So Far Benign, but still have more testing to go.

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momof4va
momof4va Member Posts: 7

Since early June I have had the following (all in the right breast):

1. diagnostic mammogram - Dx micro-calcifications BI RADS 4; and ultrasound - Dx negative.

2. a stereotactic biopsy - Dx Flat Epithelial Atypia w/ calcifications, stromal sclerosis;

3. a breast MRI - Dx mildly suspicious focal area non-mass enhancement 1.3cm x 1.0cm BI RADS 4 (different from the FEA found on #2).

I now need a MRI guided biopsy to check out #2 before I have an excisional biopsy to check out #1.

To me,  this seems like a lot of testing for benign atypical cells. Anyone else have this many steps before a final diagnosis? Is this normal?





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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Hi Momof4va-

    Welcome to BCO! We know it seems like a lot of testing, but it's pretty standard in diagnosing breast health issues. Even if the findings thus far have been benign, there are things your doctors probably want to determine in order to decide what your next steps should be as far as treatment (if necessary) or monitoring. Hang in there, and we hope you get some definitive answers soon!

    The Mods

  • panthrah
    panthrah Member Posts: 433
    edited August 2016

    sorry no one replied. yes thats pretty much how it went for me too.

  • momof4va
    momof4va Member Posts: 7
    edited August 2016

    Thanks panthrah. After two needle biopsies and one surgical biopsy all results are benign although my BS has recommended I see a MO to discuss whether or not medication is necessary since my body is producing atypical cells. Not sure I feel about medication. How do they determine who should take meds?

  • kwhit
    kwhit Member Posts: 59
    edited September 2016

    I had a surgical biopsy in 2012 with FEA also, I saw a breast specialist who agreed with the general surgeon that removal was the only treatment needed. I would be interested to know if you are placed on medication for that.

  • momof4va
    momof4va Member Posts: 7
    edited September 2016

    That's good to know kwhit. My appointment is at the end of the month. I'll post again then.

  • kwhit
    kwhit Member Posts: 59
    edited September 2016

    Prayers for you!


  • momof4va
    momof4va Member Posts: 7
    edited September 2016

    Thanks kwhit. I see the MO on Tuesday. In the meantime, I also posted on JH Ask an Expert. Here is their response: so no cancer. good news. if you have additional risk factors, like family history, then the MO will discuss tamoxifen perhaps. ADH is a marker for risk. taking it all out doesn't make that risk go away.

  • PBinKC
    PBinKC Member Posts: 3
    edited September 2016

    I am looking for anyone who has gone through multiple biopsies for atypical ductal hyperplasia.

    I am 69 years old, no history of breast cancer on maternal side of family and very little info about paternal side with no bc as far as I know. Nursed last child until he was 13 months old. Have been blessed with good health, no diabetes, high cholesterol, or triglycerides. Mother, sister and myself have been diagnosed with fibrocystic breasts. For myself that issue mostly gone since hysterectomy/oorphorectomy at the age of 52.

    In November 20l2 I discovered a tiny grain sized lump under the skin of my left breast. By February 2013 i had been through mammograms, us, Mri of both breasts and 9 mammatone biopsies in both breasts with removal of benign tumors in left breast and others to watch in right breast. 4 months later as a result of a follow-up sonogram on right breast I underwent a excision biopsy with wire locator to extract unusual cells which were identified as atypical ductal hyperplasia. I had additional excision biopsies in right breast in June 2014 and the most recent March 2016 with wire locator. All of these lumpectomys have been benign. I have educated myself as much as I possibly could and with 15 % chance of these ADH cells becoming cancer I continue to have these things removed.

    I just had my 6 month follow-up mammogram on right breast on Sep 16. This was my first 3D mammogram. Naturally I was stunned when the radiologist came in and told me the last biopsy missed some cells in the same area but noticed groupings of calcifications deeper into the breast and is recommending another excision lumpectomy this time with two wires. Twice in one year is really stressful on my body! My surgeon recommends reMoval but has given me the option of waiting 6 months if I want. I feel like I am on a rollercoaster with is ADH. I am afraid that if I don't have this surgery this will be the one that turns out to be cancer. I am hoping that someone has been through this can give me some insight.

  • candi07
    candi07 Member Posts: 188
    edited October 2016

    PBinKC so glad I saw your post. I had an MRI guided biopsied 2 weeks ago in 2 areas of my right breast. Both are atypical hyperplasia and atypical apocrine metaplasia. The surgeon says they are nothing to worrying about and doesn't think surgery is necessary. I said based on my research I've read that once these types of lesions were removed the path report came back cancerous she agreed that has happened. I opted to have them removed. Surgery scheduled for next Wednesday. I have the same fear as you.

  • Kayla7
    Kayla7 Member Posts: 1
    edited June 2017

    I had a needle biopsy that shows flat epithelial Atypia (FEA) with calcifications which is a benign atypia. Met with surgeon and he wants to do a excisional biopsy although said no rush so I'm waiting about 7 weeks so not to mess with some planned vacations. They don't seem too concerned but thinks the surgical biopsy is necessary to make sure other rogue cells aren't hiding. I went for my first MRI and just got the results. The verbage doesn't really tell me anything useful but I don't know all the medical terminology and nothing useful came up upon googling it. It talks about possible "enhancements" near the spot they biopsied etc. says it could be diseased tissue or post biopsy changes (it's only been 2 weeks since the needle biopsy). So ....I'm Sharing in case others have case have been through this. To be continued....

  • kwhit
    kwhit Member Posts: 59
    edited June 2017

    So I am also wondering do any of you ladies have 3d mammograms? Its time to set mine for this year and the breast specialists said I might want to start having 3d mammos but didnt have to, so Im trying to decide......

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    kwhit - it's often the insurance company that decides. Most people start out with a screening mammo and are called back for a diagnostic mammo & maybe an ultrasound if there are questions or grey areas. I don't see any previous diagnosis & treatment for you so I can't really make a recommendation.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited June 2017

    it might also be an insurance coverage issue. You should look and see if the 3D is covered for you or if you have to pay the difference. I have 3D now, and they're really nice and sharply detailed. Also supposed to be good with denser breasts.

  • kwhit
    kwhit Member Posts: 59
    edited June 2017

    MTwoman, I have dense breast, have had a surgical biopsy that showed FEA in 2012, then in 2016 I had a call back that turned out to be a cyst. I think I can have it, I would have to pay the difference, which at this point I dont mind doing if it will decrease the risk of call backs because we all know how stressful that is!

    Kayla7 please keep us updated. Praying for more benign results for you!

  • Sweet_Pea
    Sweet_Pea Member Posts: 178
    edited June 2017

    It seems that ADH ( atypical ductal hyperplasia) can be somewhat tricky. In May I went in for my routine ultrasound/mammogram (my older sister had breast cáncer at age 32 AND age 41, so for me the screenings started early), and since then, for the first time, I got called back (it came back BI RADS 0) and have had:

    1. MRI with contrast, BI RADS 4, right breast

    2. vacuum-assisted, MRI-guided biopsy. ADH.

    Here's the thing in my case, as opposed to some of yours above: they recommended removing it right away, no question, and it's BIG -- almost 6cm across on one side. So I'm actually going to need reconstruction if I want any normal breast on the right side (which I've decided I do).

    Now, I *do* have family history, and a whopper of one (my sister), but the different surgeons I've spoken with have coincided that they won't know if there are any cancerous cells lurking until they do the surgery AND the pathology report is back. I don't want to alarm anyone...after all, most of you haven't had a 6cm área of atypical cells seem to crop up from nowhere in just one year.

    So I'm still trying to pin down the surgical team (I wish they all coincided in their opinions on reconstruction, it would make this all a lot less stressful). In the meantime, things have been pretty hard! So I understand all that testing can be worrisome, but keep going, march on, it's worth it to know you have a clean bill of health or to get to a place where you can plan your next step.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited June 2017

    Sweet Pea, has anyone suggested genetic testing? I would think that you might want to pursue that, since your sister had BC at a young age (twice!) If you decide to get tested, I would strongly suggest that you have the expanded testing, and here's why:

    I have a strong family history of breast (youngest: age 24), colon, uterine, lung and other cancers in my first & second generation family members, both sides. My BS suggested I have the 5-gene test which came back negative for the BRCAs and three others. Yay~!

    But then my genetics counselor recommended that I also have a 25-gene test because of the numerous colon cancers in my family. Well, what do you know~! It turned up TWO rare gene mutations which cause BC and other cancers--in fact, all the cancers represented in my family can be caused by one or the other of these gene mutations! As a result of finding these two rare gene mutations, my treatment plan changed from LX & rads, to PBMX.

    I'm really glad I got the testing. PALB2 and Chek2 are much more rare than the BRCAs, and almost no one outside the Breast Cancer community has ever even heard of them. But in my case, given my family history, the genetics counselor pegged my lifetime risk of 45+%. My 24yo DD decided to get tested and wouldn't you know, she has them, too. In fact, her lifetime risk is 58+%~! It's sad to know that my DD has this, but at least she will have the close surveillance she needs and MAYBE she won't have to go through this whole sordid breast cancer experience.

    I wish you the best.

  • Sweet_Pea
    Sweet_Pea Member Posts: 178
    edited July 2017

    mustlovepoodles, it's interesting you suggest it, because my regular gynecologist mentioned it at the beginning, took it to the tumor committee at his hospital, and nothing ever came of it. All I know in this respect is that my sister tested negative for BRCA1&2. (Yay!) But, like you, others might come back positive, I have no idea.

    I'll mention it to the new gynecologist/oncologist that I'm seeing now and see what she thinks. Both places I've kept pursuing advice from (one is through a reconstructive surgeon who's taken a special interest in my case and the other a gyno specializing in oncology) have decided they need more information (ie testing) before surgery, so that has relaxed me a bit, to tell the truth. I'm all in for more testing. It was the sudden mastectomy that had me thrown for a loop, so to speak.

    Plus, this way I can get the other breast checked out too, since there are things that do show up in the MRI with contrast, and I also have pain in the left breast. I have more pain in my right...although it's not a shooting pain as some describe. It's more of a dull, annoying pain. One doctor told me it was because I have dense breasts. I don't buy it...I've had dense breasts all my life -- it's at least because of the changes in them. Does anyone else have pain? Have you talked to your doctors about whether it's associated with the ADH?

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