What does HER2 NEU mean to you?
 

Friends:

I am sorry if this may be a repetitive post, I searched for a similar thread but couldn't find one.

When I started reading about HER2 NEU, I admit that it scared me more than even the initial Breast cancer diagnosis did. Now that Colleen's tumor is shrinking down to nothing, my thinking has evolved a little bit.

My question to you is this: "What did HER2 NEU mean to you when you first learned about it, and what does it mean to you now?

Thanks,

Lee

I admit I had the same reaction as the two of you did. Finding out I had BC was bad enough but then they tacked on the her2 a week after surgery and the wall came tumbling down. All I could find on the internet was sites telling me I was going to die. It wasn't until I found this site that I started to calm down. I am a year out and know that this is not going to kill me. And the more I read and hear about herceptin and other new drugs specifically for her2, I would almost rather be in this club than any other BC. It seems like all the new drugs are for us lucky girls here.

Lee,

I wanted to learn more about HER2 and Herceptin and found a book at the library, HER-2 the Making of Herceptin, a Revolutionary Treatment, by Robert Bazell. It is the story of Herceptin and how Dr. Slamon worked on the development of this miracle drug and how his research ultimately was funded. Very interesting reading. It is available on Amazon.com.

All my best,

I think that Becky is the one who often reminds us that much of the survival information regarding Her2 found on the web is pre-Herceptin. We really do not have any long-term survival statistics for early stage Her2 BC survival when Herceptin is added to adjuvant or neo-adjuvant chemo regimens.

Becky, if you read this please add your $.02

Her 2neu means....
 

a guarded optimism, NOW. Only because of the introduction of herceptin and Tykerb for us early stagers. THEN, it meant living with this dark ominous cloud hanging over my head waiting for absolute metastasis. I was convinced I would die from this, at least before my time.

I say guarded now because I find it difficult to put all hopes of a complete cure into the hands of one or two drugs. My concern now, being just a few weeks away from completion of herceptin is what happens when I am finished with it? It is still a cancer stimulated by a gene causing overgrowth of cells. I still have the gene and I still have some breast cells, if I have the biology right. If anyone can explain to me that this fear is irrational I would be happy to hear it

Lee,
So glad to hear your wife is responding so well to treatment. Has she started Herceptin yet?

I felt the same way you did when I rec'd the news of being Her2+ (the one two punch) But I feel so differently now. Like someone said most stats are before Herceptin. Herceptin is our wonder drug I am so thankful to have it available to us now. Many just a few years ago were not able to have it unless they had advanced breast cancer. I just finished in Dec. and really did not want to go off of it. Just like cafe 1084 mentioned. I do wish the HERA trial (one year of Herceptin vs 2 years) results were in.

I was lucky enough to attend the San Antonio Breast conference in Dec. The question was asked if one year of Herceptin is enough. The expert said yes! So much research is being done with Her2+ BC.

I heard it once explained, the bad news is you are Her2+ and the good news is you are Her2+. We do have a very successful treatment now!

I wish you and your wife the best.
Donna

When my biopsy came back Her2+++ the first doctor I saw drew a chart...headed "Good" and "Bad" He put ER+ in the "Good" column-because that meant I could be treated with an aromatase inhibitor. He put Her2+++in the "Bad" column, explaining that it meant I had an agressive form of cancer (invasive lobular) with a mutated gene that made it rapid growing. EEKS!!! Time for a second opinion!!! After surgery, and sentinel node biopsy, my (new) surgeon and oncologist said that I was a good candidate for Herceptin! Even though at the time it had not yet been approved by the FDA for early stage bc, my oncologist prescribed it Off Lable. And as we all know, the news just keeps getting better as far as Her2+++bc is concerned. So my emotions ran the gamut when I heard Her2+++ . This site has provided me with such a safety net.

I will never forget paging through Ruth's pathology report from her needle biopsy. I had read enought to get a grasp on what I was looking at. Everything was "moderate" (except for tumor size), and I kept thinking, "oh, good", until I got to the LAST PAGE. The very high herceptin marking jumped out at me and as I recall they even had a computer generated "prognosis "poor" I was absolutely terrified. It wasn't until we saw the 2nd oncologist and she said "you are HER2+ and that's good because we have a way to treat it"... that I calmed down. I guess we are somewhat in uncharted waters with Herceptin being so new, especially for non-metastaic cancer, but also relatively new for metastatic cancer also. Who knows what the future may hold. I hope and pray that EVERYONE here is part of a remarkable success story....

Terri

PS If you haven't read the Herceptin book ("The Making of Herceptin") I recommend it!!!! scary, incredible, thought provoking, and very hopeful for the future.

Lee what an intereting thread to start....
 

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

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

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.

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

My surgeon made me feel like my chances of survival were slim - so by the time I saw an oncologist I was too afraid to ask questions. My only question was "Is this beatable" and he said it was quite beatable. He then told me that I am her-2 positive and that is good news because there are such great drugs to control it. It wasn't until recently that I realized that being Her-2 positive may not have been the best news, I am thankful that you no longer need to have advanced breast cancer to get Herceptin.

good news/bad news
 

Bad news I found out I was HER2 neu elevated.
Good news because there is herceptin.
Bad news I am ER+/PR+.
Good news there are AI meds available.

Bad news when I discovered I had invasive DCIS instead of just DCIS.
Good news when I found it it was 8mm with no lymph nodes.

Good-bad news: that there are no long term studies in regards to the effectiveness of chemo and other adjuvant therapies for tumors so small so it was a bit more difficult to make those decisions on treatment.

That is how it was for months following dx....good news-bad news-good news-bad news...what the heck was I suppose to do????!!! It was like living in a paradox!
Ended with a second opinion consult with Dr. Mark Pegrem and then I was all set to proceed.
Now it has all been done and I'm happy!
Maryanne

'Bad news I am ER+/PR+.'

Why is being hormone positive bad news when you are HER2/neu, Harrie?

Yes Harrie please explain why it is bad news to be ER+PR+ when Her2+. My onc. told me it was good, as we have more options for treatment - the hormonals, and that in general the ER+PR+ BC is not as aggressive as the ER-PR- type.

Thank you for clarifiying this for us ER+PR+ gals.

all the best
caya

When I first found out I was HER2+, I thought I was doomed. I was pregnant with my daughter at the time and in reading stuff on the internet (which I now know was pre-Herceptin), it said that people who were HER2+ would live for 2 years. Then, after my daughter was born, I found out that my cancer was stage IV due to the spread to the liver & bones.

Since I am stage IV, I will get Herceptin until it stops working. I almost feel lucky now that I am HER2+ because we now have so many options for treatment. Happily, I have lived beyond the 2 years that I originally thought I had and continue to live a full life.

for caya
 

Caya, the bad news with ER/PR+ has nothing to do with the HER2 neu elevation.
The "bad news" with ER-PR is that those hormones can influence the growth of the tumors and therefore will need to surpress the hormone levels which means taking AI meds which may have side effects to deal with as well as the physiological changes that occur with the surpression of estrogen.
maryanne

The book
 

When I was first dx and had not yet found this website, I stumbled on the book "The Making of Herceptin," which was basically lying around my onc's office with a bunch of Reader's Digests. I have to warn newbies, that reading that book as your first introduction to being Her positive can be terrifying! In an attempt to make the book read like a thriller, it uses overly dramatic language (I still remember "graveyards of women") and focuses on women with the most treatment resistant disease.
I agree that for a old hand, that book is really interesting (especially the history of the funding for Herceptin research -- thank you, Revlon and others in LA!) but at the time, it threw me into a major panic.
Meanwhile, my doc just kept telling me about the women she was treating with herceptin and how they were not recurring. Not one. She reminds me of that every time I see her.
Linda
Stage 3a

Linda - I think I like your oncologist - I see we are both stage 3A - it encourages me to see that you were diagnosed at least 1 year before me and I assume by your comments that you have not had any reoccurance.