HER2 confused

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fidget
fidget Member Posts: 135
edited September 2015 in Diagnosed and Waiting for Test Results

Hi all,

I was just diagnosed Aug. 26 with IDC in the right breast. I had a CT scan done Friday and a MRI will take place this afternoon. MY surgeon called yesterday and told me that I am ER-/PR-, HER2+. While he said it is aggressive, he felt the one positive would help because it can be targeted. He said triple negative is the hardest to treat. I guess I'm wondering how something aggressive is easier to treat. Do the ER-/PR- not come into play as much now? Of course I did the wrong thing and Dr. Googled and kept reading that prognosis in my case is not good. Thankfully you ladies are here and I feel better after reading success stories. I realize everyone is different, but all this is so new and confusing. The CT came back okay except for a tiny spot on the adrenal that he said is not really worrisome. After my MRI and insurance clearance for Oncology, they'll set me up with a MO. Surgeon says because of HER+ he feels chemo will come first. I've been reading these boards since the day I found the lump, but find myself re-reading everything all over again when I find that the subject actually pertains to me. Everyday seems like something new. So thank you brave ladies for being the voices of reason that I and so many others desperately need right now.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi fidget, and welcome. We're sorry you have to be here, but really glad you found us!

    While you wait for the ever-helpful advice and experiences from the other members here, you may want to check out the main Breastcancer.org site's Your Diagnosis section, which explains what Hormone Receptor Status and HER2 Status means for you. Also, the IDC section will help walk you through what your diagnosis means and explain the treatment you may be looking at.

    Also, the IDC forum here and the HER2+ (Positive) forum may be helpful places for you to post.

    We hope this helps! Please keep us posted on what you find out. We're thinking of you!

    --The Mods

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  • MelanieBC
    MelanieBC Member Posts: 74
    edited September 2015

    I have no words of wisdom but I wanted to give you some virtual hugs.

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  • fidget
    fidget Member Posts: 135
    edited September 2015

    Thank you Mods for the information and thank you MelanieBC for the kind response. I wish this could all just be a bad dream.

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  • MelanieBC
    MelanieBC Member Posts: 74
    edited September 2015

    I agree fidget. While it isn't me personally with BC, my mom has it and was just diagnosed. There are so many things that come along with it and one day you can be up and the next day down. It sucks.

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited September 2015

    fidget, Herceptin and Perjeta are available to target HER2+ breast cancer, and they work very well. They are usually given before surgery (neoadjuvantly). I had them, along with chemo, and after one round I could feel the tumor I'd originally found shrinking. By the time I had surgery, there was no evidence of cancer in my breast or my one lymph node.

    Wishing you all the best. I'm about one year out from where you are now, and I'm doing great. :)

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  • fidget
    fidget Member Posts: 135
    edited September 2015

    That's wonderful news CassieCat! Glad you are doing so well. Gives me hope. Had my MRI today and was a little more freaked out than I thought I would be. Also just found out that I can't get in to see an Oncologist until Sept 14. My surgeon isn't really happy with that. I just want to get started on a plan.

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  • debiann
    debiann Member Posts: 1,200
    edited September 2015

    Sorry you are here fidget.

    ER +  cancers are fuled by estrogen therefore anti-hormone therapy is offered (tamoxifen or AI's). Sometimes ER + only  patients can skip chemo, based on size, grade, oncoscore. Since you are Er- you will not get this therapy.

    HER2+ is considered more aggressive, but the newer targeted therapies are very successful. The latest protocol includes Perjeta, and it is usually given neoadjunctively ( before surgery).

    Triple negatives have fewer options for treatment, surgery and chemo.

    Regardless of cancer type or chemo, if you have a lumpectomy, radiation may also be recommened to kill any stray cancer cells in the breast region. Sometimes, by having a mastectomy you can avoid radiation, but not always.

    Good luck to you.

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  • mye
    mye Member Posts: 130
    edited September 2015

    Hi Fidget,
    If you are not ok with waiting so long to see onc, can you see if a different onc is available to see you sooner? You will feel so much better when a plan is in place like you said. I too am Her2+, hormone negative. I also did neoadjuvant chemo plus Herceptin and Perjeta. My midway thru chemo MRI could not pick up on the 2 cm+ IDC nor the DCIS. Surgery will tell if there is still cancer left that was not detected, but still, at least I know it shrank.
    Hopefully you will be on a treatment plan soon.
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  • fidget
    fidget Member Posts: 135
    edited September 2015

    Thank you so much everyone. You are really helping to calm my nerves. Unfortunately, I live in a not so large town, but the guy I'm seeing is suppose to be the best. My surgeon is going to call him to see if I can get in sooner. I'm trying to tell myself that I'm not the only one in town who needs him. Now if only I would listen to myself!

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited September 2015

    Good luck to you fidget. I hope you can get in sooner, just for the peace of mind that having a plan in place gives you. The not knowing is very difficult.

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  • loriekg
    loriekg Member Posts: 263
    edited September 2015

    Hi fidget! I'm chiming in to offer hope too! Like Cassie, after one treatment of chemo and the targeted treatment (Herceptin and Perjeta) I could tell the tumor had shrunk significantly. After the second dose they couldn't feel it. I continued on for six treatments...then had surgery. My pathology report showed no evidence of cancer.

    I hope you can get in sooner also--but be prepared, I'd imagine things will move very fast after you see the MO. One week after my appointment, I was in the chemo chair. Can you go ahead and schedule your sentinal node biopsy and port placement? I had that scheduled before I got in with the MO. We're here for you!!

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  • MaggieMae123
    MaggieMae123 Member Posts: 38
    edited September 2015

    Hi fidget, I have a bit of good news. I am also HER positive and my surgeon said that in todays world it is actually not a bad thing to have because the Herceptin works so well. I just had a lumpectomy on the 19th and start chemo in Oct. I wish you the very best and thank God that there are new medicines to treat us:) Take care and best of luck to you!

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  • fidget
    fidget Member Posts: 135
    edited September 2015

    You all are really lifting my spirits! I can't thank you enough for sharing your stories. I hope one day I'll be able to do the same. I did get a bit of good news today. My surgeon was able to get me an earlier appointment with the MO. I'll meet him on the 8th instead of the 14th. Of course in my crazy mind, I keep thinking maybe my MRI came back terrible yesterday and that's why he agreed to see me. Wow, one minute I'm half way fine, then the next I'm in a panic. I'll just keep reading your stories to soothe my soul. Hugs to all!

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited September 2015

    fidget, great to hear you are getting seen sooner. Don't read into it; just be glad to be 6 days closer to beating this thing. I started chemo 9 days after my diagnosis. Once the doctors all confer, the plan may move quickly.

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