| | Joined: Sep 2013 Posts: 6 Member | OP  Member
Joined: Sep 2013 Posts: 6 | Hi Everyone, I am new to this website and wanted to introduce myself. I am 24 years old and this past February I noticed a spot on the back right side of my tongue, which had appeared overnight. I waited 2 weeks and it did not heal so I went to see my dentist. He gave me antibiotics and laughed when I asked if it could be cancer. Needless to say, I didn't return to the dentist. Instead I found an ENT and, after being subjected to all different types of rinses and medications I turned out to be allergic to, I demanded a biopsy. He too told me not to worry and that it was most likely nothing. At the end of March, I went to get my results alone, hoping my gut feeling was wrong and that it was nothing. That's when the shocked ENT told me it was cancer. I was completely terrified. In the weeks that followed my parents and I met with different doctors and I had my very first PET scan, which was clear with the exception of the spot on my tongue. I had surgery at the end of April to remove the tumor as well as a bunch of lymph nodes on the right side of my neck. The margins were clear and all of the lymph nodes tested negative for cancer! I did not have to have any follow up chemo/radiation. Now here I am 4 months later and I just had my first PET scan following surgery. Everything was clear EXCEPT I have a small light up near the surgical clips in my tongue. My doctor said this is common and it happens a lot. No mass can be seen and it is most likely irritation from surgery. However in order to be 1000% and just to give us all peace of mind (me mostly) he is going to do a biopsy. I am freaking out. I know I got off easy since this was found very early and I didn't have to go through not even a quarter that most do, but I can't shake the constant fear of recurrence. Anyone have any tips? My doctor seems confident that I will be here until I am old and gray so I really need to stop obsessing. This is difficult since my OCD is the only reason the cancer was found in the first place. I am not about to let fear control my life! I could say I'm 24 why me...but I'm not one for pity. Why me, why you, why children, why anyone? And so is life! I look forward to getting to hearing from you  -Katie
Cancer found on back right side of my tongue in March 2013. Non-smoker and very light drinker. Tumor removed, reconstruction & partial neck dissection in April 2013. Stage 1. No chemo & no radiation.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Katie, Welcome!
Your last three lines show you have the right attitude! You will get through this, just keep an eye on that OCD. It's your friend, when you need attention to detail, but don't let it abuse that friendship by trying to take over your life.
I know you realize what I just said, my intent is not to preach, but to give you positive reinforcement. We can all use that, now and then, and you've just had the scare of your life.
So let the knowledge that you did the right thing, and it paid off for you. You just demonstrated good judgement and were rewarded for it. You've got all the tools you need to keep your sanity and OCD in control, just keep a firm grip on that leash in your "hand" and keep on keepin' on.
You go, girl!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | 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 | Welcome to OCF! You have found a great place for info and support.
PET scans frequently have false positives. It can happen when there is any swelling or even with infections. When something lights up it doesnt always mean it is a recurrence. Get yourself checked out to be certain whats going on and if it is anythign serious.
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: 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 | Welcome and do ask all the questions you want.
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.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome Katie. It was good you were diligent to get properly diagnosed. It takes an average of 9 months in some cases. As far as the surgical clip, is correct, and showed on mine too, but it was cancer. When cancer returns it's often to the surgical site, but not saying it is, and this should be discussed with the doctor what the course of action will be to identify or rule out. Was it base of tongue, BOT?
Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Sep 2013 Posts: 6 Member | | OP Member
Joined: Sep 2013 Posts: 6 | Hi Everyone,
Thank you for your responses! I found this site months ago and finally joined (happy I did)!
The tumor was on the back right side of my tongue not the base. I am scheduled for a biopsy in 2 weeks. My doctor does not seem very concerned but wants to make sure the surgical clips are not masking anything.
He said that in time, my PET scans will not light up in that area and that it is very common for the first scan. I am lucky that my doctor is diligent because I would hate to have him be 98% sure that it's not cancer and then 4 months from now have a bigger issue to deal with.
I am just trying to focus on the fact that the rest of my scan was clear so even if it turns out to be (god forbid) a recurrence, it doesn't look like it's spread at all.
Here's to finding the bright side during the waiting game.
-Katie
Last edited by kbriganti; 09-13-2013 06:54 AM.
Cancer found on back right side of my tongue in March 2013. Non-smoker and very light drinker. Tumor removed, reconstruction & partial neck dissection in April 2013. Stage 1. No chemo & no radiation.
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