TN and Apocrine IDC with some DCIS....Anyone experienced this?

efletcher
efletcher Member Posts: 12
edited September 2016 in Triple-Negative Breast Cancer

I was looking over my path reports....seems to be my hobby these days, and saw this. Does this make a difference in treatment? Does anyone know anything about this? I know a little about the apocrine subtype but don't know how it effects my treatment if at all. I wasn't tested for Androgen receptors and I'm very confused cause my onco mentioned nothing about it, so I have to wonder if it changes nothing since I'm still TN. There's just so much confusion with the path reports and I want to be informe, but I feel like I'm losing my mind. If anyone knows anything, I would greatly appreciate it.. TIA

Liz

Comments

  • Ronel
    Ronel Member Posts: 1
    edited May 2016

    Hi!

    I am very fresh diagnosed with TNBC and first found DCIS and then after Lumpectomy they found IDC that's TN.

    All was removed about a week ago.

    From what I understood is that treatment will be aimed at the TNBC not the DCIS.

    I hope I understood you correctly.


    Ronel

  • efletcher
    efletcher Member Posts: 12
    edited May 2016

    Hi Ronal,

    Thank you so much for sharing your experience. I just wasn't sure how they would prioritize it cause I know TNBC is definately not a good thing. So they basically just ignore...not a good word choice, but the only one i could think of, the DCIS..

    Good wishes to you,

    Liz


  • stephincanada
    stephincanada Member Posts: 228
    edited June 2016

    Hi efletcher,

    My biopsy came back as "possible apocrine features". Believe it or not, it seems to be a "good" kind of TN, as it rarely spreads to the lymph nodes. (My ultrasound did not show disease in the lymph nodes, but I will only know for certain after surgery.) See John's Hopkins article using this link: http://www.hopkinsmedicine.org/kimmel_cancer_cente...

    If you don't mind, please let me know what treatment has been prescribed for you.

    thanks so much.

    Stephanie

  • efletcher
    efletcher Member Posts: 12
    edited June 2016

    Hi Stephanie,

    I apologize for not responding sooner. I opted for a bi-lateral mastectomy because of my age and the fact that I hope to never have to deal with this again. I'm also receiving TC (Taxotere and Cytoxan) chemotherapy because I was triple negative. It's 4 treatments every 3 weeks, so not too bad. I hope all is well with you. Waiting for results seemed to me to be one of the more difficult aspects of the fight. Please let me know how you are, surgery dates, and such. Thoughts and prayers to you.

    Liz

  • stephincanada
    stephincanada Member Posts: 228
    edited June 2016

    HI Liz,

    Thanks for asking after me. I really appreciate it. I am having my lumpectomy this Wednesday. Two weeks later, I will receive a more accurate diagnosis than the information that the biopsy revealed. I am PRAYING that it hasn't gone to my lymph nodes and that the margins are clear. I am taking ativan to help me cope with the anxiety.

    My biopsy report also came back saying "possible apocrine features". After my lumpectomy and sentinel node biopsy, my husband asked the surgeon what "apocrine features" means. She said it is just a description of the cells. She added that apocrine and Her 2 positive cells grow quickly. She said the label apocrine was not relevant to anything. My husband said that he had read that apocrine is associated with triple negative. The doctor was completely dismissive and said that was not correct. Said the only thing that shows triple negative is the receptors.


    I had an MRI in November, 2015 that was all clear. My MRI six months later, on May 11, 2016, showed a 1.3 cm tumour (biopsy revealed to be cancerous). This tumour was not detectable on my mammogram. So much for cancer taking years to grow! The only thing I can think of is that I took a medication called Fibristal (aka ulipristal acetate, brand name Esmya in the UK) for my uterine fibroids from mid-November, 2015 to mid-February, 2016. It is a selective progesterone receptor inhibitor. I don't understand how it could have played a role in the rapid growth of a latent cancer, but the timing is just too uncanny.

    Stephanie

  • PeteyCanada
    PeteyCanada Member Posts: 1
    edited September 2016

    Hi Steph, I am also in Canada (Edmonton). Diagnosed with TNBC IDC in June, Left Mastectomy July 18th. My pathology report indicates "aprocrine differentiation" and in brackets (aprocrine carcinoma). I met with an oncologist for the first time last week (Aug 31) and she was also incredibly dismissive about the aprocrine related comments. When I first mentioned it she just said "oh, don't worry about that". I persisted and said that my reading indicated that it related to androgen and asked why are androgen inhibitors not an option. She condescendingly said this was a good question but then just said that they were only used for treating prostrate cancer and definitely would not be used for early stage breast cancer.

    I find it interesting that you have uterine fibroids as I also have these, also the pathology report referenced fibrous cells etc. From what I read fibroids are a symptom of overproduction of androgen in women, as are the production of aprocrine cells in the breast. I am very frustrated by the oncologist's dismissal of this information from the pathology report. I am researching naturopathic ways to inhibit androgen production as I believe that I have all the systems I have read indicating too much androgen in my system.

    Take care!


  • stephincanada
    stephincanada Member Posts: 228
    edited September 2016

    Hi PeteyCanada,

    Thanks for your post. The information you provided is news to me. You may want to pose the question about androgen inhibitors in the TNBC forum. I ended up being HER2 positive, and found the information I gleaned from the people in that forum enormously helpful. The treatments in the U.S. seem to be a bit more advanced and perhaps less conservative. For my type of cancer, American doctors are willing to prescribe a certain medication that has not been approved by Health Canada due to insufficient evidence. However, the evidence that IS out there is very promising. Perhaps something similar exists for TNBC in the U.S. Are you having chemo?

    Best,

    Stephanie

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