Go to that ENT Mine
is the one that knew more than the Dr at a well know cancer center. I owe him my life . Him and the dr at the the well known CCC went at it over the phone more than 1 time. LOL I overheard one of them,. Not nice for sure. Welcome to our home and don't ever close the door. It's much easier for some of the oler ones to just walk in with undue preesure on a door,

Hi, I am new here as well, but I have been reading here for about a week or so now, and I can tell you, you will most definitely make friends and be surrounded by support. My mom went through the same thing 4 years ago. They removed the tumor and she didn't need and rads or chemo. I can fully relate to your panic, and wish you the best. I think that even if you have had things like this in you family before, no one can fully understand how YOU feel, but I think you will find comfort here. Good luck and from my experience, all you can do is take one day at a time, and try not to jump to and conclusions, just focus on the fact that it can be taken care and you will get better...take care.

Hi Bloop,

If you are looking for friends and support you have come to the right spot. This is a very scary time and we all understand where you are right now. Just take it one step at a time. Get a good support system in place and someone to go to your appointments with you. It always helps to another set of ears. Please keep us posted with how you are doing.

We all have different opinions on what doctor to see, we've all been treated differently. The experience I had with the ENT Surgeon I would have had unnecessary radiation (with a PEG) and who knows where I would be today. I agree with David and Bob, CCC.... I drive 3 hours to a CCC in Tampa, I'd drive double that to go to a CCC after the experience I had here with the ENT Surgeon. I was clueless about CCC I'm so glad a Radiation Oncologist helped me I owe him big time.

Right now your mind is all over the place, I know been there like everyone else here. Take notes and ask questions don't be afraid to ask this is your life. Take someone with you to your appointments. Four ears are better than 2 and you won't hear half of what the doctor's tell you. I know I asked my friend, what did he say it went right over my head I was in a daze. I went through this with my late husband 10 years ago BOT cancer Stage IV. We didn't know about CCC no one told us or we would have been there.

This is the place for you to be a lot of support Good Luck and God Bless.

Connie

Wow, so much has happened since June when a small tumor was found on the floor of my mouth and was cancerous. First of all, everyone told me to "stay off the computer" - lol. Well, I couldn't of course but I didn't realize I would get so many responses and would want to talk to you guys again. The cancer spread to my lymph nodes and I have now had a right side radical neck dissection by my ENT. I still haven't seen any cancer people. I have an appointment with both a radiation doctor and a chemo doctor on November 5th as I will need 7 weeks of radiation and chemo. I hear it is way worse than the surgery. Boy, I feel so confused. First I had a small tumor that was removed and I was supposedly cured. Now I have stage IV cancer and the rest of 2009 seems to be screwed. It's like a roller coaster. I don't want to be a wimp, but I'm really scared. I'm a widow. I have a daughter to help me but she is SOOOO busy with church and Narcotics Anonymous - she's always doing something.

I sure didn't find radiation worse than the surgery. It is very different for each person. Do not prejudge it. Perhaps you will sail right through it - many people drive themselves to each appointment and I know of some who have worked almost straight through.

Stage IV is just a number - like weight. That is one of the wonderful things about head and neck cancers - each patient has their own course which may bear some similarities to another persons path, but each person's body is so unique that no one can fully anticipate how good or bad it will be.

Try to stay positive, and don't assume the worst. Try to find something in each and every day that makes that day special and puts a smile on your face. I have often said that cancer steals too much time from us - do not give it any more than it absolutely has to have - certainly do not give it all of 2009!! Look for those special moments in each day that make life truly worth living.

Scared is very very normal and that is where we fit into your life. We are here for you. Will not not push aside your fears or not want to talk about them. Post often, lend support where you can - you are in the right place and Thank God for the computer!

Donna

That is very good advice from Donna. Her and others here have helped me over many hurdles. Just keep the positive attitude and take care of your angels, no matter who they are. Mine are what keep me going thru life. I owe them many good deeds and hope somehow hope to repay them. Who in the world told you to stay awauy from the computer ?? This computer has saved more than one of us from big mistakes. Take each day as it comes and improve on the next one to come. The worst thing to me is to try and think until you know for sure what is going on. Goos luck and keep posting your progress. jim

I had my right neck dissection October 2nd and I'm due to start chemo and radiation November 16th. But they say I have to have a port put in and a PEG before I start and I haven't been set up for that yet. Plus I have to have that mask that freaks me out made before I can start. I appreciate all your comments. I know radiation is different for everyone, but it sounds pretty terrible in general. I had no symptoms or pain until the doctors got ahold of me. It seems like they can't do enough to make me miserable - lol.

Bloop, you and I are on the same schedule it seems. I am due to start radiation and chemo the same days you are. And I to have to have all thos other procedures done. Let's make it a race and see whose Drs can actually get it all done in less than two weeks. I have not even seen the MO. I do not see him until next Tuesday. I haven;t seen the Dr. who is putting in the PEG either. I do not know if it is possible to get it all done.

Bloop,

If your cancer has already spread to the nodes, concurrent chemo/rad is the norm. Have they said what chemo(s). I will assume Cisplatin. If so get your hearing tested pre Tx as Cisplatin can cause permanent hearing loss. The chemo/rad combo can be tough especially from the 4th week into Tx lasting until the 3rd week post Tx. Count on it and maybe you will be one of the ones that skate through. Let's hope so.

Re the Peg and Port. I didn't have either and I wish I had had the Port but I still wouldn't opt for the Peg even though it would have made getting the proper calories and hydration easier.

You will most likely, Peg or not, loose many pounds. You will also loose your saliva and your taste, all of which will return for the most part in your 2 year recovery period. Therefore we encourage everyone about to start rad to EAT EAT EAT everything in sight until you just won't want to anymore.

Re the mask. It only took one heart pounding practice session for me to accept the mask but some get their docs to prescribe a sedative that they take right before being clamped down. Most of us were allowed to play our favorite music during the rad sessions and I had them turn mine up to ear popping levels so I could drown myself in music and go somewhere else in my past where it was nice.

Good luck and know that this site will here 24/7 so don't hesitate to use it about anything.