PROBABLE STAGE 4 TONGUE CANCER

Tony
I am 48, so close to your age. I searched for every piece of info I could find. Do so cautiously. My radiation oncologist recommended this site. I am early in the treatment process of stage IV Tonsil cancer and am learning to understand that I know nothing about this the way I thought I did in the beginning. It's a lengthy... well mind boggling fast actually beginning!
I find solace here. I hope that you will as well. Cry when you must, get it out and move on!
as you go through this keep records and mark off the procedures. I have had 7 different surgical procedures in 7 wks. Not that you will, each of us is somewhat different , yet painfully close to the same. I have adopted Forest Gump's theory of " well that's one less thing".
There are GOOD folks here. Come back and God bless.

luv4lacrosse said:

GOOD NEWS
My Doc called me last night with the results of my PET Scan. BOT is confirmed as the primary and is about 2 CM. Mets to the Right Lymph and some Superclavicular nodes also. NO OTHER SPREAD ANYWHERE!!
I am to have some pre testing next week and on the 21st I will have the BOT biopsied and he will see if he can use the robot for surgery VS going in by hand. The Robot he says is not invasive and will speed up my healing process. Worst case he goes in by hand and it takes allot longer to heal. Radiation and chemo to start about 6 weeks after a hopefully successfull surgery.

I want to PERSONALLY THANK everyone who so kindly communicated with me as you have made this situation a hell of allot easier to deal with. God Bless you all!!

An extra shout out goes to my "homie" Greg 53.

Best!!

Mike

Mike that is truly awesome.
Mike that is truly awesome. I wish you the best an I'll keep you in my prayers.
God bless you friend.
deb

tonyanddenise said:

Tony
I am 48, so close to your age. I searched for every piece of info I could find. Do so cautiously. My radiation oncologist recommended this site. I am early in the treatment process of stage IV Tonsil cancer and am learning to understand that I know nothing about this the way I thought I did in the beginning. It's a lengthy... well mind boggling fast actually beginning!
I find solace here. I hope that you will as well. Cry when you must, get it out and move on!
as you go through this keep records and mark off the procedures. I have had 7 different surgical procedures in 7 wks. Not that you will, each of us is somewhat different , yet painfully close to the same. I have adopted Forest Gump's theory of " well that's one less thing".
There are GOOD folks here. Come back and God bless.

Mike- same treatment as mine
Mike,

Glad you posted. Was beginning to wonder what was happening with you. I had same diagnosis. Right tonsil with mets to lymph nodes. I had the rad neck dissection and tonsillectomy on the same day. I spent 2 nights in the hospital. Not to scare you, but probably the most intense pain I've had thru this whole deal was the tonsillectomy. My ENT told me I would be cussing him out when I got home...And I did. But pain for me, from that operation only lasted 2 weeks. I missed 2 weeks of work after surgery and was fine by the time I got back to work. Bad for awhile but over before I knew it, really.

As it's been said over and over, everyone is different. But it seems to me the tonsillectomy is pretty rough. Throat was very sore for the 2 weeks, but healed up quickly after surgery. If you know that it's rough going in, that should be half the battle. I had to wait til the neck healed up before starting rad/chem treatments, which was about 3-4 weeks. I'm 15 weeks post-treatment today so about 6 months from surgery. My neck and shoulder can still be stiff, but I'm working out and that seems to be improving daily. And most of the effects from surgery are very minor now. At least that's how it's gone for me.

Good luck and keep posting.

Positive thoughts coming at ya!
Greg

luv4lacrosse said:

PRIMARY SITE DIAGNOSIS
I just completed what I thought was going to be the reconfirmation of BOT cancer and my ONC says my primary site is my right tonsil. Looks like the radiologist who read my PET scan was wrong. I had two spots on my tongue and one spot on my tonil tested. The surgeon now says the invasiveness of my surgery will be less than if I had the BOT cancer.

I meet with the team of Doc's again Thursday for the results of the biopsy and to set the date for the surgery.

With the tonsillectomy and neck dissection done at the same time, how bad should I expect to feel? To date I have felt fine with the exception of a sore throat from the biopsy. I think I will be in for a very rude awakening when I come home from the hospital.

Mike

Good to have it pinpointed, Mike
Mike,

I had my right tonsil removed at the end of October. No neck dissection, so I can't tell you what your recover will be like. It took me longer than I had expected to recover (maybe my expectations were way off - I assumed I'd be a-OK in a few days). Please do not search online for tonsillectomy support sites - I did, and got more than I'd bargained for - it seemed that the people on the site were in general folks who'd had the absolute worst time of it - horrible suffering and complications abounded. I spent a good deal of time worrying about things that were certainly not likely to happen to the average patient.

I MUST warn you, however about your uvula (sp?). It swells afterward. It was horrible - I thought I'd choke or suffocate - many people feel that way. I've never heard of anyone who did choke or suffocate. My doc impressed upon me the importance of keeping up with both pain meds and water intake. I think that being well-behaved on my meds and water schedules really helped my recovery. Hope yours goes well.

luv4lacrosse said:

PAIN MGT
Pam, thanks for the reply. Part of my problem is I have felt really good to date and this may be causing me to not recognize how bad I will feel when the surgery is complete. The biopsy of my tonsil is still very painfull 6 days later.

I am so ready to just get the treatment started. Waiting for it to happen is draining my good spirits.

Best!!

Mike

Hate the Wait
Yeah, Mike - waiting was irritating for me, too - same story for many. Soonest begun, soonest done. I also did no suffering before the cancer "popped up". I felt no pain - just a sore throat (that I attributed to post nasal drip, so that tells you how mild it was) - it was discovered thanks to one of my two infected nodes becoming HUGE (thank goodness it got huge - there's no telling how long I'd have gone without having my throat checked). First pain was getting scoped (not bad, but did hurt) - next was open biopsies with tonsillectomy. For me, that pain was considerable, and I have a pretty high threshold.

Another tip - ice is nice - during parts of my tonsillectomy/biopsy recovery, it really helped to have a cool pack on my neck - docs gave me one for the neck. Do well.

Pam M said:

Base of Tongue, Too
Mike,

Like the others, sorry you had reason to be Googling "cancer", glad you found this site. The people here have made a huge difference for me - so much useful info and support.

I was diagnosed late Oct. 2009 with Stage IV base of tongue cancer. It had spread to two lymph nodes, one very large, one slightly enlarged. I finished treatment March 16, 2010. Last Friday, my doctor said he would consider me to be in remission. Of the three "hot spots", only one now shows any metabolic activity (the smaller lymph node), and even that activity is considered to be in the "normal" range.

Like you, I nearly Googled myself into a state of despair, becoming obsessed with some "doom and gloom" findings. This site exposed me to real people (not statistics). It raised my hopes, and gave me extra tools for my cancer-fighting arsenal.

Many things treatment-wise weren't as bad as I'd imagined they would be. Of course, we also have that "continuing to live" incentive . . .

Good luck Thursday. Take notes, take a friend, ask questions, have the friend ask questions. Write down a list of questions before you go - refer to the list, don't assume you'll remember on your own. When you have a game plan, let us know. Whatever your protocol will be, chances are there are multiple people here who did the same treatment, and are here to talk about it, and willing to help light your way.

Do well,

- Pam

Just diagnosed

Hi,

I was just told that I have stage IV tongue cancer, to say the least I feel that a boulder has been dropped on me. I want to thank you for this article it has been helpful. 

Can an you tell me about how long it was for you to return to travel and what will become the new norm?

Mike N.

aemnoca said:

Just diagnosed

Hi,

I was just told that I have stage IV tongue cancer, to say the least I feel that a boulder has been dropped on me. I want to thank you for this article it has been helpful. 

Can an you tell me about how long it was for you to return to travel and what will become the new norm?

Mike N.

Mike....

Go here:

http://csn.cancer.org/forum/164

Under Head and Neck Cancer you'll see "Post New Forum Topic", and start a new thread all of your own....like Matt said this one is old...like 4 years old....you'll get a lot of response with your own thread.

p