Mucinous Carcinoma of the breast

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  • annhkg
    annhkg Member Posts: 5
    edited June 2018

    Thanks so much voraciousreader, you always give much support to all of sisters in this Fri.

    Yes, it's very difficult to find a support group of mucinous especially in Hong Kong. And I can't share too much specifically on our type....

    I have speak to my surgeon, but he didn't comment too much about Mucinous prognosis, not sure if it's really rare so he don't see too many cases....thats why I go online and search for more info....

    It's true, not easy to keep good emotion every mintus after diagnosed. But I will learn from all sisters here and believe we will all be well.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2018

    Heart

  • Kellyw
    Kellyw Member Posts: 12
    edited June 2018

    https://www.bcrf.org/blog/bcrf-supported-study-shows-many-women-early-stage-breast-cancer-can-avoid-chemotherapy


    My mucinous sisters with intermediate oncotype scores!!!!!!! We can avoid chemo!!!


    “Women in the intermediate group (RS 11-25), approximately 70 percent of the study participants, were randomized to receive hormone therapy alone or hormone therapy plus chemotherapy after surgery and radiation therapy. The goal was to determine whether the addition of chemotherapy improved disease-free survival in the intermediate risk group.

    After a median of seven and a half years of follow up, the trial demonstrated that hormone treatment alone was just as effective as the hormone therapy plus chemotherapy in the intermediate risk group. Disease-free survival, distant recurrence and overall survival rates were similar between both treatment groups.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2018

    kelly...not so fast...women under 50, that would be mostly premenopausal women, with scores at 16 or above would receive a small benefit. That said, the Oncotype DX test has never been validated for mucinous bc to the same extent that traditional idc has been validated. For sure, this is GREAT news, news that was highly anticipated. Personally, I always felt that those patients with scores 18 or under would not benefit from chemo. This info really helps those patients who were in the dreaded 18-29 score category. This study really puts a lot of guess work to bed and hopefully, more patients will be sleeping better now knowing they could avoid chemo....and certainly, looking back, for those in that category, up to 25, who chose not to do chemo will be resting better as well....





  • FasterPussycat
    FasterPussycat Member Posts: 37
    edited June 2018

    Long and technical. tldr: nodes clear, mucinous carcinoma about 11 x 8 mm. Good prognosis.

    Followup with BS today. Drains removed (painless!), steristrips removed. Incisions still a bit goopy so the doc cleaned them up and covered with gauze to let them dry out. I'm back in an ace wrap for a couple of days.

    As I suspected, about 2 to 3 square inches of skin on the right side (not part of the incisions at least) is dying due to poor circulation. Doc is confident it will be fine once the dead skin sloughs off in a few weeks. I can only imagine the complications if I'd opted for reconstruction instead of going flat.

    Us old farts don't heal as well as you young squirts. My skin is very delicate and reacts angrily to anything it doesn't like. I have blistered skin around the edges of the tegaderm that I removed several days ago. Even the metallic trim on the effing pink ribbons I was using to wrangle the drains raised a line of blisters one sweaty night.

    I already had to remove the bandaids over the drain holes from earlier today because the skin was burning. Same thing happened after the biopsies -- I rejected the bandaids bigtime.

    Oddly, the most painful area of my chest is over my sternum. the reast is still swollen here and there, with a real mishmash of sensitivity and numbness. I could swear something was taking a pair of pliers to my non-existent nipples.

    The doc very kindly gave me a copy of the path report: 3 sentinel nodes plus 1 axillary node removed, all clear. My breasts weighed 653 and 728 grams respectively or just over 3 pounds total, which I found slightly amusing.

    Tumor was 11 x 8 mm microscopically, unifocal (good, only one -- this type is often multifocal in the same breast), mucinous carcinoma with sheets of neoplastic cells suspended in mucin. Tubule formation <5%, nuclear grade 2, mitotic count 6 figured in 10 hpf, no lymphovascular invasions, no microcalcifications.

    TNM classification: pT1c, pN0, Mx

    Stage: IA

    Lymph nodes showed mild sinus histiocytosis, no atypia, no metastatic cells. I have some googling to do to see what those words mean lol.

    Left breast had benign parenchyma with fibrocystic change and no significant nuclear atypia or ductal hypoplasia. No in situ or invasive carcinoma. Presumably the entire suspicious area of papilloma and sclerosing adenosis on the non-cancerous side was successfully mined during biopsy a month ago.

    Next stop is the medical oncologist, who will probably want hormonal treatment as the tumor is ER/PR positive. No chemo needed as it's HER2 negative. No radiation required as all breast tissue was removed.

  • thecargirl
    thecargirl Member Posts: 66
    edited June 2018

    As I was scrolling through the abstracts on the 2018 ASCO Meeting Library I found a very interesting past study. The name of the study, "Is there a role for 21-gene recurrence score (RS) in Mucinous Carcinoma of the breast", caught my attention. The study by authors Kelly Khai Li Yap, M.D, Melissa Koc, Janice M. LU, M.D., and Dr. Darcy V. Spicer looked at a study of 1210 IMC patients that included the RS data. The article stated that, " Kaplan-Meier analysis and that log-rank testing were performed, to compare differences in breast cancer specific survival (BCSS) and overall survival (OS) by the 3 RS groups; there was no BCSS or OS differences across the three RS groups". The conclusion was that IMC showed no survival difference across the RS groups, low, intermediate and high risk. This finding suggested RS may not be prognostic in IMC. The study was limited by the small number of deaths. I read all the information I can get my hands on about Mucinous Breast Cancer, without a doubt our kind of cancer is histologically rare. I find most studies acknowledge that Mucinous as well as Tubular cancers are different and should be treated differently and usually are.

  • INFJen
    INFJen Member Posts: 4
    edited June 2018

    thecargirl - One of those authors, Kelly Khai Li Yap, M.D, is my MO :)


  • Kellyw
    Kellyw Member Posts: 12
    edited June 2018

    my curiosity is with the push to even get the oncotype then?

  • thecargirl
    thecargirl Member Posts: 66
    edited June 2018

    Sometimes I think doctors want a quick diagnosis and treatment plan.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2018

    i think the takeaway is we, mucinous sisters, need to always ask, how does this data pertain to ME? I always hesitate when I read “landmark” studies.....

  • monmadrid
    monmadrid Member Posts: 7
    edited June 2018

    Hi you all. With the second pathology report, my tumour turned out to be grade 3, luminal B, ki>30%. It certainly went more agressive from report to report. So I'm headed to chemo, starting next week. Can't find the words to express how frustating is to hear I will finally need chemo, when I've been told for two months that I would "for sure" avoid it, due to the tumour type.

    My oncologyst told me he had suspected that the tumor was more aggressive when he saw that the progesterone response was negative. Apparently, there is a direct relationship between PR(-) and luminal B

    Also, I feel relieved that we asked for a second report, otherwise I would have been undertreated!

    I'm scared.

    And the moral of the story would be "always ask for a second pathology report" when it comes to mucinous carcinoma.

    Thank you.

  • ibrahem
    ibrahem Member Posts: 2
    edited June 2018

    Hi all,
    its me ibrahem ,wrote about my 73 years old father before some time .
    first of all i would like to thank every one reply to me and give me some help to understand my father case .
    today we get anatomic pathology report .
    i would like to share the report with you guys .kindly if any one can explain to me what exactly in the report .
    thank you all for this helpful website .
    -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    the report :


    Microscope :
    ***************
    specimen composed of six ready blocks carrying number **** with the diagnosis of "mucinous carcinoma ".


    Diagnosis :
    *******************
    breast left ,wide local excision :
    **************************************************
    -infiltrating mammary carcinoma with apocrine cellular featurs and mucinous background , grade II,
    Nottingham histologic score 6/9(nuclear pleomorphism 2/3,glandular formation 3/3 ,mitosis1/3 ).
    -Negative for ductal carcinoma insitu .
    -please see below CAP cancer template for further details .

    Macroscopic and microscopic description :
    ********************************************************
    -Procedure :wide local excision.
    -specimen liberality : left.
    -tumor size :cannot be assessed due to fragment nature of the specimen (as per outside report).
    -Histologic type :infiltrating mammary carcinoma with apocrine cellular featurs and mucinous background.
    -Histologic grade :(nuclear pleomorphism 2/3,glandular (acinar)/tubular differentiation 3/3 ,mitotic 1/3 ). over all :grade II.
    -Ductal carcinoma in situ : not identified .
    -Margins :cannot be assessed due to fragment nature of the specimen (as per outside report).
    -Regional lymph nods : no lymph nods submitted .
    -Ancillary studies :Hormonal analysis by mmunohistochemistry (with appropriate control ) performed in our laboratory
    revealed :

    • estrogen receptor : positive (+3,90%)
    • progesterone receptor: positive (+3,90%).
    • Her2/neu: negative (0,0%).
    • GCDFP-15:positive .
    • CK7: focally positive .
    • CK20,TTF1,PSA,HEP-Par1 and alphafetoprotein :negative.
    ---------------------------------------------------------------------------------------------------------------------------------------------------------------------------



  • TrailDweller
    TrailDweller Member Posts: 29
    edited June 2018

    I was diagnosed with Stage 2A Mucinous Carcinoma at the end of April. I had a lumpectomy in early May and now I am waiting for Oncotype DX results and expect to start radiation.


  • obsolete
    obsolete Member Posts: 338
    edited June 2018

    FasterPussyCat, so sorry about all your post-surgical complications. Congrats on your good prognosis report.

    MonMadrid, please never be scared, as you are not alone. Just exercise caution, as you would in any circumstances. It seems that 2nd opinion pathology consultations usually steer sisters down the correct path for best chances for a great prognosis.

    Ibrahem, of course we remember the kind supportive daughter that you are! Low mitosis (cell death) signals an excellent prognostic value. Medium Grade-II is moderate. Which was the more predominant feature, Aprocrine (GCDFP-15 positive) or Mucinous? Apocrine fluid proteins can have different reactivity, so please ask your doctors for detailed explanations on immunohistology & histochemistry, particularly since fragmented "margins could not be assessed" and because ER% & PR% were only slightly positive and marginally close to "triple negative", which is a different phenotype..

    TrailDweller, hope you're feeling better after surgery, good luck with your radiation and hoping that Oncotype score meets your expectations.

    This deserves repeating ... 38% of MC patients had multi-focal lesions or multiple MC tumors in the same breast, as many of us had. It's important to get those pre-surgical MRI scans. I agree that 2nd opinions hold much value.

    https://www.sciencedaily.com/releases/2009/12/0912...

    Best wishes & hugs to everyone!


  • TrailDweller
    TrailDweller Member Posts: 29
    edited June 2018

    33 radiation treatments are planned. He said it was because it was an invasive type of BC. I still think that's a lot.


  • noraneko
    noraneko Member Posts: 5
    edited June 2018

    Hi everyone! I'm new to this forum and since last night I've been reading all the past posts (I'm still half way through.) I'm so grateful that this forum exists.

    In early May I had a lumpectomy and my surgeon removed mutinous carcinoma (2.7cm) and DCIS. My MC is ER and PR receptors positive, HER2 negative, also Lymph-node negative. (They removed three lymph nodes.) Grade 2 intermediate; Ki65<5%.

    My team ordered Mammaprint test and it came back slightly high risk (-0.117). Based on that, I was recommended to do chemo (TC full 4 cycle) followed by radiation, although my oncologist left ultimate decision to me. They also ordered Oncotype DX test with anticipation of the new TaylorX study in NEJM. I just got the oncotype result back and it was 14. Based on that, my oncologists are now recommending me to skip chemo and do radiation and hormone therapy (starting with Tamoxifen). But again ultimate decision is left to be mine.

    All in all I'm really grateful that the new study was published just on time for my treatment decision, but I can't get rid of a small piece of doubt in me, partly because I have had to adjust my plans (making up my mind for chemo first and then to no chemo). I'm also not sure how well MC is represented in Oncotype and/or TaylorX study. I'm 52 yr old and I think my menopause is starting after my surgery --Since my metabolism is transitioning, I'm wondering if I could safely look at the general population (including many post-menopausal women), or I should take into consideration of the fact that those under 50 yr old (pre-menopause) might have some benefits of chemo. I just want to make sure that I'm not under-treated, while I of course want to avoid over-treatment.

    I'm wondering if anyone else out there is making similar decisions based on the new study? Having read through posts here, I'm also considering to get second opinion on pathology, to make sure that mine is pure MC.

  • moderators
    moderators Posts: 8,615
    edited June 2018

    Hi Nora and welcome to Breastcancer.org,

    We're sorry for the reasons that bring you here, but we're really glad you found us. You're sure to find our community an incredible source of information, advice, and support! Others will surely be by shortly to weigh in on your questions.

    In the meantime, you can join some others who are using the TAILORx study and their oncotype score to make treatment decisions on this thread.

    We hope this helps and we look forward to hearing more from you soon!

    --The Mods

  • TrailDweller
    TrailDweller Member Posts: 29
    edited June 2018

    Noraeko - Our diagnosis is very similar. I am 56. My oncotype score was 15 so chemo would not do me any benefit. I am having 33 radiation treatments starting in July. I know its all a lot to understand.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2018

    my oncotype score was 15. Since I was 53 and pre menopausal, my doctor suggested ovarian suppression. I know when you look at the current Tailor results, there is a grey area when it comes to those of us who are over 50 and still menstruating. Tailor tells us there is a slight chemo benefit for those under 50 with scores beginning at 16.. But, Is that because chemo induces ovarian suppression? But, Tailor does not indicate whether those ABOVE 50 who are still menstruating with 16 scores would benefit from chemo. I really wish this subset of women were mentioned.


    Furthermore, again, this study does not break down the scores for those of us with mucinous. So, we must be very careful in analyzing the results.....

  • FasterPussycat
    FasterPussycat Member Posts: 37
    edited June 2018

    First visit with the oncologist today, exactly 4 weeks after bmx. No chemo or radiation needed, good prognosis. He started me on Femara 25mg daily. He was informative and answered questions thouroughly, and had obviously read my records beforehand (don''t count on that, or even that they read the right patient's chart) so I feel pretty confident that I'm in good hands.

    Healing is ongoing but slow. Non cancer side (left) is doing fine, only a few small scabs left. Right side still has large eschar on the vertical part of the Wise pattern (anchor / inverted T). Surgeon assures me it will heal fine so I'm trying not to rush things. I still miss being in the pool, but until it heals completely there's no chance of that.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2018

    pussy...glad all is going well, albiet slowly. Glad your first oncologist meeting went well.



    Speaking of oncologists.....I received a letter from mine this week. He mentioned in heartbreaking words that he is now a cancer patient too. I know where there is life, there is hope, but his odds of beating his cancer is close to the single digits. I am so sad.

  • FasterPussycat
    FasterPussycat Member Posts: 37
    edited June 2018

    Oh VR, I'm so sorry to hear that your oncologist is so ill. I wish you and him the best. This disease plays no favorites.

  • annhkg
    annhkg Member Posts: 5
    edited June 2018

    Noraeko- I agree with VR, some study also suggest that the benefit of chemo to pre-menopause patients may due to ovarian suppression induced.

    And you may discuss with your oncologists about your low KI67 (<5%) and response to chemo. I know some countries don't concern Ki67 anymore, but my oncologists still suggest its important indicator in deciding chemo or not.

  • noraneko
    noraneko Member Posts: 5
    edited June 2018

    Thank you so much, Moderators, Traildweller, Voraciousreader, and annhkg, for sharing your knowledge and experience. I'm so deeply grateful. I asked my oncologist, if ovarian suppression could be a choice in my case too. (I also wish there were more studies about people over 50 yrs old menstruating or transitioning to menopause. I read a study that said that there is a peak of breast cancers among women around that age. So I'd think there are many reasons to study the subgroup of women.) My surgeon and oncologist both mentioned that ki67 of my tumor is low and that is significant. That data is coming from the core biopsy (not from the surgery), so I'm hoping that it reflects the nature of the entire tumor.

    it's great to read that everything is going well with you, FasterPussycat.

    May I ask another question?

    My radiation oncologist says that they take the shorter course of radiation (3 weeks instead of 5 weeks) with an extra week of boost targeting the site where the tumor was removed. I know there are lots of discussions about the shorter course vs the longer one, but is there any discussion specifically about those options for mucinous breast cancer?

    Thank you so much again!!!



  • FasterPussycat
    FasterPussycat Member Posts: 37
    edited June 2018

    Nora I had bilateral mastectomy with no reconstruction so I could avoid radiation. I'm having enough problems healing as it is so I'm glad to skip that treatment.

    1 month out from surgery and the incision on one side opened up. My surgeon went on vacation this week so I spent most of the day in emergency where the doctor there said "yep, it's opened up all right" and sent me home after doing nothing whatsoever to treat it.

    I almost wish I had the cancer back.

  • noraneko
    noraneko Member Posts: 5
    edited June 2018

    Thank you so much FasterPussycat for sharing.

    I'm so sorry to hear your surgeon is away when s/he/they is needed the most. Your story at the emergency room makes me angry. I hope you are getting a good care and resting well. Please keep us posted.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited July 2018

    V.R., I'm so sorry to read about your oncologist. I remember the day I learned my kid's pediatrician had been diagnosed with liver cancer--- it was already in the late stages and he didn't live a year after the diagnosis. He was such a sweet, caring man.

    Our group is growing in numbers---rare group indeed Heart

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2018

    bosom....so sorry to hear about your kids’ pediatrician. I lost my kids’ pediatrician too. He was also my cousin through marriage. I miss him so much. And so do my kids. He made EVERYONE feel like he was their best friend! At his funeral, all of these folks who eulogized him claimed that they, and they alone were his best friend! My older son had serious ear issues and he owned his malady. Years later, when my son was a young adult and needed a major ear surgery, the ENT marveled that my son didn’t have a significant hearing loss. I owe that to my dear cousin. I trusted him and looking back, he went above and beyond in caring for my son. Likewise, when I met my oncologist, I trusted him and knew that no matter how much I could have educated myself about cancer, I could never know as much as him. A few weeks of my studying what little research there was about mucinous bc could never substitute for 30 years of experience. As i have mentioned here before, as i look through the rear view mirror, he gave me more info than most so i could make an informed decision. And now, eight years later, his advice was spot on.


    Furthermore, when, earlier this year,I had my thigh, intramuscular myxoma, my oncologist read my images and recommended my thigh surgeon who, then recommended my hip surgeon. Had my oncologist not been involved, I doubt I would have had the same confidence in my two choices of surgeons. As I sit here writing, I think about how banged up my body has been from these last two surgeries. But, I realize my worse days are behind me thanks to my oncologist. However, for him, the worst is ahead for him and there is nothing I can do for him except offer words of gratitude. On Thursday, I will be visiting another doctor in the same building where he practices. I intend to drop by his office and offer those words of gratitude in writing. I want to also offer his staff my gratitude as well...i am sure they are also hurting.....

  • tricianneAust
    tricianneAust Member Posts: 153
    edited July 2018

    Hi all my MC sisters. I do appreciate getting the frequent updates in my emails so I do pray for all of you on a daily basis. The breast cancer I experienced 6.8yrs ago is such a small part of my exceptionally busy life now that I just don't get back on the website to make current comments. So just know that I haven't forgotten about the difficult experiences, fear & confusion that you are going through but do be encouraged that along the way, all going well, it does become part of our health history. It is no longer part of my daily life until I need another annual mammogram & check up which is in November of each year but so far has brought me good results each time. Like you Voracious reader & Bosumbuddy its always upsetting when one of our treating doctors get cancer themselves, my bowel cancer specialist's wife died of stomach cancer which he was powerless to prevent. That is so sad when he saved my life.

    Voracious reader I so appreciate your continual input into the MC thread & all the knowledge you have. Many blessings on you all. May your MC become a part of your past health history and not of the present.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2018

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5752214/


    HER 2 positive mucinous breast cancer....