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Old 01-15-2005, 11:17 PM   #1
Roxi1
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Her-2/neu 2+ Borderline
Rec'd my path report yesterday. Its not complete yet, as I still need a SNB on 1/25, and need more studies on one of the lab markers, which leads to my question: As the Her-2/neu is 2+ or borderline, another lab test called a FISH will be done. I am hoping that the positive Her-2/neu was an error, and this will be discovered when they do the FISH. Is this very likely? I am also Estrogen/Progesterone positive, and have heard, that if you are E/P positive, than more than likely you are not also Her-2/neu positive. Has anyone else heard this?
Does anyone have more information on this subject that I do?
Also, if I am Her-2/neu Positive, than does that make it more likely that my cancer has spread to the axillary lymph nodes (I am 1.2 cm invasive ductal carcinoma, lumpectomy 1/5, Histology was Grade 2 (however, the Her-2/neu is not a part of the Histology Grading system).
Thank you for any information you can give me.
Roxanne
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Old 01-16-2005, 12:52 AM   #2
*_Leslie_*
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Hi Roxanne,

In my case I was a 2+ for Her2 as you are. My FISH test came back negative. I was estrogen / progesterone negative, grade3.

Just passed my three year mark from diagnosis and am doing well.

I wish you the best!
Leslie
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Old 01-16-2005, 08:27 AM   #3
*_Annemarie_*
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I am er/pr positive and also her2+++. It just means I have a very aggressive tumor that can be treated with hormones and Herceptin. The more +++ the more aggressive but the better the response is to Herceptin.
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Old 01-16-2005, 08:46 AM   #4
Ron, Cyndi's Husband
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Roxi1,

You are correct, the FISH test is the current gold standard for determining HER2 status. Several ladies post here who are ER/PR positive and HER2 positive. This is a somewhat uncommon condition but it happens. I have read on this board that when one is ER/PR & HER2 that the disease is somewhat easier to treat than being only HER2 positive. None of the treatments are easy or pleasant. Most of the people one meets here are simply strong ladies with a commitment to beat the disease. Many have fought the battle at multiple sites (lung, bone, liver, lymph, brain, etc.) and have become stronger than they ever imagined. For us, the secret is to be vigilant, always question the doctors, insist that your exams are more than a “How are you feeling, a breast exam, and I will see you in six months” body scans and occasional brain scans are important tools especially for anyone with HER2.

I hope that you will not be HER2 also. Remember only about 1 in 5 are HER2 and the odds of being ER/PR + HER2 are far less. Let me also tell you, “You will take far more from of cancer than cancer will take from you.”

God Bless You,
ron
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Old 01-16-2005, 01:01 PM   #5
AlaskaAngel
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You can count me as a HER2+++, ER+, PR+ (negative nodes, 1.6 IDC and never had the FISH).

Ron or Lisa or ?,

I'm 2 years out from all treatment and NED but am wondering about the weird feelings in the head of spots of pressure sensation that come and go. I've never been one to have other than rare headaches in my life. I've never had any scanning of the brain. I know that a number of HER2's have had brain mets without any symptoms at all, but are the symptoms I have at all more typical for brain mets?

In the first year after treatment I had a very short-term problem with vertigo that has never recurred. The only bone scan I had was prior to chemo and that came back negative. I've had chest CT and chest MRI and abdominal CT, and all came back okay.
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Old 01-16-2005, 03:39 PM   #6
Roxi1
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Thank you Leslie. You are living testimony that borderline results do come back FISH negative.

And, Ron, thank you very much for not only a very informative and helpful message, but also a testimony to ladies who I hold as role models.
God bless you too, and thank you
Roxanne
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Old 01-17-2005, 12:19 AM   #7
StephN
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Hi -
Good questions, and I hope that the further testing will establish clearly what you need to do for further treatment.

Ron - I must address the "1 in 5" number you gave as Her2 positive. Are you talking +++ or what??
My understanding is that the percentage of HER2 postitive is more like 25 - 30% now with the more widespread and better testing. These lower numbers have always been inaccuarate as there are many places in THIS country, let alone the world, that still do not test for this.

I am Her+++ and was found by IHC test. Never had FISH - no need for that in my case as NO question. I am both ER/PR- - as well. Which I am very glad of as I do not have to go through the hormone suppressors and all of their effects. I am getting old fast enough without THAT!
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Old 01-20-2005, 10:52 PM   #8
Bevie
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Hi, I was HER2+2 with IHC and retested positive with FISH also ER+ , tumor was 1.5 cm 1 node removed which was negative.
Have had 1 neg bone scan and no other scans.
I am taking Arimidex going on three years.
So Far so good was DX 11/00
Also had a/c and radation treatments.

I hope your FISH test is negative but any case
This is a wonderful board with tons of information and xlnt support.
Hang in there and check back often
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