Link to interesting article

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Bounce
Bounce Member Posts: 574

I came across the following article:

http://www.elle.com/culture/news/a28636/a-radical-idea/

and found it easy to understand and very interesting.

It seems well researched and thought out and I hope it will be of help to anyone recently diagnosed with DCIS.

It is a long article and it is important to read it all - nothing is simple and the article explains some subtle differences that can be game changers.

At the very least it may help newly diagnosed ladies to ask their doctors the right questions in order for them to make an educated choice for themselves.



Comments

  • AnnieBear
    AnnieBear Member Posts: 96
    edited June 2015

    Thank you.  Very interesting article.  I wish I'd known then what I know now.  I would never have had a lumpectomy and radiation.  I would have taken the wait and see approach. 

  • ballet12
    ballet12 Member Posts: 981
    edited June 2015

    My complaint about the article is that, although the surgeon is doing research to try to establish who needs more proactive treatment and who can wait (based on various parameters), her conclusion, or at least the interpretation of the person who wrote the article, implies that this surgeon has everyone watch and wait. First of all, how do you know, if you watch and wait, that you are only going to go from Stage 0 to Stage 1? For some scenarios, watching and waiting could be relatively risky.  I believe that I fell into that category.  When I first received the diagnosis by phone (prior to seeing the pathology report), I said to myself that I would only have the surgery, or even adopt a watch and wait strategy.  Figuring that, since the core biopsy showed ADH, the surgical biopsy would only show a small amount of low grade DCIS, kind of just a borderline above the ADH.  Well, when I saw that the report said over 4 cm of multifocal high grade DCIS with comedonecrosis and no clean margins, I decided that I needed to get the surgery and radiation.  I did decline the hormonal treatment.  I did the absolute minimal that I felt was necessary to reduce risk, including having ultimately three lumpectomies rather than a mastectomy, and not doing the hormonals.  I did do the radiation, which cuts the risk substantially.  I had a history of gradually escalating breast changes as it is (prior ADH findings, etc.) and family history.  While I can't be sure that it would have progressed to invasive disease, there was a reasonable chance of that--maybe not in a year or two, but after awhile.  I think that the author's graphic description of a mastectomy and side effects to follow, was something that should be stated.  It's not a benign procedure.  It reduces risk much more than lumpectomy, but there can be lifelong side effects of one sort or another (as compared to lumpectomy without sentinel node biopsy). I should add, that for some women, mastectomy is required (based on many factors), and for others mastectomy yields better mental health in the long run, than constant worry and tests.  I do hope that more women will be able to safely do the watch and wait approach.  I would have loved to hear what this surgeon would have done in my case.  I suspect she would have recommended treatment.

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    I take these articles with a grain of salt when there is no nuanced discussion of how grade, extent, age, and other risk factors affect one's decision on treatment. I don't think all DCIS is a watch-and-wait scenario. I'm sure there is plenty of overtreatment of DCIS but there is also a lot that is not yet known about DCIS. I certainly don't care to be among the undertreated. All that said, it's great that this PS is discussing post-mastectomy pain syndrome and risks of unnecessary surgery. Thanks for sharing this information.

  • Bounce
    Bounce Member Posts: 574
    edited June 2015

    Hi LAstar and ballet12

    I actually liked this article because the surgeon wasn't insisting there was a right or wrong way for everyone but that numerous factors had to be considered.

    I think you missed this part so want to bring it to your attention:

    "Hwang stresses that she would never recommend "active surveillance," as watch-and-wait is also known, to all DCIS patients. Women in whom the condition is extensive, or who have BRCA gene mutations, HER2 positive cells, or a family history of breast cancer may want to move quickly to surgery. The same is true for those who are under 50; age matters because younger women have more years in which to develop cancer, tend to suffer from more aggressive disease, and are further away from developing other life-threatening illnesses, such as heart disease."

    I thought this article might be helpful to anyone newly diagnosed trying to make sense of DCIS as it raises lots of ideas and questions. Although it is quite long it was easy to read - not full of medical jargon and statistics which make my brain boggle lately!

    It amazes me how much info we have had to process and what difficult decisions we have had to make sometimes.

    Hugs to all.


  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    Thanks for the clarification -- I did miss that very important part!

  • trailrose
    trailrose Member Posts: 219
    edited June 2015

    Thank you for sharing that article. I'm so happy with my decision to have a BMX vs. a LX with radiation as suggested by my BS. Mine was high grade with comedonecrosis and was the size of a grain of rice. Remember that high grade with comedonecrosis can act differently than low grade (which I think this Dr. Hwang mentioned) With that being said I have a family history of breast cancer on my Father's side. I never got to meet my Grandmother or Aunt who died of breast cancer in their early 40's. I'm 43. My Sister was diagnosed with Stage IIIb breast cancer at the age of 27 and has the BRCA 1 gene mutation and I don't. I didn't want to worry and be checked constantly. I also didn't want to have radiation or take Tamoxifen. None of the choices are easy.

  • ballet12
    ballet12 Member Posts: 981
    edited June 2015

    Thanks, Bounce.  I read the article quickly this morning before I went to work (I'm still there).  I must have not gotten to that section you refer to, thinking I had read the entire thing.  So, I'll go back.  I'm relieved that she did discuss scenarios where surveillance (plus hormonals) might not be ideal.

  • ballet12
    ballet12 Member Posts: 981
    edited June 2015

    I finally got to read the entire article.  There were so many electronic ads that popped up, that I didn't realize how long it was.  I agree, now, that the article is more nuanced.  It also seems that Huang does sometimes watch women whose situation might be more risky, such as the woman with DCIS in three quadrants.  I can actually see the value in the active surveillance approach in some of these more risky situations, as the most likely adverse event would be either more DCIS or a small invasive tumor, both of which are treatable. Obviously someone who is BRCA positive shouldn't be doing this, but maybe even my situation wouldn't show any more progression. At the same time, I did do something to pretty much ensure that it is highly unlikely that there will be progression.

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