Flat Epithelial Atypia

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Sanduchi
Sanduchi Member Posts: 21
edited June 2015 in Benign Breast Conditions

Hi all--Many thanks for this discussion board. You have all given me much reassurance during this "scary" time!

I am 30 years old with only a family history of BC in my maternal grandmother and maternal aunt.

I have had a breast lump on the right side at 12oc for a few years now. I first noticed it in pregnancy, but became concerned after it did not go away post-baby (I did not breastfeed).

I have since had ultrasounds and one core-needle biopsy with ultrasound guidance. The results are what puzzle me as I do not know what to do. The results came back as "Fibrocystic changes with flat epithelial atypia". After consulting Dr. Google, I am a bit concerned.

My surgeon (who I am not particularly fond of) recommends taking out the lump as there is a 10% chance of other pre-cancerous cells lurking around there. However, he is also a surgeon and cutting things out is his daily joy.

I have a very high deductible health plan so even outpatient surgery poses a high cost for me. Obviously, my health is important and if it needs to come out, I will make a way, but I also don't want to jump the gun and take something out that is not clinically significant.

I have considered getting a second opinion but also do not want to make "something out of nothing". Any advice, words of wisdom, information any of you wonderful people can pass along?

Many thanks in advance!


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Comments

  • ballet12
    ballet12 Member Posts: 981
    edited May 2015

    I believe that FEA is surgically biopsied (not necessarily "taken out" in the sense of having clean surgical margins) for the reason that your surgeon stated (malignant cells lurking nearby).  FEA is a form of atypical cells that put one at greater risk for breast cancer, the others most commonly being atypical ductal hyperplasia and atypical lobular hyperplasia.  It is probably not an emergency, but should be done relatively soon.  If you aren't fond of this surgeon, find another one to consult with, and most probably (unfortunately) they will recommend the same thing.  At least, you will know that you are doing the right thing.  I am sorry about the high deductible situation. Keep us posted.

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  • Sanduchi
    Sanduchi Member Posts: 21
    edited May 2015

    Thanks so much for the reply. A family friend sees a specialized Breast surgeon at our local hospital so I may see about getting a second opinion and following up with her. She may have more experience with FEA and I think I would trust her judgment over my current surgeon. I will keep you posted!

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  • Ddw79
    Ddw79 Member Posts: 533
    edited May 2015

    I may be wrong but I think I was told that FAE does not significantly increase risk while ADH and ALH do cause significant increased likelihood

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  • Sanduchi
    Sanduchi Member Posts: 21
    edited May 2015

    Does anyone have any experience with FEA turning into/morphing into ADH or ALH or another pre-cancerous type? I am worried that this is just the beginning of something greater later on. I know benign breast cells/lumps/cysts don't turn malignant, but is this a sort of precursor?

    My surgeon said he had to research FEA and speak to the pathologist before telling me anything, which doesn't leave me very confident. I just wish someone would say, "Yes, I think you definitely need to have this lump excised and biopsied" so I can fully justify paying the money and having it out. All this guessing and wondering has me going crazy, but I am not sure my ease of anxiety is worth thousands of $!

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited May 2015

    Hi,

    I am not sure if this will help you at all but here's my experience. I have dense breasts with fibrocystic changes. The pathology report after my mastectomy showed all sort of changes including ADH, ALH and FEA. Now I am wondering if these changes are present in my other "good" breast. 

    Even though FEA might be benign it is a good idea to have a second opinion and have a biopsy done (if not done already). 

    Keep us posted.


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  • Ddw79
    Ddw79 Member Posts: 533
    edited May 2015

    I had ADH and there was no question in that case about surgical biopsy. I had to have it excised because it is often upgraded to a cancer. The question I think you need to ask is: how often upon surgical biopsy do they see FEA upgraded? A Surgeon should know this

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

    Here is some information:

    http://www.sciencedirect.com/science/article/pii/S...


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  • Sanduchi
    Sanduchi Member Posts: 21
    edited May 2015

    Thanks all for the info, posts, shared experiences...

    I have contacted my PCP who I trust completely. Although he is not a surgeon, he is very knowledgeable about the current research and information and I hope he will be able to give me more information. Also, I need him to refer me for a second opinion with the doctor of my choice.

    I think my main concern now is that I am supposed to have another 6 month follow up with the original surgeon, and I really do not feel that he is concerned enough to deal with the lump. On one hand, he tells me that I should just "watch and wait" and if all is well next time, he will discharge me. Then he changes his mind and says he thinks I should have him excise it. So me, as the anxious patient, is left with a difficult decision. Do I bargain with my health and wait, or do I become over-zealous and have it out?

    I wish these issues would come with an instruction manual. Will I ever find a doctor who will be honest and tell me what they strongly recommend I do, or do I have to make all the decisions? You can hear my frustration... many thanks for letting me vent.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited May 2015

    It is definitely not easy and I wish you find a good doctor that you feel comfortable and supported. Don't feel shy to ask to see as many doctors as it takes until you find the one that you feel good about. 

    Keep us posted!!

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  • Kidella3
    Kidella3 Member Posts: 7
    edited June 2015
    1. I had FEA ,
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  • Kidella3
    Kidella3 Member Posts: 7
    edited June 2015

    I had biopsy with titanium clip left as marker, biopsy showed FEA , doc explained I neede area removed, 4 weeks later I had wire guided excisional biopsy removing area 55x30 mm . Results showed ALH , doc said all removed and need yearly mammogram, also see family risk doc every year. Have what feels like hole in scar like a donut,I rangbreast nurse she said just empty space no need to come in, it's normal... 6 months later ( 3weeks ago) I saw doc for check up and he has ordered ultrasound with my mammogram to check it out. Have that tomorrow.

    Hope this info helps

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  • Sanduchi
    Sanduchi Member Posts: 21
    edited June 2015

    Thanks so much for the reply Kidella3! I really appreciate it and wish you good results tomorrow!

    I was just wondering, did your biopsy only show FEA and then the excisional biopsy showed the ALH? Good thing they got it out!

    Just an update for everyone. My general doctor has made a referral to a breast cancer specialist surgeon who comes highly recommended so I just need to make an appointment. I guess the non-worried part of me keeps putting it off, thinking it is no big deal, but I know it's better to be sure then always wonder!

    I will keep all posted. I am so thankful to all of you for your comments and support!

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  • Kidella3
    Kidella3 Member Posts: 7
    edited June 2015

    That's correct Sanduchi, my mammogram originally showed micro calcification, then Biopsy showed FEA, excisional biopsy showed Fibrocystic changes , FEA and ALH. Doc told me ALH increases my risk for developing breast cancer in either breast. You should definitely have FEA removed. I too have family history 2 maternal aunts and 1 paternal Aunty.

    I will post later and let u know how I get on today.

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  • Sanduchi
    Sanduchi Member Posts: 21
    edited June 2015

    Hey all, just a quick update. I am finally going to meet with a specialist breast surgeon on August 4th. I'm so relieved to know that I will be under the care of someone with a lot more experience in this area. I'm hoping for more guidance and support in figuring out how to proceed.

    Kidella3, how was your appt? I haven't checked the boards to see if there was an update. Hope all is well.

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