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#131351 03-15-2011 01:23 PM
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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.

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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


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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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


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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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...

Last edited by Gail Valus; 03-15-2011 03:02 PM.
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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


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Thank you again, and God Bless you all..

See you Monday.

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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


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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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.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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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.

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Gail,
That's just what you need!
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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