CommunitiesOral CancerIs ear pain with tongue cancer normal or does it mean it's spreading?

Is ear pain with tongue cancer normal or does it mean it's spreading?

AC

Community Member

a month ago

Just found out Dec 2nd that I have invasive squamous cell carcinoma on my tongue. I don’t know what to expect. But I am having ear pain along with it now. So my question is have you guys had the ear pain or is the cancer spreading?

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14 comments
Comment
CA

Community Member

a month ago

Ear pain can sometimes occur with tongue cancer due to shared nerve pathways, but it's important to discuss this symptom with your medical team as soon as possible since they know your specific situation best. Many people in this community have experienced similar concerns after their diagnosis, and connecting with others who understand this journey can provide valuable support and insights.

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DE

Community Member

a month ago

I completely agree - definitely bring up that ear pain with your team right away, and maybe also ask them to walk you through what symptoms to watch for so you know what's normal versus what needs attention during your treatment journey.

AC

Community Member

a month ago

I have gotten no support or what to expect or what is gonna happen from any doctor. Only pain meds….

DE

Community Member

a month ago

For me it started with headaches earaches and sore throat. For my whole life I had not been subject to headaches they were annoying not deviating but constant with the earaches was the part that made it so concerning and my primary Dr just kept saying it’s allergies and took 6 months to get a Referal. I think Covid did more damage than just the virus it caused a lot of people to miss needed diagnosis due to fear of the virus.

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SH

Community Member

a month ago

I have been diagnosed with the same and found out in November. I am due for surgery on the 6th January. I am scared to say the least.

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DE

Community Member

a month ago

This whole process is daunting to say the least. The medical community is not setup for the patient compaction just treatment options. This is the best place to get and give input not meany filters here just fact, but you must remember not everyone has the same issues for the same condition. So here is where I am Oct 2023 symptoms started Dec 23 went in for physical and find out what was wrong, June 2024 finely referred to ent for the bad news. Oncologist came in as if was just another day and said well by now you know you have stage 4 throat cancer never looking up from his laptop. I/we did not know the state of the cancer until that moment. I was told all my back teeth need to go before treatment starts as after that can’t be removed and the radiation was going to do a # on them. So teeth gone Ent gave me options 1 remove my tongue than radiation and chemo I told him no way was the surgery going to happen he agreed as the other treatments were the best option. So radiation for 3 months about and chemo once a week for the same period. Now my tongue is dead my speech is bad and last pet scan showed cancer was back. 5 weeks now on immunotherapy and another pet scan Saturday so we will see. Sorry for the rant but this is what I had hopefully yours is better.

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CM

Community Member

a month ago

I'm a stage 4 23 year survivor never heard of ear pain but I would call your Dr.

SC

Community Member

25 days ago

I was diagnosed with squamous cell carcinoma (SCC) of the tonsils and went to Winship-Emory Cancer Center Atlanta. I had a slight ear ache but honestly didn’t know it was common with my eventual diagnosis. Honestly, the process there was fast and organized — within two days of my biopsy I had an appointment, and they lined up multiple specialists to see me all in one day. I met with an ENT, surgeon, radiation oncologist, chemo doctor, and even a dentist. Each explained their role and the possible side effects. After hearing everything, I chose surgery since the side effects seemed less severe than radiation or chemo. I made the decision on Thursday and had surgery the following Tuesday. The surgery was successful, and they also removed lymph nodes on the right side of my throat. Recovery hasn’t been easy — swallowing was tough at first and still isn’t fully back to normal after 3 months. I also developed VPI, which affects my speech, so I’ve been working on mouth, tongue, and pronunciation exercises. This Wednesday I go for my PET scan to check progress. It’s been a journey, but I’m grateful for the care team and the speed at which everything moved.

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KP

Community Member

15 days ago

Wow Amanda your the first I've heard that the same thing they want to do me thank you for sharing that I guess its time to figure out some help

AC

Community Member

14 days ago

Had pet scan. It’s just In my tongue so it’s referred pain. They want all teeth removed to start radiation. So it’s gonna be a whirl wind.

SH

Community Member

12 days ago

Yes ear pain is normal. I also had squamous cell carcinoma.

AC

Community Member

12 days ago

Does the ear pain go away? After treatments

RI

Community Member

11 days ago

Two years clean of HPV head and neck cancer and going to my ENT every visit one of the first things she would ask me is do I have ear pain

CW

Community Member

8 days ago

Okay I was diagnosed in March this year with same cancer in base of my tongue and lymph nodes. I had surgery to remove cancer in lymph nodes which sucked but not unbearable. Here is what’s going to happen, first of all this cancer is very curable. We are very lucky. Bad news is that you are about to go through pure hell on earth. Treatment of radiation (35 for me) will kill your taste buds and stop all production of saliva. Your throat is going to hurt so bad to swallow. I had 7 weeks of Cisplatin and that will make you look like death but realize even stage 4, is curable. You’ll see a ENT surgeon, radiologist, and oncologist and they will coordinate your treatment. I recommend you go on Amazon now and start buying Ensure very high calorie drinks, they will save you from having to have a feeding tube. I went from 238 down to 164. I’m 180 now and all clear of the cancer. You can do this!

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