What does HER2 NEU mean to you?

[Colleens_Husband]

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

[KRISS]

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.

[Gerri]

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,

[CPA]

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

[cafe1084]

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

[DonnaD]

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

[suzan w]

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.

[TSund]

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.

[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

[goops]

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.

[harrie]

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

[mcgle]

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

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

[caya]

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

[Colleen007]

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.

[harrie]

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

[Linda]

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

[goops]

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.

[Linda]

Hi: I was dx in spring, 05, so I'm over 2 and a half years out. No recurrence.
Still hold my breath a little -- less and less each month.
Best
L

[StephN]

My perspective comes as a pre-adjuvent Herceptin patient. I have loved rooting the Herceptin trials on and cheering the good news on much lower recurrance rates! How my life could have been different!?!

Dx when Herceptin just approved for stage IV. It was a sort of "tough love" time for treatment with taxanes and some other new drugs showing good results.

I got my preliminary path report from my surgeon when I went back for the one week followup after my lumpectomy.
He carefully explained my staging from what we had in front of us. He explained that my sentinal node and the next two were full of tumor so I would need my lower axilla excised and a port placed for chemos.

Not much said about the HER2. Until I faxed that report to a cancer researcher friend who called back with more grave news and suggesting I get a second opinion with a certain oncologist.

After the second surgery I followed up with that advice and had my slides reviewed at the U of W medical center. My meeting with this new team of docs gave me more insight into my diagnosis and the fact that I would need special care to fight my aggressive disease.

Interesting how the gravity of something can break a little at a time so there is time to sort of digest what it might mean.

I never panicked, but wanted to know more about my new Best Friend. I figured better to know the devil then merely be afraid of it.

After my raging mets dx I also found the book, "The making of Herceptin." It had been recently published then, and there was no web site or other support that I could find to interact with others in my situation. Everyone I knew with mets was dying! I felt quite ADRIFT in a sea of uncertainty. That book gave me hope that there were women even worse off than I was who could respond to the Herceptin and live to tell about it. This my first inkling that I too could survive. Learning how others had responded was my main interest in buying that book.

P.S. We learn to keep breathing - even after a mets diagnosis.

[AlaskaAngel]

Hi!

Good post, Steph! So many do not know what it was like to be diagnosed as HER2 more than just a few years ago.

When I was diagnosed I received my preliminary path report in early 2002 and learned I was ER+/PR+ but there was almost no other info on it back then even though it was done at a major cancer center. The Herceptin trial was in progress. Although I knew nothing about it then and would not have been eligible to participate (node-negatives under 2 cm were excluded), I was not given the final path report, and my oncologist did not consider it important to tell me that I was HER2+++ by IHC. I had been under the impression that he would share that kind of information with me but he never did. So I never knew at time of diagnosis that I was HER2+++, but was still expected to make a decision about whether to do chemotherapy and radation. There was no KI# for me to take in to consideration. There was no OncotypeDx then. And even aromatase inhibitors were just for metastatic bc. How can one make a good decision when not only is there a lot to learn but what they do know is from the tests my insurance paid for is hidden from me?

Almost 2 years later the onc still had not told me I was HER2+++. I only found out because I was suspicious and happened to request my final path report.

Needless to say, I did not get trastuzumab as treatment. When the results of the traztuzumab trial were announced there was dead silence from the experts as to what those of us who were NED and were several years out should or shouldn't do. (Since we had not been allowed to participate in the trial, they now had "no data" to know whether we should go ahead and have trastuzumab or not!) Eventually a weak recommendation came out indicating that those who were more than 6 months out from chemo should not have it, since it was considered to work better when given with chemo and by then we were a ways out from having chemo -- plus there was concern about added cardiotoxicity. Then later that evolved further into 1 year instead of 6 months. This was idiotic to me. They freely admitted that the greatest chance for recurrence was in the first TWO YEARS, yet they were recommending initially that those more than 6 months out shouldn't get trastuzumab?!!!? This made even less sense to me since they recommended that almost all newly diagnosed should get the drug. These are the gurus of treatment to depend upon for recommendations?

By then I had also discovered that the tamoxifen I had been taking also had been under investigation for about 4 years as likely being an agent that added fuel to the fire for recurrence for some HER2 positives. My onc never discussed this with me. (After all, why should a patient be told the pro's and con's about a drug until there is more info as to which ones will die from taking it and which ones won't? But... isn't there some logic to the idea that perhaps those at least risk, i.e., early stage, might want to at least discuss it? Especially since drugs like tamoxifen have additional side effects as well?)

By that time Arimidex was available to early stage patients. Instead of having the professionalism to discuss the whole thing with me, he said only that I probably had become menopausal enough to switch to that instead.

Some others who also were part of the Lost Regiment of HER2s decided to argue with their oncs, and eventually they received trastuzumab. My onc neither favored it nor denied it and provided a prescription at my request. But by that time, lapatinib was on the horizon. I put trastuzumab on hold. Eventually the opportunity came around for the TEACH trial, but only those who had done chemo and had never had Herceptin were eligible. I could have had lapatinib vs placebo, and after much independent consideration, decided not to. I certainly may regret that eventually.

I continue to pay attention to what is being learned. I posted an article in the Articles forum today about circulating tumor cells that would argue in favor of my using trastuzumab, and I only wish I had a more reliable person to consult than the oncologist about taking it.

That is how I felt and feel now about being HER2.

AlaskaAngel

[udith3]

After mets to the liver I have been on herceptin for 9 years as of feb 5 2008No tumors on the liver I am clean and will remain on herceptin..When it went to the liver one month after chemo and radiation..I was freaked... They put me on taxol and herceptin once a week for 6 months... after 8 week there was an 80% reduction of the tumors on the liver..After 6 months they took the taxol away and they kept me on herceptin once a week for 5 years then they put me on every 3 week,,, triple the dose ever since...One more week and I celebrate 9 years...I will be scaned on Friday... wish me luck... O hope this info helps you...Judy

[Julie2]

Wow Judy!! Your story is so inspiring. One more miracle of Herceptin. Thanks for leting us know.

Julie

[Lolly]

When I was diagnosed Stage IIIB in '99, I didn't know the significance of being HER2+. My surgeon and oncologist were both enthusiatic about Herceptin being there for me if I needed it down the road, but I didn't do any research at that time. As soon as I recurred, my onc wasted no time in starting me on Herceptin, and at that time I began researching and found this site, and along the way have come to feel very fortunate that I'm HER2+, as being ER/PR- has closed off many options.

The on-going research into the HER gene is being translated into new discoveries for all cancers. I feel like a lucky guinea pig :)

[weezie1053]

Being Her2Neu+ means seeking out the best in the medical field of oncology. It means renewing old friendships and forgiving old family members for being human. It is appreciation of neighbors who brought in food when you had no energy to drive to the grocery store or cook. It means signing onto this web site to make sure you are kept abreast (no pun intended) of treatment options. It means learning from the experiences of others who you never have met face to face, but with whom you share your fears and your successes. My life has been changed, but I can honestly say it changed for the better. I now take time to smell the roses and I also try to "pay it back."

Louise

[udith3]

I've been on for 9 years and remain clean..

[Cathya]

When I was first diagnosed my surgeon and onc thought that I had a 3 cm tumor and no positive nodes. My onc did not intend to do more than radiation. I was not comfortable about this as I thought the tumor was too large for there to be absolutely no spread. (I have an old microbiology degree....lol) Being her2+ never crossed our minds. After my onc found the tumor in my supraclavicular node after my supposedly clear margins he immediately put me on chemo (AC + Taxol). At that time testing for her2 was not standard but herceptin was getting a lot of press. I hesitated for quite a while but finally phoned my onc's office and left a message requesting that I be tested for her2. It was the first time I took any independent action and thank goodness I did. We were all surprised at the results and I began herceptin during my last treatment of taxol. I also bought the book on the development of herceptin and did a lot of reading. I really wasn't sure what to think but once I found this site and spent some time on it I found myself feeling more empowered, knowledgeable and calm. Because of my experience with a second tumor following clean margins I am a firm believer in all her2+ bc patients getting chemo but I am also very optomistic that we are indeed the lucky ones.

Cathy

[duga35]

Well, when I was dx the 1st of Dec, I was knocked down at the fact that I had male breast cancer at 39. When I went home and read the patholgy report it said er/pr positive, and her2-neu strongly positive. I didn't even know what that meant until I Googled it, read, and read, and read some more. It scared the h### out of me after I found out what it meant.
Then, for some reason I found this board :)
After reading, and reading, then reading some more, it helped calm me down, and after joining and interacting a bit I felt even better.
Where I am now.......
I saw my oncologist for the first time this week. I started Tamoxifin, and we discussed the her2. What he told me was that he didn't feel that I need chemo, nor Herceptin, because the infiltrating tumor was so small, and I was node negative. But, he doesn't have that much experience with male bc, especially at 39, so he wants to contact some doctors in bigger cities to see what data they have on men, before we make a decision. He is supposed to call me sometime this week to let me know what he thinks, but the more I think about it, I really think that I need to push for the Herceptin. Especially after reading so many good things about it here.

[Carol Carlson]

I was diagnoed in 3/04.. 2.2cm idc 4/18 nodes postive , er/pr/ neg and her2 positive.
Not having ANY knowledge of what being her2+ meant, I started my search. When I did find out, I was very concerned After my surgeries I started my standard chemo and asked my onc. about herceptin which I had read about. She said the studies were still on going and that there was a real concern about the cardiac side effects. SOOOOOO I cont. with my standard stuff and rads. until Oct. of '04. When I went back for a check up in May, she discussed the woderful and hopeful results of the findings and that since there was no protocol at the time about how effective it would be to receive after having been out of standard chemo for 9 months. She called her expert friend at Dan Farber about whether there was a protocal yet on stage 1-2 B.C. pateints receving Herceptin. His answer was bascially. gosh we don't have enough data yet to determine whether or not early stage patients, being out of standard chemo for more the 6 months would actually benefit.
Fortunately, my onc. encouraged me to go on it for a year and they would do the reg cardiac untrasounds to pick up any change or lowering of LVF. I received it for a year and so happy I did. However, at the time they prety much left the ball in my court because they did not have the comprehensive data that they have now.
Over the last 3 years, they do have emperical data to determine that, indeed , it should be given to her2 patients.
When I first found out that I was her2pos., I just figured well, this is Murphy's law.... if I'm going to get something, it's gotta be big and nasty.
I'm now a 4 year survivor and I don't have the same " dread" that first occured when I was diagnosed. I feel that we her2 gals and guys are going to have a much better shot at recovery. Thanks to drugs like herceptin.
Carol

[udith3]

Get another opinion if your oncogolist is not sure. I live in Pittsburgh,Pa.. and if you have brest cancer this is a great place for treatment and research... there are men where I go that have breast cancer..This is nothing to fool around with...Take care~~~Judith

[Jackie07]

I am uploading this file again because I posted in the wrong thread.