| | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2012 Posts: 50 | It's been a while since I've posted. I had well differentiated tumor on the right side of my tongue stage 2. Had part of my tongue removed and some lymph nodes on that side removed, all came back negative.
Had 6 weeks of radiation and am finally back on the horse. But tomorrow I go for a 3 month PET scan and then Thursday I go and see my oncologist. I'm trying to stay positive but I'm really nervous that something might come back.
I'm eating completely normal again with the exception of some foods I can't tolerate anymore. Life is good and I'm hoping it stays that way.
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I still remember how scared I was at Bill's first checkup post treatment. As we walked down the hallway to be seated in one of the treatment rooms, I had a moment of terror and the thought "Dead Man Walking." As I put this in words I think how bad that was to think that way but its how I felt at that time. I guess I felt like after the horrors of treatment that bad news would have been devastating.
So, I/we do understand your how you feel and wish you the best and congrats on your recovery so far.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | The wait is terrible! Good luck on the PET.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh how I remember waiting for results of my son's CT scan, 3 1/2 years after end of treatment because of a "spot" on his lung! And it took SO long for the results. When he called to see why it took so long, they said they had to compare it to some previous scans. He also was a stage 2 and doing just fine, now. You have to keep busy and when the negative thoughts attack, try to give them a time limit, like 10 or 15 seconds and switch to all the reasons you have for life being good, and all reasons you have for things turning out positive. When you go for the PET scan, tell whoever is there how you are feeling and maybe they can hurry up the results or at least make you more comfortable during the PET scan. You have every reason to look forward to some good results! Let us know what happens.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hoping for an all clear! Don't wait too long for the results most are available in 24 hrs. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2012 Posts: 50 | Just got out of the scan. Boy did they NOT prepare me.
I walked in with my mom and my coffee and the woman at the desk goes that's water, right? I was like "um no" and she said oh no you were suppose to not have any sugar and were suppose to be fasting. I was dumbfounded and asked her why no one told me any of this and she said they "tried" calling me but no one answered. I almost slapped the woman. Apparently voicemail is an unheard of means of relaying information.
So the tech checked my blood sugar and said I could still go through with the scan. I thought it was going to be inject the stuff then scan then out. She informs me I'll be there at least two hours and here's the kicker- I'm not allowed to be around children because I'll be radioactive. I'm a preschool teacher and was suppose to be in at work.
Well once I handled my job and got injected and sat and got in for the scan half way through all the computers shut down and we have to start all over...
I'm glad it's over. Results on Thursday.
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
| | | | | 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 | Anything that can go wrong.....
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: 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 |
Sorry you didnt have the best experience.
The OCF forum has info on how to prepare for PET scans. There is a whole system to getting the best results. Drink extra water, rest, avoid carbs and sugar all for at least 24 hours prior to the test. This helps to avoid the false positives. Now you know for any future PET scans so you will be ready.
Good luck!!!!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Good grief!!!
Let us know!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | [quote=Winteriscoming]Just got out of the scan. Boy did they NOT prepare me.
I walked in with my mom and my coffee and the woman at the desk goes that's water, right? I was like "um no" and she said oh no you were suppose to not have any sugar and were suppose to be fasting. I was dumbfounded and asked her why no one told me any of this and she said they "tried" calling me but no one answered. I almost slapped the woman. Apparently voicemail is an unheard of means of relaying information.
So the tech checked my blood sugar and said I could still go through with the scan. I thought it was going to be inject the stuff then scan then out. She informs me I'll be there at least two hours and here's the kicker- I'm not allowed to be around children because I'll be radioactive. I'm a preschool teacher and was suppose to be in at work.
Well once I handled my job and got injected and sat and got in for the scan half way through all the computers shut down and we have to start all over...
I'm glad it's over. Results on Thursday. [/quote]
When you made the appointment, you should have been provided (in writing) explicit instructions on preparing for this scan and if you did not receive that, then someone dropped the ball. I would ask what the normal procedure is, if nothing else, to prevent someone else from going thru what you did. Those instructions should include information on how long the scan will take and what to expect. These are expensive and involved procedures and should not be regarded lightly by any staff of any facility!
Last edited by debandbill; 11-06-2012 07:16 AM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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