I think time is of the essence in this situation.

My first experience at Moffitt was fast and furious. Granted my ENT got me an appt within a day but once there I saw 3 different docs (RO, MO and Surgical Onco) that same day and they even scheduled an exploratory to find my primary 2 days later.

I haven't jumped in for a while..but my experience at MDAnderson was quite different from Emily's mom. I was called within 24 hours of the online referral and was sitting with a team of doctors within a week and a half. Two days of tests and surgery 2 weeks later. I'm glad I took the time. Still the decision is a personal one. I know my original ENT told me waiting on that referral was ill advised as "the cancer would spread rapidly", but that additional 10 days left me with most of my tongue and cancer free. Worth the investment for me.

My doctors had a tumor board, and they still insisted on hemiglossectomy first with a free-flap transplant, neck dissection and then radiation.

It's a tough road to go down. You'll be in hell after surgery and then start to heal and then you'll be in hell again with radiation and chemo. But about a month or so after radiation, things start to get better.

I am 25 and they gave me no other option besides surgery first and mine they took the whole right half of my tongue and some of the left side so they could get clear margins.

Sometimes you don't get a choice of trach either, but you can ask and see. As of right now I am a month and a half out of radiation and almost 5 months out of surgery and I am back in school, my energy is back, but still healing from radiation and I have to go to therapy for lymph edema and my right shoulder from the neck dissection and for my left hand from the transplant. But for now they say I am cancer free. PET/CT scan is in mid october so will know more then, but so far, I feel good. Tongue still hurts when I yawn and eat and stretch my mouth, but not nearly as bad as it did before surgery.

Whatever happens, I wish you the least amount of side effects as possible and let me know if you have any other questions.

Take care

Hello All!

I wanted to update you on my status as it's been about forever since I've been on...

I went ahead and had the surgery, about two weeks ago - September 15th. It would have been nice to avoid it, but when the last of my options told me that there was no way to get my tongue back to its "normal" state, and keeping in mind the pending complications if you have chemo/rad up front, I relinquished my tongue. This was no easy decision by any means, but I think I've done pretty well.

I would love to catch you all up as to how I've gotten here and the events leading up to the surgery, but I don't have the time or wherewithal to re-type every thing. I've set up a blog - www.scottversuscancer.com - where I chronicle just about every step that I've taken on this journey. I also post regularly on twitter - @scottgotcancer

Of particular interest may be my post about coming home - http://www.scottversuscancer.com/2010/09/25/scott-returns-home/ - and the post about my meeting with the radiation oncologist - http://www.scottversuscancer.com/2010/09/25/meet-the-radiation-oncologist/ . It was this appointment which set me on the surgery course.

I did meet an awesome woman, through this board, [misskate] here in SF who'd been through pretty much the same procedure and I have to tell you how great it's been. She's been an active supporter, advocate, and friend. If you can, I recommend meeting someone who's been through this yourself. Their impact cannot be understated.

If you don't want to check out my site, here's an idea of where I'm at today:

"All in all, I�d say I�d did alright.

* I was able to keep about 25% of my own tongue (right side, base), which helps me speak already and with swallowing.
* I didn�t have to come home with a tracheostomy, which was a big deal for my self esteem. I have a hole where it was, but that�s closing up.
* I can breathe and smell mostly normally.
* I can walk, and have use of my arms. My left arm is a little messed up right now, but ought to get better.
* While I can�t eat now, soft foods are around the corner.
* They issued me a portable suction machine which I have yet to use, thankfully. I do get a lot of saliva, but can control it mostly.

If you wan to keep score, I would say that Cancer and I are tied at one point each. I�m not sure there can ever be a winner, though. No matter what I try, or do, there will always be an elevated risk of cancer returning and picking up where it left off.

Until then, I�m pretty happy!"

I'm trying to get caught up with various things around the house and on the computer, after which I'll make an effort to be more active here on the boards.

If I can be of any assistance to anyone, in any way- please don't hesitate to contact me.

Thank you all for your previous advice and I look forward to being a contributing member of this site!


Scott

Scott, I checked out your website. Boy you sure are brave to pose like that!!!! Ive been where you are after a major surgery last year. It takes a long time to recover from something as traumatizing as this. You really will get better but it will be a long process. The arm wound will heal but still end up looking like a shark bite. I have one of those too. I have 3 places where graphs were taken from my legs. You are fortunate that you only had one graph. Yes, I know it sounds rediculous to say that you are fortunate after what you have gone thru. Ive learned to count the small blessings in life. I love your positive outlook.

Im so glad you had the opportunity to meet someone from OCF. It makes a huge difference in knowing you are not alone!! I have been fortunate enough to meet many OCF members. They are my favorite friends

Rest and let your body heal. Best of luck to you

while i had the scars & swelling under my jaw having the trachy show didnt bother me at all , but as everything healed it slowly became an issue & i mostly was able to hide it under the collar of tee shirts . now thats long gone its just my crooked smile i get conscious of .