ADH in 2006...what happens at a risk assessment?

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flower123
flower123 Member Posts: 144

Does anyone know? I have another lump in the same area. I've had three surgical biopsies, and the first one in 2006 was ADH. So I'm going to Fox Chase CC, and they're going to mammo/ultrasound my new lump, reread my slides, and they want me to see a doctor who will do a risk assessment, but I have no family history. Does anyone know what this dr will do? thanks.

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  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Flower,  don't worry.  You should be included in their high-risk clinic by ADH alone.  You were diagnosed at a young age with that, which will figure in. They will probably do a "BRISK" assessment to derive a "Gail score" to help determine your risk of breast cancer. I think I gave you the link for the "BRISK" assessment in a previous thread.

    Hopefully, your new lump will be deemed to be benign by imaging.

    Good luck. Let us know how it goes.

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Here's a link to a document from the NCCN pdf on risk reduction, including the BRISK tool.

    Breast Cancer Risk Reduction - Breast Care Center

  • leaf
    leaf Member Posts: 8,188
    edited June 2013

    I didn't know this for years after I was diagnosed: breast cancer prediction for individual people is quite a different story than breast cancer prediction for groups of people.  We are in our infancy in predicting breast cancer for individuals.  The Gail model is quite good for predicting breast cancer risk for groups of individuals, but its quite another story to apply these numbers to individuals in that group.  I know that's not what one might assume.  So they know pretty well that, say, 147 out of 1000 women in a population will get breast cancer.  But they have very little idea which women in that group will get breast cancer.  http://jnci.oxfordjournals.org/content/98/23/1673.long

    However, perhaps with the exception of people with a significant family history, the Gail model is the best we have.  (There are other risk models for women with a significant family history.)

    This study shows that even for the *average* woman, the Gail model is 'better than the toss of a coin, but not by much.'  (In other words, about 40% of the time the model is wrong.  Note in a coin toss, the model is wrong 50% of the time, which is worse than 40% of the time, but not by much.) 

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Hi Leaf,

    I wish we could get more individualized risk assessment than the Gail score, but you are right.  These scores are from population studies.  If it's hard to determine risk in your affected breast (even with nomograms, etc.) it's near impossible to determine in the other breast. I know that LCIS increases risk bilaterally, but for those of us with DCIS, it's unclear what the risk is in the other breast (other than the generally cited--twice the risk of the norm--which would be 1 percent per year).  I just had a core biopsy on a cluster of calcs. only because the surgeon was concerned.  It would have been a BIRADS3 but she didn't want to leave it there so it became a BIRADS4 (benign finding). Getting ready for many more of these biopsies over the years.  Had many already (prior to lumpectomies).

  • leaf
    leaf Member Posts: 8,188
    edited June 2013

    I know this is from population data, but in this SEER based study, actually the incidence of subsequent breast cancer (if you add the subsequent breast cancer risk of both breast incidences together) is somewhat higher in the LCIS group than in the DCIS group.  (about 12.5 vs 9.9/100,000 person-years).  Younger, black, and Hispanic  DCIS patients had an elevated risk of subseqent stage III/IV diagnosis than older and non-Hispanic white DCIS patients. http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Hi Leaf,

    I think that Beesie would say that it makes sense that the LCIS risk is higher than the DCIS risk, because the DCIS risk already occurred in the first event (the DCIS diagnosis and subsequent treatment).  In the case of LCIS, the event hasn't happened yet, so the risk is higher.  Once the event occurs, the risk drops.

  • leaf
    leaf Member Posts: 8,188
    edited June 2013

    Thank you so much, ballet!  Its good to other perspectives than my own.  I'll have to read more of Beesie's excellent posts.  Thanks again.

  • flower123
    flower123 Member Posts: 144
    edited June 2013

    Thank you all so much. I'm anxious about my appointment, but not as worried as I was. I posted in another post that my BS told me (and recommended a mastecomy) the wrong diagnosis. I had "focal ALH"--not ADH! From what I have read, ADH is a bit worse, but I'm not really sure. 

  • leaf
    leaf Member Posts: 8,188
    edited June 2013

    You're not alone in being unsure.  Different studies give different risks.  (Of course these are all population studies, so they only give the risk of the group, not the individual.) 

    Note that about 13% of the 'average' women in the USA get breast cancer sometime in their lifetimes.

    For example, this recent study found in this group of ADH, ALH, and LCIS patients, http://www.ncbi.nlm.nih.gov/pubmed/23117858 11.1% got breast cancer in the next 10 years. Then it says that ALH women had 23.7%.  But without reading the paper, you don't know the definitions.  Some authors classify DCIS and/or LCIS as 'breast cancer', and others don't.  Some put put you in the 'breast cancer incidence' group if you got anything worse than what you already have.  For example, in some studies, if you have ALH and go on to diagnosed with LCIS, they call that an incidence.  Since LCIS women obviously already have LCIS, as ballet (and Beesie indirectly) pointed out, if they got diagnosed with ALH or LCIS, it wouldn't count as a worse diagnosis.

    In this study,  about 5% of the ALH patients got diagnosed with 'something worse' in the 6-212 month (0.5-17 year) followup. http://www.ncbi.nlm.nih.gov/pubmed/22847124

    In this study, about 19% of ALH patients went on to get invasive breast cancer at an average of 15 years after diagnosis. http://www.ncbi.nlm.nih.gov/pubmed/16894523.  (Note that some of this data goes back to a diagnosis of ALH in 1950; the treatment of breast cancer has certainly improved since then.)

  • flower123
    flower123 Member Posts: 144
    edited June 2013

    Wow. Thank you so much for that information. It's very interesting to see how different the studies are. I'll update after my appt. on Monday. 

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