| | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP  "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | I had my pet scan results today. The doc said the area of surgery and rt is clear but 2 spots hAve lit up in the nodes in my neck. I have to now have a ultrasound and poss biopsy. He said I should not worry too much as if I had not had cancer it wouldn't be looked at but they like to be careful. Obviously I am worried but as it didn't show up before should they have checked my lymph nodes at the time of surgery? Has anyone else had this happen to them?
On the good side I had my obturator fixed and an app for a new one to be made:)
Love and stuff to you all
Jayne
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Jayne:
I'm sure others will join in soon with like experiences from PET scans, but I've read numerous entries on the Forum where "hot spots" have lit up on PET scans and turned out to be nothing. Hopefully, that is your case. Like I said before, you'll be hearing from others who have had this happen. Take care.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | 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 | PET scans are known for false positives. Its happened to me. I hope this is whats happening in your case too. An inflammation, infection or even scar tissue can make a PET light up. Your doctor is correct, IF it is a problem then it was caught early. Best wishes with further tests.
Last edited by ChristineB; 11-03-2011 08:43 AM.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Jayne,
We hit the sh%t jackpot with a false positive PET. Not only did the doctors waste the opportunity to do a biopsy of the 4 nodes that lit on the PET when J had his diagnositic tonsillectomy and random biopsies, but staging and treatment were based on it.
To J and me, having those nodes biopsied would have prevented so much of what he went through and is still going through. So, if you need to, go for the biopsy and try not to worry.
Good luck, you beautiful survivor!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | 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 | Agreed!!! Go for the biopsy, and as said, pet are notorious for false positives! Hugs! And good luck!
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: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Thanks for your thoughts everyone. Im trying to feel positive about it and have got a biopsy date for next week now. Its easy to say dont worry but you cant help but worry. I just have to wait and see and if it turns out its back then i will just have to fight it again! i know many on here have so i know its doable:)
You are right Christine it is an IF at the moment, so i will remain hopeful until i hear the results
jayne x
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | I had results yesterday and I'm all clear!! It was such a relief I feel like I can breath again !
Did not. Get my new obturator as i needed little op but I can wait!after Xmas I will look a little less like my face is
caving in! Hooray for that who needs pressies!
Hugs everyone
Jayne x
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | 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 | That is sooo fantastic. I know (beleive me I know) how scary this all is. Especially the wait. And sometimes even with an all clear - there's always the - what if.... Enjoy the holiday relax and soak up your blessings - you deserve them. 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: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | My Dad's RO also had said that PET is not a conclusive test, even if something lights up, they cannot take it as Cancer. It has to be always followed up with Biopsy and he also added that very rarely even Biospy goes wrong!
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Jayne - wonderful news on the clean scan. Whew! Hope you're able to enjoy the holidays with a bit less stress.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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