LCIS and Aty. Hyperplasia

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cf317
cf317 Member Posts: 2

Hi.

I am 53 and was recently diagnosed with LCIS and atypical hyperplasia through a stereotactic biopsy. One surgeon said do a lumpectomy, another said just watch it closely. Neither thinks I need genetic testing, or anything like that. I am totally confused and so comforted by all the posts here about people's journeys through this. Now I know total confusion as to next steps, even from doctors, is "the norm".

I have no family history that I know of, and already eat right, exercise and don't drink....leaning towards lumpectomy today....but not sure....thoughts???? I have read that having had the biopsy can disturb the area and lead to it becoming invasive even though doctors say LCIS never becomes invasive. So much contradictory information out there.

Would appreciate any feedback or insight anyone cares to share.

:)


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  • Roo73
    Roo73 Member Posts: 42
    edited November 2021

    cf317, so sorry to hear you are going through this stressful situation.

    The whole is it/isn't it cancer with LCIS has led to calls for getting rid of the term LCIS altogether and just calling it all ALH, because it leads to so much confusion and distress. I went through that myself.

    My surgeon excised mine because he had to go in after some DCIS anyway and because it presented in a weird way, as a lump. Some others will chime in here, but he personally was adamant that he considered surgery for LCIS to be overtreatment. FWIW he is a specialist in breast oncology at a big teaching hospital.

    I have two questions:

    1. What time frame did they offer for follow-up scans? Often it's 3 or 6 months—it isn't going to go anywhere in that time, and you can get a better idea of what you're dealing with.

    2. How did they find it? LCIS is hard to detect on scans, as I understand it.

    As I said, mine was excised just sort of incidentally. Before I learned that it would be removed, I was in your shoes. I personally came to the conclusion that I was going to take a deep breath and trust them on the "never becomes invasive".

    Whatever you decide, the bright side is that you may qualify for more frequent follow-up in the future.

  • cf317
    cf317 Member Posts: 2
    edited November 2021

    Hi, Roo.

    Thank you so much for taking the time to reply.

    They found my LCIS on a 3D mammogram. A very small area of microcalcifications and then the biopsy. They are also watching another area in the same breast. They had been watching something in the right one, and after a couple years decided it was nothing. The plan is to do US and mammo on left every 6 months.

    Your doctor thinking surgery is over-kill is in line with the second opinion I received. I am vascillating about a lumpectomy because so many have posted that they found other areas of concern when they went in for the LCIS. So hard to know.....another well known surgeon said she always goes in and looks around when there is LCIS. She said that in 2018, though, and so much changes year to year with this.

    Thank you again for commenting and sharing your story.

    Best wishes,

    cf317

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