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Mucinous Carcinoma of the breast

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Please read my post from December 5. It relates to a person who wrote to Lillie Shockney,RN at Johns Hopkins. In her situation she asks if she should have chemo due to micromets despite having mucinous bc and an Oncotype score of 6. When I was first diagnosed, I wrote to her as well. It bares repeating here that the Oncotype Dx test IS NOT STRONGLY VALIDATED FOR OUR TYPE OF CANCER. That is why the pathology report is paramount. It needs to be validated to guide our care. If you got an Oncotype score that doesn't jive with the path report, then by all means have the path slides re-examined.



    Furthermore, you might get a second opinion as well or ask that your case be presented to a tumor board.



    Good luck.

  • Golden01
    Golden01 Member Posts: 527
    edited December 2011

    Thanks as always for your great information. The statement "Oncotype Dx test IS NOT STRONGLY VALIDATED FOR OUR TYPE OF CANCER" was exactly what the doctor shared when I went for my second opinion. She added that few tumors of less than <1 cm were included in the Oncotype analysis as well. My case was presented to a Tumor Board back in August but that was before we had the Oncotype DX results. For now, I'll work to get a "second look" at the actual slides.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

     Just thought I would repost this.  This is the latest retrospective analysis of the Oncotype DX test for people with rare breast cancers:

    V. Tan, F. L. Baehner, C. Yoshizawa, J. M. Anderson, C. Millward, S. Shak;
    Genomic Health, Redwood City, CA; University of California, San Francisco, San
    Francisco, CA

    Abstract:

    Background: ER+ special histologic breast cancer subtypes are reported
    to be prognostically significant. Here we report the special histologic subtypes
    of ER+ breast carcinoma and associated patterns of observed gene expression as
    measured by the 21 gene Oncotype DX assay. Methods: All tumors from
    6/1/04-3/31/10 were included in the analyses. Central path used WHO criteria.
    Ductal NOS (DC), tubular (TC), cribriform (CC), mucinous (MC) and papillary (PC)
    carcinomas were included. Quantitative expression of 16 cancer related genes was
    measured on a scale from 0 to 15 (relative to reference genes) where a 1 unit
    increment is associated with ~2-fold change in expression. Recurrence Score (RS)
    was calculated as published (Paik, NEJM 2004). Descriptive stats for the RS and
    individual genes [ER, PR, invasion gene group (IGG) and proliferation gene group
    (PGG)] among the different subtypes were obtained. Results: DC accounted
    for 94.6% of 127,364 cases, TC 0.9% , CC 0.3%, MC 3.3% and PC 0.9%. For all
    types a large continuous range of RS was observed. DC had the highest RS. PC had
    the lowest RS. The RS between PC, TC, and CC were not different. PC had the
    highest ER and PR. TC had the lowest ER (may reflect bias in submission for RS
    testing). ER was not different between CC and MC however PR was. The proportion
    with ER+/PR- phenotype was different among the subtypes: TC (8.8%) and CC (8.4%)
    had the lowest incidence whereas MC (14.0%) and PC (14.2%) were more similar to
    DC (15.0%). TC had the lowest PGG expression. MC had lower IGG expression
    compared to other subtypes. Conclusions: Special histologic subtypes are
    characterized by differential gene expression and tend to have higher ER/ PR and
    lower PGG/IGG expression but outlier cases are not infrequent w/in each of the
    special subtypes in this large observational cohort. The variation in gene
    expression, noted by histologic subtype, will be presented in detail.

    The tables don't print so, here's the average recurrence scores for the rare favorable breast cancers:

    Here are the median RS scores:

    Tubular: 14.9

    Mucinous: 15.2

    Cribriform: 13.4

    Papillary: 9.9

    Please keep in mind that for mucinous breast cancer, the sample population used for the Oncotype DX was only 3.3%.  That's a VERY small number...

    The takeaway message from this study is that there are "outlier cases" that "are not infrequent wi/in each of the special subtypes in this large observational cohort."  In light of the recent changes of the NCCN guidelines that sideline the recommendation of using the Oncotype DX test for mucinous and tubular cancers, patients should discuss this study with their physicians.  Likewise, they should show this data to their insurance companies if they are denied the test.  While comforting to know most patients with rare favorable histology breast cancers will fall into the low risk catagory, this study indicates not all will do so.    Hope this information helps the newly diagnosed.  And remember, the Oncotype DX score is just one more piece of information to be used as a tool in deciding treatment.

  • Golden01
    Golden01 Member Posts: 527
    edited December 2011

    Oh my . . . saw my medical oncologist this week and raised the question of getting a second look at my pathology slides. He indicated he felt that whether it is pure or mixed mucinous made no difference and he saw no need for anyone to look at the slides again. In fact, he said whether it was mucinous or not really didn't matter as much as the Oncotype Score which at my last visit, when we made the decision to pass on chemo, he'd indicated the opposite. When I asked about what he learned in San Antonio that might impact my treatment, he shared information about drugs for patients with recurrence that might be approved in the future. All in all, I left the office feeling less than hopeful to say the least. His new phone rang several times druing the appointment and he left the room three times which made it hard for my husband and I to follow through on the list of questions that we had brought along.

    Fortunately, the doctor I saw at the NCI designated center in my state has already responded by e-mail indicating they will look at my slides and present my case to the tumor board. I'll make arrangements today to have my slides sent there.

    Have a lot to do for the holidays but finding a new oncologist probably will be on my list of things to do in the new year. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Thanks for the update Golden01.  I'm glad you're leaving NO stone unturned.  I find it interesting how many oncologists put a lot of faith into the Oncotype DX score, while many others do not.  Some are waiting for more validation from the TailorX trial...which is still ongoing.... I would be VERY interested to hear what the tumor board says.  I recall, over and over again hearing from my doctors how the Oncotype DX score should be used as a tool together with other characteristics in choosing the right protocol for me.

    Enjoy the holidays....

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Another thing.. Golden01... I would NOT appreciate my appointment being interrupted, AT ALL.  I have been blessed with terrific doctors and staff.  You deserve the same!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    http://www.youtube.com/watch?v=q6oelMih6vM

    Here's a video of a pathologist's description of mucinous breast cancer.

  • Golden01
    Golden01 Member Posts: 527
    edited December 2011
    Thanks for posting this video link! A picture is worth a thousand words. Smile
  • NJvictoria
    NJvictoria Member Posts: 45
    edited December 2011

    Thank you so much VR! I enjoyed viewing the muscinous carcinoma video. I had no idea what it actually looked like.....hope all is well with you. It's been one years since my diagnosis. The time sure has flown by! :)

    Vikki

  • tricianneAust
    tricianneAust Member Posts: 153
    edited December 2011

    Hi Golden01, I am amazed at the unprofessional behaviour of the medical oncologist that you have seen, their behaviour indicates that he doesn't focus on your needs, but on his priority. He doesn't need to see the need for a second opinion, you do, therefore he should have taken your concerns as his primary focus. You deserve better attention than that and I am glad that you are getting your second opinion by having the tumour board examining your slides & considering the options. The best gift you could get for 2012 is a cluey oncologist who focuses on the needs of the patient.So some covering prayers for that to happen for you.

    Hi Voracious reader, thanks for the great u tube of mucinous/colloid carcinoma, very explanatory.

    Hi too to NJVictoria, its a year since my op  and I am rejoicing with you, the time has flown.

    So blessings & joy for Christmas, to all who log in, and prayers for a healthier New Year

    Tricianne

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Vikki...Congrats on your one year anniversary! 

    I wish all of my sisters a happy and healthy new year ahead...AND...if there's going to be any surprises in the next year...I hope they will all be GOOD ones for ALL of us!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited January 2012

    Lots of prayers for you all for a healthier, happier New Year. My New Years' resolution is to definitely keep up my continued prayer support for all who log in to the MC site. For all the new women who join us in the year I pray for a favourable outcome for you too. Blessings from Tricianne in hot but wonderful Adelaide, South Australia, 41C today, about 104 -105 F, its summer for sure.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
    Mod Pathol. 2011 Dec 16. doi: 10.1038/modpathol.2011.194. [Epub ahead of print]

    A mitotically active, cellular tumor stroma and/or inflammatory cells associated with tumor cells may contribute to intermediate or high Oncotype DX Recurrence Scores in low-grade invasive breast carcinomas.

    Acs G, Esposito NN, Kiluk J, Loftus L, Laronga C.

    Source

    1] Department of Anatomic Pathology, Moffitt Cancer Center, Tampa, FL, USA [2] Department of Women's Oncology, Comprehensive Breast Program, Moffitt Cancer Center, Tampa, FL, USA [3] Department of Pathology and Cell Biology, University of South Florida College of Medicine, Tampa, FL, USA [4] Women's Pathology Consultants, Ruffolo Hooper & Associates, Tampa, FL, USA.

    Abstract

    Oncotype DX is an RT-PCR-based 21-gene assay validated to provide prognostic and predictive information in the form of a Recurrence Score in patients with estrogen receptor-positive, lymph node-negative breast cancer. Although the Recurrence Score was shown to correlate with several histopathological tumor features, there is a significant proportion of cases showing an apparent discrepancy between Recurrence Score and risk estimates based on the traditional clinicopathological tumor features. In this study, we tested whether a proliferating, cellular stroma and/or admixed inflammatory cells may result in an artificially increased Recurrence Score in low-grade invasive breast cancers. We analyzed the histopathological features in 141 low-grade invasive breast carcinomas, including 41 special type (tubular, cribriform and mucinous) carcinomas, with available Recurrence Score. The tumor stroma was evaluated for increased cellularity and presence of inflammatory cells. Double immunohistochemical stains for pancytokeratin and Ki-67 was performed to assess the cell proliferation in tumor vs stromal/inflammatory cells. The clinicopathological features of tumors with Recurrence Score <18 (low risk) were compared with those with Recurrence Score ≥18 (intermediate/high risk). Carcinomas associated with Recurrence Score ≥18 showed lower progesterone receptor immunoreactivity, increased stromal cellularity and presence of inflammatory cells associated with the tumor. Double immunohistochemical stains showed significantly increased proliferation in stromal/inflammatory cells compared with carcinoma cells in cases associated with Recurrence Score ≥18. A Ki-67-positive stromal/tumor cells ratio of >1 predicted Recurrence Score ≥18 with an area under the curve of 0.8967 on receiver operator curve analysis (P<0.0001). Our results suggest that the presence of increased stromal cellularity and/or associated inflammatory cells in low-grade invasive breast carcinomas may contribute to an apparently increased risk of recurrence according to Oncotype DX Recurrence Score. Careful assessment and correlation with histopathological features in such cases may help in determining the appropriate patient management.Modern Pathology advance online publication, 16 December 2011; doi:10.1038/modpathol.2011.194.

  • Golden01
    Golden01 Member Posts: 527
    edited January 2012
    39 minutes agoGolden01 wrote:

    This article reports on a case of mucinous carcinoma in a 30 year old woman and found to be ER-/PR-. Of most interest to me, was this statement: Only 3-15% of pure variety shows axillary node metastasis compared to 33-46% of the mixed type.

    My pathology slides are at the NCI Designated Cancer Center in my state for a second opinion to see if my tumor was pure or mixed. I am anxious to get the results even though my MO indicates he doesn't see any change in my treatment based on what the results might show. As my husband's Aunt Mildred used to say, we'll see . . .

    J Cytol. 2011 Jan-Mar; 28(1): 42-44.

    doi:  10.4103/0970-9371.76952

    PMCID: PMC3083536

    Copyright : © Journal of Cytology

    Mucinous carcinoma of breast: Cytodiagnosis of a case

    Sangeeta Sharma, Rani Bansal, Anjali Khare, and Nivesh Agrawal1 Department
    of Pathology, Subharti Medical College, Subhartipuram, Meerut - 250 002, Uttar
    Pradesh, India 1Department of Surgery, Subharti Medical College, Subhartipuram,
    Meerut - 250 002, Uttar Pradesh, India

    Address for correspondence: Dr. Sangeeta Sharma, Department of
    Pathology, Subharti Medical College, Subhartipuram, Delhi-Haridwar Bypass Road,
    Meerut - 250 002, Uttar Pradesh, India. Email: dr_sangeetasharma@yahoo.co.in

    This is an open-access article distributed under the terms of the
    Creative Commons Attribution-Noncommercial-Share Alike 3.0 Unported, which
    permits unrestricted use, distribution, and reproduction in any medium, provided
    the original work is properly cited.

    This article has been cited by other articles in PMC.

    Abstract

    Mucinous carcinoma of the breast is a relatively rare, pure form
    accounting for 2% of all breast cancers. Pure mucinous carcinoma of the breast
    has a favorable prognosis. The common age is postmenopausal group. Here, we
    report a 30-year-old female patient diagnosed on cytology as mucinous carcinoma
    of the breast with lymph node metastasis and subsequently confirmed by
    histopathology. In 1 year follow-up, the patient did not show pulmonary or
    distant metastasis and received adjuvant chemotherapy at every 3 weeks
    interval.

    Keywords: Breast, fine needle aspiration cytology, mucinous carcinoma

    Full article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083536/?report=printable

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Golden01... Keep us posted. BTW... You have very good prognostics. And if you've read the literature... The best prognostic for mucinous bc is negative lymph nodes... Which you have. In the study that you cite, despite being both ER -and PR - and having a large tumor, the young woman had only a single lymph node affected. With a very large tumor, you would expect more lymph node involvement...which is more common in traditional tumors.



    I wish you well with active treatment.

  • Golden01
    Golden01 Member Posts: 527
    edited January 2012

    Thank you for reminding me that I do have good prognostics, the doctor I saw for my second opinion said that I have "fantastic prognostics". Finding out if the tumor was pure or mucinous has been one of those things on my cancer "to-do" list and it will be good to check it off. It is easy to slip back into that uneasy arena of when we were first waiting for test results. I'm further down the path now and need to make sure I remember that.

  • livin
    livin Member Posts: 16
    edited January 2012

    I had to share my good news in hopes of encouragement to others facing surgery. I had mucinous cancer in my right breast. After finally getting to talk to the oncologist (doesn't everything seem to take forever) he said I was "medically" cured. No chemo, no radiation (I had a mastectomy, not a lumpectomy). At the end of week 4, I'm going back to work Monday! YAY! And to others who haven't been there yet, I thought the drain removal was going to be very painful. There was NO pain!

    They prescribed an Aromatase Inhibitor, which I will need to take for 5 years (I'm 60 now). I'm interested in anyone taking this and what to expect from it.

    But, it does seem, if one has to have cancer, this is the one to have. The story may be different down the road, but now it feels like a miracle.

    Still in the process of reconstruction, but that is a small bump in the road.

    And, although it's been a while since I was on this board, I want to thank all of you who helped me through that first fearful stage! A big THANK YOU!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Livin...Kiss!!!!

    Glad to hear that you are doing well!

    Like this thread devoted to Mucinous breast cancer, there are several threads devoted to Aromatase Inhibitors. 

    Good luck with your next step of treatment.  Keep us posted.  It's always nice to hear good news!

  • livin
    livin Member Posts: 16
    edited January 2012
    Thank you for the info about the Hormone Inhibitor thread. Seemed a little negative. I'm hoping that's because only people who are having a problem with it need the forum. Kinda like this one. Smile
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Livin... Thanks for the warning. I never treaded there. I haven't had any issues with Tamoxifen. I tend to agree with you. If you don't have a problem....why post? Hope you do as well as I am. Good luck.

  • treegirl
    treegirl Member Posts: 13
    edited January 2012

    Question: know of anyone with this type of cancer who refused treatment beyond surgery? Are there studies of those results? I have pure mucinous, had a successful lumpectomy with clean margins, and am about to begin rads, and supposed to do 5 years of meds. Concerned about side effects of both adj therapies and wondering about options.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Tree girl. Yes. There are women who refused rads and hormonals. It is a tough call. I was told that lumpectomy combined with radiation was mandatory and if I didn't want radiation then I should have considered a mastectomy. Likewise, according to the NCCN guidelines, if your tumor is less than 1cm you can consider forgoing hormonals. Honestly, not sure how aggressive we need to be with treatment. I often wonder if many of us are choosing to be over treated. Bottom line... You really need to discuss the absolute benefits and potential risks with your doctor. Good luck and let us know what you decide.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    There are no studies. There is barely any information in general about mucinous breast cancer.

  • treegirl
    treegirl Member Posts: 13
    edited January 2012

    Wow VR, you are the best informed and always online! I just posted and looked back a mi ute ago to see your reply. I have discussed with docs, they are of course against me stopping here. I figure I will begin rads and see how it goes. If it gets bad then we'll see. I am pretty strong and can stand alot but like you said, just not sure it is all necessary. I hate the idea of all those good cells getting killed along with the cancer.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    I breezed through radiation. I hope I didn't do permanent damage to my heart ... Although they tell me the risk is small. I am also doing well on Tamoxifen... Although I continue to have gyno issues... But those issues preceded my diagnosis. I wish you well. Remember, nothing is written in stone. You can always revisit your decisions. While some might claim they worry about long term effects... That doesn't worry me. More important for me is feeling well one day at a time.



    I am online thanks to my iPhone. Totally addicted. My kids are even worse than me!

  • KARENOSS
    KARENOSS Member Posts: 3
    edited January 2012

    Hi,

    I've refused treament beyond the lumpectomy.  I was told that I would need radiation or a masectomy.  I also did not take the tamoxifin.  My muscinous was 3.5cm.  Lumectomy was 09/09 and so far all is well.   

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Karen...Thanks for posting.  Glad you're doing well.  Keep us posted.  Remember...future journeyman need a map....

  • Golden01
    Golden01 Member Posts: 527
    edited January 2012

    Received the copy of the second opinion pathology report today. The slides from both my lumpectomy on 8/2 and BMX on 9/8 were sent to the NCI designated cancer center in my state. The results weren't what I was hoping for and although the report does not use either "pure" or "mixed" mucinous terms, it's clear I fall into the "mixed". The term used in the report is "Mucinous Carcinoma, Cellular Variant". My orginal pathology report just said "Mucinous". 

    In the comment explaining the term, here's what they said: "We are in essential agreement with the outside diagnosis. The descriptive term 'mucinous carcinoma, cellular variant' may be used to denote the high cell to mucin ratio seen in this lesion. Neoplastic cells are present as large densely packed sheets and clusters. The classic 'lakes of mucin' with few clusters of carcinoma cells, characteristic of the hypocellular variant, are not appreciated in this case . . . The presence of high tumor cellularity has been associated with a less favorable progmosis than that of the hypocellular variant."

     The MO I saw at the NCI center does not recommend any change in my therapy (Tamoxifen for 2.5 years then AI for another 2.5). I'll see my MO where I live but don't believe he'll have recommendations for change either. I decided against chemotherapy back in November and wonder if their recommendations at that time might have been different if we'd had this information then. 

    I appreciate the comments from this forum that helped me realize that I needed to get a second look at the actual slides. They had indicated my case would be presented at the Tumor Board but I don't think they went ahead with that plan. The report indicates the results were reviewed and the diagnosis approved by consulting departmental surgical pathology staff. 

    One of the things I work  hard at is having enough information to make good decisions so I don't second guess myself. I appreciate all of you helping me in that process.  I'm heading for TE exchange surgery on Monday and will work at recovering from that for now. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Golden 01...Glad to hear that this thread is of some help to you.  Following my diagnosis, I some how found my way to this thread and read it over and over again because it gave me the most of what little information was out there about mucinous breast.  It gives me great comfort to know that this thread is helping others navigate the process of getting the information they need to make informed decisions....

    I wish you well with your TE exchange surgery. 

    Thoughts and prayers to you!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited January 2012

    Hi all my MC friends, I haven't been posting lately, first of all my computer crashed then suddenly after 55 years of looking for my baby half brother via countless dead end searches,my family have now been reunited with him via email. He lives interstate. So 160 emails to him & his family later plus some very tearful phone calls since we have joyously reconnected.

    I have continued to prayer for all you gals via my written list but my new computer once it was up & running has been going flat out on recovering 55 years of family history following my stepmother leaving my Dad and my half brother being unoffically adopted out. So he never knew about us. So now I am catching up with reading all your postings. Blessings and take courage good things you may never think are going to happen sometimes do.

    PS If you are watching the Tour Down Under bike race in Adelaide we are having exciting times with that too. Enjoy the beautiful views.