Tongue Cancer: What are my treatment options?

Thank you. I will start with saying that the end result, in my case, negated any undesirable side effects during and after the treatments. I will start with the positive news. I had no issues with my gums and my teeth. As long as your husband has an exam and gets a fluoride treatment before radiation/chemo treatments start, and takes time to brush and floss during treatment, I think he will be okay.
I assume he will have 35 radiation treatments and chemo treatments once per week (like mine). If so, he probably won't experience and severe symptoms for the first three weeks or so as long as he takes the prescribed medications for nausea and constipation. After three weeks, he may start to experience symptoms such as a sore throat, dry mouth, and loss of taste. This probably will impact his ability and desire to eat solid foods. For me, I couldn't stand the taste of any solid foods and survived on nutritional drinks (as least for a while). The other symptom I experienced was a constant buildup of mucus in my throat that made me have to spit and cough continually. Pretty gross! This was kind of unexpected for me as this side effect was not explained to me before treatments. For me, it was the worst of all the side effects. Eventually, I learned to sleep sitting up and that helped. Also, there are medications you can take for throat pain and that helps as well. Again, for me I ended up with a feeding (PEG) tube. As bad as that may sound, it was literally a life saver for me to get the nutrition I needed to survive as I lost 40 lbs. and was weak from not being able to event drink my nutritional shakes at the worst point. I hope I am not frightening you as this is not my intention. I hope your husband doesn't experience any of these side effects or he may have different ones but wanted you to not to be surprised going into the treatments. The bottom line is that as bad as the side effects seemed, it is for a relatively short time and have him keep his eyes on the end goal.... eliminating cancer.
I am six weeks out from my last treatment and my throat is almost pain free, I can eat solid food again and my taste is coming back. Of course, the best news is my CT scan was "clean". I've only got my PET scan to go as evidence of my remission!
A couple of recommendations: 1. Have him get a port-a-cath implanted right away before chemo treatments (unless he doesn't mind getting stuck in his arms for every blood draw or treatment). 2. Have him take the recommended medication for nausea, etc. as recommended. It will save you and him trying to "catch up" later. 3. Don't be afraid to have a PEG tube implanted if he is unable to eat enough. 4. In his darkest moments, remind him about the end game. The side effects will eventually go away!
I pray your husband has great success in irradicating his cancer. I also pray for strength for you. My wife was my greatest support. Without her (and my faith in God), I'm not sure how I could have made it through. Take care!

Thank you so much for your reply and for the helpful recommendations. He is seeing the dentist specialist today and hoping his assessment gives him the all clear to start treatment. I will be by his side all the way, and encouraging him to push through. Knowing what to look out for is powerful for me. So happy for your all clear. When will they do your PET scan. I understand they have to wait for a period of time after your last radiation. Do they do CT scans along the way during treatment?

They usually wait 90 days or so after your last treatment for the PET scan. Mine will be scheduled the second week in December. I got a CT scan about 6 weeks after my last treatment as I've been told that even after your last treatment, the radiation/chemo still continues to work for a while. They want to wait until a person gets the full effect of treatment before they do the scan to make sure it has the full amount of time to kill all of the cancer cells.

Thanks for your reply. His last treatment will be Dec 16. He wants to travel mid February to our home in Mexico. I suppose it all depends on what side effects he has. Time will tell. I booked our flights, for emotional support and a goal!

Hello, I start chemo/radiation on Tuesday the 25th for HPV -16 cancer at the base of my tongue. Surgery was not an option because of the size of the tumor. Only as recently as Monday the 18th have I had any real discomfort as the tumor feels like it’s become larger in my throat. I’ll receive 35 days of radiation w/ chemotherapy once a week.
Similar to your cancer? If so, how effective was the chemotherapy (i.e. was the tumor noticeably reduced in size after any specific treatment? How long before the radiation really affected your ability to swallow? When did you have the feeding tube installed?
Thanks,
Joe S

Hello, Joe. Sorry about your diagnosis of cancer, but I will say this form of cancer has a high rate of survival after treatments.
Yes, I had HPV related cancer in the base of my tongue as well. My tongue tumor was small, so we couldn't detect a difference in size going through the treatments until I had my CT scan after treatments. However, I also had the cancer in one of my lymph nodes on my neck, and this tumor was quite large. I opted for induction chemotherapy (6 weeks of chemo) before I had my regular 35 treatments of radiation and chemo. After maybe three chemo sessions, I saw a noticeable reduction in the size of my neck tumor. By the time I started radiation, I could not detect a difference between my other neck lymph node that did not have detectable cancer and my lymph node that had the tumor.
My ability to swallow really started after 3 weeks of radiation. That is also when I noticed an increase in mucus in my throat that was very challenging. Unfortunately, it gets worse as radiation continues and also for about three weeks after the last treatment. For me, by the time I reached the 5th week, I could not swallow without choking, so I couldn't eat or drink. I was so weak that I ended up in the hospital where I received intervenes fluids and the feeding tube implanted. Really, I wish I had the feeding tube implanted much sooner. If I had, I would have no doubt avoided the hospital stay and would have felt much better. I hope this helps.
Brian C.

I have a decision to make I can get my surgery done Monday at a local hospital or I can wait to Friday to go to Sloan -Kettering or Rochester Medical Center. My surgery is just to remove a 2 mm by 1 mm squamous tumor from my mouth for I procedure like this do people think I should go to a place like Sloan Kettering ? My surgeon locally also has excellent training and did a fellowship at Duke University Hospital. He has been great and very attentive. I am thinking I will will get more time focus in upstate NY vs Sloan Kettering probably would have more patients scheduled ? What do other people think ?

It’s wonderful news that your cancer hasn’t progressed and isn’t very deep! As for delaying treatment, you have an opportunity to have this removed Monday, tomorrow! Your surgeon sounds fully capable of taking care of this small tumor for you and you sound like you have a good relationship.
If this were me, I’d get it over and done with! I think you’ll feel better having this done an not waiting, right?

I had the surgery on Monday and it went well. They got all of the cancer on the first go through which includes 1cm cancer free margins. Now l am feeling much better emotionally but in a lot of physical pain especially when swallowing I haven’t been able to eat anything yet even drinking water is a challenge I have been prescribed liquid hydrocodone which does help and I am also rotating liquid tylenol and advil. Just hoping to get through this and stay cancer free. Any ideas what to do on follow up visits to make sure all cancer is gone and how to detect early if it ever comes back ? Thanks for any recommendations or feedback on how to get through this part of it

Hi @newtonguecancer, I’m so relieved that you went ahead with the surgery right away instead of waiting. Now it’s over and the procedure sounds like a success! Except for the sore tongue…that’s going to be with you for a few days, I’m sorry to say.
Stay with your current pain regimen. The worst of the pain will be for possibly 10 days? Maybe less. But the tongue is a very tender area. You know how it feels to just bite your tongue. Fortunately the mouth does heal quickly but this is a deep wound so it might take a little longer.

Oral hygiene is crucial right now, even though putting things in your mouth feels like the last thing you’ll want to do. Soft foods, smoothies and things like that will be easier to eat for a couple of days instead of solid foods. You can try a straw for water but only if it doesn’t create too much suction when you’re drinking.

Boil a quart of water and then store that in the refrigerator. Daily you can use that water to make a salt water rinse. Let it get to room temperature and then use 1/4 teaspoon of salt to 6 ounces of water. You can use that to rinse for 30 seconds, then spit. Do that a couple of times per day.

Orajel mouth rinse with benzocaine can help numb the tongue so you can eat better.
For now, switch to a children’s toothpaste without mint. Burt’s Bees has a strawberry flavor that’s not too bad. And get a children’s extra soft toothbrush. Much easier to brush and not bump your tongue.

Regular visits to your dentist can help you look for oral cancer. Hopefully this is the end of that for you but regular checks are important. You can also do them at home with once a week or monthly checks in a mirror to note anything different in your mouth. From reading some of your previous replies, you’ve had this happen once before so vigilance is key to early detection. Report anything that looks suspicious.

Did your surgeon plan an appointment for a followup with him or tell you to see your dentist?