| | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | I will be going for my after treatment PET scan 01/21/2013, prayers welcomed! All my ENT monthly checkups have been ok.
Thanks
Mickey
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Good luck From Hockey Dad. Mine is 30 days from today.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | 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 |
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: 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 | Best of luck to both of you. Prayers too.
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: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 |
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Nov 2012 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2012 Posts: 30 | Wish you all the best. I have my PET in March
Mike, 55
7/1/12 R Cervicl mass size of lg grape
9/12/12 diagnsd SCC lymphoid tissue level II BOT HPV+ blind primary
10/22/12 7wks rads, 2 cispltn
11/16/12 PEG in
12/18/12 tx end
1/14/13 PEG out
non-smkr, no caregiver
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Completed PET scan. Results, they said they saw some light evidence around the original site. They said they are concerned but not positive it is anything. They think it may still be activity at the previous site, had surgery and of course radiation/chemo. They said it barely shows up and want to do another CAT scan in 6 to 8 weeks.
I see my ENT on 02/22, and he will have a copy of the scan. I will ask him if this is 'common'?
Still worried a bit.
Mickey
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Does anyone here see this a common thing?
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | 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 | If you go to the place of testing, they can give you a copy of the PET report, if you care to know sooner. Hard to say what they are concerned about, but light evidence may be slight uptake in the PET, increase or no shrinkage at tumor sight? Anyway, no scan can prove cancer 100 percent, and after surgery, chemoradiation, it is difficult to differentiate scar tissue from a malignancy, and may show false positives, that's why they want to do another CT to see if there is any change from now, and the next scan, but dates seem a little far to see the dr. Maybe they can do an MRI now, but each are good in certain aspects. Best of 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Mickey
YES, I see showing "light evidence" (presumably higher SUV)in a PETscan 4 months after treatment for BOT as VERY COMMON. Remember all a PETscan does is measure sugar uptake, not cancer. Since the normal cells in your mouth, especially near the base of tongue suck up sugar big time when trying to recover from TX, on a PETscan, it looks exactly the same. For that reason, my CCC will only do post TX Petscans at least six months after TX. At the 3 month mark, they do an MRI instead.
While you can get a copy of your Petscan, it will just scare you unnecessarily in my opinion but if you remain calm about it, then you could underline the parts you want to ask your ENT about.
The scan schedule they put you on seems normal to me.
Don't get me wrong, PETscans are great before TX since the cells haven't been damaged by TX, so they can highlight the abnormal sugar uptake by the cancer. PETscans really help the RO plot out the radiation field. But once you've had TX, they are not reliable for at least six months.
Trust me, I know just how worrisome these scans are. Even after 13 scans over these 5 years, I worry worry worry about each one. I just try not to let it get out of control.
Oh, and PETscans are also wonderful in spotting lymph node cancer, and have been a major factor in eliminating unnecessary neck dissections. But it strikes me as strange how many doctors just don't get it about early PETscans for base of tongue cancer.
Charm
Last edited by Charm2017; 01-21-2013 05:56 PM. Reason: typos
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
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