I was recently diagnosed with SCC on my tongue.

Luckily we have caught it very early, my ENT specialist thinks it is at best a big stage I at worst a small stage II. He is also VERY confident that it will be taken care of by surgery alone.

Can anyone out there give me some sort of idea of what to expect especially after surgery?? My surgeon says that he will take frozen sections of my tongue and will probably leave it open to help with better tongue functionality although he says that it will hurt like crazy!! (his words!!!). Will it really hurt that much??? - and you can be brutally honest with me!! And how about tongue functionality is he being overly optimistic do you think?? He also thinks that because I have already quit smoking that the chances of recurrence have lessened greatly.

Also, I guess I am very luck in that in many cases this kind of cancer usually isnt discovered until it has already spread my CT scan results showed there has been no spreading anywhere else.

Thank you all for reading this..... I have great support from family and friends but I guess there is nothing like communicating with people in the same situation sometimes!!

Thanks
Christopher H

Hi Christopher - How wonderful that your surgeon is so encouraging and that you found this site! My son had Stage 2 SCC on the lower right side of his tongue. The surgeon removed 1/6 of his tongue and he also had radiation treatments just to make sure and take care of the cells that may not have shown up on the PET/CT scan. On the scan it showed one lymph node affected but when they removed the 48 lymph nodes in his neck, all were clear. My son did say that the worst pain and discomfort was with the radiation treatments and that compared to the surgery, that the surgery was a "piece of cake"! Re the "frozen sections of the tongue" I don't know what the surgeon meant about "leaving it open" (maybe somebody else does) but as for functionality, my son has no problem with speaking and has learned to maneuver food around in his mouth to be able to swallow very well. It's important to remember that everyone reacts differently, though and there is a wealth of information on this site (just use the "search" function) so that you can be prepared for any questions you might have either with the doctor or the great and helpful advice you will get from the compassionate people on this site.

From what the dr. has told me what frozen sections mean is that they are going to do pretty much a 'running pathology' as he removes pieces...at least that is what i understand it to be!!!

Thanks!
Christopher

Christopher, welcome. I'm sorry you have to join us, but you have found one of the greatest resources you will fin during your journey.

I think you're fortunate if you can get by with just surgery. For me, that was the easy part. Radiation was tougher physically, and for much longer.

Pain is a relative thing. While every bit of this journey was painful for extended periods of time, pain management has come a VERY long way. You will not and should not be in pain at any point. If you are, talk to your Doctor. For many in the cancer field, that is a driving and primary foundation of treatment; the patient should not suffer pain.

You're correct re: the running pathology via frozen sections. That saves a second surgical incursion, and allows the Doctor to identify clear margins while in there the first ( and hopfully only) time

Much luck, and stay with us here. If you have questions, ask. If you're afraid, talk to us. We've all walked in your shoes, and we're all here to help
Wayne

Hi Christopher,

I have had the same tongue surgery that you are facing. As you can see below in my signature, I had a partial glossectomy, and I also had 30 lymph nodes removed. You don't mention anything about a neck dissection.

As far as the glossectomy is concerned:

1. I had frozen sections and you are correct in your understanding of the procedure.

2. I did not have my tongue sutured either and that was to allow it to heal better. After speech therapy, no one can tell that I had a partial glossectomy.

3. Hurting like crazy is a pretty good description. I had 10 days of no solid foods and taking a teaspoon of liquid tylenol with codiene took about an hour to get down. I drank Ensure, with little sips at a time and I lost 15 lbs (that was a good thing).

All in all, compared to what others have and will go through, it was really nothing to complain about. You have a lot to be thankful for.

I am curious as to how your scc was discovered.

If you would like to speak with me on the phone, send me an email by clicking on the icon that is second from the left at the top of my post. Send me your phone number and when is a good time to call. I'm sure I can answer any additional questions you may have.

Good Luck.

Jerry

Thank you all for your kind words. Jerry, my SCC was discovered almost by accident, I had a lesion on my tongue that at first I thought was just a bite....I was at my doctor and as an after thought I showed him...he immediately suggested a biopsy sent me to an oral surgeon who performed the biopsy. This was all done within about 2-3 weeks.

As far as meck dissection is concerned he has decided not to take any nodes as every other test I have had has come back good.

As far as other things go I am really trying hard to put a brave face on things but it comes and it goes as I am sure ith everyone else here.

Thanks
Christopher

Hi Christopher,

I too had a stage II tongue cancer. I had between 20 and 25% of tongue removed as well as salivary glands under the tongue. I did also have the neck dissection - but all was clear so no radiation or chemo.

I was 29 at the time and spent about 5 days in the hospital. I had no foods by mouth for the first 3.5 days. When I did start to eat - it was pudding, ensure, stuff like that. My tongue was also left open in the back - but was stiched closed on the side. I had no speech therapy or anything like that other than the one time consult while I was still in the hospital and most people can't tell at all that I've ever had surgery.

As for pain - yes - it will be painful for the first probably 2 weeks. Eat a lot of creamy foods when you get out. I found that applesauce stung the open areas and so I basically had things like pudding, ensure, yogurt and ice cream (boy did I have the ice cream)......I had liquid pain meds to go home with and they were very hard to choke down (as they burned) for the first few days. I was off of narcotics pretty quickly. I went back to work only 3 weeks after the surgery with little to no pain. I had only a little rawness left when I went back to work.

The one remaining side effect that I do have is dry mouth due to the salivary gland removal - but it is manageable. I have found that sodas cut the dryness/tackiness the best - but also sparkling water in case you don't want the calories from the sodas. Due to the dryness - there are a couple of foods that I no longer eat - like dry cereals (I also don't drink milk - so you can see how these dry cereals woul dbe a problem) and my tongue coes occassionally have a hard time "gripping" or "maneuvaring" things like lettuse and spinach that can be slippery.

Good luck!