ER-/PR-/HER2/neu+++ ONLY

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Mausie
Mausie Member Posts: 49
edited February 2015 in HER2+ (Positive) Breast Cancer

I would like to know those persons which are ER-NEGATIVE, PR-NEGATIVE, but HER2 strongly positive.

History, treatment stories, recurrences?

Because ER/PR negative is so very different from ER+ - I think we should have our own forum.

Thanks for participating. Wishing you well.


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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited November 2014

    Hi mausie - In the Her2+ forum, there is a fairly active thread called ER- Pr- Her2+ Roll Call. Check it out!

    I was dx in January 2008 - almost 7 years ago. Still doing well. I had 6 Taxol/Carboplatin/Herceptin treatments then finished up the year of Herceptin. I've had no treatment since then.

    Wishing you all the best!

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  • suzanneleempoels
    suzanneleempoels Member Posts: 4
    edited November 2014

    * March 2012: 1st breast cancer diagnosis:

    characteristics: pT2pN0 (i+) false positive lymphe node test, ER-, PR-, HER2+++, Fish+, Ki67: 37%

    Lumpectomy: March 2012

    Chemo: started April 2012: 3 x taxotere and herceptine (SOLD study) followed by 3 x FEC, followed by 15 x herceptine (until the end of May 2013)

    Radiation (25 times) and brachytherapy (September - October 2012)

    * Augustus 2013: 1 Local recurrence and 1 lung metastasis

    characteristics: pT0 ER-, PR-, HER2+++, Ki67: 80%

    Chemo: 17 x taxol & carboplatinum (September 2013 - February 2014)

    herceptine: every 3 weeks (Pertuzumab was not yet available in Belgium at that moment)

    lobectomy (March 2014) and mastectomy (April 2014)

    Complete response to chemo, 100% remission, still on herceptine now and still NED

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited November 2014
    Originally diagnosed 2005, stage 2 ER/pr-, her2 +++
    Treatment: Ac, taxol / herceptin

    Liver mets, 2010. Still ER/ pr-, her2+++
    Taxotere/ herceptin

    Ned since feb, 2011
    Continue on herceptin and perjeta

    Laurie
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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Thanks to all - to Suzanne and to Laurie - how did they determine the metastases? Did you have symptoms? What I can't figure out is why some get mets and others not. I guess nobody knows that? Seems like you both had wonderful treatment.

    I haven't had recurrence of the ER- tumor which was first diagnosed in 2006, but I had another tumor appear which was ER+. My doctor said nobody knows whether this is the same tumor and "changed spots" or whether it is a new tumor - presuming the latter.

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Thanks Sue - I will check that out

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  • suzanneleempoels
    suzanneleempoels Member Posts: 4
    edited November 2014

    Hi Maussie, I don't have any reliable cancer markers in my blood, but my oncologist was alarmed by the rising crp-values in my blood. He advanced my mammo (planned in November 2013). The mammo showed a local recurrence (4 mm). The following scans revealed a 2,5 cm tumor in my right lung. I had a corebiopsy to determine the characteristics of the tumor in my breast and a bronchus biopsy to determine wether I had breast cancer mets in my lung or lung cancer. This tissue was also used to determine the characteristics of the mets.

    I didn't have any symptoms.

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited November 2014
    I had pain that we thought was a gallbladder attack, but the ct scan found the 2 liver mets.
    What is really interesting is that I was on no treatment for 4 years and my very aggressive cancer didn't grow. I had a scan in may of 2009 that was clear. Something triggered the cells to start growing and by July, 2010, I had an 11 cm liver tumor.

    Hopefully, someday they will be abe to figure out what triggers this and why certain people get mets.

    Laurie

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  • Bernie440
    Bernie440 Member Posts: 24
    edited November 2014

    Hi Mausie:

    I was diagnosed this past August with ER- PR- HER2+++ medullary IDC. 1.6 cm, stage 1, grade 3. I had a lumpectomy on 8/20. I started the ATTEMPT clinical trial on 10/16, which consists of Kadcycla infusion every 3 weeks for 1 year. I will be getting radiation after the 1st of the year.

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  • lkc
    lkc Member Posts: 1,203
    edited November 2014

    Hi Mausie,

    Stage IIIC dxed in may 2005. No recurrence .Blessed and grateful everyday.

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Hi Suzanne

    Wow, you are really lucky to have such a good oncologist. That is scary, not to have any symptoms at all, and come up with the lung mets. I wish you well in the future. I think this ER-PR-diagnosis is a bugger to predict how it will react. I have been NED since '06 concerning that diagnosis, but I had another tumor in the same breast 1 cm, ER & PR+, dxd in Sept 2013. Now on Femara. So good luck to you! Thanks for replying.

    Mausie

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Hi Bernie

    I had to look up what IDC medullary cancer was - I didn't know. So I found out that this is a rather exotic type of cancer, and I quote from this very same breastcancer.org site that "Medullary carcinoma cells are usually high-grade in their appearance and low-grade in their behavior." It sounds to me like that is a good thing, isn't it? Well no matter, I wish you well. And I must admit, you are brave to enter into a clinical trial. So good luck! (Edited for grammar)

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Oh Laurie,

    I am so very sorry - that is terrible. It is amazing that you went so long without symptoms, and then wham, and great big metastasis. Again, I am so sorry, and wish you well. Yes, I wish they could figure it out. I guess I was trying to at least become more familiar with the symptoms, because I don't know what to look for, and I get so tired of living in fear, imagining every little pain is a metastasis. I am such a coward. So good luck to you. How are you doing now?

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Hi IKC!

    Wow, yes, you are truly blessed. Since 2005 no recurrence and you were IIIC - that is truly a miracle. Can you tell us all what treatment you had? I am so happy for you. I hope we all are as blessed as you! I am jealous (not really) - just glad for you. That's great. Good luck in the future as well.

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  • Mausie
    Mausie Member Posts: 49
    edited November 2014

    Hi Sue,

    I have the same dx as you, except that I got a recurrence that was ER/PR+. My first tumor in '06 was exactly the same stage and path dx as yours. I am so glad you are doing well. Maybe there is hope and it won't come back. I don't know how to figure out my staging now that I have had a recurrence, but I was stage 11a just like yours, and both of my tumors were Grade 3. So good luck in the future! Good to hear someone else with the exact same dx has been doing well, thanks!

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  • lkc
    lkc Member Posts: 1,203
    edited December 2014

    Mausie, I did DD AC then T with Herceptin. Did Radiation x 35.

    Had BMX. Removed left non affected breast prophylactively and found out it was loaded with atypia and hyperplasia. Never regretted my decision.

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  • lovecat3
    lovecat3 Member Posts: 53
    edited December 2014

    hi diagnosed 5/2010 IBC stage 3 er/pr-

    Herceptin + taxotere / carboplatin 6 rounds Herceptin every 3 weeks for 1 year

    5/2012 met to spine ( now stage IV ) Cyberknife then 4 rounds gemzar taxol Herceptin still on Herceptin infusion w xgeva injection every 3rd Herceptin

    Had stacked DIEP flap with lymphnode transfer 9/25/14

    Plan is to continue Herceptin until it stops working also have an ECHO every 3 months



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  • jfrone
    jfrone Member Posts: 11
    edited January 2015

    I was ER-/PR-/HER2+++. I was diagnosed in April 2006 at the age of 32 with stage 2B cancer in my right breast. After a mastectomy, chemo, and Herceptin, I never had a recurrence, and will be celebrating 9 years cancer-free very soon. In addition, my mother was also HER2+++. She was diagnosed in 1992 long before Herceptin came on the market. She had a mastectomy and chemo, but the doctors were not optimistic about her prognosis. I am so proud to report that my mom will be celebrating 23 years of being cancer free this fall!!

    There is hope and life ---- LONG LIFE ---- after HER2+++!

    I am sending positive thoughts your way!


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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited January 2015

    Hi Jfrone,

    Thank you so much for your comments. This is very encouraging.

    I have just found out a couple of days ago that in addition to ER-/PR- I am HER2+++. I will be seeing an oncologist this week, as well as a plastic surgeon and will have mastectomy probably next week. I am very anxious, often feel depressed and overall terrified. Reading your post gives me some hope.

    BB

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  • MicheTheVanquisher
    MicheTheVanquisher Member Posts: 105
    edited January 2015

    BB--I had a similar diagnoses to yours, first Stage 0 DCIS then minimally invasive in 2012. I opted for a mastectomy and no drugs. My MO wasn't concerned about the HER2 positive and didn't recommend Herceptin and that was the standard of care in 2012 if there was only a teeny tiny tumor. Not to scare you more but I was not informed enough. I hope I don't but 14 months later I moved and got a new oncologist and she was very concerned, plus, though I was sentinel node negative I had an enlarged lymph node and she wanted that biopsied and then scans including brain. Sure enough I had liver mets. Now I've gone through chemo and am on Herceptin and Perjeta and doing very well. I only wished the standard of care was Herceptin if HER2.

    A year ago things really changed. This article explains it:

    http://www.ascopost.com/issues/january-15,-2014/her2-positive-breast-cancer-patients-with-small-tumors-benefit-from-low-toxicity-regimen.aspx

    The good thing about HER2 positive is that there is a lot of research being done on vaccines and other non-toxic treatments. And Herceptin and now Perjeta seem to work very well. Plus there are other drugs. The bad thing is it's aggressive. Yes, it's a horrible thing to have happen and a club you don't want to join but there is a lot of hope and the people here are great.

    Try to do things you love to do, watch comedians or do laughter yoga or anything to make you smile or laugh if only for a few seconds. Get a second opinion if you feel like it, take care of yourself, yes it sucks but you are not alone and there are a lot of really smart people pulling for you,

    Miche

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited January 2015

    Hi Miche,

    Thank you for your post and for more info. It does sound scary, but it's better to know as much as possible and not be unpleasantly surprised again, in the future. I'm sorry to hear that they didn't provide you with a more aggressive treatment back then. So much in our lives depends on timing.

    I haven't seen my oncologist yet, but my BS took the liberty to talk to him already and he told me I was going to get a year of chemo and it was going to include Herceptin. It looks to me that they will take a very aggressive approach. I'm not looking forward to it, I'm very anxious about it all. At times I don't think it has all sunk in yet, it seems like a bad dream from which I cannot wake up. A little surreal.

    Thank you again.

    BB

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited January 2015

    I fit the bill. Coming up on 3 years since diagnosis and doing well overall and NED - just had clean markers. Lymphedema, hating my surgery results, recurrence fears, and weight gain from the style cramp lymphedema has put on my life are my biggest issues.

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited January 2015

    BBwithBC45: I had your exact diagnosis--first high-grade DCIS (in 3 quadrants), had a mastectomy (with tissue expander/implant), then in tissue analysis they found tiny HER2+++ tumors (stage 1b; node-neg). By now you have probably seen your onc to discuss treatment. Based on the current protocols and all indications from intensive research, you need three months of Taxol, and a year of Herceptin (the regimen known as TH). Herceptin is not chemo--it's a miracle targeted therapy drug for HER2. Or you can look into the ATEMPT clinical trial if there is a hospital offering it near you. In the trial, you are randomly assigned to either the TH regimen, or a year of treatment with a drug called TDM1 (or Kadcycla). It's not a traditional chemo but a targeted therapy, combining Herceptin with a chemo element. Mild side effects, no hair loss. I was on the trial, finished treatment in Sept. 2014.

    The fear and anxiety are horrible when you are first diagnosed and figuring out how to go forward. For me the fear was a greater source of anguish than the surgery. I want to promise you that a day comes when you feel strong, when it's BEHIND you, and you can stop thinking about stupid cancer all the time. The way I looked at treatment was--I have a job to do, and I need to get this done. This helped me organize my feelings. Best of luck to you.

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  • Mardea15
    Mardea15 Member Posts: 65
    edited February 2015

    Hi BBwith BC45, Hugs to you & I'm so sorry you are having to go through this. I, too, was just recently diagnosed 1/15/15 after a routine screening mammogram - a complete shock to me as I have not even had a cold or the flu for the last 3+ years. i am also ER/PR-, HR +++. I will be starting my first day of chemo tomorrow, 2/3/15, with Herceptin, Perjeta, carboplatin, Taxotere. I'm very nervous about chemo but I know this is the best current treatment for me. Everything has happened very fast but this is very agressive tumor with my Ki-67 @ 60%. Every time I get a new size on the tumor it seems to be bigger! After 6 cycles of chemo, the plan is for surgery, then radiation, & Herceptin to complete a year. I can understand feeling it's like a bad dream & unable to wake up out of it. I had that feeling until I met with my MO for the first time on Fri 1/30. She was the first one to actually be able to feel the tumor & now I can to. She said this aggressive tumor probably took less than one year to grow to this point, hence the urgency to get chemo started. My visit wth her made me feel this is really happening! I know I will get through this, but like you I have had a lot of fear & anxiety - Ativan definitely helps me sleep at night. However, I know this tumor is very aggressive & needs an aggressive treatment approach to get rid of it. As difficult as it is I know you &. I can get through this.

    I will be thinking about you & sending good thoughts your way.

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  • DaisyQ
    DaisyQ Member Posts: 123
    edited February 2015

    Ladies,

    Every time I see a new member with a breast cancer DX it makes me sad and takes me back. So sorry this is becoming part of your life story too..

    I am 5 1/2 months our from my diagnosis. ER-/PR-/HER2+++, Grade 3. My first reaction was to get the tumor out as soon as possible. I met with my BS and MO and things went fast. I agreed to neoadjuvant TCHP chemo. 6 cycles every 3 weeks. Like you, things moved very quickly and I am grateful that they did! Within 5 days I had my port installed and was receiving my first round of chemo. There is a blessing in not having too much time to think, lose sleep, obsess.. Put on the gloves and get in the ring!

    I am not going to sugar-coat it. Chemo was hard, the hardest thing I have ever done. Take care of yourself, ask for help then accept it, put yourself first. You can do it. I did.

    Earlier this week, I learned that I achieved pCR (pathologic complete response) to the chemo treatment. After my BMX there was no tumor, and after extensive testing no evidence of cancer left in my breast tissue. A relief. Made every day of the past 5 months worth it.

    Hang in there. Reach out for support. I hope this forum will provide you with the support, wisdom, and love you need to help you along--it did for me.

    Let me know if you have questions.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited February 2015

    Dear Ladies,

    I came home from hospital the day before yesterday and trying to catch up on my reading.

    I'm in not good spirits, I'm sorry. Waiting for pathology results, feeling a lot of nausea. This morning I also discovered that one of my pupils is larger than the other and this threw me in for a loop. They think it's a side effect of Norco. If I'm having such side effects from a painkiller, how am I ever going to tolerate chemo?

    I'm sitting here and now obsessing about my eyes and vision.

    BB

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  • Mardea15
    Mardea15 Member Posts: 65
    edited February 2015

    DaisyQ, so glad to hear your result of pCR (pathologic complete response). I agree that will make it worth going through chemo to achieve. I am only on day #4 post chemo #1 with 5 more to go over next 18 weeks. Seems like a long time from here on out. I have had a lot of side effects from day of receiving chemo still through today. I am hoping my body will soon get adjusted & I'll have a reprieve for a few days before round 2 starts.

    BTW, Are you going to need radiation as well? I think that's the plan for me since there's a lymph node involved, but that's several months out yet.

    Hope all continues to go well for you.

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