain instances, neutron radiation therapy may be the first treatment for AdCC, particularly in areas of the body where it is difficult to perform surgery. However, neutron therapy carries more severe side effects than traditional radiation therapy, such as severe sore mouth and/or throat and difficulty swallowing; therefore, it is generally used more often with people with an inoperable tumor or if the tumor recurs. Medication to help increase saliva production and protect tissues may be given during this treatment.
Neutrons cannot be used to treat large areas of the body if there is widespread metastatic disease. Neutrons can be used to treat a single metastasis that is causing problems, such as pain, blockage of part of the lung, or pressure on the spinal cord.
Proton therapy, also called proton beam therapy, is a type of external-beam radiation therapy that uses protons rather than x-rays. At high energy, protons can destroy cancer cells. The advantage of proton therapy is the ability to better control where the radiation is delivered, greatly reducing the damage to normal healthy tissues that surround the tumor. However, proton therapy has not been extensively researched for use in AdCC. Learn more about the basics of proton therapy .
Neutron and proton therapy are not widely available. Talk with your doctor for information about the availability of these treatments if recommended for you.
Return to top
Physical, emotional, and social effects of cancer
Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your care that is included along with treatments intended to slow, stop, or eliminate the cancer.
Palliative care focuses on improving how you feel during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.
Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. You may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.
Before treatment begins, talk with your doctor about the goals of each treatment in the treatment plan being recommended. You should also talk about the possible side effects of the specific treatment plan and palliative care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.
During treatment, your health care team may ask you to answer questions about your symptoms and side effects and to describe each problem. Be sure to tell the health care team if you are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.
Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.
Return to top
Metastatic adenoid cystic carcinoma
If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Close observation may be recommended, especially if the disease is slow growing and causing no symptoms. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.
Your treatment plan may include a combination of surgery and radiation therapy. Palliative care will also be important to help relieve symptoms and side effects.
For most people, a diagnosis of metastatic cancer is very stressful and difficult to bear. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of your health care team. It may also be helpful to talk with other patients, such as through a support group or other peer support program.
Return to top
Therapies using medication to treat metastatic AdCC
The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept pin a single part of the body.
This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.
Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications, be sure to ask your health care team about how to safely store and handle them.
The types of medications used for AdCC include:
-
Chemotherapy
-
Targeted therapy
Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.
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.
It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your prescriptions by using searchable drug databases .
Chemotherapy for metastatic AdCC
Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period. A patient may receive 1 drug at a time or combinations of different drugs given at the same time. Learn more about the basics of chemotherapy and preparing for treatment .
In general, chemotherapy is usually not used for AdCC, as this type of cancer appears to be less responsive to chemotherapy than other types of cancer. Various combinations of chemotherapy have been tried without much success. Researchers are looking at the combination of chemotherapy and radiation therapy, but this is considered experimental for AdCC.
Targeted therapy for metastatic AdCC
Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.
Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of
targeted treatments
.
For AdCC, clinical trials are researching the use of targeted therapy drugs called tyrosine kinase inhibitors (TKIs), such as lenvatinib (Lenvima), or axitinib (Inlyta), taken as oral medication. This has shown to be a beneficial approach for a small proportion of people with AdCC. Because of the general rarity of AdCC and that current chemotherapy is of limited benefit, it is recommended that people with AdCC ask about
clinical trials
to treat this disease.
It may also be beneficial to get a second opinion regarding AdCC treatment options. Learn more about
seeking a second opinion
.
Return to top
Remission and the chance of recurrence
A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.
A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your doctor about the possibility of the cancer returning. Understanding your 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 .
If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place, meaning it is a local recurrence, or nearby, which is a regional recurrence. If it comes back in another place, it is a distant recurrence.
If a recurrence happens, a new cycle of testing will begin again to learn as much as possible about it. After this testing is done, you and your doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, such as surgery and radiation therapy, but they may be used in a different combination or given at a different pace. Your doctor may suggest clinical trials that are studying new ways to treat recurrent AdCC. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.
People with recurrent cancer sometimes experience emotions such as disbelief or fear. You are encouraged to talk with your health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence .
Return to top
If treatment does not work
Recovery from cancer is not always possible. If the cancer cannot be cured or controlled, the disease may be called advanced or terminal.
This diagnosis is stressful, and for some people, advanced cancer is difficult to discuss. However, it is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help. Making sure a person is physically comfortable, free from pain, and emotionally supported is extremely important.
People who have advanced cancer and who are expected to live less than 6 months may want to consider 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 talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option 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 .
Return to top
The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - About Clinical Trials
ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.
What are clinical trials?
Doctors and scientists are always looking for better ways to care for people with adenoid cystic carcinoma (AdCC). To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.
Clinical trials are used for all types and stages of AdCC. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.
People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.
Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects.
Deciding to join a clinical trial
People decide to participate in clinical trials for many reasons. For some, 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. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating AdCC. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with AdCC.
Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials .
Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When used, placebos are usually combined with standard treatment in most cancer clinical trials. Study participants will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.
Patient safety and informed consent
To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:
-
Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.
-
List all of the risks of the new treatment, which may or may not be different than the risks of standard treatment.
-
Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.
-
Describe the purposes of the clinical trial and what researchers are trying to learn.
Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.
People who participate in a clinical trial may stop participating at any time for personal or medical reasons. 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 people 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 they choose to leave the clinical trial before it ends.
Finding a clinical trial
Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for AdCC, learn more in the Latest Research section.
Cancer.Net offers a lot of information about cancer 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 .
In addition, you can find a free video-based educational program about cancer clinical trials, located outside of this guide.
The next section in this guide is Latest Research . It explains areas of scientific research for AdCC. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Latest Research
ON THIS PAGE:
You will read about the scientific research being done to learn more about this type of cancer and how to treat it. Use the menu to see other pages.
Doctors are working to learn more about adenoid cystic carcinoma (AdCC), 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 best diagnostic and treatment options for you.
-
Targeted therapy. As explained in Types of Treatment , targeted therapy is being developed and tested in clinical trials that may be useful as a treatment approach for AdCC. In particular, research continues about anti-angiogenesis therapy (see next bullet), as well as to determine the molecular mechanism that regulates the spread of AdCC along the nerves and specifically looking into NOTCH1 gene mutations. These gene mutations may help doctors understand how the disease will respond to targeted therapy. Learn more about the basics of targeted treatments .
-
Anti-angiogenesis/TKIs. A specific type of targeted therapy called anti-angiogenesis therapy is an active area of research for AdCC. It is focused on stopping angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients delivered by blood vessels to grow and spread, the goal of anti-angiogenesis therapies is to “starve” the tumor. Research is ongoing on how this type of therapy, which are often given in the form of specific angiogenesis inhibitors called tyrosine kinase inhibitors (TKIs), may benefit people with AdCC. TKIs being studied for AdCC include the drugs axitinib (Inlyta) and lenvatinib (Lenvima). Learn more about the basics of angiogenesis and cancer .
-
Pathology for diagnosis. Doctors are looking at new ways to better diagnose this cancer. This will help doctors to provide more specific treatment plans based on what they learn. Researchers are looking at the rearrangement of the gene MYP as well as immunophenotyping testing for p63 and p40. These help to show whether a tumor is AdCC or another type of cancer called basal cell adenocarcinoma.
-
Chemotherapy. Several clinical trials are examining the effects of newer chemotherapeutic drugs alone, or in combination with other drugs, in the control of metastatic or locally recurrent AdCC.
-
Palliative care/supportive care . Clinical trials are underway to find better ways of reducing symptoms and side effects of current AdCC treatments to improve comfort and quality of life for patients.
Looking for More About the Latest Research?
If you would like more information about the latest areas of research in AdCC, explore these related items that take you outside of this guide:
-
To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases .
-
Visit the Cancer.Net Blog to learn about a study on a TKI for AdCC discussed at a recent scientific meeting .
-
Visit the website of Conquer Cancer, the ASCO Foundation to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.
The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Coping with Treatment
ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. Use the menu to see other pages.
Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people do not experience the same side effects even when they are given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.
As you prepare to start cancer treatment, it is normal to fear treatment-related side effects . It may help to know that your health care team will work to prevent and relieve side effects. This part of cancer treatment is called palliative care or supportive care. It is an important part of your treatment plan, regardless of your age or the stage of disease.
Coping with physical side effects
Common physical side effects from each treatment option for adenoid cystic carcinoma (AdCC) are described in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them . Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.
Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.
You may find it helpful to keep track of your side effects so it is easier to talk about any changes to your health care team. Learn more about why tracking side effects is helpful .
Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects . Treating long-term side effects and late effects is an important part of survivorship care. This includes changes to your sexual health . Learn more by reading the Follow-up Care section of this guide or talking with your doctor.
Coping with emotional and social effects
You can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, or anger, or managing your stress level. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.
You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.
Coping with the costs of cancer care
Cancer treatment can be expensive. It may be a source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost of medical care stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.
Coping with barriers to care
Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health , such as where a person lives and whether they have access to food and health care. Cancer disparities and more often negatively affect racial and ethnic minorities , people with fewer financial resources , sexual and gender minorities (LGBTQ+) , adolescent and young adult populations , older adults , and people who live in rural areas or other underserved communities .
If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people .
Talking with your health care team about side effects
Before starting treatment, talk with your doctor about possible side effects. Ask:
-
Which side effects are most likely?
-
When are they likely to happen?
-
What can we do to prevent or relieve them?
-
When and who should we call about side effects?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.
Caring for a loved one with cancer
Family members and friends often play an important role in taking care of a person with AdCC. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves .
Caregivers may have a range of responsibilities on a daily or as-needed basis, including:
-
Providing support and encouragement
-
Talking with the health care team
-
Giving medications
-
Helping manage symptoms and side effects
-
Coordinating medical appointments
-
Providing a ride to and from appointments
-
Assisting with meals
-
Helping with household chores
-
Handling insurance and billing issues
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.
Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish .
Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
-
Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.
-
ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to help patients record how pain affects them. The free booklet is available as a PDF, so it is easy to print.
-
ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression , constipation , diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.
The next section in this guide is Follow-up Care . It explains the importance of checkups after cancer treatment is finished. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Follow-Up Care
ON THIS PAGE: You will read about your medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.
Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.
Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. People should have regular follow-ups with their doctor to monitor the effects of treatment and to check for a recurrence or distant metastases, which may occur even years after successful primary treatment. There is no known way to prevent recurrence of adenoid cystic carcinoma (AdCC). A secondary cancer is rare after AdCC.
Cancer rehabilitation may be recommended after AdCC treatment, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. For instance, people treated with surgery may need rehabilitative services to regain physical function and flexibility. Treatments to the head and neck can affect swallowing and cause pain. These symptoms can be treated with rehabilitative therapy and, in most cases, get better gradually over time. Learn more about cancer rehabilitation.
Follow-up care by an oncologic dentist may be needed after radiation therapy. Sometimes, dental care may be given by a prosthodontist if major surgery to the mouth or jaw has taken place during treatment. A prosthodontist is a dental specialist with additional training and certification in the restoration and replacement of broken teeth with crowns, bridges, and removable prosthetics, such as dentures.
Some people may experience anxiety and depression following treatment. Most cancer centers have support groups that can help people cope, as well as offer counseling and other therapies.
Learn more about the next steps to take in survivorship , including making positive lifestyle changes .
Learn more about the importance of follow-up care .
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress .
Managing long-term and late side effects
Most people expect to have side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years after treatment has ended. Long-term and late effects can include both physical and emotional changes.
Talk with your doctor about your risk of developing such side effects based on your diagnosis, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.
Keeping personal health records
You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the cancer treatment you received and develop a survivorship care plan when treatment is completed.
This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their primary care doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.
If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with them, and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.
The next section in this guide is Survivorship . It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Survivorship
ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to see other pages.
What is survivorship?
The word “survivorship” is complicated because it means different things to different people. Common definitions include:
-
Having no signs of cancer after finishing treatment.
-
Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person's life.
For some, even the term “survivorship” does not feel right, and they prefer to use different language to describe and define their experience. Sometimes extended treatment will be used for months or years to manage or control cancer. Living with cancer indefinitely is not easy, and the health care team can help you manage the challenges that come with it . Everyone has to find their own path to name and navigate the changes and challenges that are the results of their cancer diagnosis and treatment.
Survivors may experience a mixture of feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life. Feelings of fear and anxiety may still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.
Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health and fertility concerns, and financial and workplace issues.
Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:
-
Understanding the challenge you are facing
-
Thinking through solutions
-
Asking for and allowing the support of others
-
Feeling comfortable with the course of action you choose
Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where you received treatment.
A new perspective on your health
For many people, survivorship serves as a strong motivator to make lifestyle changes.
People recovering from AdCC are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices .
It is important to have recommended medical checkups and tests (see
Follow-up Care
) to take care of your health.
Talk with your health care team to develop a survivorship care plan that is best for your needs.
Changing role of caregivers
Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.
However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving .
Looking for More Survivorship Resources?
For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:
-
ASCO Answers Cancer Survivorship Guide : Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.
-
Survivorship Resources : Cancer.Net offers information and resources to help survivors cope, including specific sections for children , teens and young adults , and people over age 65 . There is also a main section on survivorship for people of all ages.
The next section offers Questions to Ask the Health Care Team to help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Questions to Ask the Doctor
ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.
Talking often with your health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer 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 a digital list and other interactive tools to manage your care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.
Questions to ask after getting a diagnosis
-
Where exactly is the tumor located?
-
Can you describe the stage of the cancer? What does this mean?
-
Is it possible to predict its future behavior?
-
Can you explain my pathology report, or laboratory test results, to me?
-
Did a pathologist with experience diagnosing salivary disease review my biopsy?
Questions to ask my surgeon
-
How often do you see patients with adenoid cystic carcinoma?
-
How often do you do this type of surgery?
-
What complications or problems have your patients experienced?
-
How long do you expect the surgery to take?
-
What can I expect during my recovery?
-
Who should I contact about any side effects I experience? And how soon?
-
What are the possible long-term or late effects of having this surgery?
-
When will we know if I need another type of cancer treatment after surgery?
Questions to ask about choosing a treatment plan
-
What treatment plan do you recommend? Why?
-
What clinical trials are available for me? Where are they located, and how do I find out more about them?
-
What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?
-
Who will be part of my health care team, and what does each member do?
How much experience do they have treating adenoid cystic carcinoma (AdCC)W?
-
Who will be leading my overall treatment?
Questions to ask about managing side effects
-
What are the possible side effects of this treatment, both in the short term and the long term?
-
Will there be changes to my appearance? How? For how long? Will I need reconstructive surgery or other procedures?
-
Will there be problems relating to saliva production or eating? If so, when? For how long?
-
Should I talk with an oncologic dentist before treatment begins?
-
Should I meet with a speech pathologist before treatment begins?
-
How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
-
If I am worried about managing the costs of cancer care, who can help me?
-
How can I keep myself as healthy as possible during treatment?
-
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 cancer treatment begins?
-
If I have questions or problems, who should I call?
Questions to ask about planning follow-up care
-
What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?
-
What long-term side effects or late effects are possible based on the cancer treatment I received?
-
What follow-up tests will I need, and how often will those tests be needed?
-
How do I get a treatment summary and survivorship care plan to keep in my personal records?
-
Who will be leading my follow-up care?
-
What survivorship support services are available to me? To my family?
The next section in this guide is Additional Resources . It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.
Adenoid Cystic Carcinoma - Additional Resources
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 Adenoid Cystic Carcinoma. Use the menu to go back and see other pages.
Cancer.Net includes many other sections about the medical and emotional aspects of cancer, 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 links to help you explore other parts of Cancer.Net:
-
Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology.
-
Learn what medical phrases and terms used in cancer care and treatment mean.
-
Read more about the first steps to take when you are diagnosed with cancer .
-
Find out more about clinical trials as a treatment option.
-
Get information about managing the financial costs of cancer care.
-
Learn more about coping with the emotions that cancer can bring, including those within a family or a relationship.
-
Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for people with this type of cancer.
-
Explore what to do when you finish active treatment .
-
Watch Cancer.Net videos with ASCO experts explaining the basics of cancer treatment, side effects, survivorship, clinical trials, caregiving, and more.
-
To find a range of information and insights from different voices on timely cancer topics, visit the Cancer.Net Blog .
This is the end of Cancer.Net’s Guide to Adenoid Cystic Carcinoma. Use the menu to choose a different section to read in this guide.
