Anyone switch a type? Papillary Carcinoma - Again

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HOPEsong
HOPEsong Member Posts: 5
edited March 2020 in Stage II Breast Cancer

So I am still trying to navigate how these forums work, but as has been my experience with the six months, I'm not finding much on papillary carcinoma of the breast. The first time I was diagnosed (Nov 2017), there was plenty for me to read up both online and on breastcancer.org to get a handle on my diagnosis and treatment because my original tumor was typed as Invasive Mammary Carcinoma, developing from DCIS. August 2019 I was diagnosed with a "retention of disease", and imaging discovered a tumor of 4cm growing up against my implant, near my sternum, and two secondary tumors below 6o'clock, with positive axillary node. Pathology came back with Papillary Carcinoma. I went back to my original pathology report in Feb 2018 after my first mastectomy and discovered papillary cells had been found floating about the original tumor. But the treatment even so would have been the same: mastectomy. Which I did, and got clear margins. I headed to chemo after the Aug diagnosis and tumor grew straight through two rounds of TC. Nov 2019 I had a second mastectomy, removal of my implant, and removal of 20 nodes, all but one negative for cancer cells of any kind. Radiation was set up and ready to go as of Jan 20. I had a hematoma that developed inside my muscle in Dec, and was surgically evacuated Jan 29. Last week I got pathology back from a biopsy near my most recent surgical site. A 1-2cm tumor of papillary carcinoma has begun to develop again. I have been scanned and ready for radiation TWICE; literally was on my way to my first radiation appointment when I got the results of last week's biopsy. Now I'm headed back to surgery and feel like my surgical oncologist should have been managing my hematoma the whole time too (I was told that the surgeon who closes up has to be the one to follow up after a surgery, which makes logical sense, but my surgical oncologist was really frustrated too). I'm so disappointed and have so many questions! I have started Anastrozole and Zoladex but it doesn't seem it is decreasing the estrogen in my body fast enough to starve the cancer cells.

Is there anyone else out there who has had papillary carcinoma in their 30's? Anyone else have a subtype switch? Response to treatment and what other treatments did you have? Who out there is studying this type from the medical end? (please do not share horror stories because this is my fourth positive pathology and feeling pretty fragile)

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

    HOPE sounds like you did not have chemo? Do you have an oncologist you can talk to? Surgeon's cut - and that's what their trained to do. Sounds to me like this is a case for the tumor boards - surgeons, plastic surgeons, oncologists, radiation oncologists, etc. If you are not at an NCI location, I strongly suggest you find one for a second opinion.

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  • obsolete
    obsolete Member Posts: 466
    edited March 2020

    Hello Hope, I'm sorry that you've apparently been on a rough roller-coaster ride of surgeries, treatments and such. Please don't feel alone because some of us have been there also. First, I would strongly second the recommendation to seek out 2nd and possibly 3rd opinions from only dedicated breast clinicians in surgery, oncology and pathology.

    From pathology, it's recommended that you ask about your tumor's molecular phenotype (for example, Luminal A, Luminal B, etc.) Also ask for the nuclear tumor grade, mitotic index and if there was any LVI.

    It's not uncommon to have mixed subtypes of ductal tumors (IDC, Papillary, etc.), although Invasive Papillary is quite rare. Papillary is a "spectrum" of tumor subtypes of various kinds, which can also be mixed with conventional invasive subtypes at the periphery of the papillary tumors. This thread offers more information on papillary tumors with links:

    https://community.breastcancer.org/forum/137/topics/785782?page=12#post_5483441

    Please take things one step at a time, taking things slow and easy. Best wishes on your upcoming surgery.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2020

    https://community.breastcancer.org/forum/137/topic...

    Link in obsolete’s post “clickable.”

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  • HOPEsong
    HOPEsong Member Posts: 5
    edited March 2020

    MinusTwo, I had two rounds of TC, as mentioned in the post. It did not work. The tumors kept growing right through it, and I have now had three medical oncologists review my case, one locally who has 16yrs of practice with all types of cancer, and two with specialties in breast cancer. The two specialists are not recommending traditional chemo at all because mine is severely estrogen dependent. What is an NCI? I drive three hours for one of the top ten cancer centers in the country.

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

    HOPE - sorry, I missed the two rounds of TC. I'm sorry things are so frustrating. Perhaps you're already seeing experts. Here's the link to find National Cancer Institute designated locations.

    https://www.cancer.gov/research/nci-role/cancer-ce...


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  • HOPEsong
    HOPEsong Member Posts: 5
    edited March 2020

    MinusTwo, thank you and I apologize if I came off as grouchy. I am pretty frustrated, but hopeful that my surgical oncologist can rally the team here. I've already signed up to have tissue samples and blood work go straight to the research team, so maybe my case can end up helping someone else. I followed your link, and my hospital is a comprehensive cancer site listed with NCI. I have been pretty confident I'm getting competent care, it's just that there aren't many women with pap. bc at such an early age. I'm not going to quite tapping into resources at my disposal. There just HAS to be someone out there studying this sub-type and knows how this beast acts. I didn't mention that after the first mastectomy, my oncotype was a 3.

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  • HOPEsong
    HOPEsong Member Posts: 5
    edited March 2020

    Obsolete, thank you for your kind words. As far as the molecular pathology, were you referring to hormone receptors etc? I have been ER+/PR+, Her2- each and every time. Oncotype = 3. Tumor graded as a 2-3. Can you please explain what are mitotic index and LVI?

    I also read your link about the epithelial displacement, and was made aware of needle "seeding" as a concern when I was reading on breastcancer.org the first time around. Planning to ask my surgical onc about that because it fits with a theory I've had, but don't want to get ahead of myself on any conclusions. Every new tumor growth has been localized and in an area in which surgery has already removed tissue. Praise Jesus, the MRI last week shows left side remains normal and no new growth found anywhere else. I have a PET this week to make absolutely sure.

    I'm feeling better today about having to go in for surgery again. I've had two surgeries at that hospital and feel very confident I'm in good hands with the surgical oncologist. She's kind and caring and sassy all at the same time, and does not want to give cancer an ounce of space to budge. She was ready to take out this current tumor with local anesthetic just to get it out of me! haha! (yes, she was serious, but staff and room wasn't available that day, and I told her I didn't think I could handle a local)

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