| | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | andys PET is scheduled for 830 today. its already nerve-racking and i know the wait for the results is going to be excrutiating!!! he is doing very good so i just know the results are going to be good too....so why am i such a mess??? 
Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Teresa,
Fear of the unknown--very real and scary! I remember waiting for Clark's results the first time. It was very difficult. Take control and use your time to fill up your next 2 to 3 weeks with things that will be fun to do with Andy and your children. Don't let your fear paralyze you into doing nothing but worrying. Hang in there. You are a strong woman!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Teresa. Good luck today. Just don't be surprised if the scan isn't "normal". John finished treatments last April 15th and he just had his first PET scan last week. His doctors all agree to do CT Scans with IV contrast instead of the PET because there are to many false-positives with the PET.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 63 | What? False positive? I've never heard of this. I am scheduled for my first pet scan on Monday.The Ent says it will show her more than a CT, which I've had plenty of.What should I expect?
Pat
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Patcey,
A false positive is when the scan shows possible cancer when it does not exist. A PET scan shows the heat signature of growing cells. Abnormal growth shows as "hot" and can indicate cancer. A number of other factors can also show hot that are not cancer. Sometimes it is just the healing process for those who have had previous treatment. Also, the oral cavity itself is notorious for being hot and can show false positives.
Positive PET scans are generally followed by another procedure or scan to confirm the result. I think it is EricS on this board who had a number of false positives.
Be that as it may, my RO only wants CT�s unless we find a good reason for a PET (too many false positives for him) others here have doctors who go to the PET first. My first CT post treatment is next week, 6 months out, so my RO is extra cautious about false positives whereas Andy is having a PET one month out. I have yet to make sense of the various ways different doctors view this stuff.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Pets false positives sometime involve flashes on the screen that shouldn't be there. Mine showed as possible lung involvement but they were wrong. False positives.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | we will get the results on Monday at his MO appt. he has warned us of the false positives. not sure why he chose to get one so soon. but i guess i should know better than to read too much into this one. thanks for the support.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Teresa, I had one done on Tuesday, waiting for results. Hope Andy's is fine......Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Praying for good results, I'm sure it will be fine!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | okay, I received a call from my oncologist that my petscan showed what they expected, on the back of tongue behind flap. So that is a good thing to me, it hasn't spread. Surgery scheduled next Friday......Thanks everyone! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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