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Old 11-23-2008, 06:53 PM   #1
CourtneyL
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Join Date: Aug 2008
Location: San Francisco
Posts: 261
Conflicting PET/CT scan results

Hi Ladies - I have a question about my recent PET and CT scan results I was hoping your collective knowledge could help with.

My CA 15-3 markers have been normal since August but have been slowly climbing (last one was 25). My recent CT scan was clear. However, the PET had a few bone areas lit up. My doctor said this is most likely bone healing but it still has me nervous. Has anyone else had this experience? Clear CT, normal markers, but bone activity on a PET? Any information would be greatly appreciated. I'm trying not to worry but, of course, I am. Any information you could provide on having similar scenarios would be greatly appreciated!

Thank you!!
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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Old 11-23-2008, 07:06 PM   #2
Becky
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Location: Stockton, NJ
Posts: 3,884
Dear Courtney

It is certainly true that healing can cause some spots to light up on a Pet scan. This is because (like cancer) healing is also rapidly dividing cells. Not as fast as cancer but the cells are reproducing (in a normal way) to fill in the gaps that the cancer took up. Since the chemo kills the cancer then the body has to try to fill in that void.

Also, healing causes some inflammation that draws white blood cells to the area to protect it while building tissue. This also causes Pet scans to light up. This is why arthitis lights up on Pet scans too.

Relax for now and enjoy the no chemo zone. Pet scans light up for alot of reasons. If you're not sure, call and ask to speak to the radiologist who read the scan and ask for a copy of the full report (which you should have anyway for your records).

I am sure all is well.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 9 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-23-2008, 09:19 PM   #3
Sherryg683
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I've had several instances of false positives..scared the daylights out of me. First the PET lit up in my effected breast close to the original surgery site, it was very low SUV. After having an ultrasound and mammogram, it was determined it was scar tissue. On my next set of scans, the issue had resolved itself, the area didn't light up. Then, on my last set of scans, I had a spot on my left ovary light up, the spot was about 2cm. It had moderately high SUV intake. I had a vaginal sonogram done and it was determined it was just a fluid filled cyst that had already shrunk quite a bit. My GYN says that they see quite a few false PET positives, and that mine was probably due to the fact that I was ovulating when I did my scan. So it can and does happen. I am still hoping that my original diagnosis of 2 very small lung mets may have been false positives. My oncologist did not see anything on the CT scan but there were 2 small areas that lit up on PET, looking back at my reports, they had very very low SUV intake, so it could have very well been inflamation or something else. I had just gotten over being dreadfully sick with the flu when my original scans were taken. We never did biopsy them because they were too small, they were gone by the next scan after 6 weeks of chemo. False positive are pretty common in PET scans, that's why if I ever get anymore that we can't tell for sure about, I will insist on some sort of biopsy before I just assume the worst and get back on chemo...sherryg683
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!

Last edited by Sherryg683; 11-23-2008 at 09:28 PM..
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Old 11-23-2008, 09:46 PM   #4
SoCalGal
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Location: LA LA Land
Posts: 1,290
My last pet had increased activity in my sternum but my CT showed stable or no remarkable change. My onc asked if I was bruised and I said - yes and showed her a black and blue mark from the prior week's acupuncture. She seemed to think that was what made the pet light up. (Light up seems like a baby term - doesn't it? Increased metabolic activity from a small black and blue mark? For now that's what I'll go with. Hope yours is nothing too!
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1996 cancer?! 1.3 cm lumpectomy(20nodes NEGATIVE) CMF + rads.
’02 recurrence. bilats.w/recon. ACx2. skin lymphatic rash. taxotere w/Herceptin x4. Herceptin/zeloda.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. continue herceptin only thru 4/04 NED.

‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out.
1/06 RE-radiation to scar line. NED.
3/07 mets! lungs.sternum. Tykerb/Xeloda boo. Tykerb/Carbo/Gemzar boo.
12/07 Herceptin.Tykerb.GOD.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE. Sternum boo.
4/09 attack sternum: rads for the third time…(10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Doctor is perplexed at such improvement without treatment. Cautiously Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin - weird allergy. Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 – drop everything and join a sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA, ALMOST 6 YEARS STAGE 4 AND 17 YEARS FROM ORIGINAL DIAGNOSIS! continue Herceptin, Avastin, Zometa, Perjeta
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 years stage 4.
"FAILED" PETscan on 4/2 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months. Cea 19. 15-3 is 62.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva
(Ass Snake found collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head. Continuing dance therapy.

2014 here we go...
Jan 2014: CONTINUING on HAPX…
(s l o w progression, CEA-20, CA15-3=77)
FEB 2014 PetCT clinical “impression”:
1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic leason. Really? Can they use less commitful language?
2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing.
(SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA
7 YEARS STAGE 4
18 YEARS FROM ORIGINAL DX!
(CUCK FANCER)
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