Hi all, I am new to this forum and wanted to introduce myself. I really appreciate this forum as there don’t seem to be many places to turn to for firsthand information about OC. I was diagnosed about 5 weeks ago with SCC on the right side of my tongue. I am now 17 days post op after having a partial glossectomy and a selective neck dissection where 30 nodes were removed. Nodes turned out negative and the margins of the removed tumor were also negative. I do not need any further treatment and for that I am truly grateful. I did have a 6 year history of lesions turning out to be dysplasia. I have a different doctor this time, and hope that his encouraging facts about my cancer not returning will be true. Just wondering when I can expect the numbness and swelling to go away. I have numbness on my tongue (a fairly large chunk was taken out) and a lot of numbness on my neck which feels so odd! Although I’ve been cleared to eat whatever I want, right now that is just not physically possible. I’m looking forward to getting back to as normal as possible. Is this realistic? Up until now, I have found that family and friends have been pretty much hands off, no contact once they heard the word “cancer.”

Laurie: I've sent you a message.

My guess is that the swelling will diminish and become "background noise" and the fact that the nodes are negative is certainly very good news.

I'm pretty sure that you have good reason believe that over time things will get better.

That light at the end of the tunnel is not an oncoming train but a brighter future!

TLC

Laurie,

I am so sorry you are going through all this. I went thru similar surgery but they took half my tongue and built it back up with a flap from my forearm. I also had a trache tube for breathing and a feeding tube through my nose. The good news - your post op news is about as good as it gets! No rads or chemo, happy for that! I had radiation treatment but no chemo.

I had to learn to be patient in my recovery. It took months to get food, speech, social, and sporting activities back. One excellent piece of advice I took - keep a daily journal, written, video, etc. It helped me reference improvement. I might get frustrated about taking 30 minutes just to eat two scrambled eggs. But, then I would read and remember that just a few weeks ago I was still on a feeding tube.

Swelling of my tongue seemed to take forever to come down. Some days I thought I was going backwards. You are not. It just takes many weeks/months. I would say it was about 2 weeks before i could touch my top row of teeth to my bottom row. It was another week or so before I got my feeding tube out. Then, I was mostly soft bland foods (eggs, soup, pudding, etc) for another couple weeks/month. I suggest getting a Vitamix (discounted through OCF) if you don't already have one. But, slowly but surely, I gained more ability with my tongue to manipulate food, speak more clearly, etc.

I was back to doing my normal work, social, exercise routines in about 3 months. Weak, tired more quickly, etc. but I could talk to a stranger and be understood, I could eat in public, I could jog and surf. It took many more months to feel back to full strength. I still have a lisp but my speech is nearly normal. I can run and surf just as hard as before, etc.

Everyone is different. But, this was my experience. Be patient and focus on mind, body, and spirit daily. Keep video and written journals. Go back and read them occasionally and you will be surprised.

Sending you positive thoughts and prayers.

Nels

Hi Laurie,
I’ve just joined, and so thankful I have found this forum. I was diagnosed in May 2021 with tongue cancer. Surgery, lymph nodes removed, graphs, half of tongue removed. I did have to go through 6 weeks of radiation which ended August 30th, 2021. I still have to eat puréed foods, or drink smoothies and protein drinks to reach my daily calories. I did not think it would take this long to be able to eat normal (cannot manipulate food with tongue, and still not easy to chew. Possibly due to radiation)? Areas of my neck are still numb, and tight, and my surgeon said as of a couple days ago, that everything is looking good. I have retained a positive attitude, and keep thinking that ‘normal’ will come soon.

In regards to friends/relatives, I have two brothers who have really distanced themselves from me since my surgery. They may not know what to say or do, but I have gotten past that. It’s important to focus on yourself, and find one positive/happy thing per day to get you through. You can do it!

I hope I’m not out of line by saying, Welcome.

It’s a crappy situation we are all in, and I believe that is why it’s so important that we support each other.

I congratulate you for having the strength and courage to reach out within this forum. It took me years before I felt comfortable enough to share.

I had also been diagnosed with SCC on the right base of my tongue and have undergone a hemiglossectomy and radical neck dissection after Radiation Therapy and Chemotherapy.

Keeping it real, it’s a very difficult road to travel. I hate to say it (because it has been used so frequently during the pandemic) but your body will adapt and find the new normal for you.

Honestly I have so many words of encouragement however my iPhone battery is nearly depleted.

Hang in there. You are not alone. There are many people here who can help you in so many ways.