Hello to all! On 4/1/08 my dr. called to say the biopsy was positive. On 2/17/14 history repeats itself. This time surgery is needed as I used up my allowed supply of radiation in 08. The talk alone of "grafting skin from wrist & leg, breaking the jaw bone" I am numb with fear. I ask for help from those of you that have had this surgery. I am so afraid of what it will be like 1st coming out of surgery. How much agony will I be in??? If it wasn't for my kids, I would let this cancer consume me & get it over with. I don't fear death. This surgery has me in a panic. Next step PET scan date. Please let me know everything of your surgery! THANK YOU

Is this base of tongue or oral tongue . It sounds like oral tongue. I would also get a second opinion as you can be radiated more than once. Hi and welcome,

Welcome to OCF! I would suggest you seek out the best medical care you can. Especially important is a second opinion. If possible try getting into one of the top CCCs.

Im surprised your doc gave you all that info over the phone. Something that has a good chance of it being overwhelming info should always be done in person.

Best thing I can advise is to read and educate yourself about your disease. A recurrence does not mean its the end. Ive been thru 3 rounds of OC and luckily Im still here. Of course everyone is different and will respond in their own way. Hang in there! We will help you get thru this.

Thank You Ladies! You are such an inspiration and how I need your input. Who could understand better than those who have (unfortunately) walked in these shoes.

Hi Dianne - I just went through what you're about to; in 1999 I had chemo/rad only, then this past July it showed up in the same spot again (BOT) and I had to have the surgery.

Numb with fear I definitely get, I actually think it's a little bit harder the second time because after so many years you rightly believed that hell was behind you - when you get hit with the news a second time you have a much better grasp of what it means, there's no blissful ignorance. I feel for you.

One thing I can tell you that is a little positive is that the recovery from surgery is different than from the chemo/rad; surgery is a short term beating, then you come out of it and start feeling better. Chemo/rad is a long, drawn out process with lots of bad side effects. The beating from the surgery is tough the first week or so, but the worst is the first 2-3 days, then you start feeling noticeably better each day (but not back to your old self). I was pleasantly surprised by how soon I started feeling normal given what they had done to me. I'm almost 6 months out and back to work and aside from the issues associated with eating/speaking I'm totally back to normal.

Getting back to my family was the number one thing that got me through the surgery. It was incredibly good to get home. Hang on for that moment.

Hi Dianne - just re-read your note, it sounds like your greatest worry is the day or two right after surgery. You will most likely be on so much pain med that it won't be agony, I'd categorize it as severe discomfort. I had at least as much of a problem getting the nurses and docs to leave me alone for sleep as with anything else, they kept coming in every 30 minutes to poke the flap to make sure it was getting blood, and I couldn't get any rest. You'll be bored, very uncomfortable, but not in agony, at least if my experience is any indication. It won't be easy, but the nurses will get you through it.

Your docs can make sure you are not uncomfortable. Make sure they allow you liberal access to 2 different pain meds. This way if one wears off and its too early for the next dose you can always take the other one. A nurse taught me that trick, thats what got me thru the first couple days awake after my 2nd mandibulectomy. It wasnt easy but believe me....if I can do it so can you.

We are behind you all the way!!!

Gosh, I just LOVE YOU GUYS!!!! Thanks for your response. I hang onto every word you say! I have a PET Scan date for next Fri.at 9:30 How about this? I am going to wake up @3am because I am not allowed to take the Ativan until I am at procedure. I NEED Ativan to work up the nerve to go to the scan! I figure if I am sleepy to start, I may be able to stand "the coffin" f/the 45 min (10 just on my neck).

Hi I'm not sure how recently you've been in a ct or PET machine but the ones we have look like a doughnut not a tube... So there not really an "in" - usually I just close my eyes and meditate through it. The reason I asked initially about the base of tongue/oral tongue thing is it sounds like an oral tongue cancer which is the same surgery I had and generally has a different cause from base of tongue which is down your throat. One is often HPV related (BOT) where as oral tongue can have a few different causes (some unknown) I too had a tumor removed from my tongue and was grafted from my wrist. I also had a neck dissection. I would find out if that is also in the cards for you - hint - it should be. Good luck on the scan - another hint - those results can be accessed usually win 24 hours make sure you get back into the drs. office for the results ASAP. Another spot of info - you can ask your dr. to confirm this, but just because nodes don't show up on a scan doesn't mean they are clean there can be microscopic cancer there that doesn't show up until it reaches a certain size. (That's why I mentioned the neck dissection - assuming you've haven't had one) the surgery itself believe it or not isn't that bad usually you're numb afterwards particularly if you've had a neck dissection. The breaking of the jaw was something I managed to avoid, though I agreed to it if that was the only way he could get all of the tumor. I'm saying all of this not to scare you but inform you - you want to level both guns at it if you can. And do ask about rads again. It has been done many times - hugs and good luck on the scan.

I am in need of info & already scared, because of what I have already been through & what is still the unknown! But the feedback has all been wonderful. I have had no surgery yet. in 2008 I received 37 rad. treatments & 4 chemo. That was for base of tongue. I never asked if it was from HPV. I always blamed smoking! I have decided to face this surgery head on. But I'm gonna stay "pissed about it" I hate doing anything twice!