Don’t know what any of this means!

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AmericanInIreland
AmericanInIreland Member Posts: 16
edited March 2020 in Just Diagnosed

Hi everyone.

Picked up my reports from the MO today so I can take them back to the USA with me this weekend. Not sure I understand what some of this is...

Her letter states:

The biopsy confirmed invasive lobular carcinoma. Grade II-III. The tumor was ER/PR positive and HER 2 is ++ with FISH awaited.

Pathology report states: Invasive carcinoma with ductal and lobular features. Provisional grade 2-3. B5b

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  • BevJen
    BevJen Member Posts: 2,523
    edited March 2020

    Dear AmericanInIreland,

    So, I'm not an expert here, but I can figure out most of what's in there.

    The invasive lobular carcinoma means that you have cancer that started in, and has now broken out of, the lobules of your breast. (This is as opposed to cancer that originated in your breast ducts.) Lobular cancer is a much smaller category of breast cancer than ductal -- about 15% of all breast cancers. The grade of the tumor relates to growth rate of the cancer -- lobular is using slower growing than ductal cancer. Grade iii is fast growing, so yours is between that and II, so maybe a little bit slower. ER/PR positive means the hormonal status of the cancer cells. Most lobular, I think, would be the same. HER 2 + would be unusual, I think, for lobular -- I think most lobular is negative? (Mine is.) The positivity would open up other treatments for you.

    not sure why your path report reads as it does, unless you have mixed lobular and ductal. I think the B5b relates to a Birads reading, but I'm not sure -- from what I understand, Birads is determined usually on initial testing to determine suspicion of cancer.

    You could also search this site to see if you can find djmammo, who is a radiologist who answers people's questions. Not sure if he would comment on a path and doc's report, but you can try -- usually he comments on mammograms.

    Good luck. There are many treatments available for this. Best advice is to get yourself to an NCI-affiliated hospital (there are 50 in the US) -- they are likely to be large teaching hospitals (e.g. Hopkins, Memorial Sloan Kettering, etc.) rather than heading to a community oncologist.

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  • AmericanInIreland
    AmericanInIreland Member Posts: 16
    edited March 2020

    thank you so much. It really helps to understand this a bit!!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    American - you need to pick an oncologist as soon as possible. If you are truly HER2+, they will likely do chemo before surgery.

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  • AmericanInIreland
    AmericanInIreland Member Posts: 16
    edited March 2020

    thanks so much for the advice! I’ve got one here in ireland who is recommending MRI next followed by surgery. I’m heading to Colorado tomorrow with an appointment on Tuesday and my Irish records in hand

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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited March 2020

    American - safe travels. Sending you positive prayers.

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  • AmericanInIreland
    AmericanInIreland Member Posts: 16
    edited March 2020

    thank you!!!!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    Yes, if you haven't had an MRI, that would likely be next. My MO also recommended a PET/CT before moving forward. Still - after testing the protocol in the US with HER2+ cancer is generally chemo before surgery. That way hopefully the progression is stopped first which is important with a fast HER2+ cancer.

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

    AmericanInIreland,

    At this point your cancer is HER2 equivocal, correct? It's 2+. That's actually very common with IHC testing, which is usually the first testing done to determine HER2 status. IHC HER2 testing has a rather narrow negative range, and a very large "equivocal" range. When HER2 is equivocal on the IHC test, it is sent for FISH testing. This is a more expensive (which is why it's not done first) but more precise and accurate test.

    In the end, only ~30% of HER2 samples that are 2+ on IHC testing end up being HER2+ on the FISH test. So while it's possible that your cancer might be HER2+, it is more likely that in the end you will end up being HER2-. In that case, unless your tumor is very large, it's unlikely that chemo would be done prior to surgery. And if you are Stage I or II with an HER2- cancer, usually tests such as a PET/CT or bone scan are not done. They can be - some oncologists order them - but they are not part of the recommended treatment protocol for early stage cancers.

    Have a safe flight!

    Edited to add:

    If your cancer ends up being ER+/PR+/HER2-, then unless the tumor is very large or you have extensive nodal involvement, you may not need chemo at all. Usually after surgery an Oncotype test is run to evaluate the genetic make-up of the cancer cells. An Oncotype score is assigned; every score is associated with a 9-year metastatic recurrence risk. With the score comes a recommendation as to whether chemo + endocrine (anti-hormone) therapy is advisable, or whether endocrine therapy alone is the more appropriate treatment. So without more information about your pathology, it is premature to presume that you need chemo. At this point it's a "maybe yes or maybe no" situation.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    Thanks for the clarifications Beesie.

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