What does HER2 NEU mean to you?

[Jean]

When I was first dx. my dr. pointed that I caught my breast cancer early
and did not even elaborate on the Her2+++ portion. He told me I would have an AI and of course radiation. I had discovered Her2 information just
prior to my dx. because there was a major TV news the month before on hercetpin and the great results that advanced bc patients were having.
I can remember clearly as I was waiting for my pathology reports that I said to myself, well I better watch for that. Sure enough the Her2 was present. When the surgeon was finished speaking I asked him well what about the Her2+++, he told me due to the size and node neg. not to worry. Hmmmmm, I don't think so. I was extremely worried since Her2+++ is such a bad boy. Once I started treatment I felt much better
knowing I was doing all that I could. For me the dx was not as hard on me as trying to get the correct treatment. I struggled for months and months...Thank God for Christine who encouraged me that I was not
crazy (as one of the onc suggested to my husband that I was not accepting my dx. and should seek counceling.) In finding the Her2 site
I have saved my life as far as I am concerned. Becky was my first contact sister (Love you Becky) who reached out to me. I gained incrediable information which propelled me forward. So to answer your question - in the beginning of dx. I thought INSTANT DOOM was around the corner. After understanding Herceptin and the results it offered to advanced bc - I was totally stymied as to why early stagers were
not given treatment. Then I learned that some early stagers were getting it off label (not through any of my NY dr.'s but from this site. After I was on Herceptin 8 months it was approved for early stagers. How do I feel now...I thank God for herceptin and I understand that this disease it not instant doom...we have come a long way in a short time - we still have a longer way to go. I live and enjoy each day!

Hugs,
Jean

[mslinda]

Just the diagnosis of BC scared me so much. After I saw my onc, and she told me I was her2 and what it could mean added to the bc, I was scared. I didn't get Herceptin. It was not approved for node negative bc. Thankfully my tumor was small, 7 mm. So we shall see as time goes by how things happen. I am 3 years out, and am assured by everyone that this is a turning point. All I can do is keep a positive attitude, and pray a lot.
Linda

[Becky]

I did a lot of research prior to surgery and waiting for my pathology results. I already knew the tumor was a Stage 1 size and my nodes weren't palpable. I told my husband I could take anything but I sure hoped I wasn't Her2neu. I felt confident I wasn't since it is only 20% of the people. When I was diagnosed, there was no adjuvant Herceptin (I got it 4 months after my last chemo due to good timing of the trial results). However, I was involved with this group for a long time. I did one of the Young Survival Coilition booth shows (when I met Love & Light Lisa). At that show, I met dozens of Her2+ women who were 3, 5, 8+ year survivors who were Her2 and did not get Herceptin - for some, the trial wasn't even begun. Randy Rosenberg, past President of the YSC and on their board of directors is 10+ years and is Her2 - never recurred! The thing we all have to remember is more do not recur than do. It is not a death sentence, even without Herceptin. It just recurs more often than the ER+/PR+ type. My first onc said about twice as much. So, when you look at statistics (many are 5 or 10 year survival stats - prior to Herceptin, prior to dense dose and in the 10 year case - even 6 yrs - prior to taxanes), he said if it says 85% that it is 75% for a Her2+. If one says that Herceptin reduces recurrence by 50% that means that a Her2+ person is now at 87.5% - better than ER+/PR+. And what does that mean with taxanes, dense dose, lifestyle studies etc.

It seems scary but cancer is scary - no matter what kind of bc you have but at least all the researchers just love our little ole Her2 receptor. That's fine with me.

[Mary Jo]

Honestly, all I cared about was that I had cancer and I was fearful that I was going to die. Her2 neg./pos. - er/pr neg./pos. ~ it didn't matter to be at all. It was cancer and that's all I needed to know.

Then as time went on and I began to read about and understand my disease I became a bit more fearful BUT way more thankful that herceptin was approved for early stagers the month before I was diagnosed. I started feeling blessed that I was diagnosed when I was.

Basically though - it was cancer to me. Nothing less and nothing more. The big "C" word that I prayed I'd never ever hear.

Interesting post..........................

Mary Jo