Hi All,

Here are doctors visit breakdown. (Hold on, I am coming to the point)

1. First Visit to an oral surgeon - Biopsy was performed 11/20
2. Second Visit to the same oral surgeon - To discuss biopsy results 12/4
3. First visit to CCC Columbus OH - To see ENT surgeon and get primary diagnosis based on biopsy reports 12/10
Endoscopy was performed and PET scan were ordered
4. Second visit for PET/CT - on 12/13
5. Third Visit to CCC to discuss all reports on table i.e. biopsy, endoscopy, PET/CT and primary diagnosis ENT performed during first visit.

Putting everything together, here are results and options.

Exact Staging - Stage III Squamous cell Tongue
Local only, no traces elsewhere in body based on PET scan.
Treatment options are given : Surgery + Radiation
Loss of tongue: 1/4 to 1/3 at the most.
Down time after treatment to normal life as explained by doctor : 12 weeks (I'll rewrite this answer after actual experience in future after 3 months).

Next Step: Schedule to see CCC in Chicago on 12/20 and CCC in Philly on 12/23 for second and third opinion right ahead of treatment.

Mid Jan is a time frame treatment will kick off. I am 100% optimistic with no fear and prepared to face upcoming schedules. All we can do is move on, there is no going back....

BIG Thank you to all supporters and Good luck to all fellas reading my posts....

First opinion at CCC OH, doctor recommended for surgery + Rad. Since tumor is visible clearly and will be a viable option to lose 1/4 to 1/3 of tongue.
Doctor don't want to use camo+Rad in first line of treatment at this point. According to reports I rad, he clearly mentioned in his recommendations that he had offered me surgery+rad for treatment unless I want different combination of treatment by choice.
Taking Second and third opinion which I'll add (edit) here only.

Thanks all for your time. love and affection....

The surgery is not too bad.. Been there done that... Hugs.

Hi Ankur, I had the same options presented. Lost just over half my tongue, surgery is scary, but doable. Worst part is the traech. Type A personality - I hated not being able to talk, but it was short-lived!

Good luck.

Tina... yup... totally... even type non A personalities... (I have the personality of a surfer... whatever dude...) I still hated the trache. Hugs all.

Cheryld,

Thanks a bunch for response. Now question I have is, how much speech you regained and within what time frame?
I mean were you able to achieve almost 80% or 90% or 95% speech after surgery and how long it took to achieve this max speec recovery?

Thanks again

Hey Tina,

Thanks a bunch for response. Now question I have is, how much speech you regained and within what time frame?
I saw you receltly had a surgery, how's your experience in terms of communication? Challenges, hopes and actual achievement. Please try to put together in your real words. To what extent it is possible to recover speech loser to your past real speech.
I mean were you able to achieve almost 80% or 90% or 95% speech after surgery and how long it took to achieve this max speech recovery?

Thanks again

Ankur

I know you are trying to prepare but the answer to your speech question is not an easy one to answer. What works for one patient may or may not work for another. This goes with meds, recovery and response to treatments, etc. Recovery is very individualized. Ive seen some patients without any tongue surgery who now have barely understandable speech while others who have had almost total glossectomies being able to communicate so people can understand them.

After a glossectomy there will be swelling and each surgery is different. Some patients have spoke for a living so they probably would bounce back quicker than someone who didnt. Alot depends on how much tissue is removed. There are just too many variables to be able to compare one patient to another with this.

Having a good speech pathologist to help with enunciation will be the fastest way back to good understandable speech. Focusing on what is in your control is the best way to prepare for whats coming up. I know its scary, everyone is always afraid of the unknown. Try your very best to stay busy doing positive things so the time passes easier.

Good luck!

Christine,

Thank you so much for detailed answer. I loved the way you define reality instead fabricating hopes with sweetener.
I am definitely bringing speech pathologist on board ahead of the treatment to draw post surgical speech recovery blue print. And I fully agree with your statement, variety of variables and individual recovery pattern are vital for speech recovery. However, knowing the facts and being a part of internet age, I am trying to lined up best (most suitable to my case) resources and variables to achieve best possible outcome. I am optimistic and carry higher than average positive outlook. Psychologically I've accepted where I am and where I want to go. That's the game.

Christine,

I saw a second team of ENT surgeon, Radio Oncologist and Oncologist at CCC in Chicago. Team spent full two hours to discuss my case with all possible scenarios, pre and post treatment conditions and trade offs attached to each options I was presented. They admire my proactive approach of having homework done ahead of time. They really impressed since I gave them biopsy, endoscopy, PET/CT DVD and a first full opinion (30 pages) by CCC in Ohio. It was really easy for them straight jump on discussing options than going through all diagnosis again.

Below is a drawn conclusion (recommendations) by second team.
Stage : T2N2 (III)
Options: Surgery + Combo of Rad$Chemo (Based on second pathology reports)
Loss of organ: 3.5 CM x 0.5 CM right side tongue.
Judgement: Will have full swallow and speech after full treatment cycle. So they told me that in your case we won't even call and consider it as "partial glossectomy". This will be a minor surgery which involves less than 1/4 of your tongue lose so we can;t call it "glossectomy". That's a good thing for me. Relieved me a lot after this visit. Honorable doctor I saw today, has treated stage 4 cancer of a famous chef without surgery with full perseverance of his tongue. The chef is cancer free since Dec 2007 and enjoying his life in 2013. BIG Smile.

So the doctor told me, "I appreciate your came here to see me because of chef's success story. Each case is different and there are certainly trade offs attached to each options you pick for your treatment. In your case tumor is local, visible, easily accessible and practically possible to perform surgical procedure without loss of entire tongue. This option will give you many a benefits, including natural saliva, taste, swallow and speech since we are not removing tip of your tongue, not even 1/3 of it."

Next Steps: I panned 4 opinions (Only from four different CCC) right before the treatment within the first 20 days of it was first detected. Dec 20 is the third stop at next CCC in PA. Dec 26 is fourth and final stop at CCC in PA only. The last team I'll see will be the team I'll work with for the treatment.

Thanks a bunch, hugs and have fun holidays. I'll have really exciting Christmas and new year too with my family right before the treatment kicks off. Game plan is, 6 months of break without speculation, kick the cancer's butt and go back to work with full family life with fun.

Marry XMas and Season's Greetings to all fellas here.

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.

Sorry, which CCC are you going with?

Susan,

Thank you so much for reply. Appreciate your time to read my posts here. FYI, Yes I went to Fox Chase (Third opinion) but will have treatment at Abramson Center (Fourth opinion). It's closer from where I live and fact is team on both center are known to each other very well.

Thanks

Abramson CCC which is closer to FoxChase but is closest to my place.

I also went to Abramson CC (FYI - part of the Hospital of the University of Pennsylvania or HUP) for a 2nd opinion in 2005. Also a great hospital and I know a number of OC patients who were treated there with great success. I did not like the doctor (ENT/surgeon) I saw and for personal reasons I would not go back there, although he is one of the best in the field. A good choice.

What treatment are you having?

Surgery on tongue is planned as part of initial treatment plan by an ENT. He never ever mentioned to see entire team (Chemo/Rad specialist) at this point. Surgeon seemed highly confident on his treatment plan judgement after 40 minutes of core discussion. Neck dissection and combination of Chemo/Rad are part of treatment blueprint but not part of first phase of treatment plan. Surgeon mainly focused on maintaining natural algorithm of human body functions than attacking to a disease resulting affecting other functionality. Even after seeing my PET/CT scans, he explained, he doubt on these results since in my case node involvement is a highly likely speculation based on PET/CT. So a surgeon decided not to perform neck recession in first place. Surgeon decided to adopt an easy going approach instead of standard attacking approach that requires all weapons to fire at the same time.

It's amazing you got all 5 visits in 20 days. I don't think it would happen in a NYC. Good luck with your decision, and whatever it is, don't look back. Good luck with surgery too.

Paul,

I consider myself lucky here to have appointments lined up at four different CCCs within 20 days of time frame. Like I said, I was diagnosed in OH, so that was my first place, Chicago was 5 our by drive and so was a second stop. PA is from where I am and PA has two CCCs. So returned to PA and arranged for remaining two opinions within 4 days. I am not sure, but I didn't have to struggle to have appointments with shorter time frame. Spontaneously, all CCCs came back with offering dates within a week time frame only when I called them.

Thanks for your word of appreciation and motivation. That's a biggest antioxidant here I need.

Cancer can seed to the nodes and when in the early stages WILL NOT be picked up on a scan.
best of luck hopefully you wont have to have a second surgery - friends husband was recently diagnosed with the same cancer and they did the surgery told him he was cured. He went away for a month - a node popped up. When they returned the dr. Looked at it and the cancer was back and spreading and now they are chasing it. If three drs. have suggested a dissection... I would be leaning towards listening. But to each his own.
take care.

[quote]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.[/quote]
Cheryl's last comment had me go back and read it all again. There is a range in treatment from aggressive to minimal. Every doctor and the tumor board advised an aggressive approach - fire all guns the first time around and try to make the kill complete and thorough. I sleep very well knowing everything was done and no missed cancers were hiding out.

If the diagnosis is loco-regional and there is cancer in a lymph node, then I would not think twice to get rads and chemo. The chemo will seek out and kill the microscopic cancers if they are there but not detected. The rads will ensure a total kill in the neck area.

The very worst thing is recurrence so it generally is best to attack like no tomorrow. Obviously, if there are other circumstances and considerations that preclude going full guns then by all means heed the tradeoffs.

Cheryl,

Thank you so much for wise justification to my post. I appreciate your judgement. Here is a matter, what doctor said; "I'll see you in 14 days after the first surgery and will have closer look on your nodes to determine second surgery for sure even it is a one node involve. I just don't want to invade everything in first place neither I am avoiding neck resection, but like to perform it in a more productive way". He wants to see post surgery pathology report to gain better insight on involvement on number of possible nodes.

Hi Ankur, sorry for the delay, I was away over Christmas visiting family, and my parents internet access is limited.

Yes, I lost about 55% of my tongue. I have the tip, but lost most of the back (the incision is diagonal toward the back). The 5% of my speech "missing" is small stuff (I have a longer "s" sound than before), but most people wouldn't notice.

My tongue was reconstructed with a forearm flap. If you want to see the photos of post-surgery, you can "friend me" on facebook - send me a pm and I will give you the full name to search me.

All of my swallowing function is back, although I have to be careful to take smaller bites, and I drink lots of water when I eat, as there is limited saliva production. The benefit is that I lost weight and am now a size 6!

I immediately started eating after release from hospital. Pureed food lasted about 2-3 days and I started with soft foods (pasta, soup, etc.). I was released from hospital October 20, and was eating turkey that Christmas (albeit with a fair bit of gravy).

Tina thank you so much for getting back to me. I usually come here every day bit didn't reply your message. i do apologize for the same. Did you have a breathing and feeding tube for couple of weeks?

Thanks

Here comes complete end of diagnosis.
Finalized the treatment blueprint today with a highly experienced (and admirable) team after a month of nationwide opinion hunt at multiple CCCs.

Surgery on tongue
One side neck dissection
Reconstruction (Free Flap, not an option, its mandatory)

Will keep you posted after that.

Sounds like a good plan, and research. Good luck.

Sounds about right... that's the standard treatment- hugs

Thanks all for your "well wishes" for my upcoming trip to a standard treatment journey.

We will be here as long as you need us so let's clear this crap from your body!

All I say, thank you all. Still working (of course from home) a week prior to treatment. I am fully functional. Enjoying all food I love before upcoming expected changes.