You may be reading this because you’re concerned you may have tongue cancer. Maybe you’re waiting for test results. Or, perhaps you or someone you care about just learned they have tongue cancer.
This guide will help you understand how tongue cancer is diagnosed and what your diagnosis means. Learning as much as you can may help you feel ready to talk with doctors about your care.
A tissue biopsy is the first step in diagnosing tongue cancer. A surgeon will remove cells or tissue to test for cancer. You’ll also get imaging tests, such as CT or MRI scans.
A tongue cancer diagnosis most often will describe where the cancer started, its type, and if it has spread. We use this information to create a care plan just for you.
Tongue cancer is often found during a routine dental exam or check-up.
Your care team will take a complete health history. If you have a tongue ulcer or other sign of tongue cancer, they’ll ask when it started. They’ll want to know if it has changed in size or how it looks.
If something does not look right, you’ll need tests. They’ll help confirm if it’s tongue cancer.
Medical misinformation is harmful. It’s often framed as offering a “miracle cure” or something that “doctors don’t want you to know.” MSK experts explain how to find online cancer information you can trust. Much medical misinformation is about alternative medicine, often confused with integrative medicine.
Talk with an MSK Care Advisor. We're here 24 hours a day, 7 days a week.
Learning you have tongue cancer can be overwhelming. You’ll hear many medical terms you've never heard before. We’re here to help you understand what they mean and why they matter.
The information in your diagnosis describes important details about the type of tongue cancer you have. Your doctors use that information to create the best plan of care for you.
Newly diagnosed? Hear advice from our patients.
Michael:
You have a diagnosis of cancer, and there's all this fear and there's apprehension and you're nervous and you're scared. You've got surgery in front of you. You've got quality of life issues ahead of you. What I wish I had known was that you can come out the other side of this journey.
Lorena:
When I received the news that I had cancer, it was devastating and I was lost, completely lost.
Ming:
You are meeting with a lot of different people, so what I would really recommend to patients is just do your best to take notes.
Michael:
Come to the appointment prepared. Come with questions.
Norma:
I had questions about my recovery. I had questions about the possibility of chemo. I was placed on a clinical trial, and I had questions about that.
Michael:
Prior to coming to MSK, my wife and I had been to a variety of different doctors, and we got a lot of different answers and no clear direction. It was the first time that a definitive plan was put in place where I actually had a recommendation of which way to go.
Ming:
My care team consisted of doctors, social workers, nurses.
Michael:
It's not just one doctor you're dealing with. You're dealing with all of MSK and their entire team approach to your care.
Lorena:
The way they greet me, it was just overwhelming. I was so happy. It was 100% personalized for me.
Norma:
I was told to expect patient-centered care and I kind of felt that from the beginning, from that first day that I walked in.
Ming:
There were even people there just to hang out with me and to kill time. If you need something, ask. And even if it's something small like, “Nothing tastes good,” or “Everything tastes awful and I can't eat any of this,” it's important to tell someone and they can help you address your needs as a patient
Lorena:
One of the programs that I found helpful was Integrated Medicine. For example, acupuncture. It helped me to calm down; and then after the treatment, it managed the pain.
Norma:
I immediately used the nutrition program because it was amazing. I used their PT program. I used their Visible Ink program, which is wonderful and it gives you tremendous emotional support.
Lorena:
Another thing that is very helpful is the MSK Patient Portal. You can set up appointments. You can request prescriptions. You can also use the portal for a telemedicine visit. On the days that you don't have any energy, telemedicine is there for you. There is no difference at all between being seen in person or telemedicine.
Norma:
I never felt that I couldn't call someone, even if it was the doctor's nurse, and just talk.
Ming:
The silver lining from being diagnosed with cancer is I taught myself how to be positive.
Lorena:
This experience taught me to live in the moment, and you learn how to live life in a better way.
Genomic testing uses a sample taken from a tumor. We also consider sending blood samples as well, to learn more about the tumor’s genes.
At MSK, we may do tumor genomic testing for some advanced tongue cancers or tongue cancer that came back.
Genomic testing tells us which genetic changes caused the tongue cancer and made the cancer grow. The test results let us target those genes for treatment, a method called targeted therapy.
If we know which mutations you have, we know which treatments will work best on the tumor. Almost all of these genetic changes are only in cancer cells, not in normal cells. They cannot be passed on to your children.
We test for changes in more than 500 genes. Tongue cancers have more of a protein called epidermal growth factor receptor (EGFR).
When you learn you have tongue cancer, you’ll have many questions for your cancer doctor at your first visit. Talking about treatment options with your doctor can help you feel better prepared to make decisions about your care.
Oral tongue cancer: The oral tongue is the front 2/3 of the tongue, what you see when you stick out your tongue. This guide is only about oral tongue cancer.
You may hear about cancer that starts at the base of the tongue. The base is the back part of the tongue you cannot see because it goes into the throat.
Oral tongue cancer is not the same as cancer that starts in the part of the tongue near your throat. Cancer that starts at the base of the tongue is throat cancer, also called oropharyngeal cancer. It’s not tongue cancer.
For all cancers in the tongue, about 9 out of every 10 are squamous cell carcinoma. Most often, they start in squamous cells.
Tobacco is a main cause of oral tongue cancer. Our Tobacco Treatment Program offers treatment options to help you quit, such as counseling and medicine. It’s open to people who never had cancer or a disease linked to tobacco. It also welcomes anyone who has cancer, and cancer survivors.
A cancer stage tells us how advanced the cancer is. Staging describes traits such as the tumor’s size, location, and whether it has spread.
There are 5 stages of tongue cancer, from 0 to 4 (0 to IV). The lower the number, the less the cancer has spread. Your doctor may add a letter (A, B, or C) to these stages to give even more information.
Staging helps your doctor choose the best treatment options for you. The stage also helps them predict the outcome (result) of your treatment. Based on the stage, you also may be able to join a clinical trial.
The stage is based on:
Your doctor may use letters and numbers from the TNM system to describe the stage:
N0 means cancer is not in lymph nodes. N1, N2, or N3 means it’s spread to nodes.
M0 means cancer has not spread. M1 means it’s spread to distant organs, muscles, or bones.
