Hi all

I was diagnosed with right lateral SCC on the tongue. So far no signs of spread to lymph nodes. They say the tumor is small but it seems very deep. Next week I’m going in To remove part of the tongue and remove the lymph nodes, which will be examined under a microscope. Assuming no surprises, radiation seems unlikely. I go back and forth from thinking it’s. It a big deal to pure dread about the recovery and how much tongue they will take off, and whether there will be any surprises. Haven’t cried at all, but there seems to be some serious underlying stress. I’m 43, never smoked. For some reason, I feel that another surprise is coming. Worried about having a lisp. I try to tell myself “it beats being dead” and at least it was caught early. If anyone who has undergone a partial glossectomy can share their stories about recovery, I would appreciate it. Thanks for listening. This seems so unreal

Welcome to OCF, Kevster! Im very sorry to hear about your recent diagnosis!!! Its never easy for anyone to hear those dreaded words... "Im sorry, you have cancer". We've all been where you are and understand what you are going thru and feeling.

I was 44 years old when I was first diagnosed so I can relate to your feeling of shock and everything receiving a cancer diagnosis brings along with it. At your treatment facility, there should be some mental health professionals who work with cancer patients. All of your fears and concerns are perfectly normal. I strongly recommend finding a therapist to talk with. You may also want to consider anxiety meds to help you deal with this temporary rough patch. Depression is very common among oral cancer (OC) patients/survivors and surprisingly depression even affects caregivers as well. Some meds take a few weeks to kick in before their true effect is felt so dont delay in asking your doctors and/or nurses to help point you in the right direction for a mental health professional.

Something I found to be very helpful in dealing with the shock of receiving a cancer diagnosis was to focus only on what is within your control. By avoiding the "what if" thinking it will help alleviate some of the stress you are adding to your already very stressful situation. I know its very difficult to avoid thinking about cancer and what might happen but staying super busy and limiting your "what if" thinking to only a couple minutes once or twice a day with practice will definitely make everything easier. Heres a sayings we have around here that may help you... "dont borrow trouble from tomorrow".

Best wishes with everything!!!

This sounds familiar as I had something similar in 2003. It is normal for docs. to warn about the worst possible and if the result is not as bad, the patient isn't upset. My guess is you'll come out OK.
If your cancer is not from HPV, you'll need to avoid alcohol. Just a little will kick the cancer off again. If yours is from HPV, I understand alcohol is not the same problem.
Assuming you are treated at a CCC you should come out of this better than your worst fears.

I have stage 4 tongue cancer (Squamous Cell Carcinoma) & underwent a hemiglossectomy of the right side of my tongue back in December. I'm also 43. Non smoker. Light drinker. My cancer developed from a white lesion on the bottom of my tongue (oral lichen planus).

A third of my tongue was removed because of a tumor growing on the side. My tongue was reconstructed with donor muscle tissue from my forearm. A skin graft from my bicep covered the donor site. A feeding tube in my nose is how I got nutrition. Lymph nodes were also removed on the same side with 1 of them testing positive for cancer (hence the stage 4 metastasis).

I spent 5 or 6 days in the hospital after surgery with a tracheostomy tube for breathing & was unable to talk (resorting to writing on an erase board) until the tube came out on the last day. Then I had to cover the hole to talk.

I spent 2 and half weeks in a rehab home choosing to stay there until the feeding tube came out. I then went home for a few weeks to fatten up for phase 2 of treatment: radiation & chemotherapy. Which I'm undergoing right now.

Almost a third of the way done. I'm scheduled for 30 radiation sessions & 3 rounds of chemo. I've completed 8 sessions & 1 round of chemo as of this posting.

Now as for your concerns regarding a lisp, your speech will improve over time as your tongue swelling goes down. You should also have speech & tongue exercises to do, which will help with clarity. Most people can understand me when I talk. I do have weakness on the right side of my mouth because of nerves being moved around, but my surgeon expects it to get better with time & exercises.

Just a quick update from me. Heading in for surgery Wednesday. Have been receiving some good news in advance. Pet scan and mri both came clean for lymph nodes. Doctor said he likely can close the wound down on my tongue without a flap, in which case they would have me trying mushed up food the next day. This surprised me as I thought it would be a week on a liquid diet. With a flap, it will take a little longer but doesn’t sound as bad as I thought. The speech therapist was quite optimistic. She said even people who get a big flap eventuality speak normally without much impairment. And if there is no flap, speech should be totally normal. This was also surprising for me. Of course, lots of stuff can happen but I’m entering it feeling better than I have been in a long time. I just have to cross my fingers that the nodes will come clean under the microscope so I can avoid radiation. And of course I worry about it coming back.