got my results today, it is cancer. that is all i was told at this point, he did not have a depth?? my ent surgeon is consulting with a colleague at Karmonos cancer institute and they say they will knw the depth.ive got to go back in for surgery next tuesday which as far as i can tell will be excision?/ with pathology to assess what is being taken out until they have the depth
i am so scared and totally confused....

Just saw your other post. I had surgery on May 31st for a tongue lesion that would not heal. Turned out to be big enough that I had to stay overnight instead of just outpatient, which threw us for a loop. But it is healing well, and the path report gave a lot of details, so it is worth it. Just be more sensuble than I was and plan more recovery time! I had mush for a lot longer than I thought I would have to eat it. Now we have to choose my further treatment.

I responded to your other post. Try not to freak - it's one step in front of the other.

Over the next few weeks you will have many appointments which will help you to understand everything. Please stay calm! The staging will come when the CT or a PET scan is done.

Take some time and educate yourself about this awful disease. By reading this following link it will give you the knowledge you need for whats ahead of you. The main OCF pages are full of helpful and factual info.

Diagnosis Info Step by Step from main OCF pages

than you, however i don't have an appointment until surgery again Tuesday.... with my ent surgeon rhats why im confused......

Sorry for the confirmed diagnosis. I responded to your other post.

Jenn,

If I were you I would NOT let ANYONE cut on me until I had talked to all docs involved and I would want to get to a CCC and see what they advise. All of us here including you are shooting in the dark with the lack of info re your cancer. No reasonable person can make an informed decision without being informed.

Actually it's an oral tongue cancer the standard treatment is in fact surgery first. I would phone your dr. And ask to see him. Bring someone with you someone who has your best interest in mind - significant other, parent, sibling, close friend. They will pick up on anything you miss. Shock has a tendency to blank out all rational thought.. You do need to know the size and staging of this. I cannot remember if you said a ct or MRI has been done. I wouldn't give up the surgery spot since it is on track with treatment - and it's a fast time frame which is what you want. If you were an HPV related cancer I'd say hold up... Since usually rads and chemo are the first response treatment for that but this is a tongue tumor which usually isn't HPV positive. You need to see your dr. ASAP - a ct/ MRI/pet (one or two of the above) is important because this tells them where to cut, and if there is further involvement. Like your lymphnodes. Since you've had this for 8 months depending on the aggressiveness it could be quite large. To know the true size a scan should be done.
Most ENTs (my surgical oncologist, is an ENT) will remove some nodes as well since that is where it tends to spread, and you do not want to have surgery twice if you don't have to. Plus if it is a fair size you may also need a graft. This can be a big surgery so you need to know exactly what's what.

Basically you need to know the size, staging, if they are doing a partial neck dissection, will they be grafting the area they remove on your tongue, will you have a trache (if you will - post surgery you will not be able to speak for a few days)

I'm thinking based on the speed of the surgery it's either very small - or scary big - if its small he may be thinking get it out first then deal with the rest. Each is fine, but even small lesions can seed to the nodes so you really need some clarification - were I you I would also want to know how many oral cancer he treats a year, and if he's affiliated with a CCC.

A run down on oral tongue cancer non HPV related...

Standard treatment:

Biopsy
Confirmation of dx
Scan (s)
Surgery (often involving removal of the area, grafting if its a large area, and a neck dissection)
Then depending on the results of this biopsy (clear margins, cancer in the nodes etc...) possible radiation and treatment.

explain to his secretary you were shocked and out of it and are scared and need clarification, can you please see him for just a few minutes.

A simple excision of the tongue is a fairly quick procedure, and heals relatively fast, if its more involved you couldbe in there anywhere between 10-14 days... You really need some answers.

Hugs.

Hi Jenn - Cheryl just gave you the best and most comprehensive advice ever. Having someone to help you understand all this terrifying new information and just to hold your hand while you learn more is a great idea. I hope you have such a person. I found that many of my friends were more than willing to help.

So much of this cancer stuff is having to wait. It's maddening, I know. But we're all here for you so please come on the forum and ask questions and just vent any time you want. You're part of our family now.

Sending good vibes.

For oral T1-T2, radiation is also an alternative to surgery, per NCCN guidelines, but haven't seen many go this route mono treatment for the oral tongue. Another treatment is trans oral micro laser surgery, which can be done again, if needed, as opposed to other treatments, and does not interfere with future surgery or radiation.

If its HPV related, 90% of the time it's the oropharynx, like BOT, which can metastasize to the oral tongue, and usually not the other way around. That 10% could include patients who were misdiagnosed, as researchers shown happened, when they went back to review medical files, diagnostic tests of HPV oral cancer patients, to find they really had oropharynx cancer to begin with. Oropharynx HPV related also can be an unknown primary from the virus killed off by the body's immune system, but still metastasize before that or when it metastasizes, it basically kills off the primary, when metastasizing to the lymph nodes.

You could just be that 10%, but I would like to double check.