| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hi, not sure if this is in the right forum, since it's not really an "issue" but I guess the post can be moved.
Anyway...I've had my first PET scan after TORS surgery 7/2013 and end of radiation 10/2013 and it showed metabolic activity at the base of tongue. The report says it can either be a lesion or post surgical changes. It's hard to be positive at the moment since i usually see all clears and NED from others after their first scans. I know no one has an answer, but anyone know what's next, or has anyone experienced the same report and it was not a reoccurrence? My ENT is out of town, and I will see him next week.
Thanks....
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Having watched lots of these things over the years here, and realizing that you are only 6 months out from radiation, it is more likely that this is an area that is still in the healing process and that is what is lighting up your PET, than it being a immediate recurrence. Those are rare, and that is even a misnomer, they are incomplete primary treatment usually. From all the posters here that have early PET's, the vast majority that have a high uptake, especially right in the primary site, it is just healing related inflammation. The PET is very non specific for cancer, only sugar uptake and I wouldn't give this a lot of thought right now.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Thank you Brian, for the quick response. I will take your advice too.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi... I am going to agree with Brian... PET's really do just indicate metabolic activity. Cancer is highly metabolic (sugar pigs) but inflammation, infection, and healing areas are as well.
Ideally, you need to be scoped by your ENT.
If you are super worried (I know - hard not to be) Maybe push to have the appointment moved up to his first day back...? assuming you already haven't.
hugs... hoping it really is nothing.
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Will have a scope on Thursday, and left a message for the dr to please look at the report on Monday. My surgeon suggested an MRI, so if my ENT also wants one, he can get started on the referral at the beginning of the week as opposed to the end. I do think about it, uhhh pretty much all the time... : ) but I do not have anxiety over it. Going with the OCF mantra, "it's not cancer, until they say its cancer."
Hugs back cheryld!!!!
xo
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | I'm no med pro for sure but I think all organics are "metabolic" and cancer is "hypermetabolic".
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 | Ive had a false positive. Scared the crap out of me. Turned out to be minor inflammation and nothing serious. I know its hard but try not to worry too much. False positives showing up on PETs are very common.
Stay busy to help keep your mind focused on other things. If you must dwell on it try to give it a time limit of many 5 minutes then "change the channel" and get up and go do something positive that will help you to think of other things.
Best wishes!!
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Ugh it is hyper metabolic. I didn't realize I left out that word.  tho I talked to my surgeon and he said i should not be overly concerned, that it could be from the immflamation. I hate the waiting room, sigh.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | On a positive note, it's nice to learn how to spell inflammation correctly, as opposed to the incorrect way I've been spelling it...imflammation. I love silver linings.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | My MRI and scope did not show anything. I will wait 4 months until my next PET scan. Only problem is I have a lot of pain in the BOT area, making it very difficult to swallow and get in sufficient water intake. Hopefully my ENT can help in some way.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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