#95401 05-13-2009 07:39 PM | Joined: Sep 2008 Posts: 9 Member | OP  Member
Joined: Sep 2008 Posts: 9 | Had my second set of post treatment PET scans yesterday. Neck and chest are fine, but it showed an uptick in cell activity in my right (only remaining) tonsil. The report says the SUV measured at 6.9, up from a 4.2 6 months ago.
Radiologist writes that it is likely an inflammation, but needs a checking by the ENT. I will see the ENT Monday.
Any others with similar experience?
Thanks.
Dx 5/08
Stage 3 SCC
No primary ever found
Completed 35 IMRT tx 8/13/08.
Taxatol, cisplatin and erbitux weekly for 8 weeks.
No surgery
PEG
PET/CT Clear 11/08
| | | | | Joined: Jul 2008 Posts: 101 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2008 Posts: 101 | Hi Jimbo,
I have heard many times that there are a lot of false positives-I don't recall but it's some absurdly high figure like 40 percent false positives- with PET scans. My choice would be to just roll with the process and believe what the doc says. Sorry I can't offer more input.
Last edited by marma; 05-13-2009 08:08 PM.
FIL completed treatment 10/08. CG to father in Law in india who had SCC oral tongue T2N2M0. FIL underwent surgery, neck dissection, IMRT, and erbitux without losing weight or getting nauseated. Completed October 2008. SO far so good.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Jimbo,
Did the RT burn off your left tonsil?
Do you know why your tonsils were not removed before RT?
For an unknown primary, a (very wide) tonsillectomy is normally done before RT (NCCN practice guidelines does list exceptions if the involved lymph nodes are at very low levels - but I was told this is very rare).
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | My experience with diagnostic PET scans were two false positives with high SUV values (5.9) showing "concerns" on the right side of my mouth and tongue. Both PET scans completely missed the tumor growing back on the left side of the base of my tongue, which my ENT found by palpitation one month after the PET scan.
I have had 4 PET scans, the other two were to provide images for the radiologist to program the IMRT and now the CyberKnife field of radiation. I will stick with MRIs from now on,
PET scans just measure sugar uptake - which can be caused by inflammation or even exertion. Hope yours is just a false positive also,
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: Sep 2008 Posts: 9 Member | | OP Member
Joined: Sep 2008 Posts: 9 | Don,
My ENT removed my left tonsil during his gathering of biopsy specimans prior to any RT. He said cancer often hides in the tonsil. He didn't remove the right one as my lymph node growth was on the left and he thought the cancer must have started on the left side as well.
You sound like you have some background with this. Is 6.9 SUV high for a single remaining tonsil?
Dx 5/08
Stage 3 SCC
No primary ever found
Completed 35 IMRT tx 8/13/08.
Taxatol, cisplatin and erbitux weekly for 8 weeks.
No surgery
PEG
PET/CT Clear 11/08
| | | | | 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 | I had a false positive PET scan. Its fairly common for that to happen. Try not to get upset, just get it checked 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 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | With all the false postivie PET scans, I often wonder why they are used so commonly.
I have never had one for just that reason.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | If you don't use a PET scan what do you use? I had a CT scan and nothing showed up on it, but fluid in my sinuses. Not exactly why I was having the CT scan.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | No diagnositic tool is perfect. Each has it's strengths and weaknesses. It doesn't mean the one will or won't diagnose your cancer. It's important to know all the pros and cons, so that you can ask questions. And know when to ask for additional tests if something does feel right.
Sandyst
Last edited by SandySt.; 05-16-2009 11:06 PM.
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Here in the uk they seem to use MRI more than anything else.PET scans are very rarely used and over the two years i have been on this forum i have seen very little to convince me that they are an advantageous diagnostic tool.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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