Diagnosed with Atypical Lobular Hyperplasia

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RN-MOM-DOGLOVER
RN-MOM-DOGLOVER Member Posts: 2
edited May 2020 in Waiting for Test Results

Hello! I’m new here and have mostly been just reading. I had a stereotactic biopsy of a focal asymmetry. It turned out to be atypical lobular hyperplasia that they want me to get surgically removed. They also want an MRI to assess the extent, and they said it could upgrade to malignancy from that as well. Which doesn’t make sense to me. Anyways my breast cancer risk is pretty high. My mother has had it twice and was diagnosed the first time at the age of 42. She was never tested for the BRCA gene and I have not been either. Have any of you had this diagnosis? If so how was it handled? Thank you so much for listening. I know it could be much worse. Just a little overwhelming at the age of 31. :-

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    Yes, that is overwhelming for someone whom is only 31.

    I don't know how many ALH people are hanging around the board these days, but if you do a search (see the blue bars on the left side of this page to bring up the Search box) and enter "AHL" as the keyword and specify "Benign Breast Conditons" as the Category/Forum, you will find lots of discussion threads about ALH.

    Or you can just scroll through the Benign Breast Conditions forum:

    https://community.breastcancer.org/forum/148


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  • RN-MOM-DOGLOVER
    RN-MOM-DOGLOVER Member Posts: 2
    edited May 2020

    Hey Beesie! Thanks so much for the response! I've seen your comments and you're wonderful to have around here! I will definitely do a search!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2020

    I had ALH and ADH, and family history of very early onset BC (27). I did high risk screening for many years. Unfortunately I waited too long on insisting on the preventive mx. More was hiding in that extremely dense breast tissue.

    This is a tough thing to deal with at 31, but knowledge is power and you are in a position to to make life altering proactive decisions. Gather all the info you can, then decide on the route that works for you.

    Genetic counseling has come a long way since my diagnosis. FWIW I did Brca testing through Myriad, and multigene testing through Color Genomic. No mutations were found, but that only means no KNOWN mutations were found.

    This is a tough hand to be dealt, but it is what it is. Find the best advisors you can. I’m sure this discovery doesn’t feeling like a blessing, but it very well may be one.




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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2020

    I had ALH about 12 years ago and an excisional biopsy was recommended. My research showed there was about a 20% probability of finding something uglier nearby so I opted to have one. Keep in mind areas of concern are often mixed--DCIS with IDC, . . . , and the biopsy only samples some of the area. I'd also recommend you make sure you stick to your recommended mammogram schedule. I had fallen behind before my 2016 diagnosis. I don't think it would have changed the diagnosis, but I do believe the affected area would have been smaller.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2020

    I had A LH, suspicious for LCIS on core biopsy. Excisional biopsy confirmed LCIS (increased risk condition-not cancer), but nothing worse. My understanding is that an upgrade to cancer on excision is only about 20% of the time. I have had genetic testing since I had a rare (usually not genetic) form of ovarian cancer and it was negative. You will be offered high risk screening protocol (mammo and/or ultrasound and/or clinical breast exam or MRI on a six month rotating basis. You may also be offered tamoxifen as a prophylactic medication, which cuts risk by approximately 50% ( or to about “normal.") Some women, but not most, elect prophylactic mastectomy, but this is not something you need to decide right away, and more importantly, most women with ALH/LCIS do NOT go on to develop invasive cancer. If you are close to a university medical center I would recommend getting into their high risk screening program

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