dx

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covertanjou
covertanjou Member Posts: 569

I just got a second opinion.  My original dx was LCIS/ADH after stereo biopsy.  After excisional, my BS told me B9, and he would see me in 18 months.

I went for a second opinion, and my biopsy slides were re-read.  I would appreciate your help in figuring out what the path report says:

Atypical ductal hyperplasia and atypical lobular hyperplasia associated with columnar cell changes with cytologic and architectural atypia.

Apocrine metaplasia.

Cystic changes.

Tubular adenosis.

" Immunostain for E-caherin highlights ductal vs lobular differntiation of the atypical epithelial proliferation.  Immunostains CK5/6, 34betaE12, estrogen and androgen receptors have also been used in evaluation of this very interesting case demonstrating spectrum of epithlial proliferations."

The doctor also mention Lobular neoplasia.  So I believe it is NOT DCIS.

My new BS has suggested Tamox since he feels I am at high risk for cancer.  He feels that the path report suggests a "wait & see" approach is too dangerous.

Can someone help me understand the path report?

Thanks.

Comments

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    You have ADH and ALH.  Columnar cell changes are changes that don't qualify as ADH or ALH.  Columnar cell changes are NOT atypical.  http://surgpathcriteria.stanford.edu/breast/columnar_cell_change/

    It is the 'atypical' description that puts you at measurable higher risk of breast cancer.  (Columnar cell change may put you at higher risk, but, if so, its so small of an increase its probably not measurable.)

     E-cadherin stain is used to try to differentiate lobular from ductal.  E-cadherin is thought to be involved in adhering cells together.(E-cadherin contains the name ADHERIN - molecular biologists like to have plays on names like this.  Here's more from Wikipedia which I know is not always the most reliable. http://en.wikipedia.org/wiki/Cadherin) .  It is thought that IDC, that is usually E-cadherin +, is more apt to make tumors because the cells stick together.  ILC, which is normally E-cadherin negative, is thought to more often make sheets because the cells don't stick together. LCIS is normally E-cadherin negative also.

    Lobular neoplasia covers the spectrum of ALH and LCIS.  

    I also do not see any mention of DCIS.

    Some women with ADH choose to get their slides re-read to make sure they are not DCIS. (Perhaps you did this already, or you choose not to do this.)

  • covertanjou
    covertanjou Member Posts: 569
    edited September 2009

    HI Leaf,

     As usual you are a font of knowledge.  Thank you for helping me decipher the path report.

    This is the second opinion.  I have changed BS, and the pathologists working with my new BS  re-read the slides.  Because of this, I am confident that it is Lobular Neoplasia (LCIS/ADH/ALH).  The only thing that is new is that the re-read shows ALH.  My original path report did not show this.

    Do you know what "epithlial proliferations" are?

    Again, thanks Leaf. 

    .

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    The ducts and lobules are lined with epithelial tissues.   Apparently (?) you don't have lobules as a fetus/in early childhood. Epithelial means the skin, and the (often mucous) membranes that line cavities (like the mouth, nose etc.) 

    Proliferation means more cells are growing there.  So in lobular or ductal hyperplasia, you have more cells lining  the ducts or lobes (respectively). 

    This site seems to explain things better in the introduction. Sounds like the innermost cells are epithelial, and the next layer in is myoepithelial.  The innermost epithelial cells tend to be cuboidal, and the next layer, myoepithelial, can be more triangular in cross section.   http://www.breastdiseases.com/benignb2.htm

    I'm learning things here too - I'm not posting from previous knowledge.  I do know that some categories and descriptors can change in pathology over time.

  • upcreek
    upcreek Member Posts: 203
    edited September 2009

    Thanks for the site leaf.  I learned allot too!

  • covertanjou
    covertanjou Member Posts: 569
    edited September 2009

    Leaf,

    Thank God there is you.  Innumerable times someone has posted a question on this board and has been helped by you. I want you to know how much I, and so many other posters, appreciate the time you take to look up things for us and to answer our questions.

    Thank you. 

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    You're very welcome.  I think learning more is one way to help me deal with my anxiety, so it helps me too.

  • upcreek
    upcreek Member Posts: 203
    edited September 2009

    Question for leaf or awb or any other LCIS women:  Does having ADH plus LCIS/ALH increase your risk of breast cancer more than only having LCIS/ALH?

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    Since there is disagreement on the chances of breast cancer for a woman with LCIS, there will be even more controversy in a woman with multiple diagnoses.

    Even if you assume that LCIS confers a lifetime risk of about 30%, this risk is for the entire group of LCIS patients.  30 out of 100 people (approx) will get breast cancer.

     However, if you look at much more widely accepted breast cancer risk models, such as the Gail model, there is a LOT of uncertainty for individuals. If the model is excellent, then when random pairs are selected, one woman with breast cancer and one woman without breast cancer, in every pair, the woman with breast cancer should have a higher score than the woman without breast cancer.  However, in this incidence, only slightly more than half of the women with breast cancer rated higher than their random non-breast cancer pair.

    This editorial points out that even this widely accepted breast cancer risk calculator,the ability of the Gail model to help predict which people will get breast cancer is - only slightly better than a coin toss.  For a full copy of the article, follow the links that are colored brown at the right of this citation. http://www.ncbi.nlm.nih.gov/pubmed/17148763

    Many studies that look at ALH/ ADHbreast cancer risk lump ADH and ALH together.  I think most people agree  LCIS confers more bc risk than ALH or ADH.  Another uncertainty is that in any group of LCIS patients, they are probably diagnosed by different pathogists.  Since the diagnosis can sometimes be difficult, you don't know if all the women in your group really do have LCIS, or do they really have ALH, or something else.

  • upcreek
    upcreek Member Posts: 203
    edited September 2009

    Thanks leaf--as always--much appreciated!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    upcreek---I'm not really sure, but I don't think having ADH in addition to LCIS and ALH increases your risk. According to the literature, ADH and ALH both confer a risk of about 20 to 25% (4 to 5x the base risk of 5%); LCIS confers a risk of about 40 to 50% (8 to 10x the base risk of 5%). The risks for the 3 don't get added together---- your LCIS "trumps" the ADH and the ALH since it is more serious and a step further along the bc spectrum, so your risk is based on the LCIS, not on the ADH or the ALH anymore. We all have our own individual risk factors that come into play as well; my risk is most likely closer to the 50% due to close family history of bc (mom had ILC). But as Leaf said, it is very difficult  for them to predict with any accuracy who with LCIS will go on to get an invasive bc.

    Anne

  • upcreek
    upcreek Member Posts: 203
    edited September 2009

    Thanks Anne:  I thought LCIS was 25% and I'm sorry if we've already had this conversation.

    Patricia

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Patricia-----the exact risk with any of these conditions is very difficult to figure out  .My oncologist gave me a 37% risk overall, but he admitted it was just an educated guess and that he really didn't know for sure with LCIS, since it is so rare.  It's best to talk it over with your oncologist and try and figure out your individual overall risk.

    anne

  • leaf
    leaf Member Posts: 8,188
    edited September 2009

    Predicting breast cancer is very problematic, as the paper I referred to states. For a full copy of the article, follow the links that are colored brown at the right of this citation. http://www.ncbi.nlm.nih.gov/pubmed/17148763

    If you have multiple risk factors A and B, and a model that predicts breast cancer from risk factors A and B, then your risk may be A, B, A+B, smaller than A and/or B, larger than A and/or B.  You need to compare what your model predicts to the group of people that has risk factors A and B.

    Even then, predicting whether or not YOU will get breast cancer is a different story.  As the paper says, because none of the risk factors (except perhaps BRCA and radiation therapy to the chest) can sharply identify the people who will have breast cancer, your Gail model (or other models that add more risk factors than the Gail model) score is a very POOR predictor whether or not you will get breast cancer. 

    Nearly half the time, the person who did NOT get breast cancer got a HIGHER Gail model score than the person who DID get breast cancer.  Adding other risk factors such as breast density improved the model very, very slightly (a few percentage points.) In other words, as a concrete example, almost half of the time, the patient with breast cancer had a lifetime breast cancer risk of, say, 25%, and the person with NO breast cancer had a lifetime breast cancer risk of,say, 30%.  So this model was NOT very good at predicting which person would come down with breast cancer.

    There are other models for people who do have BRCA mutations or a heavy family history.  But for those of us who do not,  there are a lot of unknowns.  In the Gail model and other models, they specifically say that you should NOT use these models to make therapeutic decisions. 

  • upcreek
    upcreek Member Posts: 203
    edited September 2009

    Thanks ladies for your responses.

    Patricia 

  • Joanie207
    Joanie207 Member Posts: 97
    edited September 2009

    Once again, you all are so very helpful. As a 50 yo with LCIS/ALH/ADH, family history, dense breasts and other risk factors I appreciate any and all insights you have provided during the past year as I have struggled with my "options".

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