Have you just been diagnosed with an oral cancer (mouth cancer)? Then you probably want to learn all you can about this kind of tumor and what you can expect from treatment.
But where to start? When you do an internet search, the number of results can be overwhelming. Just clicking links can be a frustrating, hit-or-miss exercise.
That’s what we’re here for. To help you get started with a few high-quality resources.
So what is Oral Cancer? It’s a kind of Head & Neck Cancer. In fact, it’s the most common kind, although it’s still pretty uncommon compared to “bigger” cancers like breast or lung cancer. Fewer than 3% of all new cancer cases each year are oral cancers.
Of course, if you’ve just been diagnosed with oral cancer, it doesn’t matter to you how common or uncommon it is. You just want to find out all you can about it.
We’ve organized resources into categories. While we recommend you start with the overviews, this is your journey, so start wherever you’re most comfortable.
Of course, your doctor(s) should always be your main source of information about your specific case. But research can make it easier to know what questions to ask. And to understand the answers.
Oral Cavity Cancer Overviews
Overviews are often a good place to start your research. They usually give you a basic idea of each aspect of a disease. From diagnosis to treatment options, talking with your doctor, prevention and more.
Oral Cancer: This very simple overview from MedlinePlus is great if you’re feeling completely overwhelmed. It’s short and to the point. Very easy to understand. And it links to more information if you’re ready for that.
Mouth Cancer: This overview is a little more in-depth, but still very easy to understand. It gives you a general feel for what you can expect. It includes information on questions to ask your doctor and how to deal with fatigue from radiation or chemotherapy.
Oral and Oropharyngeal Cancer: This guide from Cancer.Net includes information on the stages of oral cancer and recent research into new therapies and ways to reduce side effects from treatment.
What You Need To Know About Oral Cancer: This online booklet from the National Cancer Institute includes information on getting a second opinion and reconstructive surgery.
Oral Cancer Facts: This guide to oral cancer can be a little hard to read, but it has a lot of good information and links to more information in some sections. It’s probably best to read some of the other overviews first, so you can better understand this one.
Organizations Devoted to Mouth Cancer
Not many organizations exist specifically for Oral Cancer. This is the best one we found.
The Oral Cancer Foundation: The website includes a lot of information about oral cancer, including diagnosis, treatment, images and how to get enough nutrition if you start having trouble eating and/or swallowing. Some of the information is a little dense and hard to read. But it can help you understand your diagnosis and options.
We list other organizations devoted to head & neck cancers in general, which includes oral cancer, on our Head & Neck cancer page.
Research into Oral Cancer
Researchers are constantly looking for new and better ways to diagnose and treat oral cancers. When research looks promising, they need volunteers to take part in clinical trials.
These trials are not for everyone, and not everyone can even qualify for one. But if you’re interested in possibly being part of a trial, you can search for trial information on these sites and talk to your doctor about what you find.
ClinicalTrials.gov: Here are a few different search terms that bring up trials on various oral cancers:
- Oral cancer: This is a very large list, but you can modify it to show only trials that fit your specific needs. Or try one of the next terms, which return much shorter lists.
- Mouth neoplasms
- Tongue neoplasms
Oral Cancer Clinical Trials on CenterWatch: This list is organized by state and lists trials that are actively looking for new patients.
Forums and Support Groups for Mouth Cancer
When you’re sick, sometimes you can feel all alone, even when surrounded by well-meaning family and friends. It may be hard for them to understand how you’re feeling if they’ve never been there themselves.
But other cancer patients do understand. Connecting with them can help you feel stronger and more in control of your journey.
OCF Survivor/Patient Forum: The Oral Cancer Foundation offers forums for many issues surrounding oral cancer, including treatments, after-treatment issues, recurrence of your cancer and more. Most of the areas look very active.
Mouth Cancer Foundation’s Community Forum: Although the Foundation is Britain-based, the online forum appears open to anyone to read. You do need to register to post.
ACOR Oral Cancers Online Support Group: The Association of Cancer Online Resources offers dozens of email and online support groups for people with specific cancers. This mailing list had 171 subscribers when we visited. You must register to see posts.
For other support options, check out the Support section on Head & Neck cancers or our general Cancer Patient Resources page. [LINK]
Other Resources for Oral Cavity Cancer
Find a Surgeon: This searchable online directory lets you find surgeons who are members of the American Association of Oral and Maxillofacial Surgeons. You can search by location, name or country. The doctor’s names in the search results are clickable and take you to a page with the doctor’s contact information.
Oral Cancer Gene Database: This database contains information about genes that may cause oral cancers when mutated (changed). You’ll need some science or medical background to understand it, but if you do have that, you might find it useful.
Information For Kids About Mouth Cancer
Telling your kids you have cancer is never easy. But it can be a little less hard with tips like you’ll find in the Head & Neck Cancer Guide. This website also has a section with information geared specifically for children and another area just for teens.
For more guidelines on talking with your kids and other websites to help kids understand cancer, visit our Cancer Resources for Kids & Teens page.
Caregiver Resources
If you’re a caregiver of someone with oral cancer, don’t forget to take care of yourself, too. It’s not selfish. It’s actually one of the best things you can do to ensure you’ll be able to keep taking care of your loved one.
The Head & Neck Cancer Guide has a caregiver section just for you. It has lots of tips and information to help you help your family member or friend.
Also, the OCF Patient/Survivor Forum has a Caregiver/Co-Survivor forum. It’s less active than the patient forums, but when we visited it looked like most threads got replies within a couple of days.
Our Cancer Caregiver Resources page lists lots of other support services for caregivers of people with (almost) any cancer diagnosis.