HER3

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olduser
olduser Member Posts: 24
edited January 2020 in HER2+ (Positive) Breast Cancer

Forgive me for posting this here. Please let me know if there is a more appropriate forum for my question.

My partner, Joyce, age 45, was just diagnosed with breast cancer. Most of it is DCIS, which is good, but there is also some infiltrating ductal carcinoma. (I hope I said that right.) The surgeon was very optimistic that she could get it all with a mastectomy and that she would probably need chemo after. She said based on the biopsy, MRI, PET-CT, etc. that Joyce was Stage IIB.The cancer is nowhere else in the body - just the right breast and a few of the adjoining lymph nodes.

But, yesterday, she went to a hematologist / oncologist to get some blood thinners to take before surgery (she's had two blood clots in the past two years) and he told her one of her biopsy samples came back with this HER3 thing. He started throwing statistics out that the HER3 means she only has a 30 percent survival rate. Needless to say she was scared out of her mind. She was alone at this meeting. She really thought she was only picking up a script for blood thinners. She has decided to go to another oncologist.

My question is what is HER3? The only information I can find on-line was written for doctors. How does HER3 affect her outcome? She is young, otherwise healthy, and the cancer hasn't spread outside the breast. I know we need to talk with another oncologist, but I really need to know what HER3 is.

Thank you,

Mary

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited September 2008

    I would say goodbye to that oncologist!!  HER2 is a protein,  It does make the cancer more aggressive, however there is a new drug out called herceptin that your partner will get for a year after chemo, and it has changed her2 cancer!  It has only really been our for our cancers "early stage" for a few years, so there are no statistics yet, and I havent recieved my herceptin yet, but it is truly a miracle drug for HER2.  If you go to herceptin.com, they have a video you can watch that helped me understand it better.  Tell your partner to hang in there, I have a few positive nodes too, and i have 2 rounds of chemo left before my surgery, and its definitely scary but very very doable.  Its not 1/2 as bad as I had convinced myself it would be!! 

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited September 2008

    Oh and I forgot to add, when my oncology nurse saw my biopsy report, she said oh your HER+ thats a good thing now, you can have herceptin!!

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  • olduser
    olduser Member Posts: 24
    edited September 2008

    Thanks for the encouragement. So is HER2 the same thing as HER 3?

     Mary

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  • BethNY
    BethNY Member Posts: 2,710
    edited September 2008

    There is no her3... it's called her2neu (short HER2).  Don't pay attention to any old stats about her2 positive breast cancer prior to herceptin.

    Usually people are her2+++ (3 means positive, so that may be where you are getting confused, but don't worry- it's all new and theres a lot of info)

    Herceptin will be given as part of her treatment regimen, and it is a miracle drug.

    We'll help you decipher through everything once you get a plan in place. I would not go back to the doc that told you about the 30% survival stats.

    Yes, only 20% of breast cancers are positive for overexpressing the her2neu protein, but with herceptin the future is very bright. 

    I just hit the four year mark and all is well...

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  • Liz08
    Liz08 Member Posts: 470
    edited September 2008
    It is definitely time to say good-bye to that oncologist, that information is NOT Correct.  By making those comments it sounds like this oncologist is not up to date on what it now means to be Her2+++.  The drug Herceptin has re-written history when it comes to being Her2+++ and most of the information on the web is outdated as far as being Her2+++.  Yes, being Her2+++ means the cancer is more aggressive but by no means an automatic death sentence, especially only being a stage II.  There is a website for those who are Her2+++ it's www.her2support.org.  The members there are all her2+++ and very knowledgable. It's a good place to visit for information.  Remember being Her2+++ means that your friend has another treatment choice which includes Herception (for 1year) in addition to her chemo.  Herception decreases recurrence by 50% in addition to what chemo already does.  Given those stats the survival rate sounds pretty good, huh.....
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  • olduser
    olduser Member Posts: 24
    edited September 2008

    Thank you so much. I literally have tears in my eyes reading your encouraging words. I'm going to have Joyce read this page as well when I get home later.

    Mary

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  • Liz08
    Liz08 Member Posts: 470
    edited September 2008

    Here's a thread and feedback from this forum on being Her2+++.

    http://community.breastcancer.org/forum/80/topic/706549?page=1#idx_20

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  • Ixia
    Ixia Member Posts: 15
    edited September 2008

    Hi Mary,

    Here is an article you may want to read, about HER3.

    http://www.cbcrp.org/research/PageGrant.asp?grant_id=3973 

    Ixia 

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  • dixie46
    dixie46 Member Posts: 19
    edited September 2008

    How does one know whether they are Her-1, 2, 3, or 4?

    All my path said was HER-2neu by Fish 2.4 ratio amplified.  I assummed I was Her-2++ since it was rated over a 2.

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  • Ixia
    Ixia Member Posts: 15
    edited September 2008

    Dixie46 - I don't know - Mary's partner was told by her doctor that HER3 showed up in her biopsy. 

    More info here: http://www.researchherpathways.com/researchherpath/search/index.m

    Ixia 

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  • olduser
    olduser Member Posts: 24
    edited September 2008

    Ixia - Thanks for the links. I have to admit some of it was a bit over my head, but it sounds very discouraging. I can't figure out of the articles are saying the herceptin won't work on HER3. 

    Mary 

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  • Ixia
    Ixia Member Posts: 15
    edited September 2008

    Mary - please don't get discouraged: Make sure you go with your partner to an oncologist you trust, sit down and get some real answers as soon as possible.

    I felt very scared last year when I got my diagnosis and prognosis - it was not very good. Now, a little more than a year later, I feel great and have no signs of disease. 

    The stage you and your partner are at now - still in shock and looking for answers - is so, so difficult. Once you get things sorted out and treatment under way you'll feel much better - even though treatment is tough.

    I wish both of you all the best as you work through all of this. Hugs 

    Ixia 

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  • Annaanne
    Annaanne Member Posts: 190
    edited September 2008

    Welcome Joyce:

    The gene or marker is called "Her2" , but it's written her+++, so that's kind of confusing.  If you look up on the Her2 Support website and here you'll find lots of info about Her Positive breast cancer (another name for the same.)  All these women here are right -- with herceptin and chemo, this aggressive kind of bc has a good prognosis, especially at stage 2.  I'm stage 3 Her positive and over three and half years past diagnosis, doing great.  Mary will do great, too.  And whoever gave you that gloomy and incorrect news is an uninformed jerk -- get rid of them!

    Annaanne 

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  • Liz08
    Liz08 Member Posts: 470
    edited September 2008

    Mary-

    I've been trying to understand the links that Ixia posted and they are very confusing but her3 is part of the sane "her" family as the her2.  The family consists of her1, her2, her3, and her4. I could not find anywhere that from a biopsy a specific test for ther her3 is ever done.  I know that the  her2neu is specifically tested to determine if the patient could benefit from Herceptin but have never heard of the her3 being tested except in a lab during studies/trials (not biopsies) as stated in Ixia's links and other links I googled.  Usually specific tests are performed to determine  treatment options such for estrogen, prgesterone, and her2neu since these factors determine which treatment would work best.  If your homonally positive then hormone therapy is an option if your negative than hormone therapy is not any option. If your her2neu positive then Heceptin is an option if your her2neu negative then it's not an option.   I'm hoping that your partner misunderstood and that her her2neu is 3+, which just means that her cancer is more aggressive but very doable and she's also only a stage 2 which means it was caught very early and NOT metastisized which is great. As I wrote in my earlier post, Herceptin has re-written history for those who are her+++ and this forum along with the her2support.org forum has many suvivors to prove it.

    Initially when diagnosed the information can be overwhelming and so confusing, it's another language.  In any case it's a very scary time.  I have heard of patients bringing a recording device to medical appts so they they can replay what the doctor said. I don't know if all doctor's allow that but that may be an option or always bring a friend or family member to the visit.  Please keep us posted and I hope that your partner gets in to see a doctor very soon so that all of this can be cleared up and understood.  Wishing you and your partner the very best.

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  • BethNY
    BethNY Member Posts: 2,710
    edited September 2008

    What one of the articles was saying, was that if you have her3 factor in yhour HER2 breast cancer, treating it with combination herceptin/tykerb may be more efficient than just herceptin...

    that was what I got from the last paragraph of one of the studies I googled...

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  • beth1118
    beth1118 Member Posts: 16
    edited June 2017

    YES THERE IS A HER3!!! I am HER3 positive. I am NOT HER2 positive. Yes, this is an old post, but I was diagnosed in 2009, and been through all kinds of chemo since then. Finally, after 7 years, I found out I am HER3 positive, and its treated with Taxol chemo, and Herceptin and Perjetta. After the cancer spread to my bones in my spine, ribs, pelvis and thigh, and my liver, 3 months on these meds, and only one tiny spot 1.1 cm in size is left. Now, still on the herceptin and perjetta, it should be gone. NOTHING else worked to get rid of my cancer that spread.

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  • beth1118
    beth1118 Member Posts: 16
    edited June 2017

    I am living proof that Herceptin, and perjetta worked to get rid of my cancer. I am HER3 positive, but not HER2 positive.

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  • positivenegative
    positivenegative Member Posts: 106
    edited June 2017

    you are correct Beth about there being both a her2 and her3. I'm an THP'er also and it was the only thing that worked for me too. Thanks for your knowledgeable post

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  • TriplePositiveP
    TriplePositiveP Member Posts: 20
    edited June 2017

    beth, what test identifies if a her3 receptoris positive?

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  • beth1118
    beth1118 Member Posts: 16
    edited August 2017

    I wish I knew. I have the HER 3+, but dont know much about it. I would like to find some materials on it, but havent had much time to search.

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  • livelong1
    livelong1 Member Posts: 2
    edited January 2020

    Hello Beth, How are you doing now? My niece was recently diagnosed with HER3 positive. I am having a hard time finding information regarding HER3+. Can you please tell me what drugs you started with and how long you did them? Please give me a history of your trek through surviving this with hurdles that she may avoid.

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  • livelong1
    livelong1 Member Posts: 2
    edited January 2020

    How is Joyce doing now?

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