Questions about ALH

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Jonijess
Jonijess Member Posts: 15
edited February 2015 in High Risk for Breast Cancer

Hello everyone.

I've been reading these forums for the past few weeks since my saga began and this is the first time I've posted. Everyone is so warm and welcoming, it seems like an amazing community.

Here's my story. I went for my yearly mammogram between Christmas and New Year's. I was supposed to go in September but that's a crazy time of year for me--I'm a teacher--so I ended up putting it off and actually kind of forgot about it for awhile but then remembered in time to schedule it during Christmas vacation. So on December 31 I get the call that they found microcalcifications and I had to go back in for another mammogram. Happy New Year to me. I went the following Monday and I got to have a chat with an incredibly nice nurse as I had to have a core needle biopsy. One spot only, Birads 4, not sure if it was A, B, or C. I went in for the biopsy (not bad at all, really, other than just so surreal) and the next day I got the call. I have ALH, which is benign, but I was told it put me at high risk to develop breast cancer and I have to see a surgeon to have it removed.

Okay. So I went to see the surgeon last week. I am scheduled for an excisional biopsy this Friday. She told me that 25% of the time people with ALH or ADH are upgraded to cancer after this biopsy, which scared me half to death. She also said that if it is the case I will be very fortunate to have found it early, which makes me think that if it is cancer I can hope that it's at a stage where it is very treatable.

Which leads me to my question. Does anyone know what type of cancers are usually discovered with people who have ALH, if they are found on an excisional biopsy? I have very dense breasts, which is also deeply concerning to me, as I've read how much of a risk factor that can be. I have this fear that it's been lurking there for years, and just now has become large enough for them to catch on the mammogram. On the positive side I have no family history to speak of.

So...scary. I know that even if they don't find cancer nearby I will most likely be looking at going on some sort of preventive medication, but one step at a time. I need to get through this next biopsy first and find out the results one way or another so I can figure out what's next. Any advice/thoughts/feedback from those with more knowledge than me would be helpful. Thank you!

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited February 2015

    Hi, 

    Your doctor would be the best person to provide you with a more professional answer.

    I have read that the microcalcification in my case were part of the DCIS and not of the IDC (I had both). I found out that my breast had ALH and ADH after the mastectomy. 

    Hope it is just benign at this point. 

    Hugs! 

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  • Jonijess
    Jonijess Member Posts: 15
    edited February 2015

    I should probably write out a list of questions to ask her before the biopsy on Friday. She asked if I had any questions while I was sitting there last week and I thought of a few, but of course since then more have come up.

    Everything has happened so fast, it's hard to process it all.

    Thank you for your response!

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

    When my core biopsy was positive for ALH it said "ALH, suspicious for LCIS", which it in fact did turn out to be on excisional biopsy. LCIS is just considered a high-risk condition. Sometimes DCIS or invasive cancer is found with it. When cancer is found with ALH it is more frequently ductal than lobular, but not always.

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

    Jonijess-- keep in mind that when they say 15-30% are upgraded on excisional biopsy, that means in 70-85% of cases, nothing more serious is found; so hold onto those #s, they're huge! Take one step at a time, if something more serious is found, you will deal with it then, and we will be here to help.

    anne

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  • Jonijess
    Jonijess Member Posts: 15
    edited February 2015

    You are all so lovely. It is a scary time. I keep telling myself that it could be worse, I could have gotten a diagnosis of cancer from the needle biopsy. At this point, my diagnosis is benign and there is a decent chance that it will stay that way. However there is still a possibility it is not, and I am ready for a definitive answer one way or another, so as you say, I can deal with whatever it is. As everyone here knows very well, the not knowing is awful. My mind keeps going to all these awful places, then I reel myself back in, and then off I go again.

    I suppose that's normal. I appreciate your kind words more than I can say.

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