ADH at young age, genetic testing?

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kathryni
kathryni Member Posts: 73
edited June 2014 in High Risk for Breast Cancer
ADH at young age, genetic testing?
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  • kathryni
    kathryni Member Posts: 73
    edited May 2008

    I had an excisional biopsy (ended up being a quadrantectomy of my right breast) on 4/22 and got pathology back last week showing ductal hyperplasia and atypical ductal hyperplasia (as well as fibrocystic changes and a benign surface cyst). I have no risk factors (no family history) and am only 24 years old, so it was kind of a surprise and has knocked me for a loop. A couple of people have suggested getting the BRCA testing done to see and I'm just curious if anyone here knows whether that would be worth the cost. If I have no family history, is there much chance that I have the genetic mutation?



    Also, has anyone been diagnosed with ADH at a young age and not had a recurrence afterwards? I'm set up to be monitored every 6 months with ultrasounds and I know that we're on top of it, but I've been doing research, but there's not a lot of good news in what I've been reading. I know statistically speaking, the odds are still in my favor for not developing breast cancer after an ADH discovery, but I just haven't come across a real situation of that happening the way it seems it should.



    Thanks to anyone who can help.



    Kat

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  • leaf
    leaf Member Posts: 8,188
    edited May 2008

    Once you are through the excisional biopsy and it is benign, statistically, your chances of breast cancer go down.



    There is less information about atypia at a younger age. In one recent paper, it looked at MRI screening for women with LCIS and atypical hyperplasia. In a 6 year study, of 125 women with atypia (ADH or ALH) and 252 with LCIS, 3 of the atypia patients and 11 of the LCIS patients got DCIS or worse. If you just stick these numbers in a calculator, this ends up being about 0.4% per year for atypia, and about 0.7% per year for LCIS. (Port et all, Ann Surg Oncol 14(3) 1051-1057 (2007) http://www.ncbi.nlm.nih.gov/pubmed/17206485?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum The age of the women in this study was 25-74. The youngest woman with atypia who got 'anything worse' was 56, and the youngest woman with LCIS who got 'anything worse' was 39.



    If you take these numbers and multiply them by your lifespan, if you expect to live until age 80, then (obviously making a whole lot of assumptions), (80-24) x 0.4 = about a 22% lifetime risk for breast cancer, which is about 1 in 5. (This is making lots of assumptions.)



    You can also stick your numbers into the Gail model. http://www.cancer.gov/bcrisktool/



    But do be aware how much uncertainty there is about the Gail model. The Gail model pretty accurately predicts how many women in a population will get breast cancer.





    But it is really lousy at predicting which INDIVIDUAL women will get breast cancer - to make clinical decisions about any particular patient. If you look in hindsight and compare the Gail model scores of individual women who ended up having breast cancer, and individual women who ended up NOT having breast cancer, their Gail model scores were usually only slightly different- the breast cancer woman had a higher score less than 60% of the time. So it isn't good at predicting if YOU will get breast cancer.


    *****
    Then the question of getting BRCA testing. It will depend on your family history, and what your family tree looks like. If you have fewer people in your family tree, and fewer women, then it may be valuable to get your family tree evaluated by a board certified genetics counselor.

    Here are some recommendations about genetic testing, from a different thread in this forum.
    This study says that families with a truncated family tree need to incorporate this uncertainty in the decision. http://www.ncbi.nlm.nih.gov/pubmed/17579227?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum


    These are the guidelines for BRCA testing by the US Preventative Task Force.

    http://www.guideline.gov/summary/summary.aspx?doc_id=7784&nbr=004489&string=BRCA+AND+testing




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  • kathryni
    kathryni Member Posts: 73
    edited May 2008

    Leaf-



    Thanks so much for all the information and links. Everytime I begin to feel alone or lost, I post here and someone like you shines a light and suddenly I feel found. I cannot thank you enough. I know that there's still vast quantities of uncertainty, but it is really nice to have some information and good links to go through.



    I think I've been most frustrated by my inability to control the situation, so researching and trying to understand more has been my small way of trying to regain control of my universe. It's slow, but it's definitely helping.



    Thanks again, really.



    Kat

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