Mucinous Carcinoma of the breast

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  • obsolete
    obsolete Member Posts: 338
    edited August 2019

    Alderaan and Phg01161, Hello and welcome to our M.C. group. I'm very sorry that you have the need to be here. Please know that you ladies are not alone, even though we are small in number.

    Your Invasive Mammary Carcinoma with Mucinous Features is sometimes a diagnosis similar to mixed mucinous, which is most often mixed with a certain % of conventional IDC. Unfortunately, not all Breast Pathologists are trained alike nor do the pathologists get into the nitty gritty with the patient on their tumor's molecular subtype (phenotype Luminal A vs. Luminal B, etc.), which, IMHO, is also important.

    As VR stated earlier, surgical & treatment options are a personal decision. You may be interested in reading the following. Best wishes to all who are navigating this complicated rare disease!

    Mucinous Breast Cancer Should Not Be Undertreated

    https://www.medscape.com/viewarticle/714088


    Some recent research has suggested that, in cases of mucinous carcinoma,
    a certain percentage of women will have more than one mucinous tumor in
    the breast. For example, a 2009 study at M.D. Anderson Cancer Center
    found that, in a sample of more than 260 women with mucinous carcinoma,
    about 38% had more than one area of cancer within the breast. Research
    is ongoing, but you may want to discuss this information with your
    doctor and see what he or she recommends."
    https://www.breastcancer.org/symptoms/types/mucinous/treatment

    Mucinous Breast Carcinoma: Occult Multifocality/Multicentricity in a Favorable Disease

    Purpose: Mucinous carcinoma is a
    distinctive tumor that reportedly has a very favorable prognosis.
    Accordingly, investigators have recommended that patients be treated
    with minimal effective therapy rather than maximum tolerated treatment.
    However, previous reports have been limited by small sample sizes and
    very short follow-up intervals. We have previously reported outcomes for
    a mature data set with long term follow-up and now perform the current
    analysis to emphasize comprehensive multidisciplinary management in an
    era of minimal effective therapy for so-called favorable disease.Methods and Materials:
    We retrospectively reviewed charts for 264 patients with a pure
    mucinous carcinoma diagnosis at our institution from 1965-2005.
    Multidisciplinary management is emphasized for all patients at our
    institution including this patient cohort. All pathology was centrally
    reviewed. Overall survival, DM-free survival, and local-regional control
    were compared using Kaplan Meier method and log rank statistics.Results:
    Median age was 57 years (range 25-89). Median follow-up was 168 months.
    86% of patients were stage T2 or less. Patients who were lymph node
    negative compared with 1-3 LN+, or 4 or more LN+ were 80%, 15%, and 5%
    respectively. 44% received BCT while the remainder underwent mastectomy.
    51% of all patients received XRT. No patient in this cohort received
    partial breast irradiation. 10% of patients had an initial
    multicentric/multifocal presentation. However, a detailed pathology
    review revealed a 38% multifocal/multicentric disease rate after
    surgical resection. The occult tumors were not initially detected by
    mammography or ultrasonography
    .5, 10, and 15 year OS, DMFS, and LRC
    rates for all patients were: 95%/88%/83%; 97%/95%/92%; and 97%/94%/85%
    respectively. There was no statistically significant difference in OS,
    DMFS, or LRC based upon surgical management by mastectomy in comparison
    with BCT. Likewise, there was no statistically significant improvement
    in OS or DMFS with utilization of whole breast XRT. There was, however, a
    trend for improved LRC in patients who received XRT (p=0.06) in
    comparison with patients who underwent mastectomy or BCT without XRT.Conclusions:
    This large series of patients diagnosed with pure mucinous breast
    carcinoma demonstrates potentially favorable prognosis. However, this is
    the first known report of an association with significant occult
    multicentricity/multifocality. In an era of minimal effective cancer
    therapy which includes no additional treatment post resection in
    favorable histology, and partial breast XRT in favorable histology,
    multidisciplinary management inclusive of pathology and diagnostic
    imaging is recommended. Current treatment guidelines should reflect that
    before omitting whole breast XRT, patients should have pathologic and
    radiologic intraoperative correlation and MRI should be a consideration
    in efforts to identify potential occult disease.
    Citation Information: Cancer Res 2009;69(24 Suppl):Abstract nr 4117.

  • lime
    lime Member Posts: 8
    edited August 2019

    Thankfully I am 8 years out from surgery but I have always been curious about a characteristic of my tumor that was mentioned in my pathology report. It stated that I had about 15 percent signet ring cells contained within my tumor. Does this have any significance

  • lime
    lime Member Posts: 8
    edited August 2019

    Thankfully I am 8 years out from surgery but I have always been curious about a characteristic of my tumor that was mentioned in my pathology report. It stated that I had about 15 percent signet ring cells contained within my tumor. Does this have any significance

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2019

    lime..congrats on 8 years!


    Regarding signet cells...here is a recent study...


    https://diagnosticpathology.biomedcentral.com/articles/10.1186/s13000-016-0584-1


    And the conclusion...


    In summary, our results indicate that instead of SRC population and types, the expression level of MUC1 and/or the presence of cytoplasmic staining with circumferential membranous accentuation pattern in breast cancers showed significant association with adverse clinicopathological parameters. The expression levels of MUC2, MUC4, and MUC5AC had no clinical implication. The utility of MUC1 expression as a prognostic indicator remains to be further assessed using a larger number of cases.



    From what I had previously read in older studies, the amount of signet cells seemed prognostic. However, it appears the MUC1 expression seemed more relevant toprognosis. With that said, since you are 8 years post diagnosis, it would seem unlikely that you would have a more aggressive form of the disease.


    If you are concerned, perhaps you can ask for your tumor to be evaluated further. At the very least, your tumor can be studied. Perhaps your specimen could be added to the group of cases that have been identified and then followed for prognostic evaluation.

    Keep us posted and good luck!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2019

    https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0162088


    One more study... looks like PRIMARY signet ring breast caner is more aggressive than when it is found with Mucinous breast cancer...


    I must say, until today, I did not know about that variant. Thanks for helping enlighten me

  • Auburngal
    Auburngal Member Posts: 3
    edited August 2019

    Hello All!

    It's so refreshing to find this thread as well as the website! I was diagnosed with MC in July of 2017. I completed 8 rounds of chemotherapy (AC and Taxol) and had a bilateral mastectomy in January of 2018 and a preventative hysterectomy in May of 2018. The aggressive treatments were due to my tumor size which was 8cm. Surgeon felt he wouldn't get clear margins unless I completed chemotherapy to shrink the tumors.

    Today I am 8 weeks out from a Diep flap procedure which, overall, has gone well. My PS told me to come off of the Femara while my wounds are healing. I have noticed I feel more like "me" again after coming off of the Femara....I have been on it a little over a year and suffered from brain fog, joint pain and stiffness and overall malaise. I assumed my side effects were from chemo, however, I realize it was due to the Femara. I am now questioning if I need the Femara since I had such aggressive treatments for this type of cancer. My oncologist is firm in regards to me staying on the Femara or trying Arimidex instead to see if the side effects are less noticeable. I'm having a difficult time remaining convinced on the hormone therapy as I feel so much better off of it.

    Has your treatment plans included AI's? If I don't go back to taking the AI's what are my percentages of cancer returning? I appreciate your insight! Hugs to all!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2019

    auburn...hope you recover soon from your surgery. With respect to being on an AI....first off, due to your staging you didn’t qualify for the OncotypeDX test to determine exactly how much you would benefit from chemo and how much you would benefit from endocrine therapy. That said, endocrine therapy not only reduces your risk of recurrence, it reduces your risk of a second breast cancer. My MO told me that he thought my chances of getting a new breast cancer were greater than my chances of a recurrence, so doing endocrine therapy reduced my chances of both.


    There are many AIs to choose from and there is also tamoxifen. There are also other things to do to mitigate the side effects. I would talk to your doctor and ask him what else you can do to help with the side effects and also see if you can try one of the other meds


    Keep us posted!

  • obsolete
    obsolete Member Posts: 338
    edited August 2019

    Hi Auburn, I can empathize with your aggressive surgeries and treatments, and I can appreciate how you are now feeling after an eventful year. Have you ever had any genetic testing performed?

    From everything I've heard and read, letrozole is said to be the least gentle of the AI's, although I haven't been on it myself. You may wish to get a 2nd MO opinion and review your ER % and molecular subtype (Luminal A vs. Luminal B?) and any lympho-vascular invasion and proliferation rate. Has your MO been monitoring your estradiol (E2) testing, which might possibly warrant an aggressive AI?

    https://community.breastcancer.org/forum/8/topics/...

    There are supposedly alternative natural substances, one of which I take, but my scenario was different. I had Luminal A subtype, Grades I-II, multicentric & multiple MC turmors, in addition to a 3cm tumor of another subtype with a lower Oncotype DX score. I also had Grade-III, but it was non-invasive DCIS. Also had BMX following my original DX with lumpectomy.

    https://www.ncbi.nlm.nih.gov/pubmed/24929094

    https://suppversity.blogspot.com/2014/06/melatonin...

    Personally, I had much preferred Tamoxifen over the AI (anastrozole) because I felt it was much gentler on my system, but I had been taken off Tamoxifen because it had supposedly contributed to PE blood clots in my lungs after a car accident. It had always helped me to seek 2nd opinions. Best wishes.















  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    https://www.ncbi.nlm.nih.gov/pubmed/31718120


    HER 2 positive mucinous bc...

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    https://www.ncbi.nlm.nih.gov/pubmed/31685005


    radiation for PMC patients age 65 and over

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    https://www.ncbi.nlm.nih.gov/pubmed/31620680

    Pure mucinous bc compared to other rare types as well as mixed mucinous bc

  • lime
    lime Member Posts: 8
    edited December 2019

    Thank you Voracious! It was great to read this information as a refresher. One thing stood out in the Her2 article for my particular case. The presence of signet ring cells in Her2 mucinous has always been of interest to me all these years. Thanks again and best wishes to you and yours this holiday season

  • wobbly
    wobbly Member Posts: 25
    edited December 2019

    I am in the uk...

    I am 5 years out and have been told i can stop letrozole... We dont have the BCi on the nhs... I read smaller tumours come back later. Not sure what to do

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    lime...Heart

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    wobbly..this week is the annual San Antionio Breast Cancer Symposium....here is the latest which may help...please discuss this study with your team....


    https://www.targetedonc.com/conference/sabcs-2019/preventative-breast-cancer-effect-maintained-with-anastrozole-in-longterm-followup-data

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    i don’t recall if I have mentioned this link before....If I did, it certainly appears worth repeating


    https://www.clinical-breast-cancer.com/article/S1526-8209(18)30393-8/fulltext



  • dilloa
    dilloa Member Posts: 2
    edited December 2019

    Hello

    Kind of new to breastcancer.org. Participating and learning on behalf of my wife who was recently (2 weeks ago) diagnosed with BCa. She is 57 yrs old. For context...and forgive me for the long intro.......she is part of a regular screening program, (in Canada) mammogram every 2 years which started at age 50. In March 2018 an abnormal screening mammogram was repeated with a diagnostic mammogram and the conclusion was to resume normal screening; it was normal. Fast fwd. to Oct 2019, 17 months in between screening tests, and she discovers a lump in the upper outer quadrant of her right breast. In early December 2019, mammogram and ultrasound reveal a spiculated lesion of 2.1 cm. Biopsy results came back with a Grade i tumor, of the colloid type. ER+ at 100%, PR+ at 12% and HER2 NEG (Score 0).

    We had the surgery consult last Wednesday with a very experienced oncology surgeon who does only breast surgery, over 500 per year. He was quite confident that this was an excellent prognosis cancer. In fact he said there was really only one better case which would have been a DCIS, but there could have been many worst cases that could have emerged from the biopsy. His prediction is that the oncotype score will be low and therefore chemo will likely be unnecessary. He also said that these cancers usually have a 90% probability that they will not invade lymph nodes. His prediction is surgery (lumpectomy) followed by radiation therapy and then 5 years of hormone therapy.

    I am here now to learn from real patients with this condition. I will slowly read through the many posts and read the many articles. From what I have read, Mucinous tumors are sub-typed into types A & B and one is considered a more pure type whereas the other is a mixed type. I also understand that there is no medical guideline of what constitutes pure but that greater than 90% of cells being of mucinous type is the reference. Anything else would be considered mixed type which comes with a poorer prognosis than pure type.

    The pathology report does not specify pure or mixed. It just states "of the colloid type"....the way the surgeon spoke, it sounded pure, but i am not sure about that unless the path reports normally would state "mixed type" if it was not pure.

    I guess the purpose of this post is to hear back from people who have had a similar diagnosis, and learn what their experiences have been and to see if the real world matches the surgeon's optimistic prognosis. I want to believe it. But I am cautious to do so. I know everyone is different, everyone's tumor is different, and many factors can drive the outcome such as existing co-morbidities, genetics, lifestyle etc. While I read through the many posts already here, any feedback, especially if positive :) would be appreciated.

    thank you

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    so far, the info you have received from your team is on spot.while the PR is on the low side, it is still positive. The OncotypeDX score SHOULD validate the pathological features and also give your wife some good treatment choices.


    And speaking of path report...all pathologists write differently...that said, when you meet with the oncologist ...ask them to tell you whether it is pure or mixed. They should know. Ad if even they are unsure, let them call the pathologist.


    Keep us posted! We are here!

  • dilloa
    dilloa Member Posts: 2
    edited December 2019

    thanks varaciousre

    we will most definitely pursue to find out if pure vs mixed. Regarding the oncotype testing, i remember the surgeon very clearly stating that he was going to run the test only to provide another level of "insurance" or validation to his clinical diagnosis that chemo would not be required. He told us that because the mass had exceeded 2cm (was 2.1 cm) on ultrasound and because PR was 12%, the government would pay for the test (public healthcare in Canada). The doc was actually on the committee that formed the guidelines for when this test should be covered. He said that if PR is greater than 20% the test would not be covered given that she 100% ER+ and that its a grade 1 colloid type tumor.

    I have started reading the posts in this thread and i must say it is very informative. The waiting is the hardest part !!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2019

    glad you are finding this thread helpful. Try not burning the midnight oil reading it. The info you are getting and the advise is excellent.

  • rain88
    rain88 Member Posts: 161
    edited April 2020

    Hello, ladies.

    I am finally able to openly talk about my BC. As hard as it has been to make sense of it all, I know that I was rather fortunate to have this type. (Path report: Invasive Mucinous Carcinoma, DCIS, ALH, 1.1 cm, ER +, PR+, HER2-, no node involvement, clear margins). I found the lump myself and, as often it is the case with this type, it was initially believed to be benign. Long story short, I had lumpectomy, done 15/4 days of radiotherapy and just started on tamoxifen. I was 48 when diagnosed.

    I am glad I found this forum! Love and hugs to all!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited January 2020

    Blessings rain88, Its great when you can start talking about your MC openly. Now I am in my 10th year since having MC I don't even get distressed thinking or talking about it. I openly encourage my friends and contacts to talk about their fears & get themselves checked or double checked. I had my last mammogram in December & all is well so must update my info. I feel really well & encouraged by my improved health. My biggest concern now is climate change, the drought in Australia and all of our bushfires. Kangaroo Island just opposite Adelaide was in extreme fire conditions last night. We are all dealing with ash & bushfire haze which is nothing in comparison to what they are dealing with. Please pray that the rain comes today and is heavy & useful. Blessings on all my MC friends. Sorry I have been out of touch. Just too much else going on in life.


  • rain88
    rain88 Member Posts: 161
    edited January 2020

    Hugs and prayers, Tricianne.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2020

    https://www.ncbi.nlm.nih.gov/pubmed/31897333




    Omission of Chemotherapy for the Treatment of Mucinous Breast Cancer: A Nationwide Study from the Korean Breast Cancer Society.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2020

    https://www.ncbi.nlm.nih.gov/pubmed/31685005



    Omission of adjuvant radiotherapy following breast-conserving surgery for elderly women with early-stage pure mucinous breast carcinoma.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2020

    https://www.ncbi.nlm.nih.gov/pubmed/31718120



    Clinicopathologic characteristics of HER2-positive pure mucinous carcinoma of the breast.




  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2020

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6776130/





    Comparison of Clinical Features and Treatment Results of Mix Mucinous Carcinomas and Other Atypical Carcinomas of the Breast

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited January 2020

    Hello all
    I haven't posted for quite some time but want to thank all of you who contribute here. Voracious, thank you, especially for always staying on top of posts and providing such valuable information for everyone.
    To all who are new here, I'm sorry that you have a reason to be here, but you have found a very supportive place with resources and information that is accurate. I know I was relieved I found this site when I was searching for answers.
    Dilloa, I agree with Voracious that your team is spot on.
    My update: 8 years since first being diagnosed. Happy when the A.I.'s were completed after 5 years, because they did play havoc with joint pain and brain fog. However, I did switch a few times on the type of A.I. prescribed until finding one that caused the least side effects. Don't be afraid to keep talking to your oncologist about your side effects. They are there to help you.
    My ridiculous news is that I will be having my implant removed in March, because it is an Allergen product that has been recalled because it may cause a rare cancer. The mention of rare, with both my daughter and I having had rare cancers was less than reassuring for me, so I look forward to the explant and oh well to being half flat after! Hope that none of you are dealing with this, too.
    Tricianne, I'm so sad for Australia - the people, the animals, and the land. Sending you extra love.
    Good wishes to all for healing and happiness

  • tricianneAust
    tricianneAust Member Posts: 153
    edited January 2020

    Hi all my MC sisters. It has taken me half the night to update my Signature in Settings I guess I am getting old & do not navigate this website as frequently as I did. Thanks for all the updates which I pray for you all as I quickly read them on the email notifications.

    Feelingthemagic thankyou for your kind thoughts for those suffering in the bushfires but its a hard choice you are going through the implant risk causing you a one sided flattened bosom. So lots of prayers & blessings. Its been horrendous here but on the whole people are pulling together really well considering they have dealt with the worst bushfires ever. If you saw The Tour down under on TV you will see parts of the Adelaide Hills that suffered badly but other nearby areas are mainly unaffected except they are living in fear until summer is over about April when the bush fire risk decreases. My three families that live in the hills were evacuated but escaped damage. We have had some cooler safer weather for a couple of weeks that gives us all a chance to recover before the next heatwave. Blessings on you all Tricia

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2020

    feeling...How awful! Really! You are living one of my nightmares! I had a hip replacement in 2018 and I SOMETIMES worry that my implant will be recalled. A lot easier when it is a car part being recalled! Good luck and thanks for chiming in!


    trish...to you and the people down under, thoughts and prayers to all. My family lived through Superstorm Sandy and, six years later, the community is still recovering. Thankfully, my home was untouched...but so many friends and family are still picking up the pieces. I wish all of you a safe and swift recovery...


    and, as always, Trish, thanks for your thoughts and prayers for all of our sisters...and brothers too. I know you are always praying for us and that means a whole lot!