Hi Katie
Sorry you have joined our exclusive club! I was 34 when diagnosed and my mom was 33 when diagnosed (in 1985). Neither of us were smokers and only occasional drinkers.
Don't know why it happens. I definitely felt betrayed by my body especially since I did honor and take care of myself.
Good Luck on this journey - this forum is great for information.

Katie, glad you are back and posting on your thread. As a new member I didnt want to see anything scare you off as I know this site can be a very important place for support and info for you.

There are quite a few here who are young and have no known cause. There could be a million reasons why this has happened. At this time there is so much that is still to be learned about cancer including causes. Why one seemingly healthy person will get OC while their best friend is a smoker, heavy drinker and also is HPV+ but never gets OC. The whole thing stinks but we have to do what is necessary to kill the cancer and hopefully move on to live a good long healthy life afterwards.

Please feel free to ask any questions and we will try to help you.

Katie

Back to your medical issues. sorry I let myself be taunted into being complicit with that hijack. It won't happen again. Consider asking for a copy of your pathology report. At a minimum, ask your oncologist if the pathology report shows any indication of PNI (perineural invasion/involvement) as that is a bad sign.
As to the selective neck dissection, you could also ask for a PET/CT scan first. While Petscans are very inaccurate for mouth and tongue tumors, they seem to be very accurate for lymph nodes. I have had a selective neck dissection, and my surgeon was very careful not to damage or cut the muscles and nerves in the way, but even moving them out of the way to take out the lymph nodes causes trauma. There are serious consequences of a neck dissection in terms of shoulder movement, and ability to raise your head and your neck skin turning almost fossilized. Lymphoma and swelling are issues also, plus the lymph nodes are not like your appendix, they actual serve an important function in your body.
Worse in my mind is that many many times all of the lymph nodes taken out turn out to be cancer free, and while some posters are all excited about that, it means that this was an unnecessary surgery.
Of course you have to trust your doctor but wouldn't you feel better if your doctor addressed all those concerns with you rather than just doing a neck dissection "just in case".?
I got a lot of flack by refusing a neck dissection for my first cancer, but when I had to have the salvage surgery to take out the tumor after the recurrence, the same nerves and muscles and area had to be traumatized so it made sense to get the neck dissection done. It turns out that not one of my lymph nodes did have cancer which validated my first choice of being cautious.
Oh, and one last piece of advice, since you have not had and may not even need radiation, it's the perfect time to ask for a blood test of your TSH level, the thryoid hormone. Unless you know your exact TSH number now, before radiation or chemo, you may never be able to fully recover since the lab tests for TSH levels are so wide in range that they are meaningless for an individual. The best guidelines suggest doctors do this, but most ignore it. But it's very very important to know since after TX, you will want your TSH level to be the same as before.
Charm

Hello. I have been absent due to Hurricane Sandy. We didn't lose power but had numerous friends and family who did and our home became a charging/warming station to them. I have to say that it was a welcome distraction from my impending surgery.

On November 12th the oncologist further resected my tongue and performed a selective neck dissection. I was in the hospital for almost a week (home yesterday!). I had the nasal feeding tube and a drain in my neck. I had been warned that the removal of the feeding tube wouldn't hurt. It did! But it was quick and then it was over. I was warned that the drain removal would hurt, but it didn't, only because that portion of my neck has been numb post-surgery. That was a relief because I was dreading the drain removal and even cried like a baby when the doctor came towards me. It was actually kind of funny.

Overall I'm not in a lot of pain. When I do take percocet I tend to feel nauseous. I'm waiting to have an Ensure shake before I take my morning dose. I'm quite swollen on the opposite side of my neck. I've been diligently lubing my incision site with bacitracin. That's it for medications. I go back to the oncologist on Tuesday for a follow-up visit. He'll know the pathology results by then. You know, it's enough to have to go through these surgeries and to look and feel like a freak. Then in a couple of days I find out if the cancer spread to my lymph nodes and I learn if I can breathe a sigh of relief or if radiation is on the horizon for Christmas time.

I'm really not one to complain and say why me but please allow me to indulge in a moment of self pity. I know you all can understand. I don't know even know what to say. I just want to feel normal again. I want to not look like Jaba the Hut. Wah!

OK. That's enough of my whining.

Whine away, it's acceptable and even encouraged!

Actually Katie, I don't consider your very tempered "worries" whining - if you want real WHINING you need to go back to some of my posts!! It is so very natural to be feeling gut clenching anxious and fearful. Who wouldn't be? Keep as busy as possible, do whatever you can to distract yourself - a rented movie is 2 hours that you hopefully are free from worry - take them, and remember - we are always here for you - whatever happens, we walk this path WITH you.

Donna

Katie,

I am one with the "whining". I felt the same way. Lost half my tongue, looked like the Bride of Frankenstein for Halloween without needing a costume, sounded like the Godfather with new fillings (now like Elmer Fudd with a lisp), numb neck, numb ears, limited range of motion in my neck and shoulders....

I thought, holy shit, and the surgery was the easy part????

But I'm here. And my speech is getting better, even if slower than molasses in January. And I can lift my arms up almost straight. And I can shoulder check when I drive. And, most important, I'm here, and my family is so grateful that I am.

So, punch the punching bag in the basement (or get one of those plastic stand up guys to punch - it's very cathartic), and cry in the shower. Then dust yourself, take a deep breath, and know you can do it.

Besides, you made it through a hurricaine...cancer is a walk in the park.

So glad you got rough it. We all have those moments. Hopefully this is it for you! And you don't have to have rads. hugs!

Yuck, yuck, yuck and all of that. Now I'm stage IVa. Out of 22 lymph nodes, 3 of them have the bleeping cancer. They range in size from 0.3 to 2.4 cm.

The oncologist referred me to a radiation oncologist who is the head of the department at Morristown, the Carol G. Simon Cancer. Anyone out there had any experience with either Dr. Erik Cohen or Dr. Wong (radiation oncologist)?

Dr. Cohen recommends in 4-6 weeks localized radiation every day for 6 weeks. He said he'd recommend radiating the tongue and the neck. My mother and aunt are wondering why he wants to radiate the tongue since he took an additional 3 cm out and my margins are definitely clear.

Now is the time for me to get my 2nd opinion. I'm going to see someone in Memorial Sloan Kettering in Basking Ridge, NJ. Am I doing the right thing?

This wasn't a shock to me. Everyone and their mother has been calling me all day into the night. I wasn't shocked. I knew it had spread. I would have been shocked if I were in the clear.

It's so comforting to see that so many of you in stage IV are alive and kicking. That is my plan.

Sorry you are faced with these decisions but don't ever second guess getting another opinion from a CCC.