Has anyone had squamous cell carcinoma at the base of tongue?

Many community members have faced this specific diagnosis and understand the weight of receiving these results. Getting a second opinion is a wise step, especially when treatment recommendations feel overwhelming or when there are questions about the best approach. The combination of chemotherapy and radiation can be effective for tumors in this location, and connecting with others who have walked this path can provide valuable insights and support. Consider sharing more about your journey as you navigate these decisions - this community has members with similar experiences who may offer perspectives that could be helpful.

I completely agree that getting that second opinion is so important, and you might also want to ask about the specific experience each doctor has had treating tumors in this exact location - it can make a real difference in your comfort level with the treatment plan. My ENT offered me surgery and I declined as he said he would be removing my tung and this would leave me without a way to talk. Then he said surgery or not the next step would be chemo and radiation anyway. Both really suck and now a year and 4 months and radiation negative stuff still not finished messing me up. I had to have my teeth pulled as they said the radiation would make it impossible to have dental done after. Had all but 9 front teeth removed before radiation and not a year after treatment stopped I have a hole in my mandrill that has been producing puss and draining through the skin for almost 8-9 months as the infection eats my jawbone. Now trying to figure out if I should have the recommended surgery. One of my Drs asked me if I would be ok with the disfigurement and I’m not sure it’s worth it.

I too was diagnosed mid year 2025 of SCC in the left lingual tonsil and was told surgery would not be the first treatment option as I would lose a fair amount of my tongue and the ability to speak. I underwent 35 rounds of radiation and 5 of 7 chemo treatments. The type of cancer it is can help determine the effectiveness of the treatment, specifically if it HPV 16+, the it is more susceptible to this type of treatment. I completed my treatment last October and my follow-up PET scan is promising of the treatment. I will get another one in June for final clarification. I seemed to do ok with the chemo but the radiation kicked my butt and I ended up in the hospital for 12 days to get my nutrition levels up as I wasn’t able to eat and then get a feeding tube inserted. I had it for four months and am now off of it and still learning to re-eat certain foods. Best wishes for your treatment.

Thank you for sharing with me. This is all happening so fast. I saw my medical oncologist this week. He gave us a ton of info. I like him a lot. He gave me a script for gabapentin and I finally can swallow!! It does make me dizzy though. I had my PET scan this morning and got results on my chart this evening. The tumor has grown like I thought. It’s bigger since the ct scan I had 2 weeks ago. Very scary! It has spread to a few lymph nodes but that’s it. The rest of my body is clean. So now I wait to start 6 and a half weeks of radiation and 3 rounds of chemo.

Be sure to follow the guidance of your radiation oncologist (and medical) as the treatment causes various issues. You’ll need to use a cram on your neck for the “sun burn” you’ll get. Try to eat as much as possible because you will not want to die to the pain and possibly because of the tumor itself is causing issues and if you do end up getting a feeding tube, know it’s not the end of the world. It is a blessing to have when you can’t physically eat. Best wishes.

Thank you Troy for your info. God bless you

Update I opted not to have the tongue surgery. I will be having 7 weeks of radiation and 7 rounds of chemo. That being said, I am having 8 teeth plus a bridge removed surgically on Monday. A week after that I get my radiation mask made followed up the next day with getting a port put in as well as a feeding tube. I had gastric bypass surgery a few years ago so we will see how this pans out!!