Invasive and Rare - Two words I wasn't ready for

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RockysOwner
RockysOwner Member Posts: 3
edited September 2020 in Just Diagnosed

Received the biopsy result. "Invasive Apocrine Carcinoma" it is "rare", less than 1%. It is the "rare" comment most concerning. How am I going be confident in a successful outcome? If anyone has experience in this, please share.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2020

    Hello, RockysOwner. With anything out of the ordinary, I recommend consulting at one of the NCCN (National Comprehensive Cancer Network) institutions. They are the experts who provide guidance to the rest.

    That word “invasive" sounds so awful, but it simply describes cancer that is not in situ; in other words it is outside the duct or lobule in the breast. All breast cancer other than DCIS, sometimes considered a pre-cancer, or LCIS, considered only a marker of risk, gets this description.


    University of Wisconsin Carbone Cancer Center
    Madison, Wisconsin
    608.265.1700
    www.uwhealth.org/cancer

    Make an appointment

    Established and designated by the National Cancer Institute (NCI) as one of the original comprehensive cancer centers in 1973...

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2020

    Here is a link to the list, in case one in a neighboring state is closer to you.

    https://www.nccn.org/members/network.aspx


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  • KMom57
    KMom57 Member Posts: 252
    edited August 2020

    Rockys Owner.I sent you a PM.

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

    Good idea to get a second opinion at an NCI hospital.

    Although we all usually recommend that you don't google, there are a few trusted sites/hospitals. Here's something from John's Hopkins. I also usually trust Mayo.

    If I'm reading it right, these type of IDC tumors "are less likely to involve the lymph nodes, are more responsive to treatment, and may have a better prognosis than more common types of invasive ductal cancer." Sounds positive.

    https://www.hopkinsmedicine.org/kimmel_cancer_cent...


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

    "Rare" simply means that the subtype of breast cancer that you have isn't very common - it represents about 1% of all breast cancer diagnoses (although I saw up to 4% in a couple of articles).

    With approximately 2 million cases of breast cancer diagnosed globally every year, even if Invasive Apocrine Carcinoma represents only 1% percent of all breast cancers, that's still 20,000 cases a year. Or 100,000 cases over 5 years, which is enough that there is an understanding about how to treat this breast cancer subtype.

    "Rare" does not mean bad. In some cases a rare subtype might be associated with worse outcomes but in other cases a rare subtype might present a more favorable prognosis. As per the link MinusTwo provided, Invasive Apocrine Carcinoma appears to be more favorable that similar invasive ductal carcinomas.

    So don't get hung up on the words. Focus on the specifics of the cancer - the size, the grade, the hormone status, the HER2 status, the nodal status.

    Have you talked with a Medical Oncologist or do you have an appointment scheduled? Since this is a rare subtype that is usually either triple negative (ER-/PR-/HER2-) or HER2+ (ER-/PR-/HER2+), getting the entire pathology from the biopsy and consulting with an MO prior to surgery is probably advisable.


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  • RockysOwner
    RockysOwner Member Posts: 3
    edited August 2020

    A big thank you to all who provided positive feedback. I have first appointment post biopsy in a few days with an Oncology Surgeon at the Froedtert & Medical College of WI located in Milwaukee. (My spouse went there for successful treatment of Esophageal Cancer 10 years ago.)

    Hoping for a good outcome with my disease as well. Their Breast Cancer Program utilizes a team of specialists so I'll also be seen by a Medical Oncologist, Radiologist, and others.

    I do however plan on obtaining a second opinion and will probably look to Johns Hopkins for this.

    So - again thanks to all. I expect a better night's sleep tonight.

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

    Best of luck. Please do check back in and let us know how it goes.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    I remember 48 hours after I had my excisional lumpectomy. I went to my appt with my general surgeon, who shared that my dx was "rare and aggressive". I heard those words; then the world went black and I stopped listening pretty much after that. However, after a few days of research, armed with my copy of the pathology report, I realized that ILC isn't rare, but simply less common than IDC--and that the Nottingham score added up to about a high grade 1--not aggressive. His clumsy choice of words caused unnecessary harm, as you can imagine-but doctors can be as bumbling and thoughtless in their exchanges with us as anyone else. On top of that, he was a general surgeon, and spoke out of turn as well since he wasn't specialized in oncology.

    Claire in AZ

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  • RockysOwner
    RockysOwner Member Posts: 3
    edited September 2020

    I now know I have triple-negative; invasive apocrine carcinoma; 1.8 centimetres; grade 3, stage one. I have met with Surgeon and Medical Oncologist who upon clinical examination, do not feel lymph node involvement. Only surgery will confirm.

    In preparation I've visited dentist for teeth cleaning and received the flu immunization. As of now, my treatment plan is to start with surgery; then follow-up with chemo therapy.

    I am awaiting results of genetic testing; and a second opinion...both in process.

    Hoping to finalize treatment plan and set date fur surgery at next appointment September 15th.

    FYI: I am 70 years old; in good health; and continue to follow scientific and medical advice regarding COVID 19 avoidance.



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

    Rocky'sOwner - so sorry for the diagnosis. Glad you've met with a BS and an MO and are getting "housekeeping" things taken care of. I had my BMX at at 67 and my ALND surgery at 69. Although I do have some issues, it's been 8 years. I'm walking 4 miles every morning & basically doing whatever I want (aside from Covid). Wishing you the best.

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