Hello all.

Much has happened since I last posted. CT showed Stage two and "something" on my left vocal cord. Was scheduled to have all of my teeth pulled in prep for radiation until another doctor determined that surgery would be the best first action to take.

I have Radical Tonsillectomy & Neck Dissection scheduled for Oct 19th, will determine if my vocal cords are affected at the same time. I have no idea how many nodes will be removed as they will freeze biopsy as they go along. Won't know if radiation is to follow until after the surgery.

I'm told that it hasn't gotten too big and that surgery should remove everything. Even prior to this happening, I know that's not something to bank on. Having only had a CT, I'm not comfortable with the initial diagnosis as my throat really hurts much lower than the tonsil area. I'm not a doctor so I guess I'll have to wait and see what the biopsy's show as they get into it. It would appear the best approach would be to removed everything possible during the surgery and then follow up with a PET, schedule radiation to make sure everything was killed off. Again...I'm not a doctor.

I'm having this done at Stroger Hospital in Chicago which is a county hospital but a Level One Trauma Center with excellent resources. Which might be why a PET scan was not ordered, I don't know. I've read that PET scans are the best test for Neck and Head cancers. She told me they can take out the right tonsil at the same time, it wasn't necessary and would just cause more discomfort....is this a wise choice or should I just have it removed at the same time? Would make sense to me to just take that one out as well...it's not needed and just another place for something to appear. Am I wrong in thinking this? I'm going to be in pain anyway...so why not just have it done?

My biggest concern is that the ENT doing the surgery is a senior resident...I'm assuming under the guidance of an attending surgeon. Four years of medical college for the MD, and she's in her last year as a resident. I really wasn't prepared to hear the recommendation to have surgery, so as the meeting went, I didn't even think to ask how many of these she has done. The more I read about the procedure, the more I get worried that nerves and muscles will be damaged beyond recuperation or repair. I have to keep reminding myself that if she didn't know what she was doing, she wouldn't have gotten this far. There is a higher percentage of mortality with this surgery than many others.

On a lighter note, my affairs are all in order, so I guess it's better than having a heart attack, leaving my family to sort things out.

Again, I will find out more in the next week or so. Thanks for all the kind words and concern given me, I don't know any of you but you have helped me cope with this problem like no one else could possibly do.

Please feel free to private message me with any suggestions or just to converse. I don't yet feel as though I have anything to contribute, that's surely about to change. Sorry for rambling!

Thank You Sincerely.

Don

Hi Don,
Since replies to forum posts can help lots of people who may be struggling with a similar issue, I will post right here instead of in a private message...if you don't mind.

Have you been to a Comprehensive Cancer Center for a second opinion? They have the most experience with treating cancers of all types and particularly, will be better equipped to give you an assessment of your situation and what would be the best treatment.

You seem to be questioning the qualifications of your doctor (sorry...but I would be, too...she's a resident.) And, parts of the treatment that is being suggested isn't making complete sense to you. I think you would benefit greatly from a consult at a CCC. There's a list of them on this website.

PET scans have a reputation for false positives. However, scans are a good tool for locating a suspicious spot. Then, the surgeon can biopsy it. As you are aware, it is only when cells are observed microscopically that they can be determined to be malignant or not.

Please, please get a 2nd opinion...and a 2nd opinion about the teeth, too wouldn't hurt...you may not have to have all of them pulled if you end up having radiation. If nothing else, you do not want to be remorseful later for having missed an opportunity to find out what the experts had to say.

I'm sure glad we did...even if the second opinion came in a little late. It could have been worse.

Wow...sorry it's taken me so long to reply. Time really seems to fly now a days. As you know, I don't have very many options when it comes to second opinions. Prior to this and while insured, having this operation or even agreeing with the diagnosis would not have happened without a second opinion.

I guess it is what it is.

I do know the ENT that will operate on me came from a good school, and that the attending surgeons will be there during the procedure.

My cousin is a plastic surgeon that specializes in hand surgery, he told me that the staff at Stroger and residents in their last year are very qualified. I have to remember during my stress that this hospital treats more trauma situations than most, it's the hospital that all the extreme cases are brought to from Chicago's inner city.

Anyway, a week to go, I'll let you know how things turn out. Thanks for helping me through this.

Don

Hi Don,

I'll be keeping you in my thoughts for everything to go well!

Take care and keep hanging in there!

Sandy

Me too sending blessings and positive vibes your way... You'll do fine... Try not to stress!

Thanks so much for all the kind words and wishes! It's almost 2am Tuesday....can't sleep. I'll update when I get back home, hopefully Thursday as they said I would be there at least overnight from the surgery Wednesday. Thanks again!!!

Hi Don - Hope everything goes just fine with your surgery tomorrow. Take some deep breaths and try to relax. Write down whatever last minute questions you have. When my son had his surgery, we had to be there very very early and there was a lot of waiting and paperwork to take care of. He brought his camera and had us take pictures while he waited! Bring someone with you, if you can - it helps with de-stressing. I used to live in Chicago for about 20 years. Lots of nice people there. Give us updates whenever you can!

Hi Don:
Just wanted to say good luck on your surgery tomorrow, from a fellow tonsil cancer victim. I will say a prayer for you, and feel you will be in good hands from what you have said, and everything will be just fine.
julieann

Good Luck on your sugery tomorrow. We are all thinking of and praying for you and the best possible outcome.

Best wishes for your surgery tomorrow Don.
Let us know how it went when you are able to do so.
Will be thinking of you.
Gabriele