Second Opinion

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Ddw79
Ddw79 Member Posts: 533
edited May 2015 in High Risk for Breast Cancer

Has anyone sought second opinion on ADH dx and treatment? I am hoping to arrange two MO appoinments. Second will be with BC Researcher/ Clinician at DFCI in Boston. May prove not worthwhile but it will be covered I believe.

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

    I'd feel comfortable with whatever an NCI designated cancer center told me, & most of those have "high risk" clinics. Dana Farber or David Koch Center at MIT are in MA

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    yes indeed, headed to Dana Farber but not until June 12th...my birthday 😌.

    Melissa, how long have you had your current dx? I too have the adenosing sclerosis

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

    Since 2011. The sclerosing adenosis isn't really considered much, if any, of a risk factor

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    I read conflicting info about that. I feel like I'm sitting on a powder keg with this dx. It's hard emotionally. Does anyone else feel this way with high risk conditions? It feels pretty lonely right now

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

    I felt that way at first, but after a couple of years of survelillance I have come to peace with the reality that the majority of women with LCIS do not go on to develop cancer. LCIS is higher risk that ADH. About 13% of all women develop breast cancer in their lifetime. If my risk is 25%, that is only a 12% increase in risk

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    thanks for telling me that . It's so hard to feel any comfort right now. Do you just do Monitoring Melissa or tamoxefin too?

    Thanks for your help here.

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

    I'm menopausal, so they have recommended Aromasin, but I have chosen not to take it for now because of some other medicalissues. I couldn't take tamoxifen because I had a pulmonary embolism when I had ovarian cancer.

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

    I believe the recommendation by the NCI is just mammogram alternating with a clinical breast exam every six months, plus maybe antihormonal.Your gynecologist can do the clinical

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    Yeah the medical follow up is going to be hard for me too. Like you other medical issues and very serious autoimmune disorders. I am also post menopausal by 20 years post ooph. Stuck between a rock and a hard place . Thanks for sharing Melissa. Every woman in my family has either had ovarian or Breast Cancer. Wishing us all better times

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  • ballet12
    ballet12 Member Posts: 981
    edited April 2015


     

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  • Ddw79
    Ddw79 Member Posts: 533
    edited May 2015

    Did your MO tell you that you had a 25% increased risk? I have ADH which may be higher risk but she told me 30/35% increased risk.

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

    The genetitcs doctor told me.

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  • Newgirls
    Newgirls Member Posts: 81
    edited May 2015

    Hi ddw. I had a few biopsy results with ADH. Mom and sister both had bc but we don't have the brca1 or 2 gene. I sought my second opinion at Dana Farber and they recommended that with my ADH results ( one in each breast) that I wait and see. Finally I had a non-invasive DCiS result and they presented all options to me. I decided on bmx and am happy with my decision. They didn't push either way for bmx or rads with lumpectomy but once I decided they supported my decision. My final path report after bmx showed LCIS in both breasts so I feel that I dodged a bullet but I'll never know I got great care and support at Dana Farber and good for you in perusing a second look. ADH may never become invasive but no one knows for whom it will and for whom it won't. Best wishes.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    ddw79----ADH itself carries a risk of 20-25%; your risk probably came out higher due to your family history of bc and oc. A 2nd opinion is always a good idea. I was diagnosed with LCIS over 11 years ago, ( a step further along the bc spectrum; plus I have family history of bc (my mom had ILC), they say my risk is about 35%.) I had a lumpectomy, took tamoxifen for 5 years, now have been taking evista for about 5 years, I continue with high risk surveillance of alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months. fortunately I haven't needed any further biopsies in all these years, but I am always vigilant, and would definitely revisit the option of BPMs if something suspicious were to show up again.

    anne

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