ER+ but NO PR or HER2 results after BMX

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GreenMonkey
GreenMonkey Member Posts: 666
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello Everyone, 

I was diagnosed with DCIS in right breast and ADH in left.  After a BMX my full path report included ALH and LCIS in both breasts. 

After two seperate biopsy's and one bilateral mastectomy, all I know is that I am ER+ 

When I asked my BS at Memorial Sloan Kettering why PR or HER2 results were not included in my pathology report, I was told they didn't need to run the test because all of my cancer was NON INVASIVE.

I accepted that at the time, but now I have my doubts.

Any thoughts, suggestions, information, advice, would be greatly appreciated.

Living cancer fear free, is a task in and of itself.  

Shannon aka MOnkey

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    Shannon some BS consider LCIS as pre-cancer not really cancer. (Sorry I don't know much about ALH). Also I read that even with DCIS many times it is HER2+, like 50% of the time, but when it goes invasive only about 20-25% stay HER2+. Not sure if that's the same for LCIS too.

    This sounds right though. I would ask your BS to explain why. Remember you and your insurance company pay for treatment and his visit. If you have questions either your BS or his/her nurse should be there to answer these questions. Nothing wrong with coming here but they know your specific case and have the medical degree/experience.

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited April 2012

    Thanks Lago. the ALD and ADH is precancer as well. Atypia in the lobs "L" and ducts "D" - so glad I had a BMX!!! When I asked my BS "why" the first time I was told it wasn't necessary because all my cancer was noninvasive so I can't imagine her giving me any more information.  I feel like I should either seek out another BS opinion or an oncologist.  Thanks for writing back. :)

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    Well she is correct but if you need more explanation that I would talk to her again or her nurse. She had no idea that you want more information unless you tell her. Ask specifically what "non-invasive" means and why these tests aren't important.

    But to be honest those tests are only important as far as treatment. Stage 0 doesn't get Herceptin or Chemo as far as I know. Will you be getting hormone therapy? If yes will you be talking to an Onc about this?

    If in general you find it hard to talk with her I'm sure there are others at MSK. They are #2 in the country for cancer.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited April 2012

    I bumped up a thread for you called something like does hormone status change with age or something similar to that.

    From what my doctors told me, HER2 status doesn''t factor in for pure DCIS.I have read of a few women here and there that have doctor's  using it, but not the majority.And I do not know if those ladies had lumpectomies or mastectomies.

    Non-invasive means that the cancer (DCIS) had not left the milk ducts into the surrounding breast tissue or any other tissues.The same would be true for LCIS. It is contained within the lobules of the breast and has not broken out into surrounding tissue.

    Since your cancer was all noninvasive (it is not within the surrounding breast tissue or other tissue), and you had a BMX, it is my understanding that hormone therapy to stop your body from using estrogen would not be needed. My oncologist who I saw twice, explained that since all your milk ducts (and in your case greenmonkey, lobules as well) have been removed and there was no evidence that cancer broke through the milk ducts, drugs like Tamoxifen, which stops the body from being able to use estrogen (and  your cancer cells would not be able to use estrogen to grow as well), wouldn't be needed.The possible side effects of those drugs far outweigh any minimal,if any, benefits that may occur.

    If you go to the informational pages on cancer here and at The American Cancer Society's webpage, cancer.org, you will find a wealth of very good information on the basice of cancer, breast cancer, treatments, side effects, etc. It sounds like you need someone to explain the basics which would really help you!

    Here is the website for the American Cancer Society:

    http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/index 

    You can also call them 24 hours a day with questions at 1-800-227-2345. I called there and found the wonderful voice that answered extremely helpful! 

    As far as LCIS, it is my understanding that it is precancer, but you may want to go to the forum called LCIS on breastcancer.org.

    There is a lady on here named Beesie, that has written wonderful infromation on DCIS. Look up some of her past postings as well.

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited April 2012

    Thank you Cinnamongirl!.... oops, Cinnamonsmiles :))))  great information.   

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