Hi,
I had Stage 1 SCC surgically removed from the underside of my tongue 6 weeks ago. I am told it was caught very early and no further treatment is needed at this time. I am grateful for this as I am very fearful of medical procedures. PET scan after surgery showed no indication of cancer. I did have a mild case of COVID in March and PET scan showed some evidence of COVID changes to lungs, which I didn’t expect because I didn’t think I was that sick. I wonder if COVID affected my immune system’s ability to fight the cancer. I know it delayed my ability to seek care for it.

Surgeon (ENT) plans to see me for follow up exams every three months for the next three years. If cancer comes back, plan is surgical removal and radiation. I am very fearful of cancer returning and need for further treatment. I have a great deal of anxiety about medical procedures.

Incision healed well, but about 2/3 of the right side of my tongue does not feel temperature of food or drinks and has no taste. Also has what feels like a constant burning sensation, which I believe is from nerve being affected by surgery. Dr. Says it indicates nerve is healing and it can heal for up to six months and then I will know what final outcome is.

Has anyone else had the burning sensation of the tongue after surgery? Did it go away over time?

So glad I found this forum. Have been looking for a local support group without success and feel very alone.

Hi!

I have had 9 surgeries over the past 11 years for SCC of the floor if my mouth and lateral tongue. Until last year these were all for stage 1 tumors or severe dysplasia. Initially I had a burning sensation in my tongue as the nerve healed. It took at least six months to calm down. After subsequent surgeries I've lost most of the feeling in the tip of my tongue. I also periodically experience pain or discomfort in the floor of my mouth from scar tissue tightening. Doing stretching exercises where I pull my tongue to stretch the floor or massage with a finger to stretch the floor alleviates this.

I found that part of the trigger for my cancer was silent reflux. I was having reflux without the heartburn that typically accompanied it. I have gone on a low acid diet which has been tremendously helpful.

I hope your recovery continues to go well and that you are able to beat it with this round.

All the best!

Hi Cao

Welcome to OCF and so pleased you caught this early. I had surgery April of 2020 (removed half my tongue and rebuilt it with flesh from my arm) and radiation (60 Gy) thru July of 2020 for Stage IV tongue cancer, squamous cell carcinoma. I have noticed improvement slowly over the months. I initially had much difficultly manipulating food, even simple food. And, I could not take anything spicy or acidic. Now, I can eat oranges again, pineapple, chips, guacamole (if plain), etc. I can manipulate complex foods such as salads, pizza, etc.

As for nerve damage, yes, I still occasionally notice small issues even over a year later.

As for possible future procedures, best we can all do is eat right, exercise, pray, reduce stress in our lives, etc. I do recommend a book called AntiCancer. Packed with all kinds of research and information about how to live towards a cancer free life.

Best wishes for a continued successful recovery.

Nels

Nels, Catherine,

Thank you so much for your replies and sharing your experiences. It is very helpful to know that I am not alone.

Best,

Colleen

Colleen: Was the cancer from HPV? If not, I have been advised that even small amounts of alcohol will cause the cancer to return (other things can do it too).

Not sure if they tested for HPV. Doctor didn’t mention it. Plan to ask if it was tested at next follow up appointment. I rarely drink, 3-4 drinks a year at family celebrations, but will avoid alcohol until I discuss with doctor. Thank you for the advise.