Mathew, welcome to a club nobody wants to join.

If you read my signature, you will see that my husband's been through almost the same situation.

You must be your own best advocate. Try to grab a family member or friend to help you remember every single detail.

So far, I have made recording of the different doctors, and we keep a list of questions. We have an appointment next week to see if our doctor feels is necessary to remove nods.

During the glossectomy operation, the doctor he did look into the pharynx, esophagus, and voice box which all look clean.

Best luck to you!
Patty

Thank you for sharing Patty. My wife has a folder we have put together with notes and dr. files so it sounds like we are on the right track there. After the positive biopsy, did your husband do a CT scan, and if so what did it show? My lesion didn't really show up that well at all on the scan but of course we know it's there. This has me worried because if it's not showing up on the scan, how accurate is the scan in regards to the cancer being elsewhere? No lymph involvement or any other issues were showing but I'm still very anxious/cautioius/scared. They have stuck the camera up my nose and looked at the pharnix, esoghagus and voicebox and that looked clean too. This waiting game is tough...your stories on this forum are truly inspirational, thank you for this

Well I was lucky enough to get referred to Stanford Medical center for a visit with the head of the head/neck cancer program. The guy had 2 clinical days for the year left on his schedule and thank god I got in to see him today. My case actually stumped him a bit...tongue shifted over to the side of lesion and would only stick out to the side(possible hypoglossal nerve or muscle damage), not much of the lesion was visible on the top part of the tongue but it goes deep, deep enough for him to categorize it a T3 or T4 but no Node involvment and no metastasis. Basically, a very slow moving creeping Squamous that has worked it's way down my tongue like tree roots. He advised no surgery, but 30 IMRT treatments and 3 chemo rounds for precaution. No glossectomy. Can anyone please offer any feedback on this?

Chemoradiation, as organ preservation, is used often with SCC, especially in the oropharynx, larynx, and elsewhere, where the tumor is too large and or surgery would be too debilitating. Surgery still can be done as salvage surgery, if needed, down the road, and may be less extensive with shrinkage of the tumor.

Good luck with everything.

Actually the first line of defense with NON HPV related tongue cancer is surgery! This way they get the bulk of the tumor or all of it and then if it has perineural involvement (with the size you described - very possible) they would radiate you and give you chemo too.

The problem is this cancer doesn't respond as well to chemo radiation as the HPV related cancers do. With radiation it's next to impossible to tell if they have gotten it all this is why recurrences happen - a PET or CT does not pick up microscopic cancer -this includes any seeding to the nodes (and all it takes is one cell left standing).

Surgery will give you clear margins hopefully - then radiation and chemo will kill anything that may be left over. Salvage surgery after is a harder recovery because you have damaged and irradiated tissue to work with so healing is poor.

I would seriously ask for a second opinion. In very small tumors you may get away without radiation and chemo if you do surgery... but based on the size and progression of your tumor it sounds large. I would hit it with both barrels. It may not start off as aggressive but once it starts to move can become quite aggressive.

Your tumor sounds very similar to mine. It was a well differentiated slow growing tumor - mostly below the surface. My dr. removed a third to half of my tongue, and 40 nodes (despite showing negative on two scans) I had one positive node. Then he cooked me.

BTW - surgery is far more recoverable than radiation.
PS: veering off to the side is very normal for a tongue that has a tumor... this is one of the things they look for when giving you an examination.

best of luck.. it's not an easy decision to make.

Sounds good to me, here's hoping it gets better and the Chemo/radiation knocks it completely out!

I agree surgery is usually the first option in oral cancet, but not necessarily in all cases, like if it's unresectsble, patient is unfit for surgery, and don't know all the particulars. Radiation is also an option, instead of surgery, for T1,T2 tumors, N0 neck, and also for T4b tumors, any N, which indicates systemic therapy, Induction Chemo, radiation, chemo alone, clinical trial, best supportive care in oral cancer, as per NCCN guidelines.

As you are p16 positive this means you are HPV positive. So you should respond well to chemo radiation therapy. Tongues usually deviate because of Hypoglossal nerve damage. Is there a lymph node compressing the nerve?
It's probably a good idea to get a 2nd opinion. Even if just for peace of mind that your treatment plan is correct.
Tammy

I appreciate all of the feedback. I was informed that with the type of cancer, growth rate and location in the tongue I would be much better to go the non-surgical route. The Dr. feared that the surgery would probably show margins that would be questionable, and leave me quite debilitated. Why go through that, only to find out I would still need surgery and radiation anyway. Ironically, I was referred to this Dr. because he is one of the leading authorities on robotic surgeries of the head and neck. I felt quite comfortable hearing that he would of really like to operate on me, but thought that it wouldn't be my best option. I hear what some of you are saying about a 2nd opinion, but, who would I go to after I've already been to the best of the best? At the Stanford Clinic I've had no less than 3 different Dr's in the room at one time. I'm wondering how much of their billion dollar facility is for show, and how much of it is really the best care money can buy. I feel like I'm at the point where I just need to trust them and make the decision in my head and not look back

I hear ya Matthew, been there, done that. You know when you met your team, and trust, have confidence in them, which is important, and how much searching around can you do without causing delay, and other problems, and winding back to where you started. I'm fortunate to live in where there are more top 50 hospitals, and doctors than anywhere else, and even that was narrowed down to have a few 2nd opinions, and certainly didn't go to all. I was referred to a top hospital in ENT, after my diagnosis, and stuck with them, but did go elsewhere later on, and now at a different top CCC in ENT. I guess as time, status changed, so did my choices change too.

Good luck with your decision.