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Old 07-17-2010, 11:18 AM   #1
pie
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Report went from her2 - to equivocal to her2 +

I am very confused. When first tested, I was 1.1 her2-. Then the sample was retested (why I don't know) the sample was found to be equivocal (2.2)on the FISH test. Then it was tested on the IHC and found to be her2+. Has anyone experienced this? How can there be three different outcomes?
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Old 07-17-2010, 03:08 PM   #2
Lien
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Re: Report went from her2 - to equivocal to her2 +

Hi Pie,

Are you sure it was the Fish test that gave the 2.2 score, not the Her2+?

When I had my sample tested, IHC score was 2, and FISH was her2+.

All test results are as good as the pathologist who does them.

Anyway, having Her2+ disease means you have more treatment options and most of those have fewer/lesser side effects.

Why don't you ask your doctor about these puzzling scores? They should be able to explain.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 07-17-2010, 03:34 PM   #3
pie
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Re: Report went from her2 - to equivocal to her2 +

Jacqueline,
Yes, the FISH score was 2.2 which means it was inconclusive. The report did not say what the IHC score was, just that it was amplified (her2+). The report was sent to my primary doctor. I asked her to explain it to me, but she said I wouldn't understand because it was in pathological terms. I don't have another appointment with my breast surgeon, but I think I'm going to ask that the test be repeated. The scary thoughts keep coming. Thanks for the reply.
Judy
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Old 07-17-2010, 04:04 PM   #4
tricia keegan
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Re: Report went from her2 - to equivocal to her2 +

Pie, if you're her2+ you'll have herceptin, so ask your onc to go over your questions with you. As Jacqueline says, this will mean more options for you to fight this anyway!
It's also a good idea to ask for copy of any reports!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-17-2010, 05:03 PM   #5
BonnieR
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Re: Report went from her2 - to equivocal to her2 +

You certainly have every right to having your doctor explain it in NON pathology terms. And she should be able to do that.
I went to the pathologist to have him explain my results because they were unclear. AND he uncovered more information when he looked the second time!
Have your questions written down so you dont forget. And write the replies. Have someone with you.
Keep the faith.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 07-18-2010, 01:52 AM   #6
Chelee
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Re: Report went from her2 - to equivocal to her2 +

The ladies here gave you great advice. Get a copy of your Path Report and start asking for copies of your labs and anything else at each visit. It's good to keep your own copies---and nice to have them if you seek out 2nd opinions. I know this is so over whelming and confusing when first DX...but your off to a great start and asking the right questions. It's your oncologist job to make sure you understand everything...it truly is your right...don't let them rush you in and out. Be as pro-active as possible. We will be happy to help you in anyway we can...so please stick around. We are here for you.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-19-2010, 12:44 PM   #7
Emelie B
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Re: Report went from her2 - to equivocal to her2 +

Pie,
The other ladies are right on! It is your right to know and understand everything that is happening to you, and there is a lot going on.
This is a great time to learn how to be your best advocate. I found that my oncology nurses are better at answering questions about side effects and remedies than the doctors. Don't ever be afraid to ask your doctor or nurse if you have questions.
I have copies of all my records, and was glad I did when I recently went for a second opinion.
We are here for you and will help in any way we can.
Stay strong and try not to worry too much. It really zaps the energy you need right now.
Look forward to hearing from you soon,
Emelie
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Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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