Her2 and Stage IV from the start

Anonymous
Anonymous Member Posts: 1,376
edited November 2014 in HER2+ (Positive) Breast Cancer

I was pondering this when reading other threads. By virtue of pure, dumb luck, I was diagnosed Stage III(.99999999) instead of Stage IV. I was gobsmacked by this as I had been pinkwashed to believe that if I did the "right" things, like SBEs and not putting off going to the doctor after finding a lump (no mammos for me as I was too young), I would be rewarded with a nice Stage 0 or 1 diagnosis. I even thought this with a big lump, as I didn't realize for awhile that staging/prognosis is largely (ha) based on the size of the tumor. Then came the guilt. Did my SBEs suck? Did the one week I put off my ultrasound appointment let it grow?

But I've noticed something on this board. Her2 only makes up 25% of all BC but it seems to make up pretty large percentage of those diagnosed Stage IV from the start. This includes women who got regular mammos, women who got regular MRIs, women who were thought to only be Stage I, women with big and small tumors, women with lymph node involvement and no lymph node involvement alike.

Herceptin has outsmarted a lot of Her2+ cancer but it seems like a lot of Her2+ cancers still outsmart early detection. And Komen and the Pinktober people don't acknowledge this at all.

Anyway, just ponderings since I'm working on letting go of guilt with my shrink. I hope someone who was diagnosed at a later stage might see this and let go of some of their guilt too. It's not you, it's this sneaky, elusive and lightning-fast cancer.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited November 2014

    I so agree with your thoughts. I found my lump at 40 years old and had my first mammo which dismissed the lump as a cyst. I pushed at the mammo and they gave me an ultrasound and still said it was a cyst. Well the lump hurt so I told my cyst dx and left. Over the next six months it got bigger and more painful so I went back and they they were all over it. Found my mets after my lumpectomy ... Liver and bone at 41 years old. No family history, low weight, good diet,etc etc and boom stage IV breast cancer.

    Jennifer

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2014

    Ugh, doctors that dismiss lumps as cysts. I was lucky that all my doctors took me pretty seriously (despite being 28 with only a very modest family hx) and that might have saved my life. Well, I'm still a little bitter that I had to wait a whole week to get my biopsy results, but that's more about the mental agony I was in than any prognosis difference. I love how well Herceptin has kicked your mets though!

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  • MarshaMay
    MarshaMay Member Posts: 95
    edited November 2014

    I so agree with your take on this. I too was diagnosed Stage IV and HER 2 positive from the start. I refuse to second guess myself on any of this. My hands are full just managing today and planning for the inevitable. I can't go back and feel guilty over missed mammograms or anything else. I can't even go back and second guess treatment decisions. Just trying to stay in the here and now. Guilt is baggage no one needs on this journey. Good luck.

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  • rozem
    rozem Member Posts: 1,375
    edited November 2014

    when I hear repeatedly that BC is the "slow growing" cancer I want to jump up and down in frustration.  Mine grew from pea size in May (I thought it was a cyst) to 2cm by August - 12 weeks!!!.  I still beat myself up for not getting the pea checked out in May but at 42 with no family history BC was just not on my radar.  They don't even start screening here in Canada until 50.  With all this awareness there is no talk/education  of more aggressive cancers (in generally younger women), dense breast tissue where mammos don't even work (so if younger women get more aggressive cancers the screening tools are less effective as well).  I had no clue ! 

    her2 is a different beast which is why I opted for a bmx - many question my decision but I know that my cancer was fast growing and I wasn't comfortable at all that they would "catch" another cancer "early". 

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  • Becs511
    Becs511 Member Posts: 303
    edited November 2014

    I'm another Her2+, stage 4 from the starter, and also feel that mine came out of nowhere! I had my regular gyno appointment in Dec. 2013 and she performed a breast exam. No palpable lump at the time. Fast forward to May 2014, and boom 5cm tumor that I could feel. I was mad at my gyno for a few months for not finding anything during my visit, but I have come to realize, that at that time, there might not have been anything to find.

    I am extremely grateful to be in the small minority of triple positive women though, because of all of the magical treatment options. They seem to be doing wonders for me!

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited November 2014

    Me too, stage IV from the start. Unfortunately I dismissed my own lump as a cyst since I'd has them so often and it appeared only a month after my mammogram. But hindsight is 20/20, and there is no use beating myself up over it now.

    I'm noticing that many of you had surgery after chemo. My doctor has mentioned to me that studies show that there is probably no benefit to removing the original tumor or breast at this stage unless you have a gentic mutation which could make you predisposed to a second cancer, but I'm not sure how I feel about that. I've seen studies on both sides. I don't want to end up regretting not having surgery. I guess I'll wait and see what is left of the tumor when chemo is finished.

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  • Sassa
    Sassa Member Posts: 1,588
    edited November 2014

    I also get frustrated with the blanket "cancer is slow growing" statements. My hormone negative, HER2 psoitive tumor had a KI-67 of 70%. It was growing at a blazing rate of speed.

    I was lucky. I wanted to have a breast reduction so I was sent in 4 months early for a mammogram. The mammogram found a tiny mass but gave it a BIRADS 3. Come back in 6 months.

    My primary care MD wasn't happy so she sent me back for a compression mammogram - same diagnosis.

    She sent me back for a ultrasound exam. Same diagnosis.

    She said no way, go for a biopsy. The surgeon did a excisional biopsy and in the mass of tissue removed was found a small, extremely aggressive tumor.

    If I had gone in at my regular time for a mammogram, I believe I would have been stage IV instead of stage 1.

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