The Mouth Tongue and Throat Cancer Support Center

Every person is unique, but when you face a challenge like a diagnosis of mouth, tongue or throat cancer, you are never alone.  Countless others have faced the exact same diagnosis and have survived and thrived.  The following Guide is designed to help you navigate your journey with the best information and resources that helped other cancer patients when they faced the same challenge. 

TSC has scoured the Internet and assembled links to the very best mouth, tongue and throat cancer resources: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges you’re facing.

As you’ll see, we always welcome your ideas and suggestions to make this Mouth, Tongue & Throat Cancer Guide even more helpful to survivors like you.   

JUST FOUND OUT 

Survivors Say: Best Resources for a Diagnosis of Mouth, Tongue or Throat Cancer

• Basics of Oral Cancer   “The Oral Cancer Foundation is a national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and support activities.”
• Cancer of the Mouth and Throat Overview  The first signs and symptoms of oral cancer.
•  Symptoms and Diagnosis of Oral Cancer  From Web MD.

The Big Picture

Oral cancer affects approximately 34,000 Americans every year, and almost 9,000 Americans die each year from mouth, tongue or throat cancer.

The most common symptoms of oral cancers include swellings or bumps or sores in the mouth or on the lips or in the throat which do not get well, velvety white or red spots on the lips or in the mouth, unexplained bleeding in the mouth, numbness or pain in the face, neck or mouth, or sores that don’t heal for weeks at a time.

You can’t catch oral cancer from another person.  There are, however, risk factors which make it more likely that you will contract oral cancer, although not everyone who comes down with oral cancer falls within these risk categories:

• Tobacco use.  Smoking or chewing tobacco puts you at far greater risk of contracting oral cancer than someone who refrains from all tobacco use.
• Alcohol use.  People who drink are more prone to oral cancers.  The more a person drinks the more susceptible he or she is to contracting oral cancer.  Drinking alcohol and using tobacco puts you at double the risk of contracting oral cancer.
• The sun.  People who spend a lot of time in the sun, especially those who do not protect their lips from direct exposure to the sun, run a higher risk of lip and mouth cancers.  Smokers who spend a lot of time in the sun double their risk.
  

A personal history of neck or head cancer also puts you at a greater risk.  If the problem runs in your family then your chances of contracting neck or head cancer are increased.  Smoking increases your risk further.

Oral Cancer Symptoms and Risks

Your Mouth, Tongue and Throat Cancer

The unfortunate fact is that the 5-year survival rate for all forms of oral cancer is only around 50 percent.  Mortality in some minorities, especially black males, is even higher.  Clearly the focus must be on preventing oral cancers in the first place.  The primary way to prevent the vast majority of oral cancers is to refrain from the use of all forms of tobacco.

Mouth, Tongue And Throat Cancer Facts  Many oral cancers are only discovered during dental check-ups.  Read what a dentist has to say about oral cancer.

Your World

Obviously you are going to be overwhelmed by a flood of emotions the moment you hear a diagnosis of oral cancer.  Few people can hear the word “cancer” and not feel a pang of fear. This is perfectly normal.  Talk with your loved ones and reach out to support centers during the initial stages of your journey. For an inspiring personal story of dealing with the tangled web of emotions you may be going through, visit

Surviving Oral Cancer

It’s sometimes difficult to put everything into perspective and get a clear handle on everything that has suddenly changed in your life.  Join with others and empower yourself through the National Coalition for Cancer Survivorship.

Empower Yourself & Others

Mouth, Tongue and Throat Cancer Myths

• Taking this oral cancer quiz can help you sort through many of the myths surrounding oral cancers.  The Oral Cancer Quiz
• Top 5 oral cancer myths, brought to you by a dentist.  Top 5 Oral Cancer Myths [PDF]

Information and Recommended Links for Survivors:

• New discoveries are being made all the time in the battle against oral cancers.  New Treatments Just Around The Corner
• New studies indicate that eating right can have a bigger effect on curing oral cancer than first thought.  Find out how eating the right foods can actually help in your fight against this disease. It’s What You Eat That Counts

Types of Treatment

The treatments available for oral cancer vary depending on the type of cancer, what stage it’s in, its location and a variety of other factors. Treatment for oral cancer should involve a number of different doctors and specialties.  Learn more about what and who should be involved in your treatment plan at:

Oral Cancer Treatment

Most oral cancers, especially those caught early before they’ve had a chance to spread, are best dealt with by surgical removal. This is often followed by radiation therapy and often chemotherapy as well.

• Treating Oral cancer
• Surgery for Oral Cancer
  

Possible Treatment Side Effects

Almost any medical treatment has side effects, and the treatment options for mouth, tongue and throat cancer are no different.  When evaluating side effects one must always weigh the potential benefits against the potential risks.  The National Cancer Institute lays out both the benefits as well as the risks for surgery, radiation and chemo.

Potential Side Effects of All Types of Oral Cancer Treatments

Creating a support circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums.
  

Insurance & Work Matters

Insurance Matters

Regardless of what type of cancer you have, your health insurance should cover all or most of your expenses. Problems arise if you try to buy health insurance after you have been diagnosed with mouth, tongue or throat cancer.  For more information on types of insurance available, the questions you need to ask, and what to do if you don’t have coverage, please visit:

Insurance & Oral Cancer

Work Matters

Employers may not ask a job applicant any specific questions regarding illnesses the applicant is currently being treated for or any past illnesses, including cancers.  For a list of specific questions and answers regarding cancer in the workplace please see:

Question & Answers About Employment Discrimination

Health-care Providers Who Can Help

If you’re not happy with your current doctor or you don’t know how to find a doctor who specializes in oral cancer, or if you feel you need a second opinion, the National Cancer Institute is here to help.
 
How to Find an Oral Cancer Specialist Near You

The Emotional Roller-coaster

Your chances of surviving oral cancer are reasonably good, especially if the cancer is detected early.  But regardless of how early your cancer was detected or what your doctor might say, it is perfectly natural for you to be concerned…even scared. You are not alone.  Tens of thousands of people have been in the same spot you are in right now.  Many cancer sufferers break down under the stress of battling this disease. If you are feeling overwhelmed then it is vital that you change the way you look at yourself and your cancer.  Determine to live your life as normally as possible, and participate in the same daily activities you've always enjoyed.

Support groups are also important to maintaining a healthy emotional state. Educate yourself on the reality of your condition and read books and stories written by those who have dealt with mouth, tongue or throat cancer in their past and survived. 

Inspirational Story of a Teenage Survivor and What She’s Given Back

Books Survivors Recommend

• Oral Cancer: Diagnosis, Management and Rehabilitation
• Oral Cancer (with CD-Rom)
• Contemporary Issues in Oral Cancer   
  

Communicating with Your Health-care providers

Bring a friend or family member with you to your appointments. Your friend is there not only to provide support but to lend an extra ear and to possibly ask questions you may not have thought of.  If you can’t bring a friend, bring a tape recorder.

Don't be afraid to ask any questions you feel you need the answer to, even if you may be scared of the answer. Ignorance is not your friend when you’re battling mouth, tongue or throat cancer.

Write down any questions you may have ahead of time and the answers to those questions as your health-care provider walks you through them.  Don't be afraid to ask for clarification on anything.

Specific Questions to Ask Your Doctor about Your Oral Cancer 

Dealing With Mouth, Tongue & Throat Cancer: Information and Recommended Links for Co-Survivors:            

How you can help

• Be there for your friend or family member.  Let them know you care, that you still love them and that you are 100% behind their efforts to cure their condition.
• Maintain a normal daily routine as much as possible.  Allow the patient to make as many decisions as possible concerning his or her treatment.
• Involve your friend or family member with others. Don't focus exclusively on their disease and treatment plan. An oral cancer patient who is involved with others has a better chance of avoiding feelings of abandonment.
  

What to say  

• "I will support your decision in whichever treatment option you choose."
• "Do you want to talk about it?"
•  Tell them how much you care about them.

What not to say

• "Don't worry, we'll find a way to make this all go away."
• "We'll see every cancer doctor in the country and spend as much money as it will take to get you well."
• "I’ll handle everything; you won’t have to lift a finger."
  

Things you can do for a survivor every day

If the patient isn't a family member, help out when they are away by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the patient is a family member, help out with chores or other duties they may have fallen behind on. Help them get their life back on track – and then step back and allow them to get on with their lives.

How to build a support network

• Set up your TSC Co-Survivor Profile
• Create a support group for your friend or family member.
• Interact and provide updates
  

How to help a mouth, tongue and throat cancer patient deal with day-to-day challenges

As horrible as it is to learn that you have any form of cancer, it is vital to realize that many oral cancers are treatable if caught early.  Still, there’s no way to completely avoid the feelings of fear and isolation that such a diagnosis can create – but there are some specific things you can do to lessen the fear.

• Diagnosis and Uncertainty

If the disease is detected early, the majority of oral cancer patients survive and thrive.
 
So what can you do now?  Start by telling your story.  Not only will you put your own thoughts and feelings into perspective but you can provide hope to others who are going through a similar journey themselves, whether it’s oral cancer or another form of cancer.

Remission / Recovery / Recurrence

The remission or cure rates for mouth, tongue and throat cancer vary greatly depending on precisely what type of cancer it is and what stage it is discovered in.  Early detection means a much better chance of survival. But even with early detection a large number of oral cancers recur and for that reason it is vital that you see your doctor regularly and have checkups for new mouth, tongue and throat cancers several times a year.

If there is a recurrence of your cancer the new outbreak is usually treatable but it is natural that you will want to do whatever you can to prevent a recurrence.  This includes stopping the use of all forms of tobacco and refraining from drinking alcohol.  Stay out of the sun as much as possible and use lotions and wear hats that keep the sun off of your face and lips. 

The Experiences of Actual Oral Cancer Survivors

Give back

What helped you while you were dealing with your mouth, tongue and throat cancer diagnosis? Take a look back at your journey and share with others what helped you and what you wished you would have known/done during your cancer experience. You can create a profile, reach out to other survivors, join support circles or share your story by following the links at TheSurvivorsClub.org.

Several charities and foundations exist to help oral cancer patients.  One of the largest is the Oral Cancer Foundation.

The Oral Cancer Foundation

What can you do when you find out your treatment for mouth, tongue or throat cancer has failed or that you have relapsed? Many people simply refuse to deal with the possible consequences.  If you find out that your treatment has not taken effect it's important for you to understand what the consequences can be and to understand that they affect not just you but everyone around you as well:

• Dealing With Death: So Many Emotions
• The Five Stages of Dealing With Death and Dying