ADH found but no lump...question

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stellarcat
stellarcat Member Posts: 5
edited June 2014 in High Risk for Breast Cancer

Hello!  I am completely confused right now and am wondering if anyone has some advice or information for me.

 I recently had fine needle aspiration to see if I qualify to participate in a flaxseed/breast cancer prevention trial.  I have some family history (paternal aunt with BC, paternal aunt with ovarian cancer, maternal grandmother with BC).  I'm not sure how a typical FNA goes, but they chose 2 spots on each breast and scraped and withdrew 20 vials of tissue.

 The study coordinator called me today and told me that I do fall into the high risk group.  I have atypia with hyperplasia (a Masood score of 15), dense breasts, and the cells observed were splitting fairly rapidly.  She did mention that I might want to go on Tamoxifen, but that ADH didn't mean that I was on my way to a cancer diagnosis.  The notes said that they would recommend screening every 6 months, alternating between mammograms and sonograms.

 My main concern is that all of these atypical cells were drawn out through the FNA.  There was no lump, and I'm wondering how they are ruling out DCIS without taking a closer look.  Am I missing something?  From reading different posts, even people with a lump that is ADH are usually concerned about some possible cancerous cells surrounding the lump...or is that wrong?  I just picture them drawing these FNA's from 4 spots while cancerous cells are lurking in other parts of my breasts.  

 So confused!

 Thanks for any help you can give me,

Krista

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  • ma111
    ma111 Member Posts: 1,376
    edited July 2011

    I am glad you went to the trail!!!!! If your family history breast cancer was ER+ the Tamoxifin will do wonders for you to prevent the hormone fed part of breast cancer from growing. Consider going to you gyne and asking for a breast MRI. It can detect cancer tumors as small as 1mm.

    Did you aunt or grandmaother have BCRA testing done? Ask your gyne about that also.

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  • stellarcat
    stellarcat Member Posts: 5
    edited July 2011

    My study doctor did tell me that she would really like for my aunt with ovarian cancer to get BRCA testing, but unfortunately I don't think that is going to happen.  It doesn't hurt to ask, though, right?  :)

     I was thinking that an MRI would be indicated, too.  

    I'm really glad that I signed up for the trial, too.  My dear friend was diagnosed with BC a year ago (age 33) and she had heard Dr. Fabian speak at a conference.  The study involves the possibility of using flaxseed lignan as a preventative measure for those with high risk.  On one hand, I'm glad that I qualify.  On the other hand, I was hoping that everything looked normal in there and that I wasn't in a high risk group.  

     Thanks for your response!

    Krista

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  • vmudrow
    vmudrow Member Posts: 846
    edited July 2011

    When I was diagnoised with ALH (like yours but in the lobes, not ducts) I was sent to an oncologist who wanted me on Tamoxifen for 5 years.  He said that ALH was precancerous - so you might want to talk to an oncologist and get their take on it.  No gene here, but high risk - I decided to have masectomies because I was afraid what might be lurking in there - good luck.

    Hugs, Valerie

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  • momoschki
    momoschki Member Posts: 682
    edited July 2011

    My understanding of this situation is that the standard protocol would be to do a wide excision following the needle biopsy, to make sure there is no DCIS or something worse in a larger tissue sample.  This was what was done in my case, also with a dx of ADH.  Also, prior to that, had an MRI.  My two cents here is that you should push for the additional treatment and tests.  If there is more ADH than the needle biopsy removed, the rest should be removed as well.

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  • machfowler
    machfowler Member Posts: 33
    edited July 2011

    Hi, can I butt-in with a couple of questions? I haven't heard of a masood score, what is that? Can you explain how it works?

    Also, can others get in on this Flaxseed/BC trial? I have just been told I have ADH, after my fourth biposy in the past 18 years. I also have a sister with DCIS who was diagnosed last year at 42. 

     I am going to an oncologist Monday to talk about Tamoxifen. I will probably try it but I am still trying to learn more about all of the options and risks. I'd also like to participate in a trial and both do my part and maybe get the benefit of a new treatment as well.

     Thanks, Maria

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  • stellarcat
    stellarcat Member Posts: 5
    edited July 2011

    @ Momoschki:  That is my fear about the FNA that they did.  They were just going in for random sampling to assess my candidacy for the trial, so they weren't really shooting to biopsy anything.  The fact that this ADH was found makes me wonder how much more there is and what else could be in there.

     @ Machfowler:  I'm not really too familiar with the Masood score, though I know it is a way to rate risk.  The paperwork that I was given said it is a numerical way to describe the breast, and the range is 6, which is normal, to invasive cancer if your score is between a 19-24.  

     I can't seem to link the study on here, but if you go to clinicaltrials.gov and search "flaxseed lignan", you should see it.  The title is Prevention Strategy for Pre-Menopausal Women at High Risk for Development of Breast Cancer."   I know that they are looking for participants, but I also think you would have to come to Kansas City to the University of Kansas Cancer Prevention Center.  

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  • momoschki
    momoschki Member Posts: 682
    edited July 2011

    Another thought:  I would arrange for a consult with a breast surgeon.  Because your ADH was found accidentally, you need further guidance on what the next step(s) should be.  My ADH was completely removed by the needle biopsy (the results of the wide excision came back totally clean), but this is not always the case.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    I would agree with momoschki.  Often they recommend a surgical excisional biopsy to make sure there is nothing more serious (LCIS, DCIS or invasive bc) in there along with the ADH. If it is found to be only ADH, they may recommend closer monitoring and possibly tamoxifen (depending on your other risk factors).

    anne 

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  • stellarcat
    stellarcat Member Posts: 5
    edited July 2011

    Well, I heard back from the study coordinator, and I was mistakenly specifying the atypia with hyperplasia as ADH, and she states here that they can't distinguish because of the random sampling that they did in many locations on my breasts.  I'm not sure how to take this response...it makes me feel sort of uncomfortable.  Thoughts?

     "The answer to your first question is that we can't distinguish between the two types via FNA. Dr. F doesn't aim for one particular place and we take samples from many different locations during the aspiration. Both types have similar effects on your risk.

    For your second question. Biopsies are generally performed because some sort of architectural abnormalities (such as microcalcifications) were seen on the mammogram. In those cases they are wanting to make sure there is not some adjacent DCIS. In our case, there is no abnormality to resect.

    Essentially the process would be: lump/bump -> sonogram/mammogram -> abnormal sonogram/mammogram -> Biopsy -> Normal/Atypia/Etc.

    Does that help answer your question? So just keep doing self breast exams, have your annual breast exam w/ a doctor and start your imaging as recommended. MRIs are very hard to get covered by insurance unless you are at very high risk (BRCA 1/2 carrier, DCIS/LCIS, etc) because they are very expensive."

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    stellarcat------from what you've written, it looks like they can't specify whether the atypia is ductal (ADH) versus lobular (ALH); but they are correct in that they both confer the same overall risk (approx. 20 to 25%). Also since you had no abnormality (ie: palpable lump or calcifications/etc seen on mammo), they wouldn't know where to biopsy---it would be like finding a needle in a haystack. (I misunderstood the situation before). So their recommendations seem to be right on target----monthly self exams,clinical breast exams  with your doctor (probably every 6 months), yearly mammmos. Those are the standard recommendations for ADH/ALH, sometimes with the  addition of tamoxifen IF there are other significant risk factors, such as famly history of bc. They are right about the MRIs too--it could be difficult to get ins to approve for just ADH/ALH.  I have LCIS (which is a step further along the bc spectrum and double the risk of ADH/ALH) and family history of ILC, and even with that combo of high risk, have to fight with the insurance company to cover.

    Anne 

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  • ma111
    ma111 Member Posts: 1,376
    edited July 2011

    Stellercat,

    The BCRA would be good to ask about. My onc recomemnded it to me because of of other family history, so your aunt had probably already had it mentioned to her by her onc, if she didn't have it done. It is just a blood test that some insurances will cover, mine did. Some newer methods are a swab in the mouth that are not as accurate.

    I like the advise of you going to a breast surgeon. They can get an MRI approved for you if they feel it is needed. The ease of that also depends on your insurance.

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  • stellarcat
    stellarcat Member Posts: 5
    edited July 2011

    The needle in the haystack analogy is perfect, awb. 

     I have awful student insurance right now, so I think my plan will be to get on my husband's real insurance when mine expires in August and THEN go see my OBGYN to get orders for a sonogram/ultrasound.  My friend told me that she could not see her tumor on her mammogram but could see it on the sonogram.  If they still feel that my breasts are too dense, maybe an MRI would be indicated.  We will see!

     

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