Just diagnosed with Her2/neu+. What the heck does that mean?

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ango74
ango74 Member Posts: 255
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi, I'm Angie and was just diagnosed 7/18.  What is Her2/neu+? I just recieved my full pathology report today and it says ER-/PR- and Her2+. I haven't had my nodes tested yet, that is coming up next week.  I know that it is also a grade 3 and a little over 3cm.  I need to put this on my diagnoses area but haven't figured out how to do that yet.  If anyone can tell me about the Her2 part it would be great.  My general surgeon has been giving me my results and it seems like he is talking in circles.  

Thanks in advance! 

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited July 2008

    Angie,

    So sorry your here but it's a good thing you found us. I have the same diagnosis as you. Her2+ is actually a good thing for us ER-/PR- girls. Basically we're candidates for herceptin, an adjuvent therapy medicine which is basically a preventative after treatment. Women that are ER+ and PR+ can take tamoxifin for five years. We do not have anything like that since our tumors are not estrogen or progestrone driven. Check out the herceptin website, www.herceptin.com. Herceptin just recently has been proven to combat early stage breast cancer. It used to be only available for stage 4. I started herceptin two weeks ago and have no problems. Good luck to you. 

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  • marejo
    marejo Member Posts: 1,356
    edited July 2008

    Hi Angie,

    Basically I was going to say everything Roxi wrote.  Her2 breast cancer, before Herceptin came to be, was not always a favorable breast cancer to get.  BUT since herceptin we are actually fortunate to be what we are.  Fortunate is probably a poor choice of words but I think you know what I mean.

    I was diagnosed with stage 2 her2 positive, er/pr negative breast cancer in June of 2005.  I had a large tumor - 4 cm - 1 lymph node had one micromet.  After my mastectomy, chemo, radiation and 1 year of herceptin I am now approaching my 3 year survivor cancerversary - July 28!

    I'm sorry you had to receive a breast cancer diagnosis as I know how devastated you must feel at this point BUT I am here to encourage you and tell you that you can and will do well as you walk this journey.  Stay focused - stay strong - stay optimistic. 

    God Bless you with His peace Angie.

    Mary Jo

    P.S. Another wonderful site for he2 positive people is her2support.org

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  • Chelee
    Chelee Member Posts: 513
    edited July 2008

    Hi Angie,  I'm so sorry you had to join us.  But you found a great bunch of women that will help support you in any way they can.  I'm Her2/neu, 3+++. Stage IIIA, Er & Pr wealky positive, 5 positive nodes.  I have already been through chemo and treatment and I am exactly 2 yrs and 6 months out and NED. (Ned means, no evidence of disease.) 

    When your first diagnoised your on information overload.  Its almost too much to take in.  Does your surgeon have a nurse practioner in his office that can spend some time with you and go over your diagnoises and path report. My surgeons nurse practioner did this with me and it was SO MUCH better then my surgeon trying to explain things. 

    Being Her2 positive is a good thing in its own way believe it or not.  There is more drugs to fight it and treatment is moving fast for us Her2 women.   Herceptin is one of the major players.  I am sure you will be getting that drug when you start chemo.  Don't worry about that one because it really is pretty easy to deal with.  Its very well tolerated.  :)  Its changed things for the Her2 women. 

    I just re-read your post.  I see you haven't had your nodes tested yet.  After you get that done things will move forward and you will have more information at hand.  But please see if you can talk to a nurse practioner or someone at your place that has time to explain all this.  It can be so confusing at first. Hang in there and keep asking lots of questions...take one day at a time. 

    But dont' hesitate to ask us women here...we will be more then glad to help you anyway we can. 

    Chelee

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  • BMac
    BMac Member Posts: 650
    edited July 2008

    Hi Angie, I'm another Her2+ girl who's grateful for Herceptin.  You get it every three weeks for a year and I am now at the half way mark.  I am so glad that they have this drug for us.  Like someone else said, not too many noticeable side effects, just a pain to go in every three weeks, but this too shall pass.  I had chemo (started Herceptin at cycle 4) followed by surgery (bilat mast) and I'm finishing rads today!!!!

    Good luck.

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  • texasmom
    texasmom Member Posts: 121
    edited July 2008
    I am in the same boat. You will find out more when you go to your oncologist. Since you have not had your nodes checked yet, you have some more steps to go through before then. Mine was stage 1 so I had all my surgery done before being referred to an oncologist for other treatment but seems like it differs based on situation. You can find out more at www.her2support.org and click on the HER2 link.
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  • Yogi70
    Yogi70 Member Posts: 654
    edited July 2008

    Hi Angie,

    I'm with you, er/pr- her2++.   Right now I'm on taxol and herceptin, I have four more taxol tx and a year of herceptin every week so far so good.  HER2 is a protein on the cancer that overexpresses and causes the cancer to grow faster.  Herceptin attacks it in two different ways.  Although I try not to live by statistics, herceptin has given us HER2 girls better chances at beating this hateful disease.  God Bless You!!!  Stick with us.

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  • ango74
    ango74 Member Posts: 255
    edited July 2008

    Thank you all for your responses.  I have another question if you don't mind.  I read on the Hercptin web site that Her2+ has a higher rate of reccurance.  Did you all have masectomys? My general surgeon keeps saying lumpectomy, but I would think with the rate of reccurance being higher it would be better to have a masectomy. 

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  • Yogi70
    Yogi70 Member Posts: 654
    edited July 2008

    I had mastectomy, but that was because I had two smaller tumors around my primary tumor.  I thought that was best for me.  It is a personal decision.  Plenty of HER2 gals have had lumpectomies.  Talk to your doc. about lumpectomy vs mastectomy.  I can't remember everything my surgeon said to me about it so I don't want to misinform you.  I'm sure someone who can answer your question will be along shortly.

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  • Liz08
    Liz08 Member Posts: 470
    edited July 2008

    Ango-

    if you do choose a lumpectomy be sure to have nice wide margins. Most places say 2mm is sufficient but when you think about 2mm isn't much.  I ended up with a lumpectomy with each margin being over 1cm and since my microinvasion was towards the skin, my surgeon removed extra skin in that area. I ended up with a re-excision to remove the extra skin.  Some literature says that women who had a lumpectomy with wide margins do better than women with narrow margins, this was confirmed by my oncologists. 

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  • texasmom
    texasmom Member Posts: 121
    edited July 2008

    I had a lumpectomy but was prepared in my mind for a masectomy. My surgeon didn't even suggest it because my breasts were large enough for the lumpectomy to be successful. I had a surgical biopsy and then he went back in for a second surgery (lumpectomy) to get clear margins plus do a sentinel node biopsy. We didn't know the exact pathology of my cancer at the time of the second surgery so I'm not sure if that would have changed my surgeon's recommendation, but I don't think so. Many things are considered before surgery and treatment....location, pathology, size of cancer, size of breasts, lymph node involvement, lymph/vascular involvement, and so on. I had a surgeon that had years and years of experience so I felt confident in his choice. I have to admit that I like having my breast even with the large scar (about 5-6 inches because he removed three areas but not all were cancer), but the jury is still out on whether I should have pushed for more aggressive surgery.

    I did choose to do 6 rounds of chemo as an insurance policy. I will also get 6 weeks of radiology and then Herceptin for a total of one year. Chemo and Herceptin are given every three weeks. I just finished chemo #3.

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited July 2008

    Hi Angie, and welcome to the website. Sorry you have to be here, but this is a great place for information and support. I'm another ER/PR- Her2+, and my original surgical plan was for a lumpectomy to remove my 2.2 cm tumor, but after the first surgery, the surgeon discovered two ducts had cancer cells in them (ductal carcinoma in situ), so she did a re-excision (wider lumpectomy) and also found a .6 tumor, so at that point a chose a mastectomy.

    Discuss your concerns with your surgeon, but from everything I've read, a lumpectomy + radiation yields the same results as a mastectomy.

    Best wishes to you, Sue 

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  • mimi1030
    mimi1030 Member Posts: 700
    edited July 2008

    My mom had a mastectomy back in 2004, she was Stage 1, Grade 1 4mm IDC (yes it was Grade 1 which is rare for Her2 + tumors, but it was rechecked and it was Grade1) Her2+++, she also did 4 rounds A/C.  ER/PR - no nodes involved.  Unfortunately mom had a reoccurance 3 years later, in Sept 07...she is now stage 4.  Be sure to get Herceptin as it wasn't available to early stagers in 2004, that could potentially have been the difference.

    Hugs

    Michelle

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  • Chelee
    Chelee Member Posts: 513
    edited July 2008

    Angie,  That is a decision we all had to make and it is a very personal one.  There is no right answer.  For me personally...my surgeon kept saying lumpectomy.  But in my mind...I had a 3.5 cm tumor and I thought after a lumpectomy my one breast would look disfigured with such a big tumor.  Plus they need to get WIDE margins to be on the safe side and I had read too many posts where women with lumpectomies had to have more surgeries to get clean margins.  I hated the thought of having to have more then one surgery...plus I just wanted "it" out of me!  I was terrified at that time. 

    My surgeon told me it was my decision.  The funny thing is I called him and told him I made up my mind and without a doubt I want a mastectomy.  He turned on a dime and said he totally agreed with me and that I made the BEST decision.  So I had the mastectomy and got to move on to chemo and soon as possible.  With an aggressive cancer I didn't want any extra delays.  (But this has to be your decisions.)  Talk to your surgeon, and go with your gut.  I know I am very happy with my decision...for me peronally it was the right way to go.   

    You are right there is a higher rate of recurrance for us so I wanted to treat my cancer as aggressive as possible so that I knew I did everything possible to prevent it from coming back.  But please don't get caught up in their statistics they throw at you.  They were all doom and gloom with me and telling me what my stats were with my diagnoises.   Those are all OLD stats.  They don't account for the use of herceptin or other drugs we now get for her2 cancer.  There are lots of women doing GREAT.  So just ignore the stats...I sure wish I had.  Herceptin alone has really changed things.  But bottom line I believe with this Her2 type cancer...to be as aggressive as possible for peace of mind.   Your already ahead of the game by asking GREAT questions.  :)

     Chelee

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  • angie27
    angie27 Member Posts: 863
    edited July 2008

    From one Angie to another welcome aboard:

    I am also HER2+, I just finished 4 AC treatments, and I am presently doing Taxol/Herceptin for 12 weeks, It is my understanding that the Herceptin is the one that targets this type of cancer.  I hope you find all of  the answer and support you need here, It has being so good for me to have this extra family of support.

    I wish you the best

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  • lisettemac
    lisettemac Member Posts: 213
    edited July 2008
    Hi Angie:

    I am Her2/neu+ and also had lumpectomy.  My tumor was 1.1 cm.  I asked the surgeon several times if I should be thinking mastectomy and she told me that it wouldn't be a "wrong" choice, but that there was no need -- essentially, with my stats she felt that the survival rate for lumpectomy + radiation was identical to mastectomy.  So, I opted for the lumpectomy and radiation.
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  • lisa39
    lisa39 Member Posts: 255
    edited July 2008

    I opted for a lumpectomy too.  My tumor was 1.5 cm.  I have just completed 4x AC and 4x Taxol and will begin 21 rads in early August.  I will also continue taking Herceptin until April '09.  When I found out I was HER 2 +, I was pretty scared  - having read all the stuff about these kinds of tumors being more aggressive and more likely to recur.  But like the others, knowing that Herceptin now exists has made me feel much more positive about beating my cancer.  You will do fine.

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  • CosminM
    CosminM Member Posts: 1
    edited July 2008

    Hi ,my mom was diagnosed 2 months ago with invasive ductal carcinoma.She had a masectomy with 10 axilary nodes removed that were negative.The size of the tumor was between 2 -2,2 cm.The doctors staged it as Stage 2a Grade 2.My biggest concern is the hormones tests because her results were: ER- inside the tumor but + on the outside....same for PR hormone negative inside the tumor positive outside...WHAT DOES THAT MEAN?!!!!Another problem that concernes me is my mom's her2 result wich was her2++(slightly positive)..is she her2 positive or not?..Does she has to take the FISH test to find out???..Please help me ...I'm from Romania and my mom is 54 years old.

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  • BMac
    BMac Member Posts: 650
    edited July 2008

    Hi Angie I had a bilat mast but for me it was a no brainer.  I am BRCA1 and had ovarian cancer 5 1/2 years ago so I knew even before the surgeon mentioned it that this would be the way to go.  I have not regrets and, although I thought I would be devastated at losing my breasts, I'm okay with it.

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  • boxill221
    boxill221 Member Posts: 3
    edited August 2008
    Hi Mary Jo, just found this fabulous site. I can exhale everytime I read about survivor anniversaries, congrats on yours. This Her2+ thing freaks me out to the max!!! I can't stop worrying about that stupid little word Her2+, why couldn't it just be negative? Why couldn't I just get a simple breast cancer if I was to get one? I know all this sounds ridiculous, but I am so lost tonight, so consumed with fear and anxiety and my precious husband tries but can never say the right thing, really nobody can. I was diagnosed on 7/17/08 with IDC, er+, her2+, 1cm, stage one, node negative, so all the great docs applaud me for having early breast cancer and say I'm lucky, but nothing about this feels lucky to me. Anyway, just having a really bad night, tonight is my one week postop date for my double mastectomy, and looking at myself in the mirror is more traumatic than I ever thought it would be. On top of this, I will be starting chemo next week and I am so so so scared of that, just typing it brings me to tears. Thanks for your time and I pray that I will be typing an anniversary date one day. God bless, Jennifer
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  • jdpeaches
    jdpeaches Member Posts: 24
    edited August 2008

    jennifer, I'm glad you found this sight, I'm usually on the thread of ladies that are starting chemo in August but jumped in here to find out some more about HER2+.  I am five weeks post right mast. HER2+, having port placement tomorrow morning and starting chemo on the 19th.  I know the fear and sadness you are feeling and it's OK to be upset.  We are here to help you whenever you need us.  Have you started reconstruction?  I can tell you that one week out looks he worst.  I promise it does start looking better in the weeks to come.  You are a beautiful woman and God will help you through this and show you so many beautiful things about yourself.  I will keep you in my prayers.  You and I are starting chemo at the same time so we should keep up with eachother.  Jump on to Starting Chemo in Aug 08, I'll look for you there. We'll beat this thing together.

    In Him, Peaches

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  • lafera12
    lafera12 Member Posts: 71
    edited August 2008

    Good morning to fellow  HER2 girls,

    I just finished my chemo woth Taxol and Herceptin with no problems.  The web-site in good and nformative...My onc. recommended a mast. (which is scheduled for Sept. 10th) because he saidwith a lumpectomy the cancer can come back, I trust him completely and doing what I have to do.After surgery it's radiation then back on Herceptin for a year every 3 weeks....it's a long stretch for us all.

    Angie

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  • babssasser
    babssasser Member Posts: 1
    edited October 2008

    Hello, I have ER+PR+, Her2/neu as of May 2008.  My tumor was 1.1 cm and no nodes were involved. Have had two surgeries, Lumpectomies, to get clear margins.  I had mammosite radiation for 5 days twice a day.  My doctor failed to mention the Her2/neu information my check up and final pathology report so I just found out about that added diagnosis.  I have been seeing a Naturopath for my general health and doing what we all do...taking very good care of my body and trying desperately to stay positive.  I just had an appointment with an Oncologist and I started taking the Tamoxifen that I had been very reluctant to take before.  So 1 week into Tamoxifen and I have been scheduled for a Pet Scan this Friday.  I am not sure if Doctors hate to do the bad news or why they eliminate such important information but I am very curious exactly what the Her/2neu means long term.  I am taking some herbal supplements that work in conjunction with the Tamoxifen but not sure what we are really dealing with.  Would like to follow up with your progress.  I am a healthy grandmother with no other complaints physically so lets beat this nasty thing.  Bless you.

    Barbara

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  • Sassa
    Sassa Member Posts: 1,588
    edited October 2008

    It means that you are probably eligible to take herceptin, a miracle drug for us HER2+ ladies. 

    For those of us that are stage 1 or 2, it cuts the chance of recurrence by 50%.

    I would check with your oncologist to see why the drug was not offered to you.

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited October 2008

    Barbara: I'm with Sassa - you need to find out why Herceptin hasn't been discussed. I started it with Taxol/Carboplatin this spring and now get it every three weeks for one year. Herceptin is standard protocol for Her2+ - find out.

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  • kimmberly
    kimmberly Member Posts: 1
    edited October 2008

    my mom was recently diagnosed in Aug 2008, she is stage 2, 1.1cm 1 node microscopic  cancer cells, er and her2 positive.   She is scheduled for another surgery to remove more lymph nodes.  what does this mean and does she have a good chance of survival.  I am ashamed because i do not know much about breast cancer but i am learning.   does anyone have any advise to share with me. Is this an aggressive type of cancer.   

    How can i really help her.  anyone who can share some thoughts would be greatly appreciated.  Just looking for some information and guidance.  Thanks so much.    

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