I am a new member, just had biopsy on 8/24. At this point all I know is I have T2, I go in this week to find out the full results. I am looking to the forum to help me understand and learn from others.

Tell us more, Bill....like where your biopsy was taken, and what your symptoms are...and how you discovered your problem.

You will find someone here with exactly the same experience, and you will receive understanding from all of us.

XO--

Thanks for your reply....Biopsy was taken at Baptist Hospital in Winston-Salem, NC. Started with a lump on my neck a couple of months ago....no discomfort. Went to see my family doctor, 8/20 had ultra sound, 8/23 CT Scan and 8/24 biopsy. Trying to get up to speed on oral cancer, this site, etc.

Bill,

As August said, you can always find someone here who can relate to your current problems. Believe me, having just slugged through the diagnosis/second opinion/ENT/Medical Oncologist/Radiation Oncologist/dentist/surgeon, etc, I understand what you are going thru and how overwhelmed and in shock you are.

Just keep reading here as much as you can. You will alternately be informed and then shocked at all the "crap" this diagnosis brings but you will find comfort in numbers.... those of us who have walked or are walking thru this storm and can be of help.

Good luck to you from former North Carolina folk.
My Bill was born on the coast (Beaufort/Morehead City area) and graduated from NC State. Family farm is still there and we visit as often as possible..

Regards, Deb

Bill: So glad you're here! As far as I can tell, you and I are the only ones here from NC - we are in Troy (Montgomery County), just down 220 from you! One of Buzz' daughters lived in K'ville until recently, and is now in High Point.

My husband, Buzz, recently spent a couple of weeks at Baptist..his doctor is Chris Sullivan, and we were SO pleased with his care.

Buzz is getting a PEG tube at Pinehurst tomorrow morning.

Feel free to e-mail us, or I'd be glad to give you a phone number if you prefer to talk instead of type. (my cell phone number is area code 336, so it wouldn't be long distance for you!

Looking forward to hearing more about your situation. OCF is a GREAT place to start!

Lois & Buzz

Bill,

Was the lump you described on the side, right or left, somewhat below one ear or the other?

Bill D.

Hi, Bill, start taking good notes at your next appointments and keep us updated on what is going on. You may find that you will get more info here than you are prepared for !There is always someone wiling to share and answer questions. Amy in the Oz

Thanks for all the good advice. That is a good idea on good note taking....seems like I should remmeber that from school !

Loris and Buzz - I am glad to hear you liked Chris Sullivan, that is who I am seeing on Thursday. Which seems like forever

Bill D - My lump is on the left side, about 4-5 " below my ear, almost even with my chin line.

Deb: Love the Beaufort area. We go to down to our old fishing shack down on the Pamlico River whenever we can. It is on the south side of the river across from Bath....in the middle of no where.

Although there is a lot of information that is scary and confusing, I already feel better knowing this foundation exists.

Bill V

Bill, since I am an "old" school teacher- the taking notes assignment come natural- but it will help you alot to have written comments about your Doctor appts.to refer back to. As to "scary and confusing" - welcome to the jargon and world of cancer teatment. You will learn how to Zone in on what you need to know [if you take good notes ], the trick is to not try to read too far ahead- concentrate on what the next few months will bring and understand the treatment proposed so you can ask pertinant questions. Amy in the Ozarks [living in the middle of nowhere and loving it]

Bill: Chris Sullivan is the GREATEST! Please tell him that we met on OCF forum...I have asked that he check out the website for himself. And you MUST tell Kay (Dr. S's assistant) that we've "met"...

I believe you'll be MOST satisfied with Dr. S, Dr. Brown, Dr. Chapman and all the staff at WFUBMC. I feel better just knowing that you are being treated by these skilled surgeons!

Keep posting and asking questions...you'll find all the information here that you need!

Lois & Buzz in Troy, NC

Good luck with your appointment Bill let us know your full Dx as soon as you can

I have my first real meeting with Drs. on Thursday (8/30) to review treatment etc....Do most people get 2nd/3rd opinions ?

Any suggestions where to go ? I can go almost anywhere but would perfer South and east coast.

Thank all of your for your guidenance and sharing your experiences.

Bill Van Horn

I went to Ohio State James Cancer center for a 2nd opiinion after going to WVU hospital in Morgantown WVa. It was well worth getting the 2nd opinion at James Cancer Center. WVU wanted to take at least half my tongue , insert a feeding tube into my stomache , put a trach in me , among other things, and only gave me a 50- 50 chance of making it. Dr Ozer at James Cancer Center said he didn't think it was that bad , so natuarally I let him operate. He did take a large part of my tongue and part of the floor of my mouth and 3 lymph nodes out of my neck. I went to the Center yesterday for a cat scan and a pet scan. I see the Dr the 4th of Sept for the results. I am back to eating and feel good. I have no trach or feeding tube and am so glad I got the 2nd opinion. I haven't gotten the results from the lymph nodes but will the 4th. I say go for the 2nd opinion. The people on here convinced me to get the 2nd opinion and I owe them a lot. Here's wishing you well and have you in my prayers.

Would recommend a second opinion, even if you stay with your local docs.

Each doctor brings up things that haven't been discussed previously...just gives you more information to make a decision. In our case, our ENT was a poor communicator...we got a better idea of the scope of things at our second opinion at a Comprehensive Cancer Center (H. Lee Moffitt in Tampa, FL.) They were familiar with our docs (MO and RO) and gave us assurance that we could be treated locally successfully.

I know you are on overwhelm, and the thought of another set of doctors in just too much, but put your head down, look for a Comprehensive Cancer Center, Head and Neck Clinic, and call for a quick appt. Our insurance allows for a second opinion. We were able to be seen within just couple of days....don't let it drag on.

My thoughts are with you during this most stressfull time. Do you have someone that can help you...go with you...be a second set of ears?? You need that right now...lots coming at you.

Good luck, Deb

Hi Bill....glad your here.. i would say the best bet is the 2nd opinion.. beleive me i know it made a difference in our lives by going.. i say learn all you can learn and go with what you feel is best for you but i do recomend that 2nd opinion so you have something to go on in compairison...
oh and Bill do you by any chance know any Van Horns in Ohio...i was married to a Van Horn and all 3 of my children are Van Horns..

Bill, I forgot to mention my great grandmother was a Van Horn. Her family dates way back in history. Possibilty?

Bill: As you are likely aware by now, your other options for recognized cancer centers in the area are Duke and Chapel Hill.

Good luck to you! Let us know of your progress... Lois & Buzz

Bill...
Sorry to hear about your recent diagnosis, you will be in my thoughts and prayers.
It's a big curvy journey but the above advice is all very good. Take notes when talking to your doctors. Prepare questions before appointments. Ask for clarification when you are not sure and don't understand.
As for second opinions...get all the opinions you need and go with the one that makes you the most comfortable. Unfortunatly there are no golden bullets in cancer therapy....but your gut and heart felt feelings count, listen to them.
Remember, the only stupid question is the one you don't ask.

I'm pullin for you.
E-mail me anytime.

Mike

Hello all,
My name is Judy and I am CG for my husband Jack. Jack had an enlarged LN on the right side of his neck after a sore throat back in March. We didn't do anything initially assuming that the node would subside on it's own (I am a nurse, which explains away the nonchalant attitude!!!!!!!!!). When it didn't subside, we began with our family doc in June and he referred us to ENT who gave us a 90/10% chance that the node enlargement was related to cancer. Indirect laryngoscopy revealed a 3-4 cm mass at or near the base of his tongue/right tonsil. My husband is somewhat unconventional and his initial reaction was to run! He took a week long trip up to Vermont, our favorite place on earth and reflected on his diagnosis. He talked to the folks at Dartmouth and they told him that he needed to get home and get started on his treatment.
Jack, being unconventional, decided that he needed to go straight to the horses mouth, the person who would be staging and directing his treatment. So after some delay, we saw Dr. Roger Anderson at Rex Cancer Center in Raleigh NC. Our diagnosis: SCC at the base of his tongue, Stage III/IVA, T1, N2 unilateral, M0. This dx was made without direct laryngoscopy so we are back tracking a little and having the scope tomorrow. Should the result of the scope be the same as the dx above, Dr. Anderson has given us a choice of Fractionated IMRT with 38 treatments and the last 2 wks will be twice daily vs. 30 IMRT/Cisplatin x 3 doses. Dr. Anderson says that he expects the tumor as well as the nodes to shrink/disappear during the RT but if not then surgery to remove. After reading ALOT about this, I am somewhat concerned that some sites are recommending surgery first followed by RT. Dr. Andersons' response to that is that the RT will not have to penetrate scarring etc making it more likely to shrink/destroy the tumor. I do hope he is right. We both like him and trust him but we will wait until the result of the scope to finalize the treatment plan.
Thank you for allowing us to participate on the OCF site and we will keep you posted on our treatment course.
Judy and Jack

Barb T/Jim: I have cousin but I think he is NJ. The Van Horn tree is not very large. The relatives I do know are in the NJ area.

All - Thanks for the prayers and ideas. I am definatly getting a 2nd opinion and maybe a third. I am blessed that my wife does not work and can keep me straight. I have the ability to be out of work and do what I need to do to beat this thing-almost ready for tomorrow.

Bill V

Hey Bill;

Great attitude! As for "work", there may be times in the not too distant future when you or your wife might wish you had to go to the office instead of staying home. But one of your greatest allies is a powerful mindset to battle this horrific disease on a more balanced playing field.

Good luck with all the opinions; may they all point towards a cure for you and a return to your normal life as soon as humanly possible.

I found all the cancer doctors and staff to be some of the finest and most caring people on the planet. The depth of their dedication and sincerity in alleviating my fears were humbling, not to mention the fact that they saved my life and admitted me membership to the 10% Club!

I used to think the only ones like them were at the Fraser Valley Cancer Centre here in Surrey, BC, but since joining this website and reading the successes of the other members, it looks like my team wasn't the only group to escape into the public domain. Seems quality treatment and successful results are quite common amongst the oncology community, so regardless of who you ultimately choose, you should have little to be concerned about other than focusing your energy on making a complete recovery.

Kick cancer's butt on behalf of all of us!

Kindest regards,
JT2

If you can indeed go "almost anywhere but would prefer South and east coast," you'll hit the top three cancer centers, according to the latest US News rankings: MD Anderson in Houston, Memorial Sloan-Kettering in NYC and Johns Hopkins in Baltimore (also ranked #1 in ENT). Many people here have either been treated at one of these facilities or gotten second/third opinions there.

All the best,
Leslie

Bill - you asked about people getting 2nd and 3rd opinions - well I get a biopsy next week - if it's positive and I'm pretty sure it will be - this will be my third time around with mouth CA. Most recent was Sept 06. I see an excellent head and neck physician - who you might consider for another opinion. Dr. Scott Meredith - currently with Wake Med Faculty Physicians in Raleigh, NC.

Bill, when I read your post all of the past months came flooding back. My husband had the same symptoms. But... here we are almost 9 months past, and he is ready to go back to work and is gaining strenght every day. This is the right place to be. The people are wonderful and many have been where you are going. YOu can read our saga on "fianlly writing" being informed is the best you can do for yourself. Also for your wife- as a caretaker its tough. I needed this formum more than my husband did. Keep us posted. you are in our prayers. LJ

ladyjoe - I love to hear great news ...congradulations. I am also 53 and looks like I am headed down the same path. Your right this is a great place and I am a bit humbled to be touched by so many fine people.

Got back my pathology report today so I now have something to put in my signature. One of those days that kinda sucks. Oh well at least we have a plan (sorta of ). Have my PET scheduled for 5th and meetings are set for the following week for Rad and Chemo. Plan is to do both at the same time over 6-7 weeks. Will know details when I meet with the Oncologists.

Have schedule second opinion at Duke for the 6th. Things are moving fast which is good but makes my head hurt.

Lois - your were right Sullivan is a good man. My kinda of guy - direct, honest yet campassionate.

Thank you all for your help. I am going Jet Sking, fishing...will tackle next week ...next week!

Bill v

Dr. David Brizel is the HNC guru at DUMC, Bill. Make certain that you ask for him in your search for 2nd opinion. My doctor in Raleigh was previously associated with Dr. Brizel and he speaks very highly of him. We spoke to him by phone but ultimately decided that being a little closer to home to accomodate the 2x daily radiation was what we would do. Have a fun filled weekend!