| | Joined: Apr 2008 Posts: 20 Member | OP  Member
Joined: Apr 2008 Posts: 20 | I had tonsil cancer September 2007 and last week I had my 4th CT scan and the results are an anomaly on the back of my tongue.
A request has been made for my specialist to put a scope down my throat and have a look.
Specialist did say sometimes if tongue in wrong position during scan can show an anomaly.
Got those scared and worried feeling again like I did in 07.
Thanks
Tony
Last edited by tonyva; 11-04-2009 01:41 AM.
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Tony,
When do you see your Specialist and is it an ENT? Let's hope that he gives you an all clear when you are scoped. It's no fun being in the 'recurrence club' so I hope that ultimately you're not going to become a member! Please let us know the outcome of your appointment and try not to worry too much in the interim. I know that this is easier said than done but many of these scans can show a false positive or an uncertain result which ultimately turns out to be something innocuous.
Good Luck!
Sue
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | [quote=Sue G]Hi Tony,
When do you see your Specialist and is it an ENT?
Good Luck!
Hi Sue
Thanks for reply and support. I will be seeing the specialist early next week, he is a Head and Neck Professor.
Funny thing is I feel and look great :-)
Have been reading through your signature, how are things going for you?
Regards
Tony
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | 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 | Best of luck with your visit with the H&N Prof. next weeky Tony.
Please keep us posted.
Gabriele
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: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Thanks Gabriele and I will let you know how I get on.
Regards
Tony
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Tony
We do NOT want you in our little club. Trust me, you do not want to join those of us who Brian so eloquently describes "[quote]This forum is to gather the individuals who have been dealt the hard hand of dealing with a recurrence of the disease, the unique emotional issues that accompany that, and the issues related to re treatment[/quote]
Seriously, I hope that in this case, you are like the popular song by Jack Johnson:[quote].It seems to me that maybe ...It pretty much always means no [/quote]
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | I certainly hope it's the latter :-)
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | 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 | Best of luck with this. I hope its not a recurrance. If it is...you have gotten thru it before, so now you are much more educated about OC. PET scans do show alot of false positives, think positive.
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 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Thanks Christine, I have the scope surgery Monday afternoon.
fingers crossed.
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | Joined: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Well I am happy to report that my scope investigation yesterday came back negative, my specialist checked tongue, cheek etc and he said there was no cancer and will see me in six months.
Oh what a relief.
Thank you all for your kind replies and prayers and keep safe and healthy.
Tony
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | 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 | Fantastic News !!! A little celebration is in order :-))
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: 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 |
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: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Thanks, my wife took me out for dinner :-)
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Wow, that's great.
Congratulations and may you have many more checkups like this one.
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: 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 | Tony, congrats on the wonderful news. Hope you dont go thru anymore scares and have successful checkups from here on out.
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 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Hi again
Had my 6 monthly follow up scan last week, got back a result of a Soft Tissue Lesion a little further down from my original tonsil cancer.
Have a pandescope May 24th, my specialist away until then.
Got to go through scary wait again.
Tony
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | Joined: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | I have my operation 8am in the morning, feeling nervous about it all but got to go through it to find out what I actually have.
Regards
Tony
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | 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 | Best wishes for a good result from the surgery Tony..post when you can.
Gabriele
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: 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 | Best of luck with your surgery. Hope you get your answers and recover quickly.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Phew! Wishing you continued good health.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Had my surgeory a few weeks ago and my specialist found a skin fold in my throat. He took 4 biopsys and he seems to think everything is ok.
He said the skin fold is because my neck is twisted slightly and could been from my neck dissection.
Biopsys came back negative which is great news.
Specialist said you have now had 3 false alarms with CT scans and he recommends me to have a PET scan and an MRI scan as a precaution.
So tommorow I have the PET and Friday the MRI.
Fingers crossed
Tony
Last edited by tonyva; 06-21-2010 07:21 PM.
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
| | | | | 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 | That is great news on the biopsys Tony.
Good luck with the PET and MRI..let us know.
Gabriele
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: Apr 2008 Posts: 20 Member | | OP Member
Joined: Apr 2008 Posts: 20 | Hi all
Sorry for late reply, PET and MRI was negative and have another PET in about a month.
A question I would like to ask, I get pains in the neck more frequent now. I asked my specialist and he said it could be a combination of nodules, neck dissection and radition. He recommended getting accupunture.
Anyone else have problem with theit neck?
Many thanks
Tony
Last edited by tonyva; 04-03-2011 10:26 PM.
Diagnosed Stage 3 SCC Sept 2007, Left tonsil, Neck Dissection, 20 nodes removed, 1 cancerous, 35 Rad treatments, no peg, lost 15 kilos, x-smoker 25 years ago, social drinker, CT scan April 08, 21st April telescopic biospy, monitoring dysplasia, scan and panendscopy every 6 months.
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