b9 biopsy question re: atypia

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Ked1019
Ked1019 Member Posts: 122
edited June 2014 in High Risk for Breast Cancer
b9 biopsy question re: atypia
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  • Ked1019
    Ked1019 Member Posts: 122
    edited April 2008

    I have posted this elsewhere but thought I would post here too. I had a stereo biop which was b9 but atypia was noted. It was not atypia hyperplasia .. just mild/focal. I read where atypical cells can sometimes go back to normal for whatever reason unknown. My surgeon wants to take a wait and see approach but I was informed that when atypia is found on biopsy there is a 25-30% chance there is a early stage cancer somewhere nearby. Okay that leaves me a 70% chance nothing is there. I am unsure as to whether I should continue seeking a 2nd opinion regarding doing a re-excision of that area to see if there is anything else there.

    Anyone here ever have this type of finding and take a wait and see approach? I know this is a really silly battle I am having but I just don't know what to do. I am already having a major duct excision on 4/23 for spont bloody discharge which hasn't been spontaneous in several weeks and is only on expression now. I thought of cancelling that surgery but my dear husband said not to.

    I really am tearing myself up over this bc I don't have anyone knowledgable to talk with about it. I tried my pcp but she said I need to talk with the surgeon. He said no to the re-excision but is putting me on the table anyway and I have the 2nd opinion scheduled but am having second thoughts because I am thinking I am stupid for looking for something that may or may not be there and if it is there it will show in time. Please forgive me as I type this. 

    God Bless, Karen  

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  • flower123
    flower123 Member Posts: 144
    edited April 2008

    Hi!



    I had an excisional biopsy in Sept. of 06 and they found atypical hyperplasia. I had another surgery in Feb. of last year (whole lump out) and I have another surgery on the 15th (whole lump out as well). My surgeon wants to take the whole thing out b/c of the atypia. She says that I'm high risk--so, no needle biopsy for me.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2008

    Ked--a 2nd opinion is always a good idea. Can't they do a re-excision (to make sure nothing more serious is in the area of atypia) during the same surgery to excise the duct???? I would ask the surgeon about that possibility.  Praying you get benign results.

    Anne 

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  • Ked1019
    Ked1019 Member Posts: 122
    edited April 2008

    Anne, that is my main issue. the breast surgeon I saw (who is the best in the area) will not do a re-excision because he said that the pathologist did not recommend it and he is the one that looked at my cells. Further he stated that the atypia was focal meaning there was only a little area of those cells in the specimen. I did not have hyperplasia. I think am going to get a second opinion but was wondering if anyone out there had this same issue where the atypia was only mild rather than hyperplasia. I want feedback on the duct excision surgery and the issue on waiting and seeing what happens with atypia (however mild it is)

     Thanks so much for the reply.

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  • lizzieps
    lizzieps Member Posts: 1
    edited April 2008

    Hi there, this is all new to me but thought I'd share my story with you to see if it helps. I am 34, have been monitored for the last 14 years for a lump which was overactive breast tissue, I have since had 3 children. I went last year for a biopsy and two pathologists found ADH, it was then sent to one of the leading breast pathologists in the country who came back saying I had normal hyperplasia not atypical. In the meantime my surgeon said my options were to 'wait and see', tamoxifen (but he felt I was too young for that and I wasn't happy about that anyway) or a bilateral prophylactic mastectomy and he would support whichever decision I made. I then decided to get a second opinion at the Princess Grace hospital in London where I was told by the professor there that he absolutely would not recommend surgery and I should 'wait and see' and if BC developed they would catch it early and everything would be fine. I actually felt he was too relaxed about the whole thing and it didn't do a great amount for my mental state thinking at some point it's quite possible that BC might develop, so every 6 months for the rest of my life I would go for my checks waiting to see whether it had started.



    My personal feeling is I don't ever want it to start, I don't ever want to be in a position where I have to go through all that treatment. I want to be fit and healthy for my husband and 3 little boys. I now have a lifetime risk of 35%, if I am to believe the 3rd pathologist. Obviously I also had two positive ADH results so I'm still not 100% sure exactly who to believe, and if they are correct (2 against 1) my risk goes up to 52%.



    Over the last year my lumpy area has become too big to remove without reconstruction. I had a sinus infection in January which I ignored and it spread to my breast, pretty nasty and gave me another wake up call. My local surgeon who I'm happy now to stick with, has agreed to carry out the bilateral mastectomy, between him, my husband and I we thrashed out the pros and cons and realised the pros outweighed the cons. No more six monthly checks, annual MRI scans or mamograms every 2 years, in fact when I'm signed off by him, I wouldn't have to go back for 10 years and even then it's just to check the implants are still ok. He told me I would be 99% safe from BC. I've never liked my breasts anyway particularly after feeding 3 children, so he also said he could give me a perfect new pair!



    So hopefully you get the jist of my feelings on this, and I feel privileged to have been given an early warning and one that I can do something about. I am of course apprehensive about my operation on 6th June and am very keen to speak to anyone who has had the same surgery, so if anyone's reading this who has had this surgery it would be great to hear your story too.



    I hope this helps you a little bit and I wish you lots of luck with which ever decision you make.



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  • leaf
    leaf Member Posts: 8,188
    edited April 2008
    Hi lizzieps! I have LCIS and ALH, and ductal hyperplasia (not atypical).

    I went to a major institution, and they said my lifetime risk was somewhere between 10-60%, but probably close to 10%. I don't know if you have a strong family history of bc/oc (if you have a BRCA mutation, that could certainly change things.)

    If you aren't using a bc model that is based on family history, the most common breast cancer model is the modified Gail model http://www.cancer.gov/bcrisktool/ I get 23% (excluding my LCIS.) This assumes risk factors are additive. If you really want to make your heart race, you can put your numbers into the Hall model. http://www.halls.md/breast/risk.htm which ***has not been compared to populations, has not been peer reviewed, and is NOT intended to be used for clinical decisions** where my risk was read as about 80% without tamoxifen.

    You may be interested in this paper about the Gail model, and an Italian model that included information about breast density. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf It is an editorial from a professional journal.

    It says"
    In other words, for 59% of the randomly se-
    lected pairs of women, the risk estimated for the woman who was
    diagnosed with breast cancer was higher than the risk estimated
    for the woman who was not. Unfortunately, for 41% of the pairs
    of women, the woman with breast cancer received a lower risk
    estimate than her cancer-free counterpart. Thus, for any given
    woman, the two models were better at prediction than a coin
    toss — but not by much. "


    "Current breast cancer risk prediction models perform well for
    populations but poorly for individuals. Cancer risk information,
    now readily available through the Internet, can show an indi-
    vidual that she is a member of a group that is at higher risk for
    a cancer diagnosis compared to the average population. This
    is valuable information, but it must be interpreted carefully
    ( 10 , 20 , 21 ) . Both clinicians and patients must understand the nu-
    meric information resulting from breast cancer risk prediction
    models in order to use them effectively ( 20 , 22 ) . Because we still
    cannot predict accurately enough which individual woman will
    or will not develop breast cancer, there is much work yet to do in
    the field of cancer risk prediction. "http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf



    I also was a bit confused about the screening protocol when I was diagnosed. The protocol that I am under, and the protocol at the major institution I visited, was to have LCIS patients get 1 imaging 6 months after a biopsy, and if that is clear, then imaging (mammos) every 12 months, just like the 'average' population over the age of 50. I have clinical exams every 6 months. I know the protocols differ from place to place. Best of luck with your decisions.
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  • eibbed
    eibbed Member Posts: 8
    edited April 2008

    dear lizzieps,

    I have a 2mm dcis which was surgically removed last thursday. On the biopsy they also noted ADH.

    No one mention option of masectomy Just lumpectomy and radiation.



    . May I ask why are you getting a mascetomy.

    I am trying to

    understand all of this. Does adh mean you would eventually get an invasive and you want to prevent it?

    How big of any area was your adh?



    Thanks for helping me understand.

    Debbie

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited April 2008

    If anyone knows of an excellent dr and facility in the Chicago area I'd appreciate hearing about it. I'm also considering Mayo clinic or Memorial Sloan Kettering in New York.

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  • Ked1019
    Ked1019 Member Posts: 122
    edited April 2008

    Timbuktu,

    I suggest you put this question on as a new topic so you will get more of a response. Good luck. 

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  • angelaw
    angelaw Member Posts: 44
    edited April 2008

    Dear Timbuktu:  I went to, and can recommend, the Lynn  Sage Breast Cancer Institute at Northwestern Hospital.  Dr. Seema Kahn is amazing, honest, straight forward and specializes in breast cancer issues. She did my bi-lateral masectomies and I can't have felt in safer hands.

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  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited April 2008

    Dear Timbuktu,

    I also go to the Lynn Sage Breast Center at Northwestern.  It is in the brand new building, Prentis Hospital.  I had no trouble finding my way there (thanks to a GPS), and there was parking across the street for $9 for 7 hours.

    I love the breast center.  Last time I went, they did a mammogram, reviewed the results immediately, decided to do an US immediately, and then sent me to the surgeon.  No waiting around forever.

    I liked my last hospital and surgeon, but the oncologist was new and said, "We don't know what is causing your skin changes, come back in a month and we will redo all the tests."  At that point I switched to Northwestern. 

    However, the oncologists at Northwestern are across the street at the main NW hospital building.

    Before you see Doctors at Northwestern, they will require you to submit your previous mammograms a week or so in advance.

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