You have a great outlook! I LOVE how you have not just taken the first opinion, that you have gone to several top CCCs before you will make your decision. This shows me you know the seriousness of making the wrong selection of a treatment facility.

Wishing you all the very best with all your choices.

Happy Holidays to you and your family.

The Chef is probably Grant Achatz of Alinea. Good luck, and happy holidays.

Also, Chef Achatz had chemo first, probably induction chemo, followed by Chemoradiation, and followed by a neck dissection, tongue biopsy, but no tongue surgery, I believe. He has a book, new restaurant, and read many articles the last few years of his success.

Ankur, my speech is almost entirely back (I would say about 95%). The remaining 5% is really only noticeable by me. Occasionally someone will ask if I am from the east coast as they hear a slight accent.

I was back to work 20 days after my surgery (too fast, would NOT recommend that), and I did speech therapy for 4 months with a therapist, and 1 hour on my own every day since. Did I mention Type "A" personality?

I was understandable after a month, and it progressed thereafter. By March I was confident enough to teach a conference in front of 500 lawyers. The tone of my voice was deeper until about May, when it reverted back to my normal pitch.

It was frustrating at times, but I had also asked the speech therapist to record sessions that I could go back and listen to for motivation. When you hear yourself every day it's hard to notice the improvements, but when you can hear from month to month, it was very gratifying and motivating to keep pushing, as you can hear the major changes.

Way to go... hugs

Hey Tina,

First of all, Marry XMas to you and your family.

Thank you so much for reply. I am so excited to hear that you regained your 95% of speech. Based on your profile, (please correct me if I am wrong), you lost little over half of your tongue and have regained almost 95% of your speech. Is that correct?
And next question is, did you opted for reconstruction of your lost tongue or you decided not to reconstruct?
if you did not have it reconstruction, what about your swallowing function? What are percentage on swallowing you achieved over a period of time?

Thanks in advance. BTW, I am posting my third opinion from CCC today here soon.

Thanks
Ankur

Paul,

Thanks for reply. I appreciate your time. You are right, that's him. I decided to listen a doctor who treated him and made no mistake. Advice fro his was invaluable.

Thanks
Ankur

Christine,

Thank you so much for complements.
I saw third CCC here in Fox Chase in PA this afternoon.
Updating original post to avoid redundancy. Please visit there for details. Fourth and final stop is on Thur 12/26. Will keep you posted.

Thanks

Christine,

Here are details from third CCC center in PA.

Saw an ENT/Rario Oncologist. (One doctor with both skills set). Here what she said.

Stage: T2N1 (III)
Options: Surgery + Combination of ChemoRadiation (Depends on second pathology results).
First time I encountered Ultra Scan. She confirmed a node involved on the same side (right side). She offered removing tumor with 1 CM clear margin (on top of the tumor part) with clear intention of leaving no traces behind. Doctor in Chicago offered me 0.5 CM of margin. (I truly enjoyed different voices and different flavor of treatment for the same decease with little variations). This doctor today looked conservative to me. Team in Chicago was impressed with the way I saved my time and did my homework for multiple opinions. Here today, a doctor's nurse was disappointed and told me on my face, "we don't compare results with other CCCs" We perform our own analysis without comparing other's opinion. I went with the flow and accepted whatever she sad with full respect. Here comes doctor, I made her to listen 6 minutes of core conclusion from Team in Chicago and she agreed on it.
Today first time I came across (and was offered) new flavor on my treatment options, that was reconstructions. I asked doctor a question, natural is natural. You can not challenge design god has created. I asked her, "What are consequences of foreign tissues over a period of time. Meaning what if tongue tissues start rejecting / breaking up relationship with newly implanted tissues due to aging? Are there any reversal back up options? Are there any significant speech and swallowing functions? Are there any immune system challenging issues with such reconstruction (plastic surgery)?"
She smartly denied all answers without confidence and told me to go for treatment soon. She hardly answered any of my question precisely I asked.

Thanks for now.

Ankur

Here comes final opinion as I mat fourth team at CCC here in PA. I can tell you one thing, same decease, almost same high level opinions but with different approaches to achieve those. Here are break downs with the same treatment options.
Treatment options by all honorable teams from four CCC: Surgery followed by combination of Chemo+Rad

Differences: Remember all CCC came with same offerings with little variations in their treatment patterns.

First CCC: Surgery + Neck Recession on both side on a same day. 4-5 days in hospital. Chemo+Rad based on Second Report

Second CCC: Surgery + Neck Recession on one side on a same day. 2-3 days in hospital. Chemo+Rad based on Second Report

Third CCC: Surgery + Neck Recession on both side on a same day. 4-5 days in hospital. Chemo+Rad based on Second Report. Offered/recommended reconstruction if necessary.

Fourth CCC: First Surgery only. NO Neck Recession required at all in first place based on my PET/CT results. 1 day in hospital. Neck recession will be a second phase look up/thought (not actual surgery) on a following appointment after three weeks of first surgery. Chemo+Rad will be least case scenario in this case.

Conclusion: First of all "BIG Thank You" from bottom of my heart to country's top doctors at different CCCs I mat and for their time to review my case. I respect all honorable doctors who gave me candid advises in my best interest. Reason for all opinions was, I wanted to have treatment in PA from where I belong to and luckily I was on travel for a month in the Midwest while first time cancer was diagnosed and detected by an oral surgeon, so I took an opportunity to have multiple first round opinions right there (OH and IL) before I landed in PA for the final round of meetings. I thoughtfully arranged all five visits in 20 days since Dec 4. Schedule for surgery in the first week of January. Will keep you posted after that. Hopefully a week or two weeks after the surgery.

Ankur,

When I was first diagnosed in 2005, I was beyond scared and wanted to start treatment ASAP. I did some research before starting treatment but back then I wasn't able to find much information but based on what I found surgery only was the best option for me since I was stage I. Fortunately my doctor was the best ENT in the area. I did end up receiving RT about 9 months later (long story).

I 2010 I had a recurrence, and at this point I was a more knowledgeable patient thanks in a big part to the OCF forum and website. Since my options were more limited this time, I did as you did and sought multiple opinions including Fox Chase and Johns Hopkins plus my local ENT. Treatment options were very different (had 4 options) and it was a very difficult decision to make. I opted for surgery at Johns Hopkins.

I believe you are considering Fox Chase for treatment. I know a number of OC patients who were treated there and it is a great facility with outstanding doctors. Now comes the hard part to decide where to have treatment, but you've done your research and can move forward knowing you've done all you could do to prepare for your treatment and make an informed decision.

I wish you the best with your upcoming surgery and treatment. Please keep us posted and we will be here to offer support and advice.