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#202287 09-28-2025 03:46 PM
Joined: Sep 2025
Posts: 1
derf Offline OP
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Joined: Sep 2025
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I just turned 69y/o and 5 days later received diagnosis SCC on left side of tongue on 9/4.
Will get the CT scan this week, see my PCP and meet with surgeon next week. Surgery Oct 20.

Without benefit of the scan yet, the Dr estimated it could be @ a 1 inch width x 3 inch length part of tongue removed, and neck lymph nodes removed for evaluation.
I'm still working but had already planned to retire at end of this year.

I have looked through many topics and posts. I would be interested in some details of what the first few days after surgery are like. I guess I'll have a sore neck with large bandage.
I wonder about the tongue healing time, amount of pain during healing, etc. Probably have feeding tube through nose?
I expect my surgeon and/or his staff will give info about those things. But I have a lot of time to think and wait first.

For work, I transport frozen research material and frozen vaccines, etc. in a specially equipped truck which involves record-keeping, temperature monitoring, and the usual trucking industry things.
Wondering when I can expect to return to this kind of work, and what workplace difficulties to expect with the loss of normal speaking.
Already applied for short term disability.

I know that much will depend on the CT scan results.

Thank you in advance for replies.

derf #202288 10-03-2025 01:50 PM
Joined: Aug 2020
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Hi Derf,

Welcome to OCF and I am so sorry to hear of your recent diagnosis. I went through a similar surgery and treatment about five years ago. I had half my tongue removed, rebuilt my tongue with flesh from my forearm, my forearm was fixed with flesh from my upper thigh. I had a feeding tube and a tracheotomy. A few months after surgery, I received 6 weeks of radiation treatment. Recovery from surgery was quicker than recovery from radiation.

You will likely be in the hospital for a couple weeks. Just depends on how you recover and the extent of the surgery. Your tongue will be very swollen for many days, weeks. It took mine many months to come down to a somewhat normal size. I could speak fairly quickly, within a day or so, of surgery but it was quite slurred speech and hard to understand. But, you could understand me. I practiced speech as much as I could with the nurses. This was during Covid so not even my wife could visit me. In many ways not having my wife sucked but one good thing came of that - I had to learn how to take care of myself and use my words etc. The nasal feeding tube is fairly simple but I had to be really careful not to catch it on cabinet handles or with my thumb when reaching for something, etc. It's attached to your nose so be careful! Within a couple months, I was having some conversations with the general public/random people. Everyone could tell I had an impediment but they were patient when I had issues pronouncing something. Keep in mind, everyone's recovery is different and depends on many variables. I could see improvement every day or two. Keep a journal and take videos of yourself. Occasionally, I would go back and read them or watch them and it would help me see I had come a lot further than I thought.

Radiation is a slower recovery. Flavors disappear and go wonky by the third or fourth week. They keep getting worse until about 2 weeks after you complete radiation. It is a cumulative effect. Recovery of flavors, some, will be a few weeks and months. But, many flavors will take many months. Years later I still saw improvement. Spices were hard for at least a year. Ketchup was hard for months! But, today, I can eat low level Mexican, Indian, etc.

My speech today is fairly good. Most people would not know unless I told them. I still have a lisp but it is minor. Food is not normal but I can eat almost anything now. You will lose a lot of weight after surgery and during radiation. So eat anything and everything to gain it before. I am 5 ft 11 inches tall and weighed about 165 into surgery. Came home at 150. Gained almost 10 lbs then rads dropped my down to about 140/145. And, I focused hard on eating.

As for return to work. Not sure. I was able to do a fair amount from home but have more of a desk job. I was on the phone with customers in about 8 weeks. They knew my story and were patient with my speech. Physically, I was able to go for walks in the hospital within hours of waking up. I was going for short walks/jogs by a month. I surfed, one of my latest passions, within about 6 weeks (as soon as all the skin graphs, etc healed completely). I was doing yoga and light physical stuff at the hospital, the whole time. Surfing was pathetic for weeks. My shoulder on the side they took all my nodes was soooo weak. The muscle loss was obvious looking in a mirror. But, over 3-4 months, I was able to work back to running 4-5 miles and surfing as hard as before.

I am happy to jump on the phone with you as there are so many things that I would forget to type here. I was fortunate to find someone before my surgery to talk to and I found it really helpful. I will send you a private message with my number. You can access private messages by clicking on your name in the upper right of this screen.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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