Salivary gland cancer is a rare cancer. Most tumors that grow in these glands are not cancerous (they’re benign).
But if you’ve just been diagnosed with a salivary gland cancer, you’re probably more interested in learning more about it and how to fight it, not so much in how often it happens.
Like other head & neck cancers, salivary gland cancer isn’t just one disease. You have many different salivary glands throughout your mouth, throat and neck. Cancer can start in any of them.
It usually starts in the glands right in front of your ear, called the parotid gland. These are also the biggest of the glands.
Wherever it starts, symptoms and treatments are usually similar. But there can be differences, like whether surgery is an option or which chemotherapy drug to use.
Your doctor can help you understand your options and make a decision that’s right for you. But getting a cancer diagnosis is stressful, and you may not understand or even remember everything your doctor says the first time.
Doing your own research can help you get a better handle on your disease. Then you’ll know more about what kinds of questions to ask. And you’ll be able to better understand your doctor’s answers.
We’ve found what we believe are easy to understand resources to help you get started. If you decide you want to find more information on your own, we have a few research tips [LINK] to help you evaluate other sites you find.
Salivary Gland Cancer Overviews
Overviews are a great way to start understanding your diagnosis. These guides touch briefly on everything from symptoms and causes to tests and treatments. These are some we think are easy to understand, even if you aren’t good with medical stuff.
Salivary gland tumors: This very simple overview from MedlinePlus talks about both benign and cancerous tumors. It links to more information about tests, treatments and more, for when you’re ready to learn more.
Salivary gland cancer (Mayo Clinic): This overview mentions the different kinds of salivary cancers and suggests questions to ask your doctor about your specific cancer. It also offers advice for coping with fatigue from radiation therapy.
Salivary Gland Cancer: This guide from the American Cancer Society offers more detailed information that’s still easy to understand. Each treatment option has its own section. And there’s several more sections on how your life may change during and after treatment.
Salivary Gland Cancer Treatment (PDQ®): This overview, from the National Cancer Institute, includes information on the stages of salivary gland cancer and your treatment options at each stage.
Organizations Devoted to Salivary Gland Cancer
Salivary cancer is rare, and so are organizations devoted specifically to it. But that doesn’t mean nobody cares about it.
Since salivary gland cancer falls in the oral cancer and head & neck cancer groups, organizations devoted to these cancer groups also care about you. We list some for you at:
Adenoid Cystic Carcinoma Organization International is dedicated to a specific kind of salivary gland cancer, Adenoid Cystic Carcinoma (ACC). This cancer is technically a tumor of glands that secrete various liquids into the body (called secretory glands). But it’s often grouped specifically with the salivary gland tumors, because that’s where it grows most often. This organization works to create a community of ACC patients, supporters and researchers around the world.
Adenoid Cystic Carcinoma Research Foundation also focuses on ACC. It supports research into better understanding and treatments for this cancer. You’ll find information on the various treatment options on the website.
Research into Salivary Gland Cancer
As you might expect, there’s less research into rare cancer than others. That doesn’t mean researchers don’t care, but it’s hard to study something that happens rarely. And it’s hard to find patients for clinical trials.
Even so, there are ongoing clinical trials. If you think you might like to be a part of a trial, your doctor can help you figure out if you qualify for any open ones.
Here are some sites where you can start looking to see what’s open now:
ClincalTrials.gov: This database includes studies funded by the government and private industry. Using different keywords can bring up different results. Try starting with one of these:
A neoplasm is an abnormal growth or tumor. It’s not necessarily cancer, but the term is one you can use when searching for cancer information.
In all these searches, you can click on “Modify this search” to narrow the results by things like study type, location, age group and more.
NCI Clinical Trials Search: This listing is from the NCI and also includes both government and industry-sponsored trials. If you prefer only one or the other, you can refine the search to choose specific sponsors.
Forums and Support Groups for Salivary Gland Cancer
Family and friends are an important source of support. But they may not really understand how you’re feeling and what you’re going through. Connecting with others who are or have been there can help you cope.
Patients Forum on Tumors of The Parotid Gland: This site focuses on one specific kind of salivary gland cancer, tumors of the parotic gland (also the most common). Along with a discussion forum, there are links to more information about these tumors. Also the personal story of the person running the site, who has had multiple benign parotid gland tumors removed.
Rare Cancer Support Forums: The Rare Cancer Alliance has forums dedicated to many different rare cancers, including head, neck & oral tumors. You’ll need to register to view the forums.
Salivary Gland Cancer Discussions: This message board, from Cancer Compass, is not very active, but you may find useful information or someone who had a situation similar to yours in the older threads.
You may also want to check out our support sections for Head & Neck and Oral Cancers:
Also, our Cancer Patients resources page has more support options for patients with any kind of cancer.
Other Resources for Salivary Gland Cancer
Find a Physician familiar with ACC: Finding a doctor experienced with rare cancers can be hard. The Adenoid Cystic Carcinoma Research Foundation publishes a list of doctors experienced with ACC to help.
Seattle Cancer Care Alliance (SCCA): SCCA is an alliance of doctors from three Seattle medical centers, Fred Hutchinson Cancer Research Center, UW Medicine, and Seattle Children’s. The cancer treatment center handles all kinds of cancers, of course, but it describes itself on its website as “a leading center in the treatment of salivary gland cancer.”
Information For Kids About Salivary Gland Cancer
Although we couldn’t find any information on salivary gland cancer aimed at kids, the Head & Neck Cancer Guide has a section for kids and another section for teens. Each of these sections has age-appropriate information and activities that can help your children understand and cope with your diagnosis.
This cancer is very rare in children, but if your child has been diagnosed, these resources can also help them deal with their own diagnosis.
Other resources, with more general cancer information and child-oriented support, are listed on our Children’s Cancer Resources page.
Caregiver Resources
Caring for someone with salivary gland cancer can be stressful, and you deserve support too. Because it’s a rare cancer, it can be hard to find good information to help your love one. It can also be hard to find caregiver support groups specific to this cancer.
But you can still find support. The caregiver sections on our Oral Cancer and Head & Neck Cancer pages offer a few resources you can access too. And our Cancer Caregiver Resources page offers more options, open to people caring for someone with almost any cancer diagnosis.