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.