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Old 08-21-2008, 06:21 PM   #1
Melissa
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Do I need the fish test?

Hi,
I'm asking for opinions. When I was dx both the biopsy and surgery results came back as her2 + with a reading of 80% or more. My onc said with a reading this high there's no need for the fish test and I would have herceptin. I recently read about someone who has a 3+++ after biopsy but after surgery her onc said she would still need the fish test. Sure enough it did not come back as positive for her2 and she will not have herceptin. My question is should I have my tumor retested with the fish test or just forget it since I had herceptin. I guess I'm just hoping that herceptin worked for me and It seems to work better if your a strong her2 positive. At times I still get anxious and I am just wondering? I'm selfish and want to be around for my three girls.
Thanks,
Melissa
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2022 - 16 year survivor!
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Old 08-21-2008, 06:38 PM   #2
Becky
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Dear Melissa

My vote is no. What is the point as you have completed Herceptin? Secondly, there are studies that Herceptin does help some women who are Her2 neg. So, Herceptin helped you regardless. Bet on it and never look back.

I toyed some similar questions myself at one point - should I get Top 2A tested (if positive, AC chemo is a better choice than TCH) - well chemo was over so what's the point even if Top 2A neg, AC works but is more toxic so one could choose the less toxic TCH safely. Oh well. Same with the Fish or Pten test. Finished Herceptin so there was nothing to do about it if I was fish negative. Even thought of getting EGFR (aka Her1) tested. There was nothing to do about that and treatment was well over anyway.

I did everything I could and so have you. All you might find out is you did more than necessary and oh well about that. I do think your thinking is natural because I was that way too probably right around the time (2 yrs out) as you.

Peace
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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
Prolia every 6 months for osteopenia

NED 18 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 08-21-2008, 06:39 PM   #3
Joan M
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Melissa,

I would try to get the FISH test because results can vary.

When I was first diagnosed, the immunohistochemistry test showed 3+ and I was given Herceptin based on that. However, two months after my mastecomy and immediate DIEP flap reconstruction (and after two round of AC) I had a small pea-sized nodule appear in my reconstructed breast. It was taken out but not tested for HER2 until a year later when I requested the test (it had been tested for the bc cancer in general). The test came back HER2 +2 for IHC and HER2- for FISH (when IHC is +2, the FISH test is automatically used as a tie-breaker).

Because of the inconsistent results my onc suggested I have my original bc slides and the slides for the little nodule tested in a major lab. They both came back IHC 2+ and HER2 borderline (2.0), and the onc there considered that borderline positive (rather than negative, since 2.0 is right in the middle) and felt it was good that I had taken the Herceptin.

(As an aside, it's unclear what the little nodule resulted from. It could have been leftover from the skin-sparing mastectomy which is what I had to facilitate the reconstruction (there's a tiny chance of that) or perhaps it was from the core biopsy because it occurred just directly under the scar from the biopsy. In any case, it was removed -- so I now have a lumpectomy in my reconstructed breast -- and I've never had a problem there since.)

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 08-21-2008, 09:50 PM   #4
BonnieR
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Melissa, I was told the same thing you were. That my reading was so high the fish test was not required.
Perhaps you could look at this situation differently. What if you DID have additional tests that resulted in NOT receiving the Herceptin? Might you not have worried about that scenario more? In that case, I would be always be wondering which test was the one to bank on.
Keep the faith.
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Bonnie

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 08-22-2008, 01:29 PM   #5
BreezeGirl
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Melissa,

I was originally diagnosed 2.7 Her2u +. In my course of treatment I went for a second opinion that that DR. suggested the FISH test. It was actually quite stressful because I had already accepted that I was HER2U+ and if it came back negative I would need to rethink my treatment and potential go back for more chemo. The FISH test came back 3.1. I would discuss with your Onc how the original test was performed and what the risk of false positives would be. Also, discuss what would happen if it did come back negative.
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Old 08-23-2008, 12:32 AM   #6
harrie
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Melissa, check out the thread Jean started "Want your 2 cents worth on this".
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 08-23-2008, 07:02 PM   #7
juanita
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Never had the fish test and my onc didn't think we needed to go back and do it since we knew I was her2+. I did my year of herceptin based on that.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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