tongue cancer

Delora

hi. I am new to this . I was diagnosed with tongue cancer in early August. 2023. I had surgery to remove a lesion of my tongue Sept. 14th. I am still, after almost three weeks, having a lot of pain on my tongue, especially when I eat (I lost weight and need to gain weight) I cannot toleratel meds so for now I just can take tylenol which does little to relieve the pain. I am not getting further treatments, since the cancerous growth was removed - just scans and followups in three months.

I feel OK, other than the pain which makes it difficult to eat.Has anyone had pain for so long after surgery?

I appreciate any advice or informtaion about this. thanks!

wbcgaruss

Hello, Delora, and welcome to the CSN H&N discussion board. Sorry you have to be here but I hope you find the help you need.

I did a search and found this on the internet--

Pain will be present for at least 7-14 days following surgery, but it should improve around two weeks following surgery.

https://med.stanford.edu/ohns/OHNS-healthcare/sleepsurgery/treatments/tongue-surgery-postops.html

Also here is an article from Cedars Sinai--

https://www.cedars-sinai.org/health-library/diseases-and-conditions/t/tongue-cancer.html

I had a small piece of my tongue removed and I am not sure how long any pain lasted. I do not recall it being so severe after 3 weeks that I could not eat though. But each case and person is different. I(t may depend on how large a piece was removed or the area of location. Are you saying the pain is as strong as it has been for a while and has not diminished at all? I would think by now you would feel it lessening over time somewhat. Have you asked your care team about this, if you feel something is not right get an appointment with them as soon as possible and have it checked out? It is better to be safe than sorry when dealing with cancer and or a possible serious situation like you have. There may be nothing wrong at all it is just your situation takes longer to heal but get it checked to be sure that's what your care team is there for to get you through this and answer any questions you have.

Apparently your ENT, surgeon, or whoever did your surgery and feel they have clear margins. I was in the same situation and a year and a half later I ended up having lymph node cancer. my ENT operated with clear margins and was trying to avoid radiation because of previous radiation I had. I ended up at a major hospital and they felt it was an errant cancer cell or cells that traveled to the lymph node. I would say if you have never had head and neck radiation before I would ask your care team if it would not be a good idea to do follow-up radiation treatment and maybe a little chemo. That's what follow-up radiation and possibly chemo or not does it is a mop-up operation to get any errant cancer cells that may have been missed in the operation, no fault of the doctor cells are too small to see.

I think part of the problem is you can't take stronger pain meds my ENT gave me pretty strong pain meds and I have no trouble with them.

So the sites and info I can find is saying up to 2 weeks but you are at 3 but may still be in the range depending on your operation.

So I would get in and get it checked and ask about follow-up rads and chemo. At least if everything is normal as far as you are concerned it will just take a little more time. Like any operation, infection is a possibility so you may have a small infection that can easily be taken care of with a round of antibiotics.

You say they are going to do scans and they should be doing them for at least a year or more. They usually order them every three months right after and then 6 months following that and if they feel you are cured they will still probably have you keep getting CT scans with contrast of the H&N area and a chest scan every year. The reason for the chest scan is that is a place H&N cancer tends to travel to.

I am not trying to alarm you with any of this just letting you know what to consider, at least for now.

Our Motto-NEGU (Never Ever Give Up)

Wishing You the Best

Take care, God Bless

Russ