| Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi all,
A few days ago, my wife went in to get her PET / CT scan done as a precaution as she was unable to do her PET prior to surgery due to her being 32 weeks pregnant at the time (she did have her CT scan & MRI pre-op).
She had only recently had surgery (11th of September) which involved a partial glossectomy (2/3 of oral tongue), Neck dissection Level I-V and tongue reconstruction using her leg flap.
Unfortunately, we got a call from the docs this morning saying that on the PET scan, they saw 'unusual activity' near the base of her tongue which was of particular concern and a bit of activity near where her lymph nodes were removed on the left side of the neck.
CT scans did not show anything definitive and I know there is a high false-positive rate on PET scans particular so close to post-op but am still very worried..
We were expected to start treatment on the 24th of October with 6.5 weeks of Radio / Chemo but they have now put this on hold until the doc's further examine Jenny.
Anyone have any similar experiences or able to shed some more light on this if possible? Am I safe to assume they will do a visual check as well as a Fine Needle Aspiration?
Thanks in advance..
Kind Regards Jay
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Jay,
I have never heard of a PET scan being done this close to a surgical procedure or for that matter any treatment. I would very much question any positive results showing on a PET after the amount of surgery that was performed.
I would definitely question your doctor about any changes he or she has made in treatment going forward based on these results.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi Kelly,
We had the PET scan to see any distant metastasis as Jenny was unable to do it prior to surgery due to her pregnancy.
I know that a PET scan so close to the surgery date is very inaccurate (I read somewhere almost 90% if it is conducted within 4 weeks of surgery + even more in the case it involves BOT), so I was surprised when I got the call this morning from the Radiotherapy specialist (not the doc) telling us that we needed to see the ENT doctor asap.
Perhaps he didn't know much about my wife's diagnosis & treatment till date and he jumped the gun when he saw 'active' hot spots on the PET scan?
I know it is near impossible to make conclusions with PET scans in this situation but I am still one nervous wreck at the moment..
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | 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 | Try not to panic. You are correct with your info about having a PET scan done so close to the surgery date it will be inaccurate. A major surgery will have inflammation for weeks and that will light up on a PET.
Please keep us posted as to the progress. 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: Dec 2011 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | I was diagnosed a year ago (three clear CT scans since ) but I have never had a PET scan - or at least not since I finished treatment. Is this normal? I go to MD Anderson and they said the PET scan is not needed, but it seems everyone on this site gets PET scans. I was just curious if I should get a second opinion!
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Emily,
My brother was treated at MD Anderson at about the same time you were. He was told the same thing about PET scans. They only do CT's with him. His wife is a bit concerned about that and is thinking of pushing for a PET.
I think this is also being driven because of my situation. I had requested a PET on my one year anniversary and was denied. They felt I was doing just fine. What they didn't know was that I had a tumor deep in my neck that they could not feel. A CT would have picked it up eventually but my doc's were sure they had nailed the cancer. That was at my local hospital in Grand Rapids, Mi. which was associated with the CCC at U of M.
I moved over to U of M to treat my recurrence.
Keep in mind that PET scan are very expensive ($6,000) so hospitals are reluctant to order one unless some physical symptom warrants one. Mostly they do CT's
Last edited by ChristineB; 10-10-2012 12:57 PM.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | A PET scan also means additional radiation - another reason besides the cost to be conservative with their use. My husband's ENT said that the subject of follow-up scans was a hot topic at all the conferences he attended this year. Assuming a continued lack of signs and symptoms, my husband will have a chest xray at his 2 year followup, in addition to the physical and endoscopic exam.
Last edited by Maria; 10-10-2012 03:40 PM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi all,
Just a quick update from our meeting with Dr. Nick, our ENT doctor.
He had a close look at the BOT and saw nothing to suggest that it was a re occurrence, and it will be more than likely that it will be false-positive.
However, he wanted to go with the senior doctors & the radiotherapy oncologist (who is different from the one who broke the news to us) through the scans once more, and have told us to come back next Wednesday morning where they do patient clinics and the entire crew of doctors are there (usually upwards to 25 doctors.. it is an AMAZING system they have here).
Apart from that, he said the wife was recovering remarkably well and that she will still be going through radiotherapy & chemotherapy as per schedule (24th of October).
Not entirely out of the woods yet and its another week of waiting to get the all clear but the news could have been much much worse so I am grateful for what I heard.
Thanks to everyone who provided us their words of advice and I will make sure to keep you all posted when we get the final results next Wednesday
Kind Regards,
Jay & Jen
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Glad to hear that Jay. Good luck to you on the follow up.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi Tina,
Thanks for the well wishes. How are you going at your end?
Good luck with your surgery tomorrow and I am sure all will go as plan.
We will keep you in our prayers, and look forward to hearing the good news from your end soon!
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
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