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percy4
percy4 Member Posts: 477

Oh well. Due to the conflicting ideas in the news about DCIS (even with microinvasion, as in my case) being over-treated (which may or may not be true) my daughter actually said to me today that she thought I had never really had breast cancer. I did remind her that, in fact, I had had not only DCIS, but a very small invasive cancer, and that I had been fortunate to have it at that Stage, but that it had been very real. Got a smirk. Not happy. I AM lucky, but have the same feelings and concerns that anyone who has had even a small invasive cancer has. And I do not dwell on it, overly, at all. Seriously.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2015

    I'm seeing a lot of misunderstanding here of this news too. I don't think the "watch & wait" idea was intended for high grade, comedonecrotic, large areas, etc. MAYBE small, low grade. It's like some of them only heard DCIS and none of the nuances

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Hi Percy4:

    The power of the press to confuse the general public is awesome indeed. One would like to think up some snappy comeback, except it was your daughter. :(

    I had a bilateral mastectomy for my non-cancer. And I worry about my 1.5 mm IDC plus micro-invasion, and other disquieting pathology features regularly. Not overly, but regularly.

    BarredOwl


    Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

    Bilateral mastectomy and SNB without reconstruction 9/2013

    Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

    Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

  • Annette47
    Annette47 Member Posts: 957
    edited December 2015

    My husband kind of questioned me about it after reading one of those articles, but when I gave him more information about the whole issue he did understand. I didn't make a point of saying DCIS to anyone else - just “breast cancer which was fortunately caught very early" since I knew about the micro-invasion from the get-go, and figured it was not really any of their business what my specific diagnosis was.

    That's pretty much how my doctors described it anyway, as they felt since I had such a tiny area of DCIS that was already breaking through, if it hadn't been found when it was they wouldn't have thought about it as DCIS at all as that tiny portion would most likely have been subsumed into the invasive tumor and not really been noticed.

    I think DCIS, like breast cancer, is a term that encompasses many different diagnoses and generalizations about diagnoses or treatments make little sense.


  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited December 2015

    I wonder Percy4.. if that is the way your daughter needs to process this so that she doesn't fear that she may lose her mother??? If it wasn't really cancer then she won't lose you... Just a thought???


  • marijen
    marijen Member Posts: 3,731
    edited December 2015

    Percy I've been thinking about it too. Couldn't you show her some of your office visit notes or pathology reports to prove to her? Or maybe an article on treatment for you dx? Also just thoughts. Kids! I can relate.

  • percy4
    percy4 Member Posts: 477
    edited December 2015

    Thanks. You know, I don't think it is a fear of losing me; that was two years ago and she gets that I am fine. I think it is because my diagnosis made her higher risk. She has had one mammo call-back and biopsy (it was fine). After reading and speaking with her friends about the news stories, she's not following up with her own mammos and gets very defensive and says she can't "deal" with it when I tell her she needs to have mammos. She is sticking to the idea they lead to unnecessary biopsies. The fact that they see every little thing now (at least the calcifications) may make that true, in part, but mammography is what we have, as my radiologist put it so well. Only shows 50% or so of cancers, which is why I want screening US as well, but my HMO won't give them. She needs to think its all BS, so it won't be her. I get it. But with the micro, there is no doubt I had cancer, good prognosis and all.

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited December 2015

    Wow, percy4, you are facing a very difficult challenge, indeed. If I were you, I would not try to convince your daughter that you had breast cancer. The smirk was a very rude action, period. Your daughter is not willing or ready to hear the truth. My family said I was lying about the fibromyalgia and Lyme disease, and this went on for years even after the Social Security Disability Board sent me to independent physicians who determined that I was disabled. My brother changed his tune after he started having nerve pain. As for your daughter's unwillingness to get mammograms, I suspect she is frightened. All you can do is to be a good role model. Some people tend to shut out good advice, and there is not much you can do besides give your daughter some educational materials and maybe talk lightly about why mammograms are important if your daughter seems receptive.She would probably listen to someone her own age, but it is dicey. I wish you the best.


  • OneLuve
    OneLuve Member Posts: 11
    edited December 2015

    I truly do not like for any concern I have to be meanialize. If it is real to me, it's real to me and is my issue. If you will be of support, do so but please don't minimize. As well all know the pathology can change after surgery and having invasive with it means there was a potential for a different outcome but it was caught early on. Every cancer patient is not the ones you see in the commercial. Take her with you to the doctor and impress her own health upon her for self-checks, gyno checks and screenings and the benefit of early detection.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    I would add that even without any sign of invasion (micro or otherwise), DCIS is considered malignant (cancer), which gets back to what MelissaDallas said above: the specific pathological features that consistently and reliably establish "low risk" disease are not well-characterized.

    The popular press stories do not go very deep. For example, the observations that raised the question of potential over-treatment in a widely varied patient population are not necessarily proof of over-treatment in any particular sub-group or case. Importantly, such observations do not establish that more limited treatment regimens would be safe and effective compared with standard treatments for some or all. Studies are being initiated now.

    BarredOwl

  • have2laugh
    have2laugh Member Posts: 132
    edited December 2015

    Many of these stories have been presented in manner meant to sell papers. If you read within the text these physicians are clear-the watch and see approach is NOT appropriate for every patient but MAY be for some. It's disconcerting to yet again feel you need to defend your health care decisions after people read these articles. Would I love to have never had surgery-heck yes, I'd love to not have truncal lymph edema, too while we are at it or the scarring and thickening left after having a quarter of my breast removed and then irradiated. My plan would not have changed based on these studies-too strong of a family history. But what I fear and what we have to consider is, if we say we are going to watch and wait, is this surveillance going to be 100% covered much like schedule mammograms? If not we risk woman being unable to afford these additional tests and potentially facing serious health consequences. I would love to see less women having surgery and treatment, but I have concerns for follow up given the health care structure in this country.


  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited December 2015

    My oldest daughter still trivializes my cancer (or rather, her higher risk) and I'm stage IV IBC. It hardly gets worse than that, but the way she handles it is that 'they cure cancer all the time' and 'mom, you look really good'. I swear I'll be dead for a month before she even realizes it.

    My younger daughter is much more sensible--she does recognize her higher risk and is on it all the time.

    So, our kids seem to have their ways of coping. Some make too much out of too little, and some make too little out of too much.

  • percy4
    percy4 Member Posts: 477
    edited December 2015

    My feelings, exactly. Amen; and thanks, all.

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