Tongue Cancer: What are my treatment options?

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?

After the surgery everything went well at first. Was determined that I was stage one and no spread to blood or lymph but there was perineural present. Then I went to John’s Hopkins and they recommended additional surgery to take off some remaining high grade dysplasia. Because of the perineural I was recommended for radiation. Went in today and the doctor found a swollen lymph node. This was very upsetting. Is it most likely cancer even though there was no evidence of lymph involvement on biopsy ? When I went to Sloan Kettering they recommended removing the nodes for tongue surgery but the other hospitals Johns Hopkins, university of Rochester and Bassett did not they recommended radiation. So now should I go to Sloan Kettering to get the nodes taken out if they are cancerous because he does many neck dissections there ? What are other recommendations feels now like I should have taken lymph nodes out right after I could tolerate it from tongue surgery. I am very upset again but Sloan Kettering offered to do the node surgery next Friday not sure what to do very upset !

Good morning @newtonguecancer. Oh gosh, I’m so sorry. The news that there’s now lymph involvement in your tongue cancer journey has to be so disheartening for you after all you’ve gone through so far. I’m sure you’re feeling discouraged and frightened having to face more surgery and worried that this even more invasive than previously thought.
Right now you have a decision to make whether or not to have the questionable lymph nodes removed or to have radiation treatments, is that right? Or is it too late for radiation? I’m a little confused as to why you’re switching back and forth between medical facilities to have your treatments. You had 3 out of 4 institutions recommending radiation for the perineural involvement. Did you opt not to do that? Did you go ahead with the surgery at JH to take off some remaining high grade dysplasia? Is there a reason you didn’t continue with the recommendations of John Hopkins?
If MSK removes the nodes will they also followup with radiation? You mentioned there was indication of perineural involvement. That means cancer cells have invaded the tissue around the nerves near the original cancer lesion. Even though there is was no indication in the tissue around the surgical site or lymph involvement at the time of the surgery, this can be a source of possible metastases. It would be beneficial to have the lymph nodes biopsied to see if the cancer has spread and removed as needed. But there may also be a need for other treatments as a followup because the lymph nodes are not the source of the cancer cells. (They’re the collection point). It seems that JH, University of Rochester and Bassett all were leaning towards a more preemptive approach. Did you discuss the swollen nodes with your doctor at JH?

I had both surgeries at Bassett. I did follow John Hopkins recommendations. I was going for my first radiation appointment when this was discovered. But here is a new development today I took a hot bath and the lymph node shrunk drastically in size so it is hard to even find. What I read said that cancerous nodes aren’t supposed to shrink is this true ? No matter what I agree the lymph node needs to be taken out and biopsied.

Ah, I understand now. I kept re-reading your post and wasn’t clear on who did the surgery and where you were with the radiation…if you were having it or not.
Well, that is a odd one today, but rather encouraging with the lymph node shrinking after a hot bath. From everything that I’ve read too, cancerous nodes don’t generally shrink without treatment. I wonder if you had fluid built up in your lymph gland from an infection or inflammation and it drained? That would be wonderful news.

It might be a really good idea to call the radiation oncologist at JH and let them know of this new development. See what they have to say! Maybe you can go ahead with the radiation treatments after all. Keep me posted, ok?

I noticed the date was October. It is now January 1st 2023 and wonder what you have gone through for so far. I will be having biopsy surgery next week and am interested in what my future holds.

Well I just had the second tongue surgery December 6 so hopefully it is from an infection or something. If not the gland is very new to being swollen because I just saw my Dr December 15 for follow up from the surgery. Also the pathology report showed me evidence of lymph channel involvement after my surgery. If it does turn out to be cancer it would mean that I had a level one tongue cancer only 3 mm and no lymph channel involvement that would have to have somehow gotten to the lymph node wo showing it had invaded the channel. I also had a clean pet scan but the Dr said if it was less than 7 mm it doesn’t show up. Also I was living my life normally recently and would not have caught this at all had I not been going in for my first radiation treatment. Maybe all tongue cancer surgeries should do a biopsy of some lymph nodes to be sure because this would be very hard to understand how it got through all of these pre cursors. If it is in the lymph nodes I have to decide whether to go to t to the original surgeon or one at Sloan Kettering what are your thoughts? The Dr at John’s Hopkins said I should stick with same surgeon. I certainly knowing what I know now would have insisted on a node biopsy after the surgery

What kind of biopsy surgery are you having ? The recovery from the surgeries are tough and then radiation will be hard also but need to try to stay ahead of this cancer whatever you can do.