Hi - I'm new here, having recently had very early stage tongue cancer surgery. Dentist found a spot on the bottom of my tongue on June 11, and I received my official diagnosis post biopsy on July 2. Lesion was only 3mm and the biopsy had clean margins. Had surgery on July 8 done by a very experienced ENT, to get wider margins, which all tested out to be completely clear of cancer.

I don't technically know all my staging and if it was HPV- or HPV+, but I'll ask that when I go back next week. I'm still healing up from the surgery - had the last stitches fall off about a week ago, and am still experiencing some tingling and pain, but that's going down every day. There is still a little lighter colored raised area where the last stitch came off, but it seems to be going down daily too. Still freaks me out though! I suspect there might be the last of the stitches still under there dissolving (from what I read, they can take weeks to fully dissolve below the surface) plus some scar tissue.

FYI - not a smoker (never have been), but did drink alcohol. I've since given that up - possibly permanently, just don't want to increase my risk factors! My ENT thinks it's possible that my lesion was the result of a place that rubbed on my Invisilign braces, combined with alcohol use. I love my red wine, but I love life more!

It's tough not to remain anxious. Even though both the Oral Surgeon and ENT indicated to me that I'm very lucky and this was caught at about as early a stage as is possible, I can't help but feel anxious. I'll be asking at my next appointment about 2nd opinions to make sure I really don't need additional treatment, and also if I should have regular scans moving forward. I had CT scans pre-op, but no PET scans.

Anyway, that's my story!

Welcome to OCF! Its always great to have survivors join our online family.

You have been thru alot but you really are one of the more fortunate ones. With the location of the lesion, I doubt it would be HPV+. Most often HPV+ OC occurs when the tumor is in the base of the tongue or tonsil area. Over the past few years, Ive seen several other cases where the cause was thought to be from trauma to the area. Regardless of the cause, your treatment would have been the same.

Best wishes with your continued recovery from surgery!

Thanks Christine. I'm still very anxious about that little bump, even though logic tells me it is just still in the healing stages. I tend to be very anxious about things despite what's rational sometimes, so I think I'll call my ENT on Monday, since my next appointment isn't for a week out. Unless it continues to show improvement, that is - which it already has, so that's why it's so irrational that I'm so anxious LOL. But better to make a fool of myself by calling than to keep going nuts, you know.

welcome to ocf. it seems like your situation is well under control. it is still wise to keep vigilant and watch for any change once things heal up. it sounds like you have great doctors whom you trust; this is more than half the battle. The other half is for you to try your best to be less anxious. Remember it is caught at a very early stage and now you all are on the lookout like hawks for any potential change. It sounds like everything possible is being done properly. Good luck

Thanks for the warm welcome, Don . Yes, I do like my doctors. I feel blessed that my dentist is always vigilant and looking for these things. Actually, it was her assistant who noticed it, before she even saw me. The oral surgeon she referred me to for the biopsy told me I should give her a big hug, because she may have saved my life. And the oral surgeon called the ENT even before giving me the news, only waiting for my permission to fax my biopsy results to him. I left the oral surgeon's office, called the ENT from my car, and had an appointment set up before I even made it the two miles home from the appointment - for just a couple days later. And he had me scheduled for surgery three days after that!

Oh, and the anxiety - well, the area of concern I was troubled over these last couple of days - it's barely noticeable know. It's just the tissue healing up from the place where the final stitch came out and possibly a little dissolvable stitch under the surface still dissolving. That's something I have to work on though - not being horribly anxious every single time I have a canker sore! I need to try to find a good balance between vigilance and freaking out!

Great news, KK! So glad that everything is going by the textbooks. You definitely have every reason to feel good, and your medical team seems to be first rate. Really glad to read that the bump turned out to be nothing much.

Please keep us informed of your recovery progress. We're sorry you had to join our little family, but we're a pretty nice bunch. And you're one of us now.

Nothing to worry some.
Good luck with your recovery ...

Had my surgical follow up today, and all looks good. I asked about decision to not do any neck dissection and he explained to me that mine was so small and early stage that the protocol is generally to not do that, but to just watch, especially given other factors (my lifestyle, overall health, etc.) However, he agreed that one should always get a second opinion (said he himself would), so I have a referral now to a top ENT / cancer specialist at UW, just to put my mind at ease.

Other than that, provided the 2nd opinion supports this protocol, I'm in the mode of being vigilant, and doing regular follow-up every 8 weeks with my doctor.

Good for you KitKat1!

That's awesome follow a advice keep a close eye on your neck - hugs!

Well, I finally had my 2nd Opinion appointment today, with a top surgeon at Seattle Cancer Care Alliance. He 100% agrees with the treatment plan that was followed in my particular situation. Yay! I believe he is recommending two follow-up sets of CT scans, one at 6 months and one at a year, which my doctor wasn't real clear on (or on the fence about) so he'll send a note to my doc about that. Otherwise, I just need to be diligent with my appointments and hope/pray for the best!

Great news. Sounds like a very prudent follow up plan.

Hi. I quit visiting here last Fall sometime, but since this is the one-year anniversary of my surgery, I thought I'd pay a visit. Still looks like there is great support here - but I hope to continue not needing it!

Tomorrow marks my one year anniversary. I continue to see my ENT every two months, and have had one 6-month CT with another due in August. Then I believe the plan is one more in a year. Things are fine so far, and I'm really hopeful things stay that way. I still believe that my occurrence may have been caused by a chronic irritation from orthodontia, so hopefully less likely to have a recurrence. But if I ever need it, I know where to come for support!