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When I was still in active treatment for stage IV squamous cell carcinoma of the tongue, a type of?oral cancer,?I was so focused on staying alive that I couldn¡¯t think too far into the future.?

But after five years of being cancer-free, I finally transitioned to survivorship. That meant I only needed to come back to MD Anderson once a year for check-ups. It also meant I¡¯d meet with a nurse or a physician assistant instead of a doctor. And finally, it meant I could start focusing on things related more to my quality of life than my survival.?

Still, before my first survivorship visit in November 2022, I remember thinking, ¡°Do I really need to go to this thing?¡± Now, I know that the answer is ¡°YES!¡± Because my case manager offered solutions to problems I didn¡¯t even know I had. And, he is helping me prevent future complications that I never realized were potential issues.??

Here are five of my biggest a-ha moments since entering survivorship.?

Small adjustment to swallowing exercise enabled me to gulp again

Swallowing was really hard for a long time after I finished my treatments. It took me almost a year to pass the swallowing test that allowed me to stop receiving all my nourishment through a feeding tube.?

Even then, eating or drinking anything was a very slow process. I could only take one small bite of food or sip of liquid at a time, then chew or swallow it. And sometimes, when you¡¯re really hot and thirsty, you just want to chug down a cold drink. If I¡¯d done that back then, though, I would¡¯ve choked and spit it right back up.??

It wasn¡¯t until physician assistant Shawn Terry showed me a slightly different approach to one of my swallowing exercises that I learned this ability might not be out of my reach forever. And within three weeks of making the adjustment he suggested, I was gulping down water in a way that I hadn¡¯t been able to in five years. I was so excited that I called my family over to watch me!?

Minor tweak to mouthwash formula significantly reduced my ¡®salty days¡¯

Until my cancer diagnosis, I¡¯d never had a single cavity. But since finishing oral cancer treatment, I¡¯ve had at least four. Part of that is due to radiation therapy and part of it is due to changes in my saliva.?

I get a really dramatic dry mouth now. And sometimes, my saliva is thick and much more acidic than normal. I call those my ¡°salty days¡± because they make everything I eat or drink taste like salt ¡ª even milk and water. It completely kills my appetite.?

To neutralize the acid, Shawn suggested that I increase the ratio of baking soda to salt in the mouthwash I already use several times a day to keep my mouth moist. It worked! Now, instead of enduring that awful salty taste for four days every three months, it¡¯s gone by the next day. The relief is not immediate, but it¡¯s still a huge improvement.?

Clear, fitted teeth-aligning system may help me preserve my smile?

Another thing I learned from Shawn was that while I couldn¡¯t use one of those clear, fitted teeth-aligning systems to fix anything that was already crooked after treatment, I could use it to prevent my teeth from getting any worse.?

That turned out to be useful information since I had four lower teeth pulled during my surgery. They¡¯d been a little crowded to begin with, so I¡¯d thought those remaining would naturally just kind of space themselves out. They ended up doing the exact opposite.??

All of my teeth have shifted now in a way that makes my smile less aesthetically pleasing. But it »å´Ç±ð²õ²Ô¡¯³Ù bother me too much. It¡¯s not a big deal, compared to the alternative. Still, I¡¯m glad to have an option to preserve the smile that I have now.?

Posture-correcting device is helping prevent future problems?

The scarring in my neck tends to make me lean forward a lot. That will only get worse as I get older. I didn¡¯t want to develop a hunchback, so Shawn suggested a simple posture corrector that I could buy online for about $15.??

I put it on, tightened the straps, and started wearing it for about an hour every night. I¡¯ve only been using that device since Christmas, and it¡¯s already helping me hold my head up straighter.?

It turns out ³Ù³ó²¹³Ù¡¯²õ pretty important. Scar tissue can harden and thicken over time. If that happens, it could pinch or squeeze my carotid artery, causing serious circulation problems. That¡¯s why one of the first things Shawn did as my case manager was to order an ultrasound of my neck to establish a baseline. I hadn¡¯t even thought of that. But Shawn did.?

Simple massage trick resolved my painful oral ¡®charley horses¡¯

Shawn also helped me with the terrible pain I experienced when I yawned really hard. I was driving the first time it happened. It was so bad that I had to pull over. I thought I was going to die. It was like having a charley horse in the bottom of my mouth.?

Shawn explained that the pain was caused by a nerve spasm due to surgery and radiation. The floor of my mouth and tongue were rebuilt using a muscle from my arm, and when it spasms, it twists so hard that the bottom of it pops down and I can actually feel it under my chin.?

Shawn taught me how to make it stop by massaging the area for a few seconds and then forcing a swallow. Before that, it would take several painful minutes for the nerve to finally relax. Now, I know exactly where to press to make it stop, and the muscle pops right back into place.??

Lesson learned: Simple solutions can yield big payoffs

All of these things might seem really minor. But they don¡¯t feel minor when they¡¯re happening to you. And collectively, having such small tweaks result in such huge quality of life improvements is a really big deal. It makes me more grateful than ever for MD Anderson.?

It¡¯s so reassuring to know that even now that I¡¯ve transitioned to survivorship, I still have people at MD Anderson who care about me and know what they¡¯re talking about. Even when they don¡¯t have the answers to my questions, I know I can trust them to find out and not lead me down the wrong path. I know they care.?

MD Anderson has already saved my life once. Nobody knows my mouth better. I appreciate that they¡¯re still trying to help me live well. And, they¡¯re just a phone call or a MyChart message away when I¡¯m not.?

Until my first survivorship appointment, I¡¯d never even thought about the concept of ¡°after-care¡± as something I should want. I didn¡¯t know what that meant or what it would look like. But it¡¯s wonderful to know that my care didn¡¯t stop just because my cancer did.

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Most people experience a canker sore at some point in their lives. These small, often painful lesions can appear on any moist, fleshy surface inside the mouth. This includes the cheek, tongue, roof or gums.

Normally, canker sores heal on their own in about two to three weeks. So, how do you know if a mouth ulcer is a symptom of oral cancer or a harmless canker sore??

We checked in with , director of MD ´¡²Ô»å±ð°ù²õ´Ç²Ô¡¯²õ Oral Cancer Prevention Clinic.?

How do canker sores differ from oral cancers?

First of all, ¡°canker sores¡± is not a medical term. It¡¯s a term that some people use to describe many different unrelated conditions. We can continue to call them that here, for the sake of this article, but it¡¯s important to note that the scientific name for what we¡¯re discussing is actually ¡°aphthous ulcers.¡±?

Aphthous ulcers are painful little sores that develop inside the mouth. We don¡¯t know exactly what causes them, but most resolve on their own pretty quickly.

Do canker sores develop in other locations on the body, too?

No. Aphthous ulcers only develop on the moist surfaces inside the oral cavity.?

The painful cracks that sometimes develop in the corners of your mouth are called angular cheilitis or perl¨¨che, and they tend to be caused by an overgrowth of yeast called ¡°candida¡± or a vitamin B deficiency.?

Ulcers that develop on the lips or as clusters of blisters around the mouth are usually caused by the herpes virus, especially if they¡¯re preceded by a tingling sensation. These are also known as fever blisters or cold sores.

Are there any other conditions that can cause ulcers inside the mouth?

Oh, yes. Many things that aren¡¯t cancer can cause ulcers inside the mouth. These include chickenpox, shingles, an inflammatory condition called lichen planus, and hand, foot and mouth disease, to name just a few.

How can someone tell if a mouth ulcer is an oral cancer instead of just a canker sore?

Here are the qualities I look for:

Appearance

The edges of a canker sore are often red and angry looking because the surrounding tissue is inflamed. That's not usually the case with cancers. Canker sores also tend to be flat. Oral cancers often have a tiny lump or bump under the lesions that you can feel.

Behavior

Oral cancer in its earliest stages is not usually painful. But canker sores often are. They become less painful as they heal.

Changes

See a doctor if you have a small spot that grows larger, a white spot that turns red, or a lesion that bleeds when it didn't use to.

Development

Does the lesion get worse or better over time? Most canker sores will heal on their own within two or three weeks. If yours doesn't, it's time to see a doctor.

Is there anything that cancer patients should know about canker sores?

Cancer patients who are receiving chemotherapy often develop mouth ulcers. I do a fair number of consultations each month with patients who are worried that these might be cancer.?

The good news is that this type of mouth sore is just the body¡¯s reaction to chemotherapy. So, it¡¯s nothing to be worried about; it¡¯s a well-known side effect of that particular treatment.

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As director of MD ´¡²Ô»å±ð°ù²õ´Ç²Ô¡¯²õ Oral Cancer Prevention Clinic, I see many patients each year with both oral cancers and pre-cancerous conditions. Squamous cell carcinoma accounts for about 95% of oral cancers, which, unlike oropharyngeal cancers, are not related to the human papillomavirus (HPV).

One thing I¡¯ve noticed is how many patients express the same reasons for not having their oral lesions looked at sooner. None of them are based in fact, but all of them are based on misinformation.

Here are four myths I hear the most often, and why you shouldn¡¯t believe them, either.

Myth #1: It »å´Ç±ð²õ²Ô¡¯³Ù hurt, so I don¡¯t need to worry about it.

Fact: Most people who find white splotches in their mouths will never develop oral cancer. But it¡¯s still a good idea to have them checked out. One of the most common symptoms of oral cancer is something called ¡°leukoplakia,¡± or white spots in the mouth. Leukoplakia is a pre-cancerous lesion indicating an increased risk of developing oral cancer one day.

When I first meet some patients, they¡¯ll say, ¡°Well, I¡¯ve had this spot on my tongue or cheek or gums for a while now, but it didn¡¯t hurt, so I figured it was harmless.¡±

Actually, the opposite is often true. If a sore in your mouth hurts, it¡¯s usually because you bit, scraped or burned yourself somehow, or you have a little viral infection. Normally, these types of things clear up on their own in a couple of weeks.

But if a sore »å´Ç±ð²õ²Ô¡¯³Ù hurt ¡ª and »å´Ç±ð²õ²Ô¡¯³Ù heal within a few weeks ¡ª ³Ù³ó²¹³Ù¡¯²õ when you need to worry. Because cancer is not usually painful at early stages. And it »å´Ç±ð²õ²Ô¡¯³Ù heal spontaneously.

Myth #2: I don¡¯t smoke or use tobacco, so I can¡¯t get oral cancer.

Fact: More than half of my patients have no history of tobacco use of any kind.

Just as anyone with lungs can get lung cancer, anyone with a mouth can develop oral cancer. And while it¡¯s true that tobacco use significantly increases the odds that you will develop oral cancer, it¡¯s not the only possible cause.

In fact, many doctors who treat oral cancers have started noticing a curious phenomenon: there seem to be two peaks in the occurrence of oral cancers among women with no history of smoking. One is of tongue cancer in women around age 40. The other is of gum cancer in women in their late 70s and early 80s. But no one really knows why.

One thing that gives me hope is a clinical trial being led by She¡¯s been treating patients with oral cancer with a combination of chemotherapy and an immunotherapy drug called pembrolizumab. And, some of her patients have seen a complete response. That means when surgeons went to operate on their tumors, there wasn¡¯t any cancer left to remove. That¡¯s pretty amazing.

Myth #3: I¡¯m too young to get oral cancer.

Fact: Cancer tends to develop in older people, so it¡¯s unusual to see oral cancers in someone younger than age 40. But it¡¯s not impossible. That¡¯s why it¡¯s so important to get anything odd checked out, even if you think you¡¯re too young to have cancer.

Sometimes, even doctors don¡¯t believe someone in their 20s or 30s could have cancer. They just keep throwing antibiotics at the problem.

I¡¯ve also seen more patients coming in with larger cancerous tumors lately, because they¡¯ve put off seeing a doctor or dentist due to COVID-19 restrictions. But cancers are easiest to treat when they¡¯re diagnosed early, and here at MD Anderson, we¡¯re taking every possible step to ensure the health and safety of our patients while they¡¯re on our campuses.

Myth #4: My oral cancer is gone now, so I don¡¯t have to worry anymore.

Fact: Once you¡¯ve had an oral cancer, you¡¯re automatically at greater risk for developing another.

That¡¯s why vigilance is crucial, even after you¡¯ve been cured. Usually, that only amounts to a check-up once every six months, unless you notice pre-cancerous changes.

Other oral cancer symptoms to look for include:

• A sore that won¡¯t heal ¡ª most minor cuts and scrapes in the mouth will resolve on their own within a few weeks; but if one »å´Ç±ð²õ²Ô¡¯³Ù, get it checked out
• A lump or a bump ¡ª especially if it¡¯s growing large
• A red or white patch ¡ª especially if it bleeds when you touch it
• Loose teeth ¡ª sometimes caused by cancer of the gums
• Problems speaking, chewing or swallowing ¡ª once a tumor gets big enough, it may hurt to eat or speak, or you might not be able to move your tongue well enough to chew or swallow
• Unexpected weight loss ¡ª often caused by problems chewing and swallowing

The most important thing to look for is changes over time, such as a white spot changing to red, a small spot growing larger, a spot bleeding when it didn¡¯t used to, or a lump or bump becoming painful when it wasn¡¯t before. Those are the things you want to investigate.

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From eating and drinking to talking and breathing, you use your mouth constantly. With all that movement, you probably notice when something »å´Ç±ð²õ²Ô¡¯³Ù feel right on your tongue, lips, gums or cheeks.?

But what does mouth cancer look like? And when is a growth in your mouth something to worry about?

¡°Anything out of the ordinary should be shared with your doctor,¡± says head and neck cancer specialist Neal Akhave, M.D.?

Here, he explains what mouth cancer, also called oral cancer, looks like. Use these insights so you know what to watch for.??

Red or white spots in the mouth could be cancerous

To know what oral cancer looks like, you must first know what a healthy mouth looks like. Akhave points out that the inside of your mouth should be roughly the same color all over.?

¡°If you notice any abnormal coloring in your mouth, ³Ù³ó²¹³Ù¡¯²õ a red flag,¡± he adds.??

Your care team may use the following medical terms to describe these spots:?

• Leukoplakia: From the Greek word for ¡°white,¡± leukoplakia are light-colored spots inside the mouth. They can be cancerous or pre-cancerous and may be found on the lining of your gums or your tongue.??

• Erythroplakia: From the Greek word for ¡°red,¡± these red spots appear on the inner lining of your mouth, tongue or cheeks.?

Akhave suggests getting familiar with what the inside of your mouth looks like, from the roof to under your tongue and from cheek to cheek and along your gums. Cancerous spots may differ depending on their location:?

• Tongue: Look for a lump or ulcer on the top or bottom of the tongue, as well as any discoloration on either side.?

• Cheeks: Watch for small ulcers or tumors, as well as redness or bleeding.

• Salivary glands: Check for bumps on your neck or the outside of the cheeks. These are often found while shaving or washing your face.?

• Gums: Look for redness, bleeding or lumps, especially without any injury to those areas. These can be in the bed of a tooth or on the surface of the gums.?

• Lips: Watch for discoloration, bleeding or bumps on the inside or outside.?

Mouth cancer isn¡¯t usually painful

Although mouth cancer can look like an ulcer or inflamed spot, it usually isn¡¯t painful, especially early on.?

¡°Tumors in the mouth usually just feel like a bump,¡± Akhave says. You may also have trouble swallowing if a tumor is deep in the mouth.?

Leukoplakia or erythroplakia anywhere in the mouth may bleed if they¡¯re irritated ¨C but the bleeding isn¡¯t painful either.?

Rather, painful spots in your mouth are often signs of injury or infection. For example, canker sores can be quite painful, but they often go away after about 10 days.?

If you notice anything in your mouth that lasts longer than that, Akhave recommends getting it checked out by a doctor.?

Regular dental exams can screen for mouth cancer

Unfortunately, because mouth cancer »å´Ç±ð²õ²Ô¡¯³Ù often cause severe symptoms, it¡¯s often not diagnosed until it¡¯s more advanced. That¡¯s why Akhave stresses the importance of regular dental checkups, which can detect the earliest signs of mouth cancer.??

¡°Your dentist can take note of any changes they see in your mouth,¡± he says.??

If there¡¯s anything suspicious, your care team may suggest a biopsy to test for cancer cells. Most cancers found in the mouth are squamous cell carcinoma since squamous cells cover many of the surfaces inside your mouth.?

Reduce your risk of mouth cancer

Tobacco and alcohol use are the most common causes of mouth cancer, so avoiding these products can help reduce your risk.??

Rarely, oral cancers can be caused by the human papillomavirus (HPV), but HPV is the most common cause of tonsil cancer or cancer on the back of the tongue. You should get the HPV vaccine if you are eligible. It¡¯s recommended for everyone ages 9-26. Adults ages 27-45 should talk with their doctor about the potential benefits.

Although regular dental care can help detect oral cancer, Akhave says there¡¯s no clear link between oral hygiene and cancer risk. ¡°We know there are lots of bacteria in our mouths, but we don¡¯t know how or if those bacteria interact with cancer cells.¡± ?

He adds that research is underway to better understand how bacteria affect oral cancers, like the research looking at the gut microbiome¡¯s effect on patients with colorectal cancer.?

¡°There¡¯s still a lot we don¡¯t know about mouth cancer, but clinical trials are changing that,¡± Akhave says.?

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