Hi all!

I had a lesion under my tongue for a few months. It wasn't really bothering me - just annoying sometimes. I saw my dentist in October and November 2016, but I forgot to mention it and I guess they didn't check my tongue. I went back to the dentist in February because I wanted to get it checked. The dentist did a biopsy and a few days later the pathology report was back showing SCC. Of course, now I am pissed at myself for not taking care of it sooner. Sigh.

The biopsy wasn't tested for HPV. Seems like that would be standard for a case like mine. I want to learn about the HPV status and how that might affect prognosis, recurrence, other cancers, etc.

I am scheduled for a partial glossectomy on 3/17 (St Patrick's Day!). They think they will be able to close the opening with sutures - so I am hopeful that I won't need a graft. My lymph nodes looked good on the CT scan, but there is a small (8 mm) asymmetrical node on the R side, so they will remove those nodes.

I am scared, of course. My surgery is still 2.5 weeks ago and I am scared that the cancer is growing and spreading every day. I am currently at T1 and just pray that the surgery shows no spread.

My main concern is my 6 year old daughter. I haven't told her anything yet, and I don't want to use the word "cancer" with her. So many people equate cancer with dying, and I don't plan on dying!!

So glad to have found this group. Oh, and for what it's worth, I am a 40 year old female, never smoker, rare drinker, otherwise healthy (I think!).

Welcome to OCF! Im very sorry you have a need for our group. We will do our best to help you with info and support to get you thru your upcoming surgery.

If you havent already done so, please consider getting a second opinion. A Comprehensive Cancer Center (CCC) that would be the best choice if its an option. A CCC is where they have the most experience as they see many cases of OC every day, not just one once in a while like a smaller local hospital. Just remember, surgeons cut, its what they do. Once its been removed, it can never be put back to its original shape or functionality. This is why its so vitally important to see the most skilled physician you can so you only have one surgery with clean margins.

I suggest lining up as many helpers as you can. Having a young child at home you will need help with her. Even if its just to take her for an afternoon outing so you can rest. You may need help with driving too if you are on strong pain relievers.

You want to go into this with no regrets. I suggest eating everything you can now, all your favorites so you dont have cravings. Your ability to eat and taste are likely to be affected so eat everything now while you can enjoy it

Best wishes!!!

Thanks Christine!

Agree that I wish that I didn't need this group, but glad I am here.

I am at Emory University in Atlanta, so I feel good about the facility.

And I love your advice about eating everything I can now. I plan to make a reservation the day before my surgery for one last meal with my tongue still intact. : )

Welcome klrm!

As far as HPV-16 related head and neck cancer, it mainly occurs in the oropharynx (tonsil, base of tongue) and rarely in the oral mouth, so the HPV test is not usually part of oral//tongue cancer work up, which is done by testing the biopsy sample, and when it does occur in other areas like larynx, nasopharynx, oral mouth, some are thought to be misdiagnosis, or metastases from the oropharynx. In addition, studies showed there is no positive benefit with HPV in other areas as it does have in the oropharynx, as far as my readings.

I learned of Emory University's Winship Cancer Center a few years go, mainly from reading Dr Dong Moon Shin's reports about chemoprevention, which is not about chemo per say, but in reducing recurrences, cancer risk. Emory is a NCI, National Cancer Institute, designated Cancer Center, so I'm sure you're in good hands, but many do get 2nd opinions.

Good luck, and if you have any questions, just ask.

Welcome! Your situation doesn't sound so very different from my own. My dentist noticed a small lesion under my tongue and sent me to an Oral Surgeon to have it looked at. I was diagnosed with a very small SCC - the biopsy actually removed the whole lesion - it was that small. But since it was cancer, I was referred on to an ENT who performed a partial glossectomy after scans showed no node involvement. I simply had a few stitches, and was told to take a week off from work, and that was my recovery.

Although my surgeon is experienced in cancers of the head and neck, he's not part of a cancer care center, so he also referred me to Seattle Cancer Care Alliance for a second opinion (my doc's mentor was there, and he studies with them, but he is not affiliated). The second opinion was simply a schedule of follow-up scans, which I've since completed, in addition to my periodic checks with my ENT. I'm approaching three years out now and all is well.

I am telling you all this, so you can see that not all outcomes are bad. I was very lucky to be diagnosed so early. I'm hopeful your experience will be similar to my own.

KitKat1,

Thanks for posting your experience. I hope my experience is similar to yours! My biopsy didn't get it all, but I am hoping that the surgery will.

Hi klrm
I had the same as you in 2013. Stage 1 SCC of the tongue with partial glossectomy and neck node removal. Small lesion that was just annoying. Today I am good overall... can talk just fine and look ok minus a major scarr.....totally lucky. Ask your surgeon about the possibility of damaging nerves. They had to "sacrifice" my lingual nerve. This left me with basically a numbness on the left side of face and a burning tongue. You could hit my face very hard and it won't hurt but I know I was hit. I've had to change my diet to very bland foods b/c of the tongue burning. One upside for me is that I got super smell. Can smell things most people can't.

With this disease, you need a team. Your oncologist is the project manager. Their job is to line up people and develop a sequence of events. Make sure every dr you talk to is oncology oriented. I think that if I did/had this, I might have come out in a different place.

I wish you all the best.