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ER-, PR-, Her2+ Roll call

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  • catm
    catm Member Posts: 130
    edited April 2023
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    Thank you for sharing this. I am newly diagnosed (stage 1) and just found out today that I am ER neg, PR neg, and HER2 positive. It has been hard finding information on this receptor status. The surgeon's nurse told me today that it does decrease short term survival a bit, 10% - but that it changes the treatment protocol.

    Do you know much about this?

    Thank you!

  • henrietta405
    henrietta405 Member Posts: 44
    edited April 2023
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    We probably have a lot of differences, as I am stage 4 and have been since diagnosis. I like to think of HER2+ as a good thing (if you have to have cancer) as there is are very effective treatments for it. You might be put on Herceptin and Perjeta for awhile. These are targeted infusion drugs that really help kill those HER2+ cancer cells. I have been told that HER2+ is an aggressive cancer, but is also very treatable. I’m nearly 6 years in with hormone negative, HER2+ stage 4 cancer and I can still do a lot. I get Herceptin and Perjeta every three weeks

  • catm
    catm Member Posts: 130
    edited April 2023
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    Hi Henrietta,

    Thanks so much for your response. I am encouraged that you can still do a lot, 6 years in and at stage 4.

    Hope you continue on this good path.

  • moderators
    moderators Posts: 8,085
    edited April 2023
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    Welcome, catm! We're so sorry you find yourself here, but we're glad you've joined our community and hope it can be a source of support for you.

    We also want to mention that we have twice-weekly virtual meet-ups for our members about to start treatment, currently in treatment, or coming to the end of their active treatment. They're a great way to further connect with others with a similar diagnosis or treatment plan. You can find more info here: https://www.breastcancer.org/community/virtual-mee...

    The Mods

  • minustwo
    minustwo Member Posts: 13,128
    edited April 2023
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    catm - HER 2 Positive - Yes it changes the treatment protocol some - but it is no longer considered the worst problem. If your tumor is big, the docs may recommend chemo before surgery to shrink it. Radiation may also be in the cards after surgery depending on your diagnosis. (You can post your diagnosis in your profile & make it public so we can see what you are dealing with) In any case, you will likely have Hercepin added to the mix and continue with that for 17 'doses'.

    My last Herceptin treatment was 9 years ago and so far - no evidence of recurrence. YOu can go back and read earlier pages to see the success stories.

  • melbo
    melbo Member Posts: 266
    edited April 2023
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    catm — one of the reasons it’s hard to find information is that it’s one of the rarer sub-types. From what I’ve read/heard, it’s only 4% of breast cancer diagnosis’. However, the good news is that with the treatment protocols (herceptin and it’s biosimilals) they use now it’s considered one of the most treatable/curable versions.

    My MO told me 95% chance I was cured based on a complete response to chemo/herceptin/Perjeta and that the doctors would consider me cured 3 years after surgery. It’s no guarantee of course, because cancer is a nasty, evil bitch — but it makes me feel better.

    here is a link to an article talking about what good outcomes our sub-type have:

    https://dailynews.ascopubs.org/do/more-tolerable-cures-patients-early-stage-her2-positive-breast-cancer-halfway-precision


    if you’re stage 1 then your tumor is probably pretty small — so you will hopefully get away with a slightly less toxic chemo and probably only herceptin. Either way — it is an aggressive cancer, which means a slightly worse treatment plan (ugh - chemo), but it is curable and chemo likely won’t be as bad as you expect. Please check back in and let us know!


    - Meliss

  • mcbaker
    mcbaker Member Posts: 1,805
    edited April 2023
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    I was stage 1. I had surgery first, then chemo. It started with DCIS, which progressed rapidly. By the time I had surgery, the DCIS had taken over (experts say that DCIS is not a cancer, so I guess I must not use the word invaded) the entire breast, and a bit of the DCIS had mutated into hormone negative, HER2+. They don't do that analysis on DCIS, but with the speed that it grew........

  • catm
    catm Member Posts: 130
    edited April 2023
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    Thanks Mary and Meliss for your responses and for the information.

    As you know, it has been a whirlwind just one week since my diagnosis.

    I am stage 1 as of right now. Getting an MRI on Saturday to confirm that the size is still 1.3 cm.

    Hoping you both are doing well and am heartened and encouraged by your posts and positive attitudes.

    Cat

  • catm
    catm Member Posts: 130
    edited April 2023
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    Meliss-

    Really good article on the treatment for HER2 +.

    Thanks for sharing.

  • persapoliviou
    persapoliviou Member Posts: 6
    edited April 2023
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    i don’t speak very well English but i will try to tell you that you are very lucky that you have this kind of cancer! I was stage 1 ! 1,1 cm my tumor ! Because I was young (37 years old) I have to do first surgery and then chemotherapy and radiation and herceptin! After 3 years i am more healthy than before! I have normal life without problems, my period comes back after herceptin! Don’t afraid ! You have to do the therapy but life is yours and you will be fine without worries! Anything you want to ask i am here to help you!

  • catm
    catm Member Posts: 130
    edited April 2023
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    Thank you Persapoliviou and glad you are doing so well.

    I just found out yesterday that my cancer is also multicentric, so multiple tumors in my right breast. I think a mastectomy is likely.

    Anyone have this as well??

    Thanks

  • snm
    snm Member Posts: 93
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    You are not alone catm- I am also er-, Pr-, HER2 positive stage 1a. I was found to have high grade DCIS >5cm with 1 focus of microinvasion 1.3mm. I opted for bilateral mastectomy as Dcis spanned from pec muscle to my skin. Anyway I am waiting for implant surgery in couple of weeks.

    I posted "Tips on Bilateral Mastectomy with immediate tissue expander placement" - if you have to go that route you might want to check it out as I detailed my journey, though keep in mind everyone is different.

    Best,

  • mcbaker
    mcbaker Member Posts: 1,805
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    Mine was like that, too. My breast doctor said that DCIS (particularly when it is fast-growing) is often HER2+. That is why they remove it, even though it is not technically cancer.

  • beetlemom
    beetlemom Member Posts: 18
    edited May 2023
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    Hello! Diagnosed late April with ER/PR-, HER2+ invasive tumor, had lumpectomy with clear margins last week, should be starting chemo soon (I hope!!). So glad to have found this group!!!

    Thank you for all the good data and inspiring stories! As a single mom, the inspiration is critical in helpingp me keep my chin up...so I can keep driving my kid around and making lunches!!

  • mcbaker
    mcbaker Member Posts: 1,805
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    I am sure you will be starting chemo soon. Chemo could be rough. Stay grateful that fifteen years ago HER2+ was a dire diagnosis. Today it is, if caught early, one of the better ones.

    Any questions, we are here.

  • moderators
    moderators Posts: 8,085
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    @beetlemom,

    We're sorry you find yourself here, but wanted to send you a warm welcome to Breastcancer.org! Our community is a supportive and informative place that we hope you will find helpful.

    Besides this discussion here, you may want to join also the Starting Chemo in May/June 2023 group, to meet others going through chemo at the same time. There you can ask questions, share experiences, and support each other.

    We're here for you! If there is anything we can help with, please let us know.

    The Mods

  • beetlemom
    beetlemom Member Posts: 18
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    Thank you, Mods! It is a tremendous relief to be here, with a new, supportive tribe.

  • melbo
    melbo Member Posts: 266
    edited May 2023
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    the first thing my surgeon said to me was “20 years ago this would have killed you.” Cool. Cool. Thanks dude.

    On the other hand, as far as a breast cancer diagnosis goes, this is not the end of the world. Chemo sucks — no question about it — but it’s probably more doable than you think. I always recommend reading through some of the chemo forums on this site to see what people getting your treatment experience.

    ER/PR negative/ HER2 positive is a pretty good diagnosis as far as breast cancer goes. For a fairly recent article that might make you feel a little better, check this

    out.


    https://dailynews.ascopubs.org/do/more-tolerable-cures-patients-early-stage-her2-positive-breast-cancer-halfway-precision

  • beetlemom
    beetlemom Member Posts: 18
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    Thanks, Melbo! You're right that >recent< info is much more helpful. I keep pulling myself down research vortices, then pulling back and reading the date of the research/post/article. Things are much brighter in the HER2 world these days. 😊

  • beetlemom
    beetlemom Member Posts: 18
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    Just got my port in today. It was much less daunting an experience than I expected!

    Question for the group: post-surgery, I've had a few palpitations and my heart feels a bit pound-y sometimes, plus I have about 3" of bruising. Does this sound pretty normal, based on your experiences?

    Doc asked me not to leave town for another night…would love to know if this is relatively common, so I can sleep tonight 😀

  • mcbaker
    mcbaker Member Posts: 1,805
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    Not me. Could be anxiety. I had five (!) needle marks on my left chest but they couldn't access the vein (which is smaller), so I got it on the right side. No signs of lymphedema… yet.

  • beetlemom
    beetlemom Member Posts: 18
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    Thanks, Mary! I'm back at the doc - they just did an xray…things look good! May have an EKG, but waiting to hear from doc…

  • mssoda101
    mssoda101 Member Posts: 26
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    hello… just thought I’d stop by since I’m ER-PR 2-3% her2 +… starting chemo soon, will be taxol, perjeta, and herceptin. I’m wanting a double mastectomy to hopefully reduce further risk… what is everyone’s treatments? Stage 1A and PET revealed no nodes so far but I have ki67 of 80% and grade 3 tumor! I’m a bit freaked out…

  • mcbaker
    mcbaker Member Posts: 1,805
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    Here is mine, in my signature. Take it easy. Looks like you are in good shape.

  • melbo
    melbo Member Posts: 266
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    my diagnosis and stage are also in my signature. The stress and freak outs get better as you adjust to your new reality, but it takes time. :(

    Any cancer diagnosis sucks, and this particular brand of BC comes with its pitfalls (like chemo and months of infusions or shots for herceptin/Perjeta) but on the plus side we don’t have hormonal treatments, and statistically it’s a type of cancer that tends to respond very well to treatment.

    One of the other things about this type of cancer is that it’s not a common subtype (only 4% of cases) which means this thread isn’t super active. A couple of us monitor it and respond, but I would encourage you to look for another thread or two as well. I really benefited from an active chemo treatment thread when I was going through chemo.

    If you go back in this thread though you can also find some links I previously posted about what good outcomes this type of cancer has, which might help reassure you.

  • beetlemom
    beetlemom Member Posts: 18
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    Mssoda101, I have a high Ki67 number, too, but a friend sent this and it was very reassuring:

    "Research has also found that tumors with a high level of Ki-67 may respond particularly well to chemotherapy. Chemotherapy attacks all rapidly growing cells (including healthy cells, such as hair follicles). Therefore, tumors that are more aggressive (divide more rapidly) may respond particularly well to these regimens.”

    The footnote: de Lartigue J., Oncology Live. 2021:22(5). https://www.onclive.com/view/ki-67-is-poised-to-advance-as-a-biomarker-in-early-stage-breast-cancer

    A breast cancer researcher whom I know also told me that HER2 was now has such good treatments, that it's a favorable type of BC to have, if there can be such a thing…

  • mcbaker
    mcbaker Member Posts: 1,805
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    I was also told that hormone negative, HER2+ cancer responds very well to chemo.

  • ktmalhotra
    ktmalhotra Member Posts: 4
    edited September 2023
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    I am newly diagnosed left, Stage IIA, Grade 3, ER-, PR-, HER2+. No other lymph node involvement. I recently turned 40 so this came out of the blue. I have a husband and two kids. MO's plan is TCHP for 6 cycles followed by surgery and radiation. Lot to process since my diagnosis last week but I start my chemo this Friday. Couple of questions that come to mind for this amazing group:

    1. Did most of you go through TCHP treatment pre/post surgery?
    2. Anxious about side effects. How manageable were they? I know it can vary a lot based on several factors.

    3. How total was the hair loss and how soon did it start?

  • minustwo
    minustwo Member Posts: 13,128
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    KT - sorry about your diagnosis, but HER2+ is such a treatable thing now. I had TCHP PRE-surgery & radiation - and then took the balance of Herceptin infusions for approx a year. I thought it was the best way since the surgeon could then assess if there was any cancer left.

    Side effects were difficult, but I was 68 and got through it fine. Mostly exhaustion.

    Hair loss - really don't remember how soon - but my hair all grew back in by the time I finished the last of the Herceptin.

  • mcbaker
    mcbaker Member Posts: 1,805
    edited September 2023
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    The hair loss is close enough to total to just shave the rest off.

    You are much younger than me, so the side effects will be even more manageable. Although I do know that carboplatin is difficult.

    Chemo plus Herceptin are a given. Mandatory. My MO says that hormone negative BC's respond very well to chemo.