I have not postd in quit sometime, so I was debating where to stick this (pun intended, we just don't laugh enough around here.) Anyways, to quickly update everyone. I have made it through both chemo and radiation(barely). Last day of treatment was Dec. 26. My tastebuds are awake and food taste pretty darn good. I am trying to gain some weight, it's not working that well, but I keep eating so sooner or later it will all stick. I lost about 30 lbs with treatment, but didn't have 30lbs to loose. I amdoing great!
I am now scheduled for surgery. I will have a radical bilateral neck dissection on March 2. While I am out the Doc will biospy the back of my throat. If anything comes back hot, it will be removed at that time. That's what's got me freaked out. I will not know what is going on until I wake up. I am trying to get my head around all this buy MAN it sucks. I may or may not have my mandible split. I may or may not wake up and need my PEG forever. I may or may not have to learn how to talk and swallow all over again. I guess others have gone through the samething and have made it. I know I will too. But I freak out everytime I think about counting days, or what I need to bring to the hospital. Nothing like a little panic attach in the middle of the day to stir everything up.
I know I'll be fine.
My RO has examined me, he is very confedent that he has blasted the heck out of it and the cancer is gone. But as he says he is just a man, he is not a biopsy, he could be wrong. My ENT says he is just a good Boy Scout and wants me to also be prepared for everything. And I do want to know best and wrost case but damn this is hard.
I guess I don't really have a question. Other than, how did you all make it through the unknown stuff. I try to stay busy. That does work for a bit. I do have some magic pills (Ativan) precribed because I freaked out over the mask.(seems silly now.) You can't get anything done on Ativan, though! Other than a four hour nap. Jueesh I'm rambling sorry
Anyone have any help for me?
Amy

Amy,

Did I miss something.....WHY are they doing a bilateral radical ND? Where are you being seen? Before I let them do what they are planning I would run to get another opinion and I would definitely want to know what has caused them to make this drastic decision!!!

Were you a tobacco user? Were you tested for HPV?

Amy,

The fear of the unknown is the worst. Especially when you add panic attacks to it...they are the worst!!! I have not been through the same treatment as you but I can understand why you feel the way you do. From what I read you have made it through so much already...you can do it. I'm sure it will be hard. Look at it this way. Maybe not knowing and not having to think about it will be good. Your doctor will do what is best for you while you are out and you won't have to worry and wait for more surgery. I wish you much luck and I'm sure people will post soon with good ideas for you.

Suzanne

David,
Slow down! My lymphnodes were huge! Left 3cm, Right 4.5cm. Even with 73gy on both side my lymps still aren't "gone" smaller but not gone. I have spoke to three seperate docs about this. I am good with it. I hate it, but I'm good with it.
HMMMM, I swear I updated that signature, wonder where it went. The answer is both. I tested positive for HPV16 and I smoked for 25 years. (is that right? I don't feel old enough to say that) I quit on my birthday last year. Almost 1 year ago. Because of my age my docs are confident that my cancer was caused by HPV.
I am being treated in two seperate places. My RO and MO are here in the town that I live in. My ENT (my second one) is at Baptist Hospital which is an affiliate of Moffett, just on this side of Florida. They have a tumor board, and everything a girl could want. Although my docs are 60 miles apart they comunicate better than doctors in the same hospital. I am very happy with the arrangement.
Oh and David, I need to say thank you. In Oct. I answered a post saying how much weight I had lost. You sent me a PM and pretty much told me I had to take care of myself and that meant feeding myself. It really straightened me out. I realized that I couldn't fight this and starve. I still lost weight. Not because of lack of intake. I had a hard time with the chemo. I know it could have been much worse though. I really appreciated that PM. Thank you.

Suzanne
"The fear of the unknown is the worst." Aint that the truth!

Well with your Signature Line updated what they propose makes more sense and considering who you are being seen by, I'll shut up and defer to their judgment. I have just seen so many that probably had unnecessary surgery that when I read your post with no mention of nodal involvement it just rang my bell.

[quote=davidcpa] it just rang my bell. [/quote]

now why does this make me think of Laugh In??

Patty

LOL
My nodes lite up like a Christmas tree for the PETscan, sorry to say. Right now I am busy freaking myself out because my ear started hurting again. I guess from the post that I've read, I can look forward to freaking myself out quit often. Great, like I don't have enough panic attacks on my own. : )

Amy,

Re your comment about your cancer being caused by both HPV and tobacco....obviously if you tested positive for HPV then it's a cause but I would think that unless another site tested negative for HPV then you or they would only be guessing that tobacco was involved. There are millions that use(d) tobacco that never develop OC and there is a small % of OC that is currently unassociated with a cause and perhaps there are other strains of HPV that are not targeted in the current HPV tests or perhaps there is another virus or agent that the scientific community has not discovered. That dual cause topic has been mentioned before and I guess it's possible although I have never seen it proven on this site or in anything else I've read. Brian would probably have some great facts on this.

Amy
Good Luck on the ND. It is unsettling that the ENT can't give better parameters - but have you asked the hospital for the actual surgery orders. At pre -op last week, I saw that my surgeon had put in: resection -left tongue lesion ;left neck dissection; tracheotomy; mandibulotomy; and free flap reconstruction.

Charm,
My ENT has given me what parameters he is comfortable with. I was standing next to him will he told his nurse what the OR orders were. The OR orders are writen in worse case. You know, just incase he gets in there and everything comes back with cancer, which it wont. I just wont know until the biopsies are done. Or I I should say I just wont know 'til I wake up. My RO is sure that nothing from "inside" my mouth will need to be removed. However, he is just a man and has no way to know for sure. The primary was my tonsils, they are gone. From what I have been told the rest is very responsive to radiation and chemo. So, I will cross my fingers and my toes.
Good luck to you also. I am hoping to read a post from you before my own surgery. Ours are 4 days apart I believe.(I don't post often, but I read a lot!)

David,
I smoked for 25 years, I tested positive for HPV. My doctors are certain that HPV caused my cancer due to my age. I believe this also. You stated that there millions of smokers that never develop OC, and that is correct. There are millions that will text postive to a cancer causing strain of HPV and never develop cancer either. As far as I know there is no way of knowing for sure that one or the other caused the cancer. My way of thinking is this. My cancer is "probably" caused my HPV 16. There is a "possiblity" that it may have been caused by my smoking.

AmyK,

I know you are really stressing right now. Try if you can not to upset your self beyond what will be. I know that sounds easier said, than done.

The Dr's. have tried their best to be upfront on what COULD be ? That does not mean you will end up with all. Remember what they say "it's not cancer until they say it's cancer" Maybe this could be looked at the same way.

It is hard for us to face what we will have or live with. I pray that you come to a place where you will find peace with what is coming up. Know that all of us here are here for you and will be thinking of you.

Please take care... Diane

Hi Amy

i must just say that it does seem a little bit off the norm to have radiation AND chemo before a BND.It is my limited understanding,that in the case of large tumours,they may need to be shrunk before surgery can take place,but it sounds like your treatment plan was intended to be more curative than that.Having surgery now,will be more difficult,and i wonder what the follow up will be to the surgery with such recent radiotherapy.
Compared to the rads ,Rob found his bilateral (radical one side and modified the other side) neck dissection a breeze and was only in hospital for three days.He had 58 staples from ear to ear,but healed beautifully,healing of radiated skin may be a little more difficult.

So get the nutrition going and get what strength you have left rallied for this next round.Why and how this disease choose its victims is not something i would dwell on too much concentrate your energy on getting well.

good luck

liz

My husband had chemo and radiation followed by neck dissection. His lymph nodes were still enlarged, but smaller. He did fine with the surgery and healing. Good luck. Linda