Hi! So I received a diagnosis of oral squamous cell carcinoma early November. I just had surgery (partial right glossectomy and neck dissection) on January 7th. The pathology showed that my lymph nodes are affected so I’ll be starting radiation treatment soon. (I have a consult with the radiation oncologist this Tuesday).
Physically I feel okay given it’s a little over 2 weeks since the surgery. I still have some numbness and pain in my tongue and eating some foods is still a chore. I also have some minor lymphedema swelling under my chin. (I’m due to go back to work on Monday and I’m a little nervous because I’m still tired).

Emotionally I’m all over the place. At times I’m numb and feel like I’m watching all of this happen to someone else. Other times I’m a ball on anxiety because I have no idea what to expect from radiation and outcome etc. I’m angry because I smoked for years and know that caused this.
Anyway my surgeons PA actually directed me to this group. Just hoping to get some support.

Welcome to the group. Sorry to hear about your diagnosis. My own experience was somewhat similar to yours: hemiglossectomy (1/3) & neck dissection. Though I am surprised that you were allowed to eat so soon after surgery. I had to wait until my tongue healed, which took about a month. I was on a nasal feeding tube for nutrition during that time and my weight dropped from 195 to 172.

Fatigue is normal, and it will continue throughout your radiation and chemo (not sure if that applies to you as you did not mention). I underwent 33 radiation and 2 rounds of chemo, which was rough. You can expect bad mouth sores, which should heal up withen a month or two once treatment is done. The best thing you can do is to stay hydrated and consume plenty of calories each day. Protein will help your body heal and you should strive to get upwards of a 100 grams or more each day.

To help with the lymphedema in your neck it would be a good idea to do daily massages. Here is a link to a YouTube vid demonstrating how to do it.

Try not to beat yourself up over how you got cancer. Though you should make every effort to quit smoking if you have not already done so. Keep a positive attitude and be determined to beat cancer. You can do this.

We all get cancer in different ways and the maximum you can do is to make sure you have the best team to help you beat it.

If your cancer is not HPV related than you will want to understand that alcohol use will cause recurrence (as will smoking).

Let us know how you progress.

Hi MJM,

I am so sorry for what you are going thru. It is tough. I went thru similar last year - they took half my tongue, transplanted flesh from my arm, and took all my nodes (one with squamous cell) on that side followed by 30 radiation treatments. I was Stage IV. All scans are clear now for about 9 months. I am eating everything but spicy food. I have been full work, exercise, life for at least 6 months.

Yes, I have some longer-term nagging issues (dental care, neck and tongue soreness, slight lisp in speech, etc) but these are small comparatively. There is hope. You can do this.

Try to forgive yourself. I also had to reconcile my personal behavior as a part of my cancer diagnosis. It took awhile, but with family, friends, and faith, I was able to forgive and move on and focus on recovery.

This may sound strange. I found many beautiful people and gifts along the way. I reconnected with friends from high school (35 years ago!). My faith deepened. I appreciate many simple things I used to take for granted.

Reaching out to this group is an excellent step. I didn't find OCF until many months into this process. Good on you for reaching out.

You are thru the surgery. I found surgery to be the most intense process. But, RT has its own bag of challenges. As already mentioned, eat, drink, and eat! I counted all my calories/fluids and was able to stay within about 10 lbs of starting weight. The issue with RT is its a long slow burn. Surgery was one big event and I felt like I improved almost daily thereafter. From RT, I had to learn to measure my improvement in weeks/months.

Please keep us up to date on your progress.

Best
Nels