Went in for a regular follow-up for my neck, mentioned some increasing pain on my healing tongue, this was Monday. Tuesday was biopsy, which turned into surgery as the cancer was found. Today I am home with a tongue swollen up like a balloon, and the big word RECURRENCE hanging over my head.

Hi again.

Kristen,

I am really sorry to hear about the recurrence. It is the worst news any survivor wants to hear after a check up.

Good news is it was found very soon so you have the best chance to treat it. Did the surgery yesterday remove the new tumor? Was there any initial impression of the stage and if they had good margins? Maybe that is all that needs to be done this time.

Hoping only for the best outcomes for you. Don

Hi Kristen,
I can't express how sorry I am that you have a reoccurrence. I'm thinking you are reeling with emotions. As you know we are here to support you on this journey.

Hon I would seriously ask about follow up treatment. This often happens when they cut and then don't follow up with chemo/ rads - so sorry.. Hopefully it early stages. At this point speed is important. Hugs

I will have a post-op next week, and discuss options then. If I can talk, LOL. That is why I am reading here now. I expect the docs will be aggressive. He already mentioned going back to the tumor board with my case. Seeing as my nodes are already out, I an guessing radiation will be pushed.

I was scared to come and read, because this is a very thorough site, but I know I need to research. And cry. And all that.

Sorry to hear. Did they ever do a endoscope or pandendoscopy, wih biopsy, of the base of tongue, tonsil, and PET/CT scan being it's HPV positive? which type was it 16, 18, which 90% of the time is in the oropharyx or originated from there, and not the oral cavity, tongue, although the BOT can matastasuse to the anterior tongue. I agree with Cheryl regarding further treatment. Sometimes cancer is right outside the surgical margins, and not enough section wasn't removed, cancer comes back at the surgical incision sometimes, could be due to field of cancerization, usually with smoking, alcohol or other carcinigen related in the upper aerodegedtise tract can be involvef, and other reasons. Did that say it was a local regional recurrence with similar histology of the primary or a secondary or simultaneous cancer?

Good luck with everything.

I had a scan after the first surgery, and all was clear. No other scopes, except a quick scope down the nose at one second-opinion doc. This really is my tongue, not tonsil or BOT as far as I can tell, though with my swelling it sure feels that far down! Since we just had this biopsy and surgery Tuesday, I do not have further path info, but I know he was VERY aggressive about margins this time. I want to say the HPV was 16 but I would have to check the old papers. The lymph node removal was preventative, not required. Does any of that make sense?

Yes preventative node removal is very common with this cancer (likely NON hpv - oral cancer - includes oral tongue and oral mucousa, and gums) and that's a good thing. (with HPV related oropharangeal cancer and tonsillar, the tend to leave the nodes) I am assuming the recurrence is on the same side as the original tumor. Even so likelihood is they removed only the nodes on the one side. That being the case there is a possibility of it jumping the midline to the other side. If they give you rads - I would request they cook both sides. Your body tends to reorganize things when you remove parts. So it the fluid may drain through these nodes as well.
You have scads of nodes in your neck... they only removed a portion.

best of luck... and hugs...

It really was HPV+. They just did not know what to do next, because it was borderline needing more treatment. Doctors hate iffy. So they took out like 38 lymph nodes. Was just getting used to that. Sigh.

Kristen,

The direction and advice I received and adopted was to be aggressive the first time. I got hit with induction TPF chemo 3x for nine weeks, then rads-chemo for another 7 weeks. Brutal as hell but I have zero second guessing if something more could have been done the first go around.

In your case it seems you have not done any rads so if you adopt the aggressive stance then rads and chemo may be recommended.

I'd think everyone would agree to go in with all guns blazing as you want to do everything possible to stop it dead this time.

Don

I understand. What I was saying is they found some HPV patients, in a review of years of records, scans, pathology, slides, many were originally misdiagnosed with oral cancer or cancer was missed in the oropharynx, which is sometimes difficult to detect, and the primary was in the tonsil or base of tongue all along, especially when it involved HPV. I'm sure your doctors were thorough.

I agree with donfoo - both guns blazing... Right between the eyes!

Kristin, I am a bit more tempered in my view, as I was in the same boat as you. Surgery to remove the tumor, ND with nodes removed both sides. All were clear and I had clear margins. They gave me the option of rads because the tumor had grown quickly and there was peri-neural involvement, but the margins and nodes were clear. I decided to hold off, but it was a really hard decision.

It sounds to me like they just didn't get it all the first time (based on him saying he was going for more aggressive margins), but you have to do what you feel comfortable with.

Good luck with the appointment.

Oh, Paul, I see what you are saying. Would it not show on a scan though?

I guess I will see the ENT's recommendations at our follow up on Wednesday. I will be very surprised if I am even swallowing other than liquids by then. I had no idea a tongue could swell so much.

I will be curious what the doctor says too, and is worth mentioning. Tumors may or may not show on a scan depending on it's size. HPV, at least in the oropharynx, can be fought off and be undetectable at the primary or metastasizes quickly to the lymphs taking all nutrients with them and killing off the primary sometimes, and HPV are usually small tumors, T1, T2, but the nodes can be much bigger due to nutrients in that area. A PET/CT can go as low as 5mm. I had one that found a 3x7mm that was picked up. I had tonsil cancer, and a pandendoscopy was done to see if there was any other cancer in the upper aero digestive tract, but was never tested for HPV, which was mentioned was probably the cause. Some say the scope is not necessary as HPV oropharynx related is usually confined to the oropharynx, tonsils, base of tongue, unlike tobacco/alcohol related that has a "field of cancerization" that can effect the mucosal anywhere in the upper aerodigestive tract that may cause secondary, synchronous, metachrounous tumors. Also, I read that positive benefit of having HPV is for the oropharynx only, and not found in other locations with HPV, so you may want to ask about that too.

Sorry for the tongue pain. I only had a punch, and incisional biopsy, and that was painful. Good luck with your doctor appointment.

Hmm. Well, my removed nodes all tested clear. I suppose they might have missed one in testing? This second round was just my initial incision hurting, and there was a lump of scar tissue. He said biopsy, because no way to tell what was behind it otherwise. Apparently it was not so much scar tissue as new cancer. My husband says it was something like 1mm by maybe 20mm long. I assume down the length of the tongue. More details next week, of course.

It is kind of interesting how the swelling has not crossed the midline, and you can see the centerline of my tongue is shoved way over to the left to make room for my right side balloon tongue. I would laugh if I was able.