| Joined: Jan 2012 Posts: 17 Member | OP Member Joined: Jan 2012 Posts: 17 | Hi, I had my PET scan done Friday three months post treatment. My RO called and said it lite up at the right tonsil fossa but he didn't think that was anything. I have an appointment with him tomorrow to discuss.
I read my PET today and it said that I had a probable recurrance tumor on the base of my tongue at the hyoglessus muscle - SUV > 6. The CT did not show any density in that area but did show striking enhancement of the submandibular glands (which are close by).
Have others had a PET that read this way and turned out to be nothing? I was very surprised when I read my report - the report also said that it was a corrected report.
Thanks, Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | 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 | Hi Angie! I have had a false positive PET scan. It is very common to get a false positive result on your first PET after finishing treatments. Irritations, swelling, infections all will make it light up. Best to talk with your physician tomorrow to see if they will be doing further testing. I would ask about why it is a corrected report. Also ask about your pre-treatment scans compared to this one.
I hope you do not have a recurrence. But, if it is you have been thru the worst already and this time around you are more knowledgeable. If nothing else, you know the terminology and what to expect with appointments.
Best wishes, please keep us posted. 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angie
PETscans have a lousy track record with me. Two falsely indicated that the cancer had come back on my mouth's right side (no cancer on either side as it turned out) and another one missed it when the cancer did finally come back on the left side of the base of my tongue. Only MRIs have been accurate for me. The SUV levels of normal recovering tissues in the oral cavity mimic those of cancer so PETscans hav a much higher false positive error rate for oral cancer than other types of cancer.
They often "correct' the reports so that isn't necessarily signficant. It's good you can meet with the RO to talk directly about what he sees. But I'd follow up with an ENT surgeon.
Worst case scenario: a recurrence is survivable as Christine and I have demonstrated. But we do not need or want any more new members in our comeback club Charm 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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Angie, I too have had a false positive PET Scan. Just see what your RO has to say about it. Good Luck!
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: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Angie, I just got back from my regular check-up, more than a year after my surgery, and my CT showed a "intensely enhancing submandibular gland, probably related to radiation therapy". My doc thought so too. A quick google search showed that enhancement of salivary glands is related to post radiation. My ENT and staff are very careful, but did not make a big deal about any of it, so I feel sure that this is what it is. I got an all clear from them. So yours could easily be the same. They don't do PET scans routinely. Best to you, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | Joined: Jan 2012 Posts: 17 Member | OP Member Joined: Jan 2012 Posts: 17 | Thanks Christine, I was a little freaked out. Initially, after my surgical lymph node biopsy (couldn't punture the lymph with needle biopsy), the surgeon told my famly it was just a reactive node. Then I got the report metastatic cancer - shocked.
So when I talked with my RO on Friday, he said everything looked fine just something in the right tonsil fossa we need to watch. Then today I got the report that didn't mention the tonsil fossa but said likely recurrance base of tongue - again shocked.
My ENT called me tonight and reassured me. His reassurance along with the response from the blog made me calmer. Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | Joined: Jan 2012 Posts: 17 Member | OP Member Joined: Jan 2012 Posts: 17 | Thanks All, I am calmer and will see what my RO says tomorrow. My ENT called and was reassuring. He felt that it was a red herring. Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | 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 | Hoping very much it a pet with attitude - good luck! And try not to worry too much!
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: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | I'm sorry for your scare, Angie. I'm glad to hear that you feel better with reassurance from your docs. Good luck and keep us posted! xo, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jan 2012 Posts: 17 Member | OP Member Joined: Jan 2012 Posts: 17 | Saw RO today. It was a great visit. He pulled up my CT, PET, previous PET & reviewed it all with me. He did a very extensive exam. After having his hands down my throat feeling around and having me do all kind of tongue movements, he looked with the scope.
He explained that on this PET he was looking for any more lymph node involvement. While we needed to take the area that lite up seriously, he thought it was okay (it was not base of tongue - the radiologist put base of tongue in one area and hyogusses muscle in another). The area also got 50 gy of radiation incidentally.
I will have another scan done on March 8th. I'm feeling pretty good now after the surprise report. I would have felt great if the scan had been clean.
Thanks, Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
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