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Papillary Carcinoma

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  • obsolete
    obsolete Member Posts: 333
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    My doctor said that most MRI's CAN and DO distinguish between fluid-filled cystic and solid masses. MANY papillary tumors are partly cystic (fluid-filled) and partly solid masses, an indicator of the probability of a papillary mass. The problem is that MRI's cannot pick up on many papillary tumors 5mm & under. Skilled radiologists CAN see partly fluid-filled and partly solid masses with active blood supplies on ultrasound & MRI, all indicators of papillary tumors. But you are right, Barbe, excisional biopsies are the only way it seems definitive dx of papillary can be made. Surgery seems to be the only sure method of papillary dx.

    Core needle biopsies are not for us papillary patients, due to seeding risks. Fine needle aspiration needles use smaller needles, so there's less risk of cancer cell displacement, but there's still a small risk of seeding the needle track. The medical community has known all this since at least 2008. I feel very sad for papillary patients who have had recurrence and spread due to this needle seeding. I know that I too am at risk.

  • obsolete
    obsolete Member Posts: 333
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    MRI's can & do distinguish between fluid-filled cystic and solid masses. Ultrasound can see active blood supplies. These are indicators of papillary tumors, many of which are partly cystic and partly solid, having blood supplies. Maybe formal radiological training needs improvement so skilled radiologists can better identify papillary. Core needle biopsies can seed our cystic papillary cancer cells, but there's less risk of seeding with smaller FNA needles. Medicine is imperfect.

    Barbe, I'm sorry that you are one of its victims. We all are, when you think about it.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Imaging can't unequivocally diagnose breast cancer of any kind. It can rate a Birads 5 but nothing more.

  • obsolete
    obsolete Member Posts: 333
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    The Taiwan U report states "IF and WHEN " papillary features are noted/suspicious.... Of course, tumor subtype will only be verified as distinct microscopically.

    What's seen is a growing trend among institutions & medical insurance in promoting lower cost dx methods, I.e. Core needle biopsy vs.surgical excissional biopsy... with costs taking precedence over safety-cost benefits solutions. We 1-2% papillary patients don't fit into the corporate economic model, that is until it's too late when we become BI-RADS 6.

  • rosil46
    rosil46 Member Posts: 2
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    Had an iffy mammo in September, second mammo, ultrasound, then core biopsy in October.  Met with surgeon - pathology of intraductal papilloma.  Tissue also sent to Mayo Clinic (standard procedure) for confirmation of diagnosis, which came back:  intracystic papillary carcinoma, low grade.  Had already decided to have lump (2 cm) removed before IPC diagnosis.  Lumpectomy scheduled for 12/1.  Further treatment depends on additional pathology.  Research is confusing.  I am the oldest of 4 sisters diagnosed with breast cancer -- 2 each at age 50, now 11 & 12 years post-treatment, no recurrence, doing well.  Youngest sister diagnosed at age 43, pre-menopause, deceased at age 54.  All 3 are BRCA negative and each had a different diagnosis.  My surgeon is concerned about family  history & encouraging me to have genetic testing.  Another decision.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Papillary is rare as you know and less than 10% of breast cancer is inherited. I don't see the point of gene testing unless that are going to do something with it. I have a deviant of unknown significance in my BRCA2 so I asked them if they wanted to use me for research of Papillary and they said no. I only did it for my sister and daughter to be tested sooner by mammogram.

  • rosil46
    rosil46 Member Posts: 2
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    I and all 7 of my sisters joined National Institute of Health's Sister Study 10 years ago.  Only 1 sister had breast cancer then.  To the best of my knowledge, it is simply a study of about 10,000 women in the U.S -- no funding for gene testing, mammograms or ultrasounds, etc. (which as the years pass, makes little sense to me).  In the 1970s, my mother told me she had taken "pills" (no name) for water retention.  Started research for connections to breast cancer when the third sister was diagnosed in 2005.  Found European studies about DES and the reasons it was prescribed for pregnant women.  Saw studies of men with genitourinary malignancies and suggestions of possible links to reproductive & breast cancers in women.  Jump ahead 15 years and DES is now listed as a probable cause of breast cancer in daughters of women who took it.  I don't think my mother took it when she was pregnant with me or 4 others of my siblings.  But, am pretty sure she got it during 4 pregnancies -- sisters born 1954, 1955, 1957 & 1958.  The first 3 have breast cancer & the one born in 1958 renal cancer.  Instead of gene testing, I think my mom's medical records from 1949 - 1958 would be far more valuable.  Unfortunately, they have been destroyed & Mom died in 2006 from CPOD. 

  • obsolete
    obsolete Member Posts: 333
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    Rosil, for whatever it's worth, I am a DES daughter also. I, too, have always wondered if those DES drugs had contributed to my having had BC. I'm so sorry about your family history and hope you're having a nice holiday. I send you wishes and good thoughts for healing from your December surgery. Hugs!

  • obsolete
    obsolete Member Posts: 333
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    Intracystic papillary carcinoma: A review of 917 cases

    First published: 25 July 2008

    The California Cancer Registry (CCR), a population-based registry, was reviewed from the years 1988 through 2005.RESULTS.A
    total of 917 cases of IPC were identified. Approximately 47% of cases
    (n = 427) were CIS, whereas 53% of cases had invasion (n = 490). The
    majority of the invasive cases were localized at the time of diagnosis
    (89.6%; n = 439). At 10 years, patients with CIS and invasive disease
    had a similar relative cumulative survival (96.8% and 94.4%; P = .18).CONCLUSIONS.IPC
    is a rare disease. There is no apparently significant difference in the
    long-term survival of patients in the 2 histologically derived
    subgroups of IPC. There is an excellent prognosis for patients diagnosed
    with IPC regardless of whether the tumor is diagnosed as in situ or
    invasive. Clinicians should keep this in mind when planning surgical and
    adjuvant treatments. Sentinel lymph node biopsy may be a prudent way to
    evaluate axillary involvement in patients with IPC. Cancer 2008.

    © 2008
    American Cancer Society.


    http://onlinelibrary.wiley.com/doi/10.1002/cncr.23...

    Pdf report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC25599...


  • obsolete
    obsolete Member Posts: 333
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    http://www.archivesofpathology.org/doi/pdf/10.1043...

    Papillary Neoplasms of the Breast: A Review

    Accepted for publication October 16, 2008

    • Comprehensive Breast Cancer Center, Changhua Christian Hospital, Changhua, Taiwan.
    • j.ejso.2008.06.004. Epub 2008 Jul 21.



  • obsolete
    obsolete Member Posts: 333
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    Feb 1, 2009 ... Nicole Nicosia Esposito MD, David J. Dabbs MD, Rohit Bhargava MD ...

    Are Encapsulated Papillary Carcinomas of the Breast In Situ or Invasive? A Basement Membrane Study of 27 Caseshttp://ajcp.oxfordjournals.org/content/131/2/228http://ajcp.oxfordjournals.org/content/ajcpath/131/2/228.full.pdf

  • obsolete
    obsolete Member Posts: 333
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    http://www.nature.com/modpathol/journal/v27/n2/pdf...

    http://www.nature.com/modpathol/journal/v27/n2/ful...


    Original Article

    Modern Pathology (2014) 27, 194–203; doi:10.1038/modpathol.2013.136; published online 2 August 2013

    Intracystic papillary carcinoma of breast: interrelationship with in situ and invasive carcinoma and a proposal of pathogenesis: array comparative genomic hybridization study of 14 cases

  • obsolete
    obsolete Member Posts: 333
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    Above are 3 links to important medical studies on papillary carcinoma dating back a few years. Also the last link above cites a more recent interesting study. Some had captured older historical data of papillary significance. There have long been medical treatment plans for ALL PAPILLARY CANCER PATIENTS. Yes, even going back to before 2008, regardless of posted rumors. However, there still remains pathological complications and challenges in reading papillary slides. Always get 2nd opinions.

    Reference: https://community.breastcancer.org/forum/96/topics...

    Please always advocate for yourselves, do your own fact-checking and arm yourselves with knowledge from these papillary studies and more. Happy new year with improved health and confidence!

    p.s. I am also one of you, and we are all connected here.

    https://community.breastcancer.org/forum/96/topics...



  • obsolete
    obsolete Member Posts: 333
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    https://www.researchgate.net/publication/292345495...

    Solid papillary carcinoma of the breast: A special entity needs to be distinguished from conventional invasive carcinoma avoiding over-treatment

    Article (PDF Available) in Breast (Edinburgh, Scotland) 26:67-72 · April 2016



  • obsolete
    obsolete Member Posts: 333
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    Am J Surg Pathol. 2006 Apr;30(4):501-7. Nassar H

    Clinicopathologic analysis of solid papillary carcinoma of the breast and associated invasive carcinomas.

    https://www.ncbi.nlm.nih.gov/pubmed/16625097
  • obsolete
    obsolete Member Posts: 333
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    http://slap-patologia.org/wp-content/uploads/2014/...

    Encapsulated Papillary Carcinoma of the Breast: An Invasive Tumor With Excellent Prognosis

    Previous Studies of PCs Including Intracystic (IPC) and Solid (SPC) Variants

    http://slap-patologia.org/wp-content/uploads/2014/...

    [Note: this pdf study includes historical data by case dating back years]

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Hi -

    I haven't been around, and I'm not sure if my experience can help. During my lumpectomy they took sentinel nodes, both of which were clean. So a second operation that removes nodes doesn't necessarily mean anything than the doctors wanting to be careful.

  • obsolete
    obsolete Member Posts: 333
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    Cuddy, good point. You picked up on the fact that some of these papillary studies have shown cases where conventional invasive components were present with clean nodes, but yet some of these papillary patients later developed Mets.

    In my case, 1 out of 4 pathology sites reported no invasive components, but the other 3 did find the invasions (even though the different pathologists could not agree on what the invasive components were). Pathologists are all trained differently. 2nd opinions are crucial.

    Because DCIS is reported to be present in most papillary cases, when pathologists and/or surgeons miss the DCIS, those missed DCIS pre-cancer cells can later develop into conventional IDC when those DCIS cells grow & break out of the ducts.

    My oncologist told me that all papillary tumors first begin as conventional DCIS cells, that's before the cells develop their architectural pattern.

  • Alert2017
    Alert2017 Member Posts: 8
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    I am 65. Lumpectomy performed early Jan. 2017. Tumor diagnosed as invasive papillary ER/ PR + , HER2 +++. Full blown treatment recommended with chemo/ radiation/ targeted therapy. 2nd opinion at a local cancer center diagnosed insitu papillary breast cancer and said the initial diagnosis was incorrect interpretation by the pathologists. They also said no way was HER2 a correct diagnosis since it was DCIS. Neither side budging and both feel very strongly about their recommended therapy, so my slides are being sent to a major cancer center not in our city to break the tie. The good thing is that the surgery was done, nodes and margins are clear. The tumor was solid papillary and 1.8 cm. Anyone ever had this issue with competing diagnosis ; invasive vs DCIS? The argument is this such a rare, curable cancer, chemo/ etc is over treatment to do more than radiation and hormonal therapy. Would love to hear from others.

  • obsolete
    obsolete Member Posts: 333
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    Hi Alert, I'm sorry that your journey brought you BC, but you're not alone. It is hoped you're recovering from your surgery. This dilemma is not much fun, is it! It seems many 2nd opinions do not agree (as it was with me).

    Many of us papillary sisters struggle with treatment decisions. Invasive solid papillary is a complicated DX. What is your specific invasive component? Is it conventional IDC? Mucinous (colloid) carcinoma? Or mixed?

    By the way, your solid papillary cannot be both "invasive" and considered"in situ" concurrently, unless you have separate multiple lesions or if it's in transition from non-invasive to invasive. Perhaps I misunderstood.

    What grade is your BC? And its location? Hugs to you.

  • Alert2017
    Alert2017 Member Posts: 8
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    HI WeareConnected- hoping you would reply. My tumor pathology report from my Home based hospital pathologist: Invasive solid papillary carcinonma. Grade 2, Single focus of invasive carcinoma. NO DCIS present. Also, they ran the receptor tests on both my core needle biopsy and lumpectomy which resulted in triple positive diagnosis. I got a second opinion from big cancer center on my biopsy and at that time, they diagnosed biopsy as In situ ductal carcinoma involving a papilloma, high nuclear grade. After my lumpectomy results, i sent the results to oncologist at the same 2nd hospital. Oncologist felt strongly the papillary cancer was DCIS. The head pathologist who specializes in breast cancer said everyone ( tumor board at 1st hospital, 3 pathologists and another breast pathologist at an adjunct hospital to the first hospital ) were all looking at the slides from "different viewpoint". I have not seen this 2nd report in writing, but the oncologist from both institutions said he labeled it DCIS. Now at 3rd cancer center for 3rd opinion. So 5 pathologists vs the big authority disagree ( many of the pathologists trained at this cancer hospital) My head is splitting as my surgeon warned me it is likely going to come down to me making the decision since the 3rd vote will only agree with 1, right?

    grade 2, upper outer quadrant

  • obsolete
    obsolete Member Posts: 333
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    You could possibly ask your primary team to order the Oncotype DX assay (GenomicHealth
    com) to evaluate your slide(s) with focal invasion. They will confirm your (+++) status with % and provide occurrence projection for treatment management.

    Was your tumor Luminal A or Luminal B? Were your ER % and PR % high? Unless your oncologists are pushing "conventional" standard of care for (+++) without consideration that your invasion (if correct) is unlike the typical garden variety (IDC, not otherwise specified), one might apply the most weight to the Oncotype DX factor.

    Were you given an MRI before surgery? Pappillary tumors located along the periphery of the breast sometimes present in multiples. Small ones under 5mm are invisible on some MRI's, I was told.

    Different pathologists define papillary invasion differently, which is the problem which is maybe why Oncotype testing might be another tie breaker.

  • singlemom1
    singlemom1 Member Posts: 260
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    We are connected- you seem very knowledgeable about this type of cancer i hope you dont mind if i pick your brain. I was wondering if you ever dealt with John hopkins center for Rare Breast Cancers? I am currently being treated at a local oncologists office (considered the best in breast cancer in this area) and am responding well so far to treatment but that can change anytime when you are stage iv and i would like to be prepared with recommended next steps for tx. First time I was diagnosed I went to Dana Farber for 2nd opinioN. They were very surprised by diagnosis and informed me how rare it was. They informed me it was usually a 'well behaved" cancer but recommended oncotype which was 30 so thus I had chemo and radiation. I am trying to make a decision about whether to go back to Dana Farber now that it is metastatic or consult with John hopkins center for rare breast tumors ( which specifically lists papillary) Do you or anyone else on this board have a opinion?


    Alert2017- maybe John Hopkins may be helpful for you as well?

  • Alert2017
    Alert2017 Member Posts: 8
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    A couple of things in my situation. Insurance will not pay for Oncotype if you are diagnosed HER2+++, because HER2 + is aggressive and has to be treated with chemo and supersedes Oncotype. HER2 is not tested when a tumor is InSitu because it is very often positive and if it is In situ, they don't treat it ; it is considered irrelevant. ER +>90 strong, PR+ >40 moderate. I had a PET scan prior to surgery,not MRI.. SInce I am 65 and post menopausal , clean nodes, margin, tumor less than 2, i could easily be treated with only radiation and hormonal drugs. The issue, darn it , is it invasive HER2 + or not! So frustrating!!

    SingleMom- I had wondered about Johns Hopkins as well.Ironically, I am in a major city at a major cancer center, and they are sending my slides to Dana Farber or Sloan Kettering to break the tie. I have been researching this relentlessly ( thanks We are Connected- some great links) and so has my surgeon. To quote him, he was surprised the lack of agreement on treatment for this type. He also said, likely I will have to make the decision which way I am ultimately going because 1 opinion will be different from the other 2 and there doesn't look like clear cut guidelines. It really looks like nuances and who do you trust?

    . Question, even though you had papillary back in 2011 and had chemo / radiation, it came back later as metastasized? I"m so sorry to hear that.

  • IrishLuck
    IrishLuck Member Posts: 33
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    Hi ladies, I am hoping you can advise me as I head into another surgery. I was diagnosed with DCIS way back in 2011 and chose to have a BMX (one prophylactic) after two lumpectomies did not get clear margins. In 2015 I developed a lump which turned out to be a solid Pappilary carcinoma with DCIS present in the sample. I had a lumpectomy with clear margins, and I tried hormone treatment but ultimately stopped due to severe side effects. In December 2016 my MRI showed two suspicious lesions in area of my lumpectomy and a needle biopsy confirmed adenocarcinoma. They did not do a core biopsy. I'm heading towards surgery in March to remove both reconstructed (fat grafted) breasts, as I have been told I had incomplete mastectomies and there is residual breast tissue mixed among the fat. They are assuming these lesions are also Papillary carcinoma, but I've also been told they could be another type of breast cancer. My lymph nodes look clear on the MRI. I'm wondering if I should be pushing for a PET scan? From reading your posts I see that I should get my pathology report reviewed by another institution post surgery. Are there any recommendations of where to have that done? Any other recommendations? Thanks

  • obsolete
    obsolete Member Posts: 333
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    Irish, some of these unfortunate recurrences cannot actually be prevented. It is said that Tamoxifen metabolic rates vary during the daytime and by individual, carrying a mere 3% absolute risk reduction in recurrence. Periods of dormancy don't last forever with pesky Papillary BC, especially those cases associated with conventional DCIS. Papillary carcinoma associated with heavy mitosis seems to be the strongest prognostic factor, next to high grade. You might consider looking into Oncotype DX assay (GenomicHealth.com) NCI cancer centers with dedicated breast pathologists who are worth exploring for 2nd & 3rd opinions. Best wishes with your surgery.

    There can also be conventional infiltrations within the wall of the papillary's capsule, which are in transit from non-invasive to "frank invasion", but not yet invading outside the papillary capsule into stroma. It's important for pathologists to identify such transitions. With more focus on papillary mitosis, high risk cases can be identified earlier, reported in a couple studies. Invasive components always trump the papillary component, assuming the papillary is intraductal. Invasive papillary is extremely rare & misunderstood and controversial.

    Alert, Good luck in reaching some level of consensus. It's unfortunate Oncotype is off the table for you. Is Mammaprint an option? I've heard sometimes those companies work with patients on a cost basis.

  • Alert2017
    Alert2017 Member Posts: 8
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    Irish, as one who hates "shopping around" even I have learned you need a second opinion. Especially in your case. I have learned I was almost the exception to not get a second opinion ( or now in my case, 3rd) so discuss with your drs. They should strongly agree and help you. If not, do it on your own. Most major centers have links with instructions how to start the process for a 2nd opinion at their institution. Start with the pathology slides. Ask your doctors how you can get a second opinion on those. Ask if they recommend where to send them. You may find they regularly consult with others at certain places. If not do it on your own, but do tell them you are doing that. They should be happy to assist. Regarding where to go, do you live near any major cities? Google cancer centers, talk to others. Try to find a top place that you could actually travel to if necessary. I fortunately live in Philly so I have tons of options that I can travel to if necessary. I also have told many friends that I have cancer because I researched how to treat my disease by networking to find the best care . You can find someone who knows someone who was just treated by a top oncologist at a smaller institution and patients who were just treated think they saved their life. If you aren't near a big center you can find names of top doctors by talking to others. Also, I called the major center and asked for the 2 top oncologists, who were totally booked. I then begged them to find me someone with a few grey hairs (LOL). Since too many pathologists were arguing about my case, I had to have someone with experience not just someone who may have started last year at this top center. Luckily, they found me an excellent doctor with enough experience to argue my case and has now gotten me a 3rd opinion. Like WeareConnected said, papillary cancer is extremely rare & misunderstood and controversial. Don't worry about the PET scan, i had it done because I was originally going to have chemo first, then surgery 6 months later. That kind of freaked me out, so they were able to convince insurance to pay and we found it had not spread. Turns out I had surgery first and wouldn't have needed the PET scan to tell me the same thing.


  • IrishLuck
    IrishLuck Member Posts: 33
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    Thank you Weareconnected! I will definitely ask for the Oncotype testing. I will also ask to see if Pathology looks for those transitions.

  • IrishLuck
    IrishLuck Member Posts: 33
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    Hi Alert, thanks for your feedback and recommendations. I am at Stanford, so I feel I am in good hands. I will look into where to get some good second opinions on the pathology.

    So glad that you were able to get yiur third opinion. I hope it helps you.

    So I will hold off on asking for the PET. They would probably say no anyway since I have not even had surgery yet. The report above showing a metastasis after clear lymph nodes and 7 years later is scary though. I guess we can never feel 100÷ sure with breast cancer : (

  • Alert2017
    Alert2017 Member Posts: 8
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    Irishluck- you are in good hands at Stanford, so I don't know how these top centers feel about second opinions- but that is your right as a patient. You should absolutely discuss it with your doctors- as I said, I am now finding it is more the rule among patients to seek 2nd opinions. And definitely ask around. I was shocked how many friends knew of excellent specialists in smaller hospitals. That said, see how your surgery goes, you might have good answers at that time, but do your research now. I am 5 weeks out from my surgery, 1 week since they sent my slides out for the 3rd opinion and still waiting! I think I could be waiting another week until the diagnosis comes back.