Word From My MO About ADH Surveillance

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Ddw79
Ddw79 Member Posts: 533
edited April 2016 in High Risk for Breast Cancer

I am going to paraphrase an email

I just got from my MO who I have know for over 20 years since I was in first group ever screener for BRCA 1. The woman is head of breast cancer genetics at Dana Farber in Boston. I trust her more than I trust any other physician.

1.ADH not known to be fast growing

2. No need for twice t year screening

3. MRI is not better than 3D even on dense breasts like mine,

4. Ultrasound is ok to do but keep in mind high rate of false positives.

5. Raloxefine brings risk back to 1% ( not really confident about this claim).


I think these are the highlights. I hope this helps someone else . It helps me but I still need to read up on US . I didn't have this in the original DX process.


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  • momoschki
    momoschki Member Posts: 682
    edited March 2016

    Ddw, thanks for this, especially since it comes from such a reputable source! It's difficult for me to see how 2x year screenings are not necessary, however, when there's recent research that shows that risk of developing BC after an ADH dx approaches 30% over a lifetime. And raloxifene reduces risk to 1%?? I have certainly never seen this statistic before, but certainly hope that it is true

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  • Ddw79
    Ddw79 Member Posts: 533
    edited March 2016

    I agree . There is so much conflicting info out there . I can't believe that about raloxefine myself. I haven't heard 30% though. Where did you read that. Mostly I've heard either 20 or 25 % increased risk. Hard for me not to give this some credence at least coming from whom it is coming. Judy Garber has been in this. Case for 30 plus years. She is also after all we have been through together,a dear friend

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  • momoschki
    momoschki Member Posts: 682
    edited March 2016

    This is the study below that I'm referring to. Note that it's a 30% absolute risk, not a 30% increased relative risk.

    It would be great if your doctor could give you some sort of reference for the supposed 1% risk with the Evista. Do you suppose she meant a cumulative risk of 1% each year? That is a number I've heard many times before (with no chemo prevention)

    http://www.nejm.org/doi/full/10.1056/NEJMsr1407164...
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  • Ddw79
    Ddw79 Member Posts: 533
    edited March 2016

    thanks Momo. I will read that and next time I am in touch with her I will asks out that 1

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    every article I've ever read, has quoted 20-25% increased overall risk from ADH. Raloxifene (evista) supposedly decreased overall risk by 38% (as compared to tamoxifen, which decreases it 45-50%). So she probably means it decreases yearly risk from 1.5-2 % to about 1% a year.

    anne

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  • Ddw79
    Ddw79 Member Posts: 533
    edited March 2016

    Makes sense Anne

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  • Ddw79
    Ddw79 Member Posts: 533
    edited March 2016

    Has anyone received false positive info that necessitated follow up investigation from US monitoring

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2016

    I don't believe there is any imaging modality that we currently have that does not give "false" positives, be it mammography, ultrasound or MRI. They all "see" something there but it is now impossible to definitely say what that something is. All they can do is rate how suspicious that something is, from likely benign, to suspicious, to most likely cancer. The "suspicious" covers everything from about three percent chance of malignancy ton ninety four percent, thus the 80% benign Birads 4 benign biopsy rate

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  • Djabi53
    Djabi53 Member Posts: 184
    edited April 2016

    My risk is double that of the average woman for the rest of my life. My oncologist told me that Evista would take my risk down to that of an average woman my age for invasive bc only. Was told Evista does not help with DCIS.

    Frankie

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2016

    that's my understanding too Franki

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