#93784 04-16-2009 03:31 PM | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | My name is Connie I was diagnosed with T1 Squamous Cell just under 2 centimeters on the left side of my tongue. Having surgery April 21st at Moffitt in Tampa, FL.
It's been a nightmare since January 14th. Ive seen 5 doctor's since then. I went to my Dentist about the problem twice he ignored it. Five days later I went to his backup dentist, opened my mouth the first words out of his mouth cancer.
I'm so glad I found this site I've been searching the internet and I finally found all of you. I'm thankful for your site it's very informative.
I'm scared of the unknown.
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Connie,
If you weren't scared, you wouldn't be normal.
As you can see from my signature, my diagnosis, location of my cancer and treatment were the same as what you going through. I'm here 4 years later to tell you that.
Please feel free to send me an email and if you would like to talk to me, I will send you my phone number.
I, and everyone else, am here for you.
Good luck on the 21st.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Connie--unfortunately, oral cancers are often missed. I know; I walked around with a two centimeter tumor in my tonsil for over two years while under the care of an ENT.
Totally normal to be scared, and you're about to find out that you are tougher than you think!
My advice is not to think too far ahead, don't worry about things before they need to be worried about. And, worry never changes the outcome, good or bad.
Good luck, you came to the right place.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Connie
Welcome to OCF. You will find lots of help here to guide you thru this. Please ask questions as they come up. We are here to give you advice and to lean on when you need it. Not knowing what to expect can be scary. You are not alone in this. Are you only having surgery? Have you gotten a second opinion? Any mention of chemo and radiation?
Try your best not to worry and let cancer steal yoru time away from you. It could be much better spent with friends and family. Best of luck with your surgery next week.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Thank you for the welcome.
Oh, Yes I got a second and third opinion. Thank the Lord for the Radiation Oncologist. The ENT Dr. said full-blown radiation, he sent me to the radiation oncologist he said, no way, you need surgery. He sent me to Moffitt in Tampa, FL yes indeed surgery not full-blown radiation.
My concern is my speech and swallowing Moffitt said I would have 80-85% after surgery and I wonder about swallowing. Another concern is this week my left jaw has started to ache like a toothache I will ask about that on the 21st when surgery is scheduled.
To me this all has been a nightmare. BUT I do have complete confidence in my Dr at Moffitt and the Radiation Oncologist here in Fort Myers. He's a Harvard Med Grad and only been here 2 years, young intelligent man and I am totally satisfied with him.
My husband passed away 9 years ago from throat cancer and it all started when he had a molar extracted just like me!!! Go Figure...
Yes, I'm beside myself I hope after this long wait since Jan 14th the cancer hasn't traveled to my jaw.
I told the doctor at Moffitt when I have the surgery and the tears come say night night Connie, Oh Yes, I'm scared....
I've been reading the forum what you all have been through God Bless you!!!!
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome to our corner of the world Connie. All of the people that have posted or will post know what you are going thru. I couldn't even get Eroom Drs to check my tongue and everything else thAT GAVE ME TROUBLE including teeth breaking off and teeth nd fillings dropping out. Finally like you someone listened and found it right away. I am far from being over it yet, but I am alive and laughing. Good luck on the 21st.
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
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome Connie and as Jim says you will find the best information and advice here.
How sad that your husband passed away from throat cancer.
You must have gone through an awful time then and now you have oral cancer yourself. That really sucks and I don not recall seeing that here before.
All the very best for the 21st
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hi Connie - There are lots of fellow Floridians here for you. "DebandBill" is a frequent poster and they live in Punta Gorda. You will hear from DavidCPA who was treated at Moffitt, as you will be. We live in Sarasota and my husband was treated at Shands in Gainesville and here. If you get clear margins and no sign of spread or mets, you may not even need radiation....all depends on the experts at Moffitt. My husband has had recurrences but he never had radiation because of clear margins, clean scans, no positive nodes, etc. (neck disection). His last check-ups have been good. Keep us informed and message me if you have any questions. Jane
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Hey Connie,
I'm in Florida too. All the way on the other side, but Florida none the less. Near Pensacola. I was misdiagnosed for almost 2 years. As was already said, most of us were.
Hang in there, you'll be fine.
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Connie,
Who did the surgery at Moffitt?
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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