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Invasive Ductal Micropapillary Carcinoma

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  • brutersmom
    brutersmom Member Posts: 886
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    I had five tissue samples tested before I received a negative her test via fish. Something about a gene that presents itself as borderline her. My first for results were equivicol.

  • reniebeanie
    reniebeanie Member Posts: 3
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    Hello,

    My 50 yo mom had clear and bloody discharge from her left breast, and went in for a mammogram, then a 3D ultrasound, but nothing was seen until she had an MRI. They saw 3 2cm masses, and performed a biopsy that came back with secretory-like findings. Originally, her doctor said it was stage 1, grade 2 and triple neg. He said she had a very good outlook and wouldn't need chemo or radiation, only a lumpectomy. Then he came back and said she would need chemo, and came back again 2 weeks later saying she wouldn't. She just had a double mastectomy 2 days ago. After the surgery, her surgeon came out and said they got all of the cancer and that her outlook with secretory was good. The pathology report just came back today saying that she had 2 tumors in the left breast. One was 0.6 cm and the other was 6 cm. The report says the pathologist found DCIS, cribriform and micro papillary, and secretory types. It also says she is stage 3, and her doctor says she will need radiation or chemo. What I don't understand is how 5 months ago there was nothing on a mammogram, she only had 2 cm masses, was stage 1, and wasn't going to need chemo. Now she has a 6 cm mass, is stage 3 and probably needs chemo. How could they have missed a 6 cm mass? How did it take her doctors 5 months to figure out what was wrong with her? I feel like they have no idea what they are doing, and I need to find her a doctor that has treated invasive secretory carcinoma before. I'll take her anywhere. I don't care if we have to travel to the other side of the country. Any suggestions?

  • brutersmom
    brutersmom Member Posts: 886
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    Do you have a teaching hospital affiliated with a well known medical school that has a cancer center. I would suggest posting in the lumpectomy lounge there are a lot of ladies there from different areas. Do you have a Mayo Clinic or an MD Anderson? I am in PA so I am not familiar with the Minnesota area.

  • Gohan1983
    Gohan1983 Member Posts: 34
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    Invasive Micropapillary Carcinoma: Tumor Characteristics and Cause-Specific Survival in Comparison to Ductal Carcinoma Courtney Lee1 , John Rescigno2 , Alison Estabrook1 , Beth Freedman1 , Aye Ma1 1 Surgery, St. Luke's/Roosevelt Hospital, New York, New York, United States, 2 Radiation Oncology, Beth Israel Medical Center, New York, New York, United States

    Objective Invasive micropapillary carcinoma (IMPC) is a rare variant of breast carcinoma associated with an increased risk of lymph node involvement. IMPC is thus often considered to yield a worse prognosis than invasive ductal carcinoma, NOS (IDC). However, given the relative lack of outcome data, the prognostic significance of The American Society of Breast Surgeons 73 2014 Official Proceedings IMPC histology remains in question. Does IMPC histological subtype hold prognostic significance independent of stage? Methods From 16 registries of the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database, 935 IMPC cases and 381,197 IDC cases from 2001 through 2010 were identified. Pearson chi-square analysis was used to evaluate differences in presentation of patients with IMPC as compared to IDC. Log-rank test was used to compare Kaplan-Meier cause-specific survival (CSS) by histology. Multivariate Cox regression was used to analyze the independent significance of histology on CSS. Results Patients with IMPC were slightly older than those diagnosed with IDC (age > 50: 80% vs 76%, p = 0.001), more likely to be of a racial minority (32% vs 27%, p < 0.001), and more likely to be diagnosed in the latter 5-year period (70% vs 53%, p < 0.001). Patients with IMPC were less likely to present with metastatic disease (2.6% vs 4.0%, p = 0.03), but were more likely to present with node-positive disease (54% vs 36%, p < 0.001) with 4 or more nodes involved (22% vs 11%, p < 0.001), higher T-stage (T3/T4: 12% vs 8%, p < 0.001), and higher grade (intermediate/high grade: 90% vs 81%, p < 0.001). IMPC histology was more frequently ER- and/or PR-positive (87% vs. 78%, p < 0.001). IMPC patients were more likely to undergo mastectomy (48% vs 40%, p < 0.001), and more likely to undergo postmastectomy radiotherapy (27% vs 21%, p = 0.004), owing to greater nodal involvement. Analysis of all patients revealed better survival with IMPC (5-yr CSS, 91% vs 88%, 7-yr CSS, 87% vs 85%, p = 0.04). IMPC patients with distant-stage disease had better survival (5-yr CSS, 50% vs 31%, p = 0.009). This difference persisted when analyzed according to hormone receptor status (p = 0.01). Of patients without distant disease and pathologically node negative, 7-yr CSS was 97% for IMPC and 94% for IDC (p = 0.3). Of 381 nodenegative IMPC cases, there were only 7 deaths. Of node-positive cases, despite a mean lymph node involvement of 4.7 nodes for IMPC vs 3.5 for IDC, the 5-r CSS for IMPC was better (92% vs 84% p = 0.02). In multivariate analysis of node-positive patients, IMPC was associated with an odds ratio for breast cancer death of 0.66 (95% CI 0.46-0.95, p = 0.02). Conclusion In this study, the largest to date, IMPC was surprisingly found to be the more favorable histology. Stage for stage, IMPC was associated with survival comparable to, or better than IDCSmile

  • amylsp
    amylsp Member Posts: 96
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    Thanks for sharing that!

  • Vildanbt
    Vildanbt Member Posts: 14
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    Thank you for this information. I want to read again and again :)

  • brutersmom
    brutersmom Member Posts: 886
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    Gohan, Do you have the link to the whole article? Thanks.

  • HelenWNZ
    HelenWNZ Member Posts: 404
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    life lover I am interested in how your getting on. My diagnosis is recent and in my pathology reports I had almost the same wordings except it said I had prominant micropapillary features. I too am undergoing the same chemo regime with the added herceptin



  • lifelover
    lifelover Member Posts: 263
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    Hi Helen

    Sorry for not replying sooner but I took a long break from these boards due to some serious anxiety I was suffering.

    Great news though - I'm cancer free!!!! I've had no recurrence and I've been discharged by my oncologist.

    After being discharged I decided to take better control of my bad eating habits and I joined Slimming World - lost 36 pounds since February. And I'm now training for a 5K run.

    Keep positive and live your lives (my best advice) Heart

  • Vildanbt
    Vildanbt Member Posts: 14
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    Hi Lifelover

    Happy to hear from you.

    What the doctors check during your follow-up?

  • lifelover
    lifelover Member Posts: 263
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    Hi Vildanbt

    I had lots of blood work taken. And in the past year I had a full body CT scan, ultrasound of my pelvis and breast (had some scar tissue from surgery that worried me) and an MRI of my brain. I also had an echocardiogram and CT angiogram because of some heart worries (all was okay except for a high heart rate that I developed most likely due to radiation I had 20 years ago).

    It seems that my doctors will refer me for a scan if I have symptoms and they are quick to refer me. I'm quite vigilant. My blood is tested once a year and more often if I have a specific complaint.

  • Mariangel43
    Mariangel43 Member Posts: 45
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    Hi, ladies, I was diagnosed on April 28 with a rare mix of micropapillary, lobular, and ductal components in my inflammatory carcinoma. The name is inflammatory ductal carcinoma with micropapillary and lobular features. I didn't know this site existed. I had unilateral right mx and now I am developing a cyst and microcalcifications in my left breast and an intramammary lymph node on the left side that has grown more than usual. Right side in last CT without contrast was "clean". My BS asked for another US (around September) because the cyst and the node were not seen in mammography. Only one of three nodes in SNB was affected in right axilla. I feel lucky when I read about the lymph node involvement. Well, I hope I'll last more than 10 years but I feel blessed if I can survive with this type of cancer.

    Good night, ladies. Hope to hear from you all.

  • Jackie78987
    Jackie78987 Member Posts: 1
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    Hi, I see that this topic has been around for many years. Ladies, I hope you are are well SillyHeart


    I was diagnosed with stage 2 grade 2 Triple Negative IDC last September 2016. I had 6 rounds of FEC-T (standard UK therapy), lumpectomy on 1st Feb, then radiotherapy. Active treatment finished 3rd April.

    After my op my surgeon gave me a limited overview of the pathology results that was not helpful at all. It was apparent that chemo didn't work, but no one actually said so. So, I requested a copy of the full report, and it turns out I have 'pure' Triple Negative Invasive Micropapillary Carcinoma, and it stayed the same size throughout chemo, as did my overly enlarged lymph nodes. I had LVI, that no one had mentioned, as well as extranodal spread. Not one of my 'team' has explained these results to me, or talked about any treatment options. The breast cancer specialist nurse actually said, in an amused voice " well, its not like its rare, or anything" then couldn't find it in her book. I have since found out that the Micropapillary structure was identified at the original biopsy, and I feel so betrayed by them, and I just can't trust them.

    Has anyone else out there got Micropapillary lacking receptors (triple negative?).

  • Marksgirl
    Marksgirl Member Posts: 20
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    Jackie

    How unbelievably frustrating! I am amazed at how rare micropapillary seems to be with so few BCO participants. I think it is probably under diagnosed and the incidence will rise as labs learn to identify it, I had extensive LVI and my tumor was extremely vascularized, bled like crazy during biopsies, needle locs etc. I think the localized spread is characteristic of micropapillary. The biggest conclusion I have found after research on "scholarly studies" is that, while the first statistics were very discouraging, the more recent studies are much more positive with outcomes correlating with similar stats to the non micropapillary population . Some websites simply regurgitate old data, check the studies that they reference to see if they are up to date. So I hope you find help with the triple negative boards, stay steady and hugs to you. There are many women with very scary stats that have been here a long time and are doing well. I hope you can find MDs that will be upfront and clear with you!!

    We are here, even if we are quiet,

    Love Jenny

  • brutersmom
    brutersmom Member Posts: 886
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    Jackie,

    Have you considered a second opinion. I had an aggressive version on Micropapillary CA. Mine was hormone positive.

  • Chersstory
    Chersstory Member Posts: 5
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    Oh my goodness!! That is me, I am so excited to find someone else who is fighting the same type. If you have any information you can share I would love to hear it!!

  • Chersstory
    Chersstory Member Posts: 5
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    Me!!! Far out, I have been fighting this for three years, I have found very little research or data...my team dont really know what to do....I am so interested in anything you have to say!!

  • Gohan1983
    Gohan1983 Member Posts: 34
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    https://www.ncbi.nlm.nih.gov/pubmed/29072365

    That clears up many doubts...

  • scaredb
    scaredb Member Posts: 3
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    Hi Gohan.

    That report is a great read. Thank you for sharing

    Scaredbunny

  • Sportymom
    Sportymom Member Posts: 40
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    Did anyone receive information that they had micropapillary features in ONE of their lymph nodes?

    I have what seems to be very aggressive disease as I am Stage IIIA, Grade 3, 4/4 sentinal lymph nodes positive; three macrometasteses (largest one being 10 mm) and one micrometasteses. One of them had micropapillary features in it. There was also LVI present but no extranodal extension identified.

    The biopsy stated that there were micropapillary features in the original tumour which was <1 cm squared by US. After surgical resection, my tumour(s) were 11mm and 2mm in size but the pathologist labelled it as IDC-NOS.

    I am in an absolute panic as I have my bone scan and CTscan coming up. I am not ready to die and want desperately to see my kids grow up.

    According to the research the smaller tumours and higher LNM are poor prognostic factors.

    I am at a loss of how to deal with this. How do I remain strong and hopeful?

  • rlmessy
    rlmessy Member Posts: 97
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    Hello,

    Posting here as well as the "high-risk" page. Just received initial biopsy report that is showing "invasive micropapillary carcinoma/dcis." Got only a verbal report as we were trying to get an MRI of breast ordered and pre-auth'd with insurance. First team appointment next Thursday. Is anyone still active on the board with this dx?

  • brutersmom
    brutersmom Member Posts: 886
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    RLMessy, I am not on this site much anymore. I was diagnosed in 7/29/15 with a 6mm IDC right Stage on grade 3 ER+/PR+, HER2- by Dual. I had surgery twice. I have no family history of breast cancer. I did radiation Therapy. I took Arimidex (anastrozole) for about 14 months and stopped due to un-manageable side effects. I was over weight so I started working and a eating healthy. The Dr's at the hospital wanted me to do Chemo Therapy as a precaution. I declined that treatment. I am 4 1/2 years out from my diagnosis. I do go to the gym regularly and work out with many younger women. I do me best to keep up with them. I am also still working. I wish you well with your treatment plan.


  • Yogatyme
    Yogatyme Member Posts: 1,793
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    Rlmessy, I am still on this board frequently. I had surgery in Aug, so not that far out. Let us know your treatment plan.

  • brutersmom
    brutersmom Member Posts: 886
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    I have returned to this site after being here of and on for 6 years. On January 3, 2022 l learned that my cancer had returned to the pleura of my lung. I was diagnoses in June of 2015. I started on Ibrance and letrozole on January 19th. I had 2 thoracentesis during that time with 1200 plus ml of fluid removed. After starting on Ibrance and letrozole I had a third thoracentesis and they remove 400 ml. At this point, they feel like the drugs are working. I feel that it was caught early. Tests show if has not spread. Right now I am moving forward one day at a time. I am 70 still working part time and how that I will continue that for many more years.

  • irishlove
    irishlove Member Posts: 478
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    This thread hasn't seen posting in almost a year. Just wanted to add some of my history with this subtype of b.c. I was originally diagnosed with Encapsulated Papillary Stage 0. 4 years later, March 2023, I became metastatic in my lungs and bones. It is now considered micropapillary. Something I've learned from other posters is that ER+ can become ER- and obviously b.c. can return even if you are Stage 0. Not trying to frighten anyone, but it's important to have follow up screenings, even if you feel it's not necessary.

  • jojo1025
    jojo1025 Member Posts: 1
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    Posting here in hopes there are still some that check the discussion. I was recently diagnosed, 12/23, with an IDC w/ micropapillary features grade 3 and DCIS micropapillary type grade 2-3, Triple+. My treatment is slow-moving as they are still getting all my scans and blood work done. After talking with the first oncologist they seem to be more focused on the Triple+ /HER2+ status than the micropapillary aspect of it. I will be getting a second opinion soon, hopefully this oncologist will have more information.

    I am curious to know how others' treatment is going or went. Why did you opt for the mastectomy? My surgeon recommended the lumpectomy. I have read a few reasons for the mastectomy, but I don't think I will fit into this category, but still waiting on my genetic results.

  • moderators
    moderators Posts: 7,966
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    Hello @jojo1025, and welcome to Breastcancer.org! We're sorry to hear about your recent diagnosis, and thank you for reaching out to our community. We know there's a lot to deal with right now, but members here have all gone through different treatment paths, and their insight can be really helpful. Hopefully you'll get answers soon!

    If you finally decide to see another oncologist, you can read much more about Getting a Second Opinion at the main Breastcancer.org site, including why, where and when to get them, and what to expect.

    We hope this helps!

    Best wishes,

    The Mods