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#68504 01-26-2008 06:13 PM
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Ron47 Offline OP
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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?


Age 47, Right tonsil removed 1/18/08, large mass in right side of neck. Both have been diagnosed SCC Stage IV, on 1/24/08. Right radical neck dissection and left tonsil removal 2/8/08
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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.


Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08

JUNE 30, 2008 Officially CANCER FREE!!!
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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.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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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.



Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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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


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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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


Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
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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. smile


Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 smile
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