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calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

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  • mcbaker
    mcbaker Member Posts: 1,803
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    Glad to see this thread surface again. We are a small minority, with some difficult decisions because the stats aren't there. Doing well. Just had a mammo and meet with the breast surgeon. Lefty is doing well. Righty the imposter is a bit large, and I hope to lose some weight.

  • moslmic
    moslmic Member Posts: 5
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    yes, I wish I had seen this before, it would have made my decision easier, as it is I’m glad I have read up as it confirms to me that to take the treatment was the best thing. One oncologist was very like, you can if you want but you don’t have to, nothing to confirm a benefit or not. When I went in to sign consent forms though that oncologist did say to me that I had made the right choice, which made me feel better. It’s a difficult position to be in though when you are going through the chemo, feeling ill and thinking, well I chose to do this!

  • dancetrancer
    dancetrancer Member Posts: 2,461
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    It is indeed a difficult decision! Glad some new people found the thread helpful! I'm 9 years post diagnosis and still doing well. Grateful!

  • dogmomrunner
    dogmomrunner Member Posts: 492
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    moslmic- glad you made it through the chemo. Herceptin treatments are much easier. Sadly most of the body hair comes back. :(

  • alliesmom15
    alliesmom15 Member Posts: 66
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    I will be ten years out in May. Everything’s is going great.
    I’m going to try to get the implants out this next year, maybe try some fat transfers and just leave out the implants altogether.

  • Cwhitney
    Cwhitney Member Posts: 42
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    I don't come here very much but life is good! I'm almost 5 years out in May and this thread and it's ladies made me feel confident that I choose the right course to beat this beast. Congrats on getting through chemo. Herceptin is a breeze.

  • moslmic
    moslmic Member Posts: 5
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    I’m so glad to see so many positive stories! As someone just beginning I’ve had some really low moments but seeing how you all are has given me hope in some really dark times xxx

  • moslmic
    moslmic Member Posts: 5
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    Anyone as part of this group offered Nerlynx? I have, the side effects sound horrendous but I think I’m going to go with it. For my relatively small (2.5mm) invasive it does feel a bit like is it too much? Especially when some from this cohort have opted for no treatment whatsoever and still been ok. Currently I have had 12 weeks Taxol, 1 year of Herceptin, 20 sessions of radiotherapy and will be on Tamoxifen for 10 years.

  • ajminn3
    ajminn3 Member Posts: 284
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    moslmic- I was not offered it. I asked about about it and originally wanted to take it, but my oncologist did not see the overall benefit for me at this time. I still don’t entirely know what makes some MO’s suggest it and others not..

  • mcbaker
    mcbaker Member Posts: 1,803
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    The differences between you and me-- you had one node positive. You had radiation and hormone suppression. Hormone suppression would not work for me. He offered Nerlynx, but his attitude was that he did so only because Mayo requires that it be offered.

  • rosamond
    rosamond Member Posts: 32
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    Just wanted to give an update after a long time away. 8 years out. Had my annual 3D mammogram and check up today on my remaining natural breast. All fine. Started annual u/s at 6 month mark, annually, 6 months ago as level C density.

    Never had chemo, nor herceptin but took tamoxifen religiously for 5 years. Keep my weight reasonable and work on my fitness.

    The last 8 years have been joyful and sad and surprising. Since my cancer was removed, I got separated and divorced, met my soulmate and remarried, and then I lost him to brain cancer. My daughter developed an eating disorder but is doing well now. My father died after a lengthy journey with dementia, my sister developed a serious but manageable illness, and my mother was recently diagnosed with slow growing lymphoma. I had terrible debt and didn't make enough money. I have a fabulous job now and no debt, and I've traveled to Brazil, Paris, Amsterdam, Stockholm, Toronto, Miami, and more. I inherited some assets from my late husband. I am dating. I had kidney stone issues, vertigo, costochondritis, and plantar fasciitis. I am happily dating someone and renovating my home. Looking forward to retirement in a few years! I am so very grateful for the opportunity to experience all of it.

    And I am so very appreciative to have had such a great checkup today of all days, World Metastatic BC Day.

    May you all be well and thrive.

  • stuckinohio
    stuckinohio Member Posts: 11
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    Thanks for the thread! Uptodate .com recommends chemo and herceptin even for 3 or 4mm HER2+.

    Here’s my info so far, I’ll update after I meet with the 2-3 MOs I’m referred to: I am 33. I felt a lump and was subsequently diagnosed with high grade DCIS in June 2023, second opinion said the pathology was a poor sample so had a repeat biopsy right before DMX. Came back as DCIS again. After DMX, path found 5x4x4 cm DCIS with multi focal IDC. Described “at least 2” with the largest as 3mm and smallest as 1mm. Grade 3, ER-, PR-, HER2+ (80% or 3+). Sentinel lymph nodes negative.

    Being young, also only a year postpartum combined with family history with recurrences and poor prognosis, I want to do whatever the most aggressive treatment recommendation is. I don’t want this to ever come back.

  • mcbaker
    mcbaker Member Posts: 1,803
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    I don't have a heavy family history, but I agree with treating it aggressively. My right breast was dense and had a poor history, so I was glad to be done with it. Even asked for mastectomy before we knew exactly how bad it was going to be once we were ready for surgery. Lefty is not dense, and fed my babies very well, so I am not worried about a recurrence, especially with very little family history.

    Chemo was rough, but Herceptin was smooth sailing. Just remember that before Herceptin, this had a very poor prognosis. Now, prognosis is one of the best.

  • stuckinohio
    stuckinohio Member Posts: 11
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    I’m so thankful to receive this diagnosis post Herceptin! I believe the reason for my bad family history was probably due to being her2+ before that was available (not sure about that, just guessing!).

    That’s an interesting side topic! Both of mine are category D density which makes sense bc of my age of course. But I breastfed 3 kids for a total of 3 years. My left side was always better for all 3 kids, produced 2x the amount of the right when I had to pump at work. I always had trouble latching on the right. Nothing was found in the left at my DMX but I’m glad to not have to worry about it. Sad to see it go, though!

  • snm
    snm Member Posts: 93
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    Hello! Looking for long term survivors of tiny invasive cancer post surgical removal only (no chemo, no radiation). Stage 1a? I had BMX in 2023 for large area of DCIS with 1.3 mm invasive focus on left. Nodes-clear. My oncologist says very rare to have recurrence and most likely it won't come back. Loved hearing that from her! Hoping some out there will us posted on how they are doing!

  • mcbaker
    mcbaker Member Posts: 1,803
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    Interesting observation, stuckinohio. We could be twins from different families.