Hi I just found this site. I hope there are people that can help me to know what I'm about to experience. My name is Ron A. I had a lump on my neck. Had a biopsy taken of it. Surgen did a scope on my throat and found polyps on my vocal cords and throat on 1/17/08. Had surgery on 1/18/08, they found my right tonsil had an ulcer and removed it. Pathologist report back on 1/24/08 of both the tonsil and lump. I have SCC? (Squamous Cell Carcinoma). Now I'm awaiting my first PET scan sometime in the next few days, before I have surgery on my neck. Everything was normal 2 weeks ago, what happen?

Hi Ron, and welcome. You found the right place for support. The wonderful people here have helped guide me and answer my questions while dealing with my Dad's cancer.

Ron,
You're in the right place. This site is very, very helpful, and loaded with people who care. I know you're frightened and upset, but you've plenty of support here. I only wish I had found it right away.

Ron -- Welcome to the site, though we are sorry you have to be here.

That is the way this disease works. Though it seems like everything was "normal", this disease was perking away, just waiting for the lump in your neck to get big enough to feel, which leads to them looking at the throat, etc. Pretty much the way it went for me, though mine was discovered via another unrelated surgery.

PET scan will help determine degree that the cancer has spread, so that they have a better idea of what kind of neck surgery to perform (called a neck dissection). That will determine how aggressive the surgery will need to be. The whole cancer team (assuming you are going to a CCC), will review and work on a treatment plan for you.

It is scary and overwhelming right now. Take it one piece at a time, and ask lots of questions, both here and at your doctor. We all have been there, done that, got the T-Shirt, with a wide variety of experiences, results, etc. So pretty much anything you encounter, somebody here will have already experienced it, to one degree or another.

Welcome again, with sympathies. Allow yourself the time to feel the fear, angst and other emotions, then get angry and prepare to kick the %^^%$ out of this disease.

It seems we have another buckeye on board, I hate to say welcome to the site, because none of us prefer to be here. One thing for sure is that there in no place better to talk about your fears and this disease. I hope you ask questons and know you will receive answers from victims all of the globe. I wish you the best Ron and will be looking for your posts.

Hi Ron:
Great assistance is here on this site. Everyone brings different experiences that you can draw from. Just remember, it's your body and your choices. Doctors you trust and that work well together (And with you) make a huge difference in the quality of treatment as well as your mental attitude while coping with everything thrown at you. No question should be too tough for your doctors, and they should invite you being inquisitive. Gather your questions and write them down, if you don't understand something clearly, slow the doctor down until you're comfortable with what they're explaining. It's your time! My first surgeon openly invited a 2nd opinion, infact he brought it up because he sensed hesitation on my part! His only request was whatever I decided, please do it quickly. You're dealing with a tricky and elusive disease that wastes no time, so that time is of the essence. The PET scan is a great start to formulating a game plan. You are young and can beat this!! Hang in there and we look forward be hearing of your successful journey!!

Best Regards,
Steve

Ron,

Where are you being seen?

Before you let someone do a neck dissection if I were you, I would get a 2nd opinion.

Are/were you a smoker?

I know the cancer word is scary to say the least but you need to learn as much as you can right now BEFORE you decide on the best treatment plan for you and there is plenty of information exactly on point to be read on this site. Most of us here had SCC and it is very treatable but there are many different ways doctors out there approach the way they think is the best way to treat us. I saw 5 different cancer docs and got 5 different treatment plans and was given from a 60% 5 year survival chance with surgery to a 90% chance without surgery. The 90% survival chance was also by a Comprehensive Cancer Center, (CCC) which is who I decided to let treat me. For a list see http://www.oralcancerfoundation.org/resources/cancer_centers.htm . Please visit the OFC Main Site Above and discover a wealth of useful information to arm yourself with. Knowledge is a very powerful tool to have in your corner when fighting for you life.

Ask us all the questions you may have, however trivial you may think they are. That's why this site is here.

Welcome to the site. Buckle Up. You have just started your fight and you will need the support of your loved ones and those here to see you through this turbulent ride. We've all been there - we've heard the word "cancer" attached to YOUR name. Such a frightening word but as you will see from this site there are many many of us who are living with the disease - continuing our treatments, and yes, enjoying life while we do so. Here there is Hope.

Keep posting about what you want to know about - even if you think you "should" know the answer. There is such a wide variety of experiences here that I know you will benefit from the group's sage advice.

In the meantime, one day at a time, one step at a time. Buckle Up!!

Donna

Hello Ron
I`ll bet you are scared .. have to be nuts not to be!
We also went the no surgery route ... my hubby just could not imagine his life without a tongue. As you can see we are nearly five years out he is doing wonderful and life is back to normal. Right now we are just about to put a steak on the grill!
Hang in there Ron... you can get through this.

Marica

Hello Ron, Sorry you are here but it is the place to be in your case. What happened is reality just bit you in the *&&. What you need to do now is get all the information you can about your dx and get mad. Just because you were told you have cancer does not mean it is a death sentence. Research and get tough with this and make the best decisions in your treatments and you will be fine. I think I would do as David suggested and get a second opinion before any surgery. Where are you being treated? Is it a CCC? Talk to your full team. Stay in touch.

Hi Ron...
Welcome. This site has been a blessing for me. Any questions I have had someone has answered or I have found the answer by searching the site. It has actually kept my sanity the last week or so. I too found a lump in my neck, ignored it for about 1 yr before I thought i should actually have it looked at.At 37 yrs old and a newlywed what could seriously be the problem!! (UGH!!) When I finally did go to the doctor the CAT SCAN showed actually 3 enlarged lymph nodes. I had 2 inconclusive biopsies done on the largest and a wonderful surgeon that insisted I take it out even though it showed no dangerous cells. 2 months after the biopsies (7/9/07) I had it removed from my neck. 10 days later the doc dropped a bomb on our world telling us it was cancerous and it definetely was not the primary. An MRI and a PET scan later cancer did not show anywhere in my body. My aggressive surgeon knew better and eventually found the primary source at the base of my tongue. However it was not the more common SCC it was mucoepidermoid carcinoma which happens to have very rare occurences in the tongue. 5 months after the 1st surgery I had my second which entailed a 3 week stay in the hospital entailing a neck dissection with 11 nodes removed, jaw split, and a sizable amount of cancer removed from the base of my tongue. Before we agreed to the second surgery my doc encouraged me to seek a second opinion which I did (plus a third). They all had the same answer that surgery plus radiation would be the best protocol to beat this. So that what we did on 12/11/07. Spent Christmas and New Years in the hospital. Now withihn the next 2 weeks I'm to start radiation which scares the hell out of me, but I know I AM STRONGER than this disease and I will beat it and move on with the life with my husband of 1 year. (thank god for him)! If I could share 1 piece of advice in my short experience with this disease it would be to lean on those you love for support and understanding. Take advantage of all the offers for help/assistance from family/friends or whoever. No one should have to battle this alone if they do not have to. Let the support in whether its from this forum, from friends/family or from the medical team you will have. It will help you through this. And ask away your questions or state your fears someone has been there before you and will help you through this. Stay strong and keep in touch..
Christne D

Thank you! Everyone! I feel relieved to find so many helpful people. I think this is good for me, to hear from all of you! I'm here with you to ride out this battle. Again, Thanks

Hi Ron,

I too wish to welcome you and say hello. You will find lots of information here to help you through your journey. Try and take one step at a time. This Journey is long but you will get through it.
You will learn the true meaning of "WAITING" because you will always be waiting for something.
So welcome Ron and good luck on your scans, and surgery to come.
Take care,
Diane

Hi Ron,

Wanted you to know I'm rooting for you and will be following your posts! Good luck with your scan on Friday.

I want to echo some things from DavidCPA's post. My husband's ENT wanted to do a neck dissection within days of diagnosis. At the CCC we went to, the surgeon, RO and MO consulted and determined that chemo and rad were going to be enough. I know every person is different, but I'm curious if the decision to do surgery is coming from a cancer center or a stand-alone ENT?

I'm concerned because someone is telling you that surgery is warranted and you don't have your PET scan done yet.

Hi Ron,
Just keep putting one foot in front of the other like your determined little man you will be OK.
Wishing you an easy time.
Malka

Ron,
My surgery was on the left lateral of my tongue, and originally my ENT had scheduled that surgery plus a ND on the same side, but when he got to the tonge mass the margins were so well defined that he consulted with the RO while I was still under. They decided to opt out on the ND, and just go with radiation. So... where do we go from here? I can only hope that the right decision was made; granted 1/3 of my tongue is gone, and I'm dealing with radiation recuperation, but I was blessed (?) in that I didn't have to have the ND. According to how things pan out in the future I will know whether or not (they) we did the right thing. My follow up PET on the 18th was clear, which was most excellent news, and everything is going as predicted... so, you see, for everyone it's different... you get to chart your own path and share as well. God bless you, and good luck... we are here.