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Before I was diagnosed with stage IV salivary gland cancer at age 65, I¡¯d thought of MD Anderson as a place where only people with serious, life-threatening cancers went.

I didn¡¯t realize the difference between MD Anderson and other medical facilities until I went there myself for salivary gland cancer treatment in 2019. But once I started connecting with other cancer patients at other hospitals on social media, I found out very quickly why MD Anderson is the nation¡¯s No. 1 hospital for cancer care.?

MD Anderson¡¯s optimism and salivary gland cancer expertise gave me hope

The first thing that impressed me was how positive MD Anderson¡¯s doctors are, while still being honest.?

I¡¯d noticed a little knot at the base of my tongue while having some fillings replaced. It was only about the size of a pea. But I got it looked at right away. The local ENT who diagnosed me with squamous cell carcinoma said it had already spread to nearby tissues. The tumor wasn¡¯t very big. But it was invasive enough that he said doing surgery first would be debilitating. That was pretty scary. He suggested I go to MD Anderson.

When I met with head and neck surgeon at MD Anderson, she was so encouraging and confident. So were medical oncologist and radiation oncologist . They insisted my cancer could be cured with a combination of other treatments, or that they could shrink the tumor enough that it could be surgically removed.?

It turns out they were right.

MD Anderson¡¯s team approach was even more impressive

What impressed me even more was MD Anderson¡¯s holistic approach to cancer treatment. My care team sought to improve every aspect of my life ¡ª not just cure the cancer. And they plan for success right from the get-go.

I visited with experts in lymphedema, swallowing and other specialties at MD Anderson¡¯s Head and Neck Center before even starting my treatment. My doctors there fully expected me to live for years after completing it, so they wanted to do everything possible to preserve my ability to function normally.

Sometimes, I would ask why I was seeing a dentist, audiologist or speech therapist for an oral cancer, and they would explain how a particular treatment might affect me and what they were doing to manage it.

Dr. Hessel even referred me to an MD Anderson dermatologist to make sure a little brown spot on my forehead wasn¡¯t malignant. I told her I was already getting my skin checked pretty regularly by a local doctor. But she said, ¡°Look: I¡¯m not curing you of oral cancer only to turn around and have you die of skin cancer. I want you to see one of ours.¡±?

MD Anderson sent me to one of its urologists, too, when it came time to have sex after finishing my cancer treatment, and I discovered my plumbing wasn¡¯t up to the task. He got things back on track.

MD Anderson audiologists also found that the total hearing loss in my left ear ¡ª which I¡¯d always thought was from too much loud music and heavy machinery ¡ª was actually something I was born with. They corrected the slight hearing loss I had in my right ear with a hearing aid, too. So, I¡¯m better off now than I was before I had cancer.

Team of experts makes all the difference

A lot of places don¡¯t think about things like that. Or, patients are expected to go out and find a specialist themselves to address particular issues. At MD Anderson, they¡¯re all under one roof. And they think about your situation from every angle.

I¡¯m retired now, but I spent my career leading large teams in university facilities management. I was blown away by how everyone comes together as a team at MD Anderson. Even with the really small stuff, like waiting for an elevator, MD Anderson shines. You¡¯ll never get on an elevator after anyone wearing scrubs or a white coat there because they stand aside and let patients board first. That level of customer service would make anyone proud.

My life after completing salivary gland cancer treatment

Thanks to MD Anderson, I¡¯ve shown no evidence of disease since I completed seven weeks of chemotherapy and proton therapy on March 10, 2020. I never did need surgery. And I have almost all of my sense of taste back.?

Fatigue and oral mucositis were the worst of my side effects. But I¡¯m almost back to normal now. I did the stretching and swallowing exercises my physical therapists gave me, so I can still eat whatever I want, as long as I drink water.

That¡¯s why I tell everyone to go to MD Anderson now.?

Hearing that you have cancer can be overwhelming. But take a deep breath. Then, do whatever it takes to get to MD Anderson. Because if you¡¯re there, you can trust that you¡¯re at the absolute best there is.

or by calling 1-877-632-6789.

Cancer of the salivary gland is not very common. Only about 2,500 cases are diagnosed in the United States each year.

So, how do you know if you have salivary gland cancer? Will you suddenly start drooling or have a really dry mouth? How is salivary gland cancer usually diagnosed?

We went to head and neck surgeon , for answers.?

What are the symptoms of salivary gland cancer?

Out in the wider world, patients usually go to their doctors because they have a lump that they can see or feel. It might be under their jaw, on their cheek or behind their ear.?

But here at MD Anderson, most cases of salivary gland cancer are found incidentally, because our patients are getting CT scans for some other reason.?

Salivary gland cancer almost never has symptoms, but the high-grade aggressive types can get big fast. Since they¡¯re occurring in a confined space, there may be some discomfort associated with the growing mass. Someone¡¯s ear might feel full, for example, or their jaw might feel tight. But the mass itself is not usually painful.

How is salivary gland cancer diagnosed?

Imaging tests like CT scans, MRIs or X-rays can indicate if something is ¡°likely cancer¡± versus ¡°not cancer.¡± But most salivary gland cancers will require a biopsy ¡ª the removal and examination of a tumor¡¯s cells under a microscope ¡ª to make an exact diagnosis.?

Here at MD Anderson, we almost always do an ultrasound-guided fine needle biopsy to make sure we¡¯re getting a sample from the most at-risk site. This type of biopsy is not as accurate as it is with other types of cancer. So, it¡¯s really important to go to a place with experienced technicians, like we have here at MD Anderson. Nationwide, the accuracy rate for this method of salivary gland cancer diagnosis is about 75%. Ours is much higher, because we have so much more experience in diagnosing this disease.

You¡¯re also very rarely going to see a change in your salivary cancer diagnosis or get bumped up to a higher stage of disease if you come to MD Anderson first. Our pathologists see so much of it that they know exactly which features to look for in the cells on the slide to get an accurate diagnosis. When people come here with biopsies from other hospital systems, that¡¯s not always the case.

Are there different types of salivary gland cancer?

Yes, but the frequency with which they occur depends largely on their location. Most salivary gland cancers occur in the parotid glands. Those account for about 80% of all salivary gland cancer diagnoses. The next most-frequent location is in the submandibular glands. The remainder usually occur in the minor salivary glands inside the mouth.

The most common type of parotid gland cancer is called mucoepidermoid, followed by adenoid cystic. Acinic cell carcinoma, meanwhile, is a distant third.?

With submandibular glands, though, the order of the first two diseases is reversed, so adenoid cystic is the most common there, followed by mucoepidermoid.?

There are other types of salivary gland cancer, but they¡¯re all considered really rare.?

How many salivary glands do people have?

Humans have three major and several minor salivary glands. The big three are:

1. Parotid glands ¡ª Shaped kind of like giant apostrophes, these extend from just in front of our ears down to the base of our jawbones on either side of our heads.?
2. Submandibular glands ¡ª These are found just below the edges of our jaws near the neck.?
3. Sublingual glands ¡ª These are located underneath our tongues.?

The remainder are all considered minor salivary glands. They¡¯re much smaller than the others and are scattered around the inside of the mouth.?

Are there any red-flag symptoms of salivary gland cancer that should prompt an immediate doctor visit?

Yes. Adenoid cystic carcinoma has a tendency to invade the nervous system. This can lead to facial pain or paralysis. Both are pretty ominous signs, so if you ever experience unexplained facial paralysis or nerve pain, you should definitely be examined by a doctor quickly ¡ª preferably an ear, nose and throat specialist, or ENT.

Are there any other conditions that can mimic salivary gland cancer?

Yes. Bell¡¯s palsy (a sudden drooping of one side of the face) and trigeminal neuralgia (sudden facial pain) can both be confused for salivary gland cancer. But both of these are considered ¡°diseases of exclusion.¡± That means they¡¯re often diagnosed only after all other likely possibilities have been ruled out. There¡¯s no test or biopsy you can perform to definitively diagnose either of those conditions.

It¡¯s also possible to have skin cancer that has metastasized to the parotid gland. When you find a cancerous lymph node that¡¯s just embedded in a salivary gland, but the gland itself appears unaffected, it almost always comes from a skin cancer that originated somewhere on the head or neck.??

How is salivary gland cancer usually treated?

Unless a salivary gland cancer is widely metastatic, the majority of patients with high-grade (or more aggressive) tumors are treated with surgery and radiation therapy. Low-grade (or less aggressive) cancers usually only need surgery.

Chemotherapy has not traditionally worked well against salivary gland cancers. But some patients with very high-grade salivary gland cancers do better with chemo-radiation (chemotherapy and radiation therapy administered together) after surgery than they do with radiation alone.?

All patients with salivary gland cancer should have a multidisciplinary workup before starting treatment. That means having scans taken of the neck and chest to determine if the cancer has already spread to other locations, and staging the cancer based on those findings.?

It also means meeting with a radiation oncologist, a surgical oncologist and any other specialists needed to determine the best possible treatment plan.

And at MD Anderson, it means checking for certain genetic mutations that could make patients eligible for targeted therapy. Some really rare and aggressive, very high-grade ductal cancers can carry markers like those found in breast cancer. But that type of testing can only be performed right now on the tumor tissue itself, once it¡¯s been removed, so everything starts with surgery.

Are there any clinical trials available for salivary gland cancer treatment?

Yes. As I mentioned, normally we have to wait until a salivary gland cancer is removed surgically in order to test it for genetic mutations. That¡¯s because these glands can contain so many different cell types, including ductal, acinar and squamous.?

Now, new clinical trials are being developed to improve outcomes in high-risk cancer patients. The goal is to see if we can get better results for these patients by administering targeted therapy before surgery rather than after.

What¡¯s the most important thing people should know about salivary gland cancer??

Don¡¯t panic if you find a lump in one of the areas I¡¯ve mentioned. Roughly 80% of all salivary gland tumors are benign, meaning they are not cancerous.?

But salivary gland cancers are not the same thing as swollen glands or infected lymph nodes. So, don¡¯t just sit on this and wait months to be seen by a doctor if you find a lump. If it doesn¡¯t go away within two to three weeks, get evaluated by an ENT.

or by calling 1-877-632-6789.

I¡¯ve been struggling to make myself understood ever since I was a senior in high school. In April 1985, I was diagnosed with stage III nasopharyngeal carcinoma (a rare type of throat cancer). And for a while, my throat was so raw and painful from the radiation treatments I received that I didn¡¯t want to talk.

Those radiation treatments gave my voice a very ¡°nasal¡± quality, too, so it was sometimes hard for people to understand me when I finally did start talking again. Around the year 2000, I started having more trouble speaking due to the radiation treatments I¡¯d received as a teenager. It became even more challenging in September 2016, when I was diagnosed with stage II salivary gland cancer. I had surgery and more radiation to treat that. Today, I am cancer-free, but I¡¯m still struggling to be heard.

Learning new ways to communicate

Speech without proper tongue movement is almost impossible. And speech therapy doesn¡¯t help much when your tongue isn¡¯t fully functional. So I carry a notepad with me wherever I go, and sometimes, a dry erase board. Because after the last round of surgery ¡ª during which removed part of my right thigh muscle and two arteries from my left hand/wrist to repair my neck ¡ª the back, right-hand side of my tongue stopped working.

I can still talk aloud, but my speech is becoming even harder to understand, and Dr. Weber says it will likely continue to deteriorate. So, when a person can¡¯t figure out what I¡¯m trying to say, I just take a deep breath and write it down.?Talking on the phone is almost impossible, so I text a lot, too. And I¡¯m thinking about learning American Sign Language, since I already sign, ¡°I love you,¡± to my son and grandsons.

Why I¡¯m sharing my story

Sharing my story is how I feel I can best use my voice to make a difference right now. So I¡¯m telling it here and connecting with other cancer survivors online. I started a social media support group in Ellis County in September 2017. It currently has 63 members, and some of them don't even live in Texas.

Most group members send me private messages to ask questions. I try to be their cheerleader and offer encouragement. And if they ask me something I don't know anything about, like breast cancer, I'll ask another member to step up and answer their questions.?

Counting my blessings

I¡¯ve always tried to stay positive throughout my cancer treatment, because the truth is I am blessed. My doctors told me I¡¯d probably never have children, but I got pregnant in early 1992. My son, Layne, was born that October. He¡¯s 25 now and has given me two wonderful grandsons: Gavin and Gaige.

The cumulative effect of my cancer treatments has left me unable to swallow properly. So, I haven¡¯t eaten or drunk anything by mouth in 14 months. Even water makes me choke. And speech continues to be a challenge.

But I look at it this way: I¡¯m still alive. And I¡¯m better off than a lot of other people. I have a fabulous family and really good friends. I am truly blessed.

I¡¯m not sure what my current purpose is. But I do know I will find my way. And if, by going through this, I can help other people, it will all be worth it.

or by calling 1-877-632-6789.

?

When I had an earache for a couple of weeks in August 2007 and couldn¡¯t sleep on my right side for very long, I went to my primary care doctor. She told me I had an ear infection. I was given antibiotics and sent home. After a few weeks, I noticed a knot in my cheek, and it got even harder to sleep.

I thought something else was wrong.

My salivary cancer diagnosis

I was diagnosed with adenoid cystic carcinoma, a type of salivary cancer on Oct. 10, 2007. I was emotional about my diagnosis, but I knew that I needed a plan to move forward.

I received my diagnosis at another hospital, but I felt like I needed to go elsewhere for treatment. I wanted to feel confident in my care and know that my doctors cared about me as a person. My husband asked me, ¡°Why aren¡¯t we getting you treated at MD Anderson?¡±

As an MD Anderson employee, he knew I¡¯d receive attentive and specialized care. MD Anderson, he said, would give me the best chance to survive.

My salivary cancer treatment at MD Anderson

I first met with my MD Anderson care team on Oct. 29.

On Dec. 6, I underwent a tracheostomy and mouth reconstruction to remove my tumors and rebuild the floor of my mouth.

Before my surgery, I was a nervous wreck. I really appreciated physician assistant Rolando De Luna for how calm he kept me. He talked to me for 45 minutes the night before to help me get into the right mindset.

After I had three tumors removed, my plastic surgeon, , took tissue from my left forearm to create a flap in my mouth where the tumors were taken out. I lost my voice for a few weeks.

About a month later, I started six weeks of daily radiation therapy under the care of .

After my radiation therapy sessions, I headed to physical therapy to rebuild strength in my mouth and neck, and speech therapy to learn how to talk again.

During that time, I used a dry erase board to write down my feelings and communicate with my family and doctors. I also wrote jokes to keep things lighthearted.

My family was my always there for me

From the time I was diagnosed, I was blessed to have an amazing support system ¨C especially in my husband and daughter. Both of them were a godsend.

My husband Michael reassured me that things would be OK. My daughter Chelsea, who was 16 at the time, helped me watch out when I was eating things that might hurt my jaw and throat. She also did housework without me even asking. Before my diagnosis, she was living with her dad, but cancer brought her back into my life. That¡¯s one of the things I¡¯m most thankful for.

Hope even with a recurrence

In 2014, the knot in my cheek came back. Thankfully, it¡¯s benign, but I return to MD Anderson every year to monitor it. It helps that I now work at MD Anderson, so I can easily come to my yearly appointments.

Life is a little rough with cancer, but my experience made me appreciate my life and the people in it more.

I have three new grandsons and new perspectives that have helped me grow and learn how to be a better mom. I celebrate everything that can be celebrated. Everything is just a lot brighter.

When you find out you have cancer, it¡¯s like you lose your breath. But now I can tell cancer, ¡°You did not get me. I got you.¡±

or by calling 1-877-632-6789.