Lizzie, I don't drink, have never smoked, don't do drugs, am a vegetarian, and work out 6 days a week, yoga and cardio with some weights... I don't fit the bill either...l and strangely enough there are a lot of us here - the face of oral cancer is no longer relegated to the elderly and smokers and drinkers. It is what it is...

Best of luck and blessings!

Lizze,
I am 2 weeks & 3 days out from my IMRT and Cisplatin, and I still can't believe it happened to me! I teach choir, singing, and general music in a small town in Kansas to middle and high school students. I do not fit the profile. I have never smoked, have never drunk a lot of alcohol of any sort, mostly wine when I did. My husband is also great, and my three grown children are fabulous. My 97 year old aunt I think always thought I took after her in health. I could go on, but you get the idea.

I wanted to avoid radiation and chemo so badly. I had the smallest lesion on my tongue, it seemed that I would get out of it relatively easy. Then for some reason I had this metastasis within a month after it was removed. Unfortunately when the lymph node was removed and the lab worked on it they found microscopic extracapsular extension. That takes you back into radiation and chemo.

I had my treatment at MD Anderson, which is 11 hours away from my home, but was worth the trip. I felt like I got great treatment. I weathered it all better than I thought. I am back home now, feel not bad, but not good either. At least my neck does not burn like it did for the last week of radiation and the 1st week post, and my sores in my mouth are much better.

I could go on, but what you really need to know is that to get well, which is I'm sure what you want, you really are going to need to do whatever that excellent doctor in New York suggests, or what the oncologist or tumor board suggests. As you already know, they are going to say radiation and chemo of some sort.
So this post is somewhat like Cheryl's.

You won't have quite the same life, but who is to say it can't be better in some ways. And you can win the battle, and enjoy your family, and encourage others. Wish you did not have to do this, but you came to a good spot for meeting others with your disease.

Anne

Lizzie

Whew! So glad you clarified that you don't mean "alternative therapy" but clinical trials or cutting edge mainstream medicine. But now I can't post my sarcastic answer that you need to go to a psychic in order to hear from patients who used alternative treatments since they are all dead.
The majority of us went thru cut, burn and poison but we are still here because of it. One thing about clinical trials is that they don't always work while radiation and chemo usually do.
Still it's always good to explore viable alternatives so here is a link to the NCI main clinical trial page which has info you may find helpful
NCI- Clinical Trials
Last but not least, it really sucks that eating right and living healthy don't protect you from getting cancer. You read all these articles about "cancer prevention diets" and then discover that it didn't prevent your cancer.
sorry you had to join our little club.
Charm

Actually - charm you're right - I like the idea of clinical trials - they were talking to me about one but it concerned me a little because they were considering dropping my chemo to replace it... Which might have been ok if half the group wasn't getting a placebo...

I'm glad I wasn't a candidate in a way - it's one thng if you are swapping one treatment for another but for a maybe? That's a little concerning..

@anneo glad you're out... Your case sounds exactly like mine but they did it all at the same time - I had the scans and everything - did a neck dissection and rebuild ( i think mine was bigger than yours -the lesion - but they discovered in the post op pathology I had the one node with a little extra capular activity- that's why I start rads etc Friday - now I know I had my lesion for at least 4 years... And it hadn't spread just gotten bigger... I wonder if the biopsy popped the containment unit, so to speak, and started the movement - it's too bad they don't go in with the intention of removing the entire mass from the outset. I mean at the biopsy stage. just a " wonder why" observation.

Have a great day - I'm off to enjoy one of my last few comfortable breakfasts... Before nuke day..

Sadly we are seeing 3 distinct groups of SCC now:

1. HPV+ with the Primary almost exclusively in the Orophyrnx region. Tonsils and BOT;
2. HPV- with a history of tobacco use, Primary just about everywhere else and
3. HPV- with a non smoking history and same Primary as #2.

Both #'s 2 and 3 prove to be more aggressive and more prone to recurrence than HPV+.

Thanks guys for all the information. I am hoping for an HPV positive. I plan to ask for a second and possibly third opinion about post surgical treatment at other top head and neck centers. If I didn't do my homework and find the robotic surgery in NYC I would have done the biopsy and then open surgery which I hear is far worse.

Lizzie,
My cousin who lives in NYC had his treatment for kidney cancer at Sloan-Kettering. He highly recommends it, and he is cured. He said his surgeon was one of the best in the world for that surgery. I'm sure there are other places, but Sloan-Kettering has a great reputation as a cancer center. Whatever you do, you should not let too much time elapse following your surgery and your "second or third" treatments. And you won't feel just super following surgery, even robotic, so hopefully you've got appointments set up now.

Good luck to you. Sounds like you know what you want, and I hope you find it.
Anne

Hey Lizzie r u going to Mt Sinai?if u are my sister went there also.