And have no idea what to expect. My oral surgeon just told me "your biopsy shows you have squamous cell carcinoma - you know, oral cancer", and gave me some doctors to call. I ended up call Dr. Sasaki at Yale New Haven and they will see me Monday.

My report says "moderate to poorly differentiated" left posterior lateral tongue.

Any help from anyone would be truly appreciated.

Hi Gail!!! Welcome to OCF. Im sorry you have gotten this bad news. Dont worry, you have come to the right place to get help. The most important thing you can do is to get yourself seen at a cancer center. I will include links to the top cancer centers and to the best US hospitals.

Im sure you are upset by the diagnosis. By going to the top doctors, you will ensure that you have a better chance at beating this. Over the next couple weeks you will learn a whole new vocabulary full of medical jargon. If you dont understand something someone has written to you, ask for an explanation. When you go to the doctor appointments, take along a friend or relative as a second set of ears. Write down your questions, even ask the doc if you can tape the session so you can go back and replay it later. Here is another link full of tips. Read and absorb everything on this wonderful website. Make sure you understand from the beginning... we are all different and will respond in our very own unique way to medications and procedures. Just because something works for one person doesnt mean its ok for you. Always check with your doc before implementing anything new.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=65994#Post65994
http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Gail,
Christine is so great about greeting everyone appropriately. I hope you'll look at the lists she gave you.

As far as what you have, I had moderately well differentiated scc (squamous cell carcinoma)on my ventral tongue, so sort of lateral, but more in the mid part of the tongue underneath. I just went through treatment at MD Anderson in Houston. It was 11 hours from my home.

My point would be you don't have to confine your opinions to one doctor. You might want to consider having Sloan-Kettering in NYC take a look because they are considered such a top place, and I don't think you are too far away. I saw that Yale was on the Best Hospital List for cancer also. You never know you might really click with them, but it wouldn't hurt to have another opinion. Hospitals and doctors are used to it, or should be.

I had an oral surgeon remove my lesion also, but then had an ENT look at it (in Kansas)but later went to MD Anderson when I developed a metastasis in one lymph node. Hopefully yours is smaller in size rather than larger, but whatever the case, you need to do just as you are doing and pursue it right away.

Sorry for your diagnosis, but let me know if I can help you.
Anne

Ladies,

I did look at the lists and Sloan is a great hospital, but I had a limb saving surgery at Yale New Haven, when no one else could handle it, done. Needless to say, I will try them first and go from there.

Thank you both SO much for responding to this mess that I am today...

Gail,
I can see why you would choose Yale then. You'll know a lot more after Monday. Just remember we've all been in somewhat of a mess if we are on this board. Best to you!
Anne

Thank you again, and God Bless you all..

See you Monday.

Gail, let me add my welcome and sorry/glad to see you. From what you're saying I too am confident you're at a great hospital. We'll all be eagerly awaiting the results of your meeting on Monday so please do let us know.

You'll get through this!

David2

Hey... welcome and nice to meet you though I am sure you wish you didn't have to be here. I too had a lesion on the left underside of my tongue it was well to moderately differentiated. I just had the surgery 5 weeks ago and am starting radiation and chemo this friday.

If you have any questions a lot of the amazing people here will be more than willing to answer you. You can also feel free to PM me as well.

Best of luck to you and take care.

The weird thing is, I have a physical every year, and just had mine 5 months ago. Nothing in my blood work to indicate cancer. My primary even said everything looked great - except my blood pressure...

Also, about my hospital, the other reason why I picked Yale was because after your appointment with the top doctor, you go before a "Tumor Board" of experts who decide and evaluate, with you and/or spouse/significant other, your course of treatment. There will be 7 different experts there on Monday - head & neck surgeon, oncologist, oral surgeon, radiologist, pathologist, speech and swallowing expert, and the entire nursing staff.

Will let you guys know how it goes.

Gail,
That's just what you need!
Anne

God luck Monday!

As i was told, oral cancer does not have any blood "markers" the way some cancers do. Your report sounds VERY similar to mine. When I was first diagnosed one person told me it was moderately differentiated and the other said it was poorly differentiated. I think the first one was just trying to keep me from completely freaking out - but what they didn't realize was that I had already done that when I heard the word Cancer.

One step at a time. At this stage it is impossible not to think about it every second, but if you can - try not to let Cancer steal every day of your weekend. It will already get more days that it deserves. Try - if you can - to push it to the back of your mind. You have done everything you can now it is your time to go out and eat anything you want (a few extra pounds going into surgery/treatment is a good thing), spend time with those you love and enjoy the beauty of nature.

Once you start treatment you will feel significantly better mentally. Actually DOING something is a comfort vs sitting and waiting.

Look forward to hearing about your Monday results.

Donna

sounds like you are in good hands (medically) and have found this board for mental support.... take everyone's advice -- they have been thru the worst and then some... and do try and put it out of your mind a bit for the next few days. Sending you best wishes, good healing vibes and prayers.
Ingrid K

Hi,
For what it's worth, I've been told that a lesion can be viewed different ways. That is why when you get a second opinion from a different cancer center (or more) they always insist on seeing your slides so their pathology dept. can have a go at it. I had mine viewed as moderately well diff. & well diff. (from one place), Then it was labeled "superficially invasive" by another, and then I was faced with a metastasis to a lymph node, called met. rather than reoccurence because it happened within about a month of the biopsy excision! My last stop called it "moderately well", and the lymph node a met. because there was no cancer left in my tongue when they recut. I am no expert, but I would say that judging the histology of the lesion is at least partly the decision/view of the particular pathologist. I am also sure that they try to quantify it as best they can to take some of the opinion of out it. (there's hedging an opinion for you)
Anne

Just a quick note to everyone who responded to me or just read my message.

Thank you, from the bottom of my heart. As you know this is the most confusing, terrifying, gut wrenching time - not knowing what is going to happen and not having many answers.

I was diagnosed with MS 5 years ago and didn't think anything worse could happen to me. Wrong...

You are all angels who have helped ease my mind and spirit.

Thank you again. God Bless you all.


Gail

Gail,
Welcome to the forum. You have come to the right place and sounds like you are going to be in good hands. everyone here is so helpful and encouraging. Let us know how the appt. goes on monday. Will be thinking and praying for you.

Just got back from Yale. After Dr. Sasaki examined me and took a chest xray, he presented my file to his team (16 other specialists).

They recommended surgery to remove lesion and then taking skin from my wrist to graft to my tongue, then chemo/radiation.

He said it shows no signs of spreading.

Wonderful hospital and team. They all came over to me to take a closer look at the lesion and each one squeezed my hand before they took a look. That meant a lot to me.

Gail,
That sounds good. I take it you've had all the scans--PET, C-T to find neck disease. And you don't need more surgery then?

I hope it all works out for you. Lots of us have had those treatments.

Anne

He said it was caught very early - had no signs of neck disease. He said I was lucky I had an earache or else I might have ignored it - like some people do for years. Will decide on other scans after the surgery before radiation/chemo.