Early Symptoms Of Tonsil Cancer + Treatment Tips

The early symptoms of tonsil cancer can be vague, but as with any cancer, early diagnosis can improve your chance of survival. Today, I’m sharing my story, advice, and tips on navigating cancer treatment.

On January 11, 2023, I walked into the dentist’s office thinking I was there to have my tonsil drained. Within five minutes of sitting down, I went from being nervous about a dental procedure to being told that I had a malignancy. For me, the early symptoms of tonsil cancer looked like a stubborn case of tonsillitis.

After the words came out of his mouth, I remember sitting there with so many thoughts swirling through my head that I couldn’t speak. Finally, I said, “You mean cancer,” and honestly, I can’t remember anything he said after that. Fast-forward two weeks, I received an official diagnosis of Invasive Squamous Cell Carcinoma of my tonsil that had spread to three lymph nodes.

The Day I Was Diagnosed With Cancer

I texted my husband first. He was in Iraq at the time, and we talked and cried on the phone while I sat in the hospital parking lot. With the exception of my husband, the only other people who knew were my best friend and sister. I had already decided not to tell my kids until I had answers. The waiting is brutal, and I didn’t want to put that burden on them.

Like so many others newly diagnosed with cancer, I went down the Google rabbit hole. I also joined a couple of Facebook support groups, and I can confidently say that you shouldn’t do either.

Google is riddled with misinformation, and even the “experts” disagree, leaving you even more confused and scared than you already were. Seriously, as hard as it may be, stay off of Google!

While I did receive some helpful information in my support groups, the people in these groups represent a small percentage of patients, and most active members are still suffering. Those who have recovered rarely return. These groups are not always a positive place, and it affected my mental health.

Early Symptoms Of Tonsil Cancer

Some people experience a sore throat, ear pain or fullness, jaw stiffness, a painless neck lump, and mouth sores. Others have no symptoms at all. The symptoms can be vague and easily missed or thought to be something else. No one thinks, “I might have tonsil cancer.” I had never even heard of tonsil cancer before my diagnosis.

If you’re here, I can only assume you or someone you love has been recently diagnosed. First, I am truly so sorry. Hearing you have cancer is something no one ever wants to hear. It’s shocking and terrifying.

Feel your feelings. Cry it out, yell it out, and allow yourself to feel your feelings. I went through the whole gambit of emotions and ultimately asked my doctor for a prescription for Xanax. As someone who rarely takes medicine, that says a lot about where my mental state was. I only took it for about a week, but it helped me get through the initial shock of my diagnosis. I also took it the first few days of radiation because no one prepares you for how tight that mask is. (see photo below)

You don’t have to be strong. Once you’ve received your diagnosis, it’s life or death, and your emotional, mental, and physical health come first. Set boundaries. Everyone will want to come see you and do everything for you. I didn’t want any of that. I wanted solitude. The only people I wanted to be around were my husband, children, and grandchildren, and I made no apologies for that.

Know that you will get through this. Tonsil cancer is survivable, depending on the type you have. The treatment sucks, and there’s no sugarcoating that, but you will get through it.

Tonsil Cancer Treatment

This is the first in a series of posts that I hope will help anyone going through chemotherapy and radiation, not just tonsil cancer patients. My treatment lasted seven weeks, with radiation every day and a massive chemo infusion every Friday.

I was blessed to be treated by the best of the best at Vanderbilt, but I’d be lying if I said I didn’t agree with some of the advice I received. I believe there is a big disconnect between traditional medicine and nutrition. My next post will be about nutrition, specifically high-calorie, soft food meals. I avoided a feeding tube with these recipes. In fact, I might be the only cancer patient who actually gained weight because I was too good at getting calories, lol!

For now, I want to share some of the things that helped and what I learned along the way. The side effects and symptoms of tonsil cancer treatment are similar to those of any cancer treatment. Share this with anyone you think it may help.

Please remember that many things can interfere with chemotherapy and radiation, and you should discuss anything you want to try with your doctor. These are in no specific order.

Have Someone With You

• The first few weeks after diagnosis will likely be nonstop doctor appointments, and they will throw a lot of information at you. It’s overwhelming and impossible to remember everything they say. Bringing a small notebook helps, but having someone with you is better. You will need emotional support. My husband went to every appointment with me, and we would go over the questions I wanted answers to on the way to the appointment. If I forgot something, he would step in.

It Will Be Chaos In The Beginning

• The first week of treatment was chaotic. I underestimated all of the things that I needed to take with me every single day. Getting out the door was stressful, and I am basically Monica from Friends. I don’t do well with chaos, so I bought a backpack with several pockets and compartments. It held everything I needed and was the only thing I brought daily. They even have lightweight backpacks with coolers that hold snacks and drinks, which you will want to have with you, especially on long chemo days. A backpack with a charging port is one less thing to remember. When you’re in pain and don’t feel good, anything that makes life easier is appreciated.

Stay Organized At Home

• You will have a lot to keep track of at home. At one point, my kitchen counter was in complete chaos, so I purchased an over-the-door hanging shelf, which worked perfectly hanging on the pantry door. It helped to have everything I needed in one organized place.

Get Metal Fillings Removed!!

• I didn’t and had a HUGE cheek sore throughout treatment and for weeks afterward. It was THE most painful thing in my mouth and the reason for many tears. The doctor confirmed it was caused by the radiation bouncing off the metal onto my cheek.

Wear Comfortable Clothes

• The last thing you want is to feel uncomfortable on top of getting chemotherapy and radiation. Comfortable clothes are a must. I found some cheap joggers at Sam’s Club and bought five pairs, one for every day of the week.  It can also be cold in the treatment room, so I always had a sweater in my bag. They will also provide blankets, of course.

Disposable Cups

• You’ll be rinsing your mouth several times a day, even when you’re not at home. Sometimes, you won’t be near a bathroom, and there will be nowhere to rinse and spit. I bought small, disposable cups with lids and cheap napkins that I kept in my backpack. I could discreetly do what I needed to do with no mess.

Stay On Top Of Thrush

• One of the symptoms of tonsil cancer treatment is thrush, so knowing the early symptoms and alerting your team is important. It can really affect your taste and healing. I started Nystatin at the first sign of thrush and used it until two months after treatment. When it began to burn my mouth, I would hold it only on my tongue (where thrush typically starts) for 60 seconds, spit most of it, and swallow the rest. I would not eat or drink for 30 minutes. 

Be Gentle To Your Mouth

• Your mucosal lining is fragile, and even a slightly too-hot beverage can result in a significant setback. Your team will provide treatments to help with mouth sore pain. Some will work, and some won’t. Some burned my mouth, and I immediately stopped it. Stay in constant contact with your care team. They can call you in something else.

Get A Cool Mist Humidifier

• I used a cool-mist humidifier from day one. It saved me from severe dry mouth and thick mucous. Speaking of mucous, start Mucinex before treatment and take it daily until your mouth begins to heal. It thins out secretions and can help significantly with mucous, which can be so bad that some patients choke on it.

Baking Soda Gargle

• Mouth sores can happen to anyone but are significantly worse in head and neck cancer patients because they are literally radiating the inside of your mouth. They will recommend gargling with a mixture of baking soda and salt. It’s a gentle and effective way to control the bacteria in your mouth, thus helping prevent and heal mouth sores. Do it, and do it even more than they tell you. I gargled baking soda and salt water so many times a day. It is THE most gentle way to keep your mouth clean. I used high-quality Celtic sea salt to get even more benefits from this.

Aloe Vera Juice

• Aloe vera juice made all the difference for me. Several times a day, I drank 2-4 ounces, held it in my mouth, and swallowed slowly, allowing it to coat my throat. I didn’t eat or drink for 30 minutes afterward. It doesn’t taste great, but you’ll likely have lost some of your taste anyway. Aloe is incredibly healing, kills bacteria, and is an anti-inflammatory. You must use one without added citric acid, which can burn your mouth. I loved this brand because it had a consistency somewhere between juice and a gel, so it coated my mouth without being so thick that it was unpleasant to drink.

Appreciate Little Wins

• Some days, I couldn’t eat much of anything. Others, I could enjoy my favorite smoothie from a local shop. Some days, getting through radiation without feeling panicked was a win. I’m not claustrophobic, but that mask is tight! Take it day by day and appreciate the little victories when they come.

Get Outside

• Tonsil cancer treatment is hard physically, mentally, and emotionally, and recognizing the early symptoms of depression is crucial. Be proactive. Something as simple as going for a short walk in the sunshine can really improve your mood. Sitting all day, every day, is not good. Move your body, even when you don’t feel like it. It will make you feel better. The more you sit, the worse you’ll feel.

Alkaline Water

• I don’t know how to explain it other than it felt smoother in my mouth than regular water, which burned. The added benefit is that alkaline water can help neutralize the acid bacteria produce. You can find cheap cases of it at Sam’s or Costco. I also used this in my baking soda and salt mixture.

Slather Your Neck

• The radiation can cause your neck to be very red, as seen in the photo above. Some people burn so bad they peel. I stayed slathered with Aquaphor Healing Ointment or Egyptian Magic when I was at home, and my neck never burned. Apply it liberally! These are both very greasy and will ruin your clothes, so I bought a bunch of cheapo tanks and tees from Walmart that I could toss later. You will also need to apply cream right after radiation. Don’t wait to get home. I used Calendula cream on these days, which isn’t as greasy.

G.I. Issues

• You will be on a lot of medication, which can result in pretty severe constipation. I’ve had G.I. issues in the past, so I already knew that everything they recommended would not work for me. My holy grail product is magnesium, but not all magnesium is created equal. There are several different types, and they each do a specific thing. I used 400 – 800mg of magnesium oxide most days and never had a problem with constipation. A good probiotic is also necessary during treatment, and it was one of the things my team recommended.

Oil Pulling

• Oil pulling is an old Ayurvedic therapy for thoroughly cleansing the mouth, removing bacteria, and soothing the mucosal lining. If you have a dry mouth, the oil also adds lubrication. Keeping your mouth clean is crucial, and I found oil pulling soothing and lubricating. If it hurts to swish, do it very slowly. I used Desert Essence Oil Pulling Rinse, which has a mild minty flavor that doesn’t burn.

Not All Hot Tea Is Good

• I sipped on warm tea constantly. It’s a great way to hydrate and can be very therapeutic – but choose wisely. Teas high in tannins (like green and black) are more drying, and tonsil cancer can cause severe dry mouth. Some tea can exasperate the problem. I noticed this one day when my mouth was dryer than normal, and I had been sipping green tea. Look for ingredients like slippery elm, ginger, chamomile, and licorice, which all help soothe and coat the mouth and throat. I drank Yogi Tea Throat Comfort constantly. Sweeten with organic honey, which also has healing properties – and calories.

Advocate For Yourself

• Tonsil cancer is a hard treatment, and the symptoms you’ll be dealing with from all of the drugs, chemo, and radiation can be unpleasant, to say the least. Listen to your team, but also advocate for yourself. If they suggest something you’re uncomfortable with, immediately speak up. This is your life and your journey, and the time to speak up is now. My husband went to every one of my appointments, and if I forgot to ask a question, he was my backup. In my experience, your team is happy to do anything that makes you more comfortable.

Everyone Is Different

• There is no right or wrong. What helps one person may not help another. I can’t tell you how many things were recommended by people in my group that did not help me at all. These people weren’t wrong. They were trying to help, and I deeply appreciated it. I hope that some of the things from this list help you, and know you are not alone. I am here for you, and you can contact me at one of the links below ♥

Be Grateful

• Tonsil cancer is one of the hardest cancers to treat, but the tradeoff is that it’s highly survivable. Remember that. Even on my worst days, I said what I was thankful for out loud. I could still taste a hint of sweetness and was thankful every morning that I could still enjoy my coffee. It was lukewarm, but I didn’t complain. I was just GRATEFUL that I could taste something!

What were your early symptoms of tonsil cancer?

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