Pain after Surgery for Tongue Cancer

cancerx6

Hello,
I have been diagnosed with tongue cancer three times. The first time was a stage 4 and I chose to have chemo and radiation rather than lose 3/4 of my tongue. That was in 2008. I wonder if I made a mistake. However, it is too late to have regrets.

In the summer of 2011 I was diagnosed again with cancer under my tongue. I had surgery and the right side of my tongue was attached to the floor of my mouth. Two weeks later I went on vacation with my family and was fine.

My daughter was due to have her first child - my first grandchild - this past September. In late July I had symptoms on the left side of my tongue that made me realize the beast was back. I held off treatment because I wanted my daughter to have the baby with no stress. At the end of August I couldn't hold off any longer and saw my ENT oncologist. He agreed to let me wait until the baby was born but scheduled surgery for September 17. My beautiful grandson was born September 4. My surgery went well - they got clear margins. They removed a thumb nail size portion of my tongue. Almost 5 weeks post surgery I am in a good deal of pain - tongue, mouth and ear. My ENT says it is normal but I wonder if anyone has been through this and how long I will be on medication and not able to eat. I would appreciate any input as to how to deal with this situation.

Thanks so much.
Theresa

CivilMatt

pain control
Hi Theresa,

I had the tongue (and neck) surgery along with rads and chemo, but never had any uncontrolled pain. I was always able to control what pain I had with pills or liquid hydrocodone . I never tried to tough it out. I know it made me sleepy and maybe you can not afford that (you are busy). It does get better fast and you should be able to swallow (small portions) of food soon. Are you drinking protein drinks for nourishment?

Best,

Matt

longtermsurvivor

my pain
with this type of surgery was fairly well controlledon percocet. I just suspended it in water and drank it. Everyones pain experience is different, but I wiuld expect you to be quite ambit better pretty soon if you are five weeks out.

Pat

Delora

HI. I also had tongue cancer surgery a little over six weeks ago. Part of my tongue was removed and all margins were clean . I still have a lot of stingy pain and also see blisters and ulcers? on the tongue appearing out of nowhere (it seems). The nurse at my oncologist's clinic also says this is normal (although she at first said it would take 4-6 weeks for the pain to go away) . However the persistent pain is very discouraging. I can eat, but it is painful. IS this normal? how long does this pain last? I fear I will never get rid of the stingy feeling. please help!

Any advice or help from anyone would be useful for me.

wbcgaruss

Hello Delora and welcome to the CSN H&N discussion board.

I also had tongue cancer and part of my tongue removed. I am not sure the exact amount of time involved to be pain to be gone completely as I didn't mark it down anywhere. All I can tell you is all our cases are different and can be generalized but can be unique. I also saw what I guess were blisters or ulcers after the operation and it was very concerning and I called my ENT's office and was told that the way it looked was normal so I just stopped looking at it and I think I was rinsing with salt and baking soda mix at the time. So it may take a bit longer for your case to resolve but I know mine did and I was back to a new normal with not much change just to this day some numbness on the side of the tongue where the operation was done. I think this is a difficult area so just be patient because there is no set time for recovery only estimates and each case is different.

Anyway recovering from cancer treatments of the head and neck is a slow procedure and takes a bit longer than healing from many other things, so be patient, keep your mouth clean to avoid infection and I will post rinse recipes down below. There are a lot of nerves in the tongue that could be disrupted right now due to your surgery and these will also take a while to resolve. I am also going to post a couple of links to information and I hope that helps.

Also if you think there is anything seriously wrong please call your doctor's office and get in and get checked. Even if it is a false alarm it is better to be safe than sorry in these situations.

Tongue Surgery Post Operative Instructions...

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

Info from St. Josephs...

https://www.stjoes.ca/patients-visitors/patient-education/f-j/PD%203215%20Partial%20Glossectomy%20Surgery.pdf

Wishing You The Best

Take Care, God Bless

Russ

Salt and Baking Soda Rinse Recipes

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.