How aggressive is HER2+ (Positive)

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Hiphiphoray
Hiphiphoray Member Posts: 18

hi

I know this may sound like a silly question but I'll ask it as I keep thinking about it.

I know with HER2+ Breast cancer there is a higher chance of a local recurrence, is there also a higher chance of mets?


If someone could answer my question that would be great.

Thank you



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Comments

  • SSInUK
    SSInUK Member Posts: 245
    edited October 2016

    Hi. In theory Her2+ is more aggressive in every way BUT - it depends on so many things, including the stage and size and grade of disease, whether you are also ER+, how strongly Her2+ you are. And more significant - some of the very best and most effective treatments there are for BC are specifically Her2+ targeted. Not only has herceptin largely reduced the risk to the same as non Her2+ disease but if you can add in Perjeta you have an extremely effective therapy. I know a lady with mets at diagnosis - her response to herceptin was so good she has been NED for 10 years. The short answer is yes in theory, but not in practice given the treatment.

  • Hiphiphoray
    Hiphiphoray Member Posts: 18
    edited October 2016

    SSinUK. Thank you for your answer. I was hoping for a different answer, but not surprised. Fingers crossed

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Hiphiphoray,

    I found it very helpful to fill in the signature on this forum to learn more about my personal situation.

    I do not think your question is stupid at all. I went to my mammograms regularly every 2 years, so obviously my kind of cancer had grown 4,5 cm in 2 years. To me that is truly scary but think this is very personal and depending on a lot of different factors.

    I think the Ki65 score gives an indication how fast the cells are dividing. Mine was 30% and that is considered high.

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    Yes, HER2+ is considered more aggressive and is generally faster growing, but as mentioned, there are new treatments that are working well. In an attempt to turn a negative into a positive, faster growing tumors respond better to chemo.

    Also, I have often wondered about the ones with small, slowing growing, grade one tumors who go onto mets. How does that happen. I've read that slower growing tumors have been in the body a long time before dx, thus they have had more time to spread. Fast growing tumors = less time/opportunity for cells to spread.

    So while there is no "good" cancer, I've tried to make peace with my dx and accept that its aggressive but hopefully treatable.

  • Sunnyvolvo
    Sunnyvolvo Member Posts: 4
    edited November 2016

    Hi SSInUK,

    It is soooo encouraging to hear someone with HER2+ can has 10 years of NED. Is she still taking Herceptin + Perjeta?

  • Kattis894
    Kattis894 Member Posts: 218
    edited November 2016

    Yes, that is my take on the hole thing as well Debiann. The more positive and aggressive the more options for treatment pretty much. This is so very comforting.

    My nurse tells me, due to the new medications for HER2+ pretty much takes this group to the statistics for survival to the HER2-. which are very good. Also the HER2+ patients are the first group that have a possibility for total cure. They are apparently researching a lot at the moment for not "overmedicating" this group since most patients respond very well to Herceptin and now also Perjeta. There are also other sets of medication in case this does not work so the options seems to be many. Research is also moving quickly. Luckily it also moves quickly in the triple negativ group that has less options at the moment but hopefully that will also change soon.

  • Hiphiphoray
    Hiphiphoray Member Posts: 18
    edited November 2016

    Hi

    SSinUK, I'm not getting Perjeta as I had surgery first so just Herceptin. Hopefully that's enough. Cancer sucks.


  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2016

    hip - there are a lot of us on BCO who were diagnosed and treated before Perjeta was approved, and we only had Herceptin added to our chemo regimens. We are still here and doing fine - I am six years out from diagnosis with node positive Her2+.

  • Hiphiphoray
    Hiphiphoray Member Posts: 18
    edited November 2016

    I do know that. I just hate the uncertainty, but I think I just need to get used to it

  • Superstar3102
    Superstar3102 Member Posts: 16
    edited December 2016

    @hiphophoray I too was hoping for a different answer. By the way what is METS?

  • Hazel15
    Hazel15 Member Posts: 15
    edited December 2016

    hiphiphoray, what do you mean you had surgery first so you didn't have perjeta? I had surgery also a month ago and I'm starting chemo on dec 16th. mo wants to do perjeta, Abraxane and herceptin. Can you explain?

    Superstar, mets is metastasize ...through your body. I don't know what all the abbreviations are...there is a guide on the main pag

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2016

    hazel - Perjeta is currently only FDA approved for neoadjuvent use, unless your oncologist can appeal to your insurance company, or you have an advanced situation - close margins, lots of nodes, etc. Some MOs have been able to get Perjeta approved for adjuvant use with less, but your insurance has an out due to the current FDA status.

  • Hazel15
    Hazel15 Member Posts: 15
    edited December 2016

    specialk, I had no idea....thanks I will email my mo....wow, didn't know that

  • Leslie2016
    Leslie2016 Member Posts: 316
    edited December 2016

    Ok...so if I get "just" Herceptin now, if, you know, 30 years from now (don't wanna think about it sooner) they find more cancer, can I get herceptin with perjeta then? Or can I not get herceptin again since I am getting it this time?


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Yep, you can get Herceptin and/or Perjeta again. In fact, there's a Stage IV thread devoted to Herceptin and/or Perjeta. There's no lifetime limit like with AC chemo.

  • Leslie2016
    Leslie2016 Member Posts: 316
    edited December 2016

    Thanks Elaine. Is there a "plus" to me not getting Perjeta this time? Or should I has my MO why I'm not? I've been trying to read some of the studies, but not being a medical person, a lot of it is beyond me. It looks like originally a few years ago it was only approved for metastatic BC, but it looks like in the last 2-3 years they have done more studies showing it can help other HER2+ people too. I'm in Canada, so I haven't been able to find anything saying it's approved up here for non-matastatic cases, but that could be my lack of searching skills.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hmm, I'm not sure there's a "plus." From what I've heard, studies show that Perjeta helps early stage women who receive it neoadjuvantly to achieve PCR (pathological complete response). In other words, when Perjeta women get their surgery, there is no detectable active cancer left in their breast and/or nodes. In the US, this is considered to be a good thing because (generally speaking) women who get a PCR have better outcomes than women who do not. In Canada, the PCR studies haven't made as much of an impression. Canadian experts are more interested in knowing whether Perjeta reduces fatalities, not merely whether or not it helps women achieve PCR. Since Perjeta is relatively new, it may be awhile before we know that information.

  • Kimm992
    Kimm992 Member Posts: 135
    edited January 2017

    Leslie - I am in Ontario as well and I believe that Perjeta is for people with tumors larger than 2cm.

    I didn't get it either since my largest tumor was 1.7cm so didn't quite make it.

    There are different schools of belief when it comes to PCR and Elaine is correct when she says the studies on PCR haven't made as big of an impression in Canada. There are some experts who believe that people who achieve PCR are people who would have had positive outcomes regardless.

    I had FEC x3 and then DH x3 and at the time of surgery had what they referred to as a "tiny spatter" of cancer cells remaining. They said it was an ALMOST complete response and were very happy with the results.

  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    Thanks Kim. I didn't think it was approved here yet for cases like mine, so that's fine. I'll be good with the D and Herceptin, then whatever drugs I take for the next 5-10 years. Was just curious to make sure I cover all the bases!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    I had both neo-adjuvant Herceptin & Perjeta along with Taxotere & Carboplatin. I did not have a pCR so after surgery I got more chemo - Adriamycin & Cytoxan. So I had a break from the Herceptin. Adriamycin also can cause heart problems so they don't give the two together. When I started Herceptin again, I was offered the opportunity to continue with the Perjeta, but I'd already lost 60lbs with extreme diarrhea so I looked like a skeleton, had extremely low blood work, and also acquired CIPN of both my feet & hands. From everything I read at the time, I decided to pass on continuing the Perjeta and just took the Herceptin alone for the rest of the year.

    If I had to guess, I'd say I was offered the continuing Perjeta a) because this was already a recurrence; b) because I didn't have a pCR; and c) because I was hormone negative so there were no other treatment options (except Rads, which I did have).

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    MinusTwo,

    I am getting my pathology report tomorrow afternoon but it helped reading your post. My tumor did not change in size during the neo.adjuvent treatment so I am very concerned and pretty sure I will not have a PCR. My radiation was cancelled today so I think I am expecting more chemo. I received Taxol so far but most people here have the same drugs as you instead, perhaps that would then be something I could suggest, or the other ones you received as well. I do like to read up a bit myself so thanks for your post. If they would offer me more Perjeta I would go for it, I did not loose a lot of weight. Anyway, nervous for tomorrow. I am hormon positive so they might try that instead of course as well.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Good luck Kattis.

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    Hi again ladys,

    I read somewhere on here that if you do not have a complete respons as tripple positive the prognosis looks worse for recurrences.

    So there was no Complete response for me...my tumor was 2,5 cm x 2 cm at removal, instead of the 6,5 cm x 4,5 cm so it has shrunk some but I am still concerned about this.

    I will start the radiation and have started Femara. My Ki65 went down from 35% to 6% so I guess that is good. Not sure what it means. My onc is on holiday so I still have to wait for the entire picture and explanation. If anyone here has some advice I would be so happy.

    Is it true that the prognosis looks worse and why?

    The nightmare continues....

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Kattis - I can't answer you exact question because I was ER/PR negative. But the HER2+ treatments are interesting. I had 6 rounds of neo-adjuvant TCHP without a pCR. I don't remember the dimensions after the TCHP. So after surgery - supposedly with clear margins - the MO scheduled me for 4 rounds of Adriamycin/Cytoxan. You can't take Adriamycin and Herceptin at the same time due to heart risks, so I started the Herceptin back up once the 2nd chemo was finished. And then rads. I have been NED for 3 years now.

    Being hormone positive, you're able to have anti-Hormone treatments. Hope everything works well for you.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited January 2017

    Kattis: please don't stress yourself out about not getting pCR. Many who are "triple positive" do not achieve pCR and ultimately do quite well with hormonal therapy etc. Research has shown that pCR occurs much more frequently in the ER/PR-HER2+ population. Your tumor has shrunk and that's good news . Please discuss with you doctor , wishing you all the best

  • willa216
    willa216 Member Posts: 165
    edited January 2017

    Hi Kattis:

    I'm triple pos. I don't know if I had a complete response to chemo or not because I had adjuvant therapy (there was a mistake in my initial pathology report so I didn't get to do neoadjuvant even though I would have qualified). I did, however, read a lot about the frequent lack of complete response to chemo for triple positive. I was upset and brought this up with my onc. She said not to worry because with hormonal therapy we will likely end up in a similar spot as those who had a complete response to chemo (generally the ER-/PR- group, as others have mentioned. ) I'm choosing to believe her so that I don't lose my mind. I wish you peace. Take care.



  • chocomousse
    chocomousse Member Posts: 157
    edited March 2017

    Yes, 40% of those with HER2+ BC develop brain mets.

  • NotHerToo
    NotHerToo Member Posts: 58
    edited March 2017

    chocomousse, I believe that statistic that you give is dated (and/or reflects those who do not undergo treatment) There is better news reflected in more recent research results of those treated with herceptin and chemo There is at least one, if not more women, on these boards who participated in that clinical trial with dramatically improved outcomes. I'm grateful to the brave women who paved the way for the rest of us. Check out the NEJM article:

    http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=article

  • mara51506
    mara51506 Member Posts: 5,088
    edited March 2017

    Part of the higher rates of brain mets for HER2 cancer is due to Herceptin, Perjeta and chemo being so effective keeping the body met free more often. For those who are worried about getting Herceptin only, that was effective for me. I don't have mets anywhere else but my brain. That just means Herceptin does not penetrate the brain. Outcomes for brain mets are also improving as well with IT herceptin as well. At the end of the day, I am glad to be HER2 positive as good targeted therapy gives good QOL and longer life.

  • Roses13
    Roses13 Member Posts: 3
    edited March 2017

    I am 75 years old. I have Her2 positive did anyone not do treatment

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