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Mucinous Carcinoma of the breast

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  • carpe_diem
    carpe_diem Member Posts: 599
    edited January 2014

    Love the line, "trying to reconcile what is to what could have been."  I'm the poster child for "soooo much worse" with an immediate stage 4 diagnosis even though my cancer is mostly mucinous (plus some DCIS).  Having everything dumped on me at the beginning leaves me surprised to still be here after almost three years.  I had great support from my DH, family, and friends, including the host of new friends I've found in the cancer community and BC.org, and I've gone on with life.  We've just about completed our retirement home (we've been living in it since October, despite lacking some finishing touches) and discovered more friends in a welcoming neighborhood with stunning views of Cayuga Lake in upstate New York. I hope you'll find that you can just keep on keeping on. The fears and discomfort don't go away, but when you reach out for support, the community is there for you.

  • Golden01
    Golden01 Member Posts: 527
    edited January 2014

    Love the line, "now the hot flashes that are probably causing global warming"! It made me laugh out loud this morning. Between the two of us, we are  probably throwing all the scientistific calculations off. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2014

    Speaking of hot flashes....I recently purchased a FROGG TOGG scarf.  There are other brands out there that make them too.  If you Google "chilly towel" you will find them.  I have already purchased a half dozen of them and given them to all my good friends!  Once they used them, they bought them as well to give to friends and family.  I wear mine ALL THE TIME!!!  IT WORKS.....FABULOUSLY AT REDUCING HOT FLASHES AND KEEPS YOU COMFORTABLY COOL!!!!

  • momo819
    momo819 Member Posts: 2
    edited January 2014

    I too have mucinous Carcinoma, well actually was removed by surgery on 6/25/13. I completed radiation on 10/17/13. (no chemo was needed). I am 48 yrs old. I am premenopausal.The next step is TAMOXIFEN. That scares me. Just anymore have any advice regarding Tamoxifen?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2014

    momo...I'm sorry to hear about your diagnosis.  While some patients experience side effects from Tamoxifen, many others do well.  I would discuss with your physician your concerns. I took tamoxifen for two years. While I did experience some issues while taking it, none were serious.  Now that I am postmenopausal, I am taking generic Femera and also have minor side effects.  None of my side effects are serious enough to consider stopping.  If you do get side effects, hopefully your team can help mitigate them.  Good luck!

  • Golden01
    Golden01 Member Posts: 527
    edited January 2014

    Momo - I'm on tamoxifen and other than hot flashes that were worse in the beginning but not too noticeable now, I really don't have any side effects. My MO started me on 10 mg twice a day rather than 20 mg once a day as he felt side effects might be a little less when getting started. I've stayed on the two times a day just because I find it easier. If I forget my pill in the morning, I can take both at night! Like VR, the plan is to switch me to an AI down the road probably in July. I have osteopenia so we'll watch my bones and see what happens with the MI. 

  • MaddieT
    MaddieT Member Posts: 23
    edited January 2014

    Momo my surgery was the day after yours!  Do you know what determined you needing radiation?  As you may have read in my post, hot flashes are the only side effect for me on tamoxifen.  I have been on Tamoxifen since July.  I was a little anxious in the beginning but feel more comfortable now.  What are your concerns?  Maddie

  • MaddieT
    MaddieT Member Posts: 23
    edited January 2014

    Carpe I am wishing you MANY happy years in your new, beautiful home!  Maddie

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited January 2014

    Hello everyone!

    Reading the posts, I see some wonderful celebrations, and for others, I am sorry to hear of your challenges. You are in the right place to find support and resources.I've just recently had my annual mammogram, 6 month check-in with onc, and 6 month check in with naturopath, and all is well. This especially made me think of all of you and how you are; truly you are the only ones who understand what a stress it can be as you go in for follow up and what a celebration it is when all is well! 

    VR, thank you again for keeping us up to date re Sloan Kettering. This truly is such great news for us. Glad you are doing so well, and wishing good health and happiness for both hubby and you.

    Some fine humour here: Mutinous! Global warming hot flashes. Ha! 

    Re tamoxifen conversation:  I've had ups and downs with the tamoxifen. Went off it for five days a month after Herceptin ended... and was so high on life on Day 5  that I applied to train as a sailor on a Tall ship.  I did get accepted and trained in November. It was insane, hard work physically and mentally and one of the most extraordinary experiences ever. (As I furled sails aloft, 60 feet above the deck on a swaying ship, I whispered to myself, "Wow, nothing is impossible. Nothing.")   But back to tamoxifen. When I went back on it after the five day break, it was so much easier. Low moods, also classed as mildly depressed, had been a big part of tamoxifen for me. But things improved. However prior to going on the sailing trip, I had a lot of joint pain, etc (also due to my house selling and me having to move in a 3 week period)... so I chose to go off tamoxifen to give the trip it's best shot.  (2 weeks)  When I went back on, I've a harder time with it:  low moods again, and global warming hot flashes. Blood pressure has gone a bit crazy, but it's uncertain what that's all about.  Nothing bad enough to not continue with tamoxifen, but I do question how smart it was to go off and on it!  So, just sharing that as a heads up.

    For 2014, I am wishing you all that you need to support you, heal you, and make (keep) your life a happy place. And if you want to train as a sailor on a tall ship, let me know... I know where to send you!  ~smile~



  • MaddieT
    MaddieT Member Posts: 23
    edited January 2014

    Oh Fthe M!  I laughed out loud at the thought of me becoming a sailor!  Thanks!  I have been in a low mood all week...a little weepy and just sad.  Thanks for the tamoxifen connection!  I keep telling myself to hold onto my panties cause it's going to be a bumpy ride!  Wishing you all the best in 2014 and in your amazing travels.  Good for you!  Maddie

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2014
  • MaddieT
    MaddieT Member Posts: 23
    edited January 2014

    Good one VR!

  • MaddieT
    MaddieT Member Posts: 23
    edited January 2014

    How is everyone doing?  My ps told me that I had thin skin....on my breasts that is.  The implants dimple a little and we were talking about correcting things.  Anyone else have that?  M

  • AustJourney
    AustJourney Member Posts: 8
    edited March 2014

    Hi Maddie,  yes I have the dimpling on my reconstructed breast which my surgeon told me he could inject fat into it.  Not sure where he will get it from as I lost 10kg in 6 weeks when I started tamoxifen and no luck at putting any of that back on.

    Hi Everyone - I'm doing well post finalisation of Herceptin but this whole work business is a drama.  After going back at 6 months and being displaced I took another 6 months off only to go back now and find I've been put into a lesser role - I used to manage a team, now I sit in a corner working with no team and having to apply for new jobs.  It has been pretty disappointing all round and am thinking of leaving.  Hope others are faring better on the restarting life step.

    Best Wishes to all x

  • agapornis
    agapornis Member Posts: 27
    edited March 2014

    Dear Austjourney,

    I'm sorry that you have to deal with problems at your workplace. Have you applied for a new job? I hope that the coming days will be much better for you with no further disappointments.

  • mjm1
    mjm1 Member Posts: 8
    edited April 2014

    Hi Ladies,

    My Mum was recently diagnosed with BC (HER2+ IDC), which prompted me to get my overdue US done to monitor my batch of benign fibroadenomas. 

    Much to my surprise they found a new lump containing 'mucoid material' in the fine needle biopsy, which lead to a core biopsy (finding 'mucocele-like lesion') and then surgical removal (awaiting pathology results to hopefully confirm no hidden malignancy). Over the last few weeks I've read tonnes about mucocele-like lesions, and it seems they are considered part of the same disease process that over time develops into mucinous carcinoma (on average MC seems to occur 10 years older than MLLs). Being a rare diagnosis, there are less than 300 cases of MLLs reported in all the medical studies I could find combined, and only 1 or 2 very old forum posts, and there's a lot I'd still like to know, so I thought I'd try this forum.

    Just wondering if any of the ladies with MC on this site have had mucocele-like lesions? (or if anyone else has for that matter).

    The chances of it being malignant seem to be low enough that I'm not stressing too much about getting the path results (though will probably be very anxious on the day), but I want to be proactive about understanding what this mucinous tendency is all about. I'm only 34 and want to have kids, so hoping to make sure my boobs don't get in the way of those plans!

    Best wishes to all :)

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    http://www.ncbi.nlm.nih.gov/pubmed/23402386


    http://www.ncbi.nlm.nih.gov/pubmed/23161710


    I can only speak for myself.  My mucinous breast cancer appeared on mammography and it looked like a benign cyst and wasn't diagnosed until a closer examination of an sonogram.  Thankfully, I had been going for mammograms AND sonograms for several years because of dense breasts.  After closer inspection, it appears that the mucinous breast cancer was there for several years.  I can't say whether or not it had mucin-like cells BEFORE it was diagnosed as a malignancy.  It seems from the two studies that I've linked above,  none of the biopsies concluded with a formal malignancy diagnosis.  It seems that unless there is some atypia, watchful waiting is advised.  Does this mean that you are at higher risk of developing a malignancy? Perhaps.  But perhaps not.  I'm not so sure that there are fewer than 300 reported cases in the literature.  That said, it appears that when mucin-like cells are found, the majority of patients are considered a "Birad 3" and need to be watched carefully.  I know for many years preceding my diagnosis, because I had many cysts and dense breasts, I was always categorized as a "Birad 3."


    The good news for you is that going forward, you will be watched carefully, especially because you are young.  Will it become a malignancy is the $64 question!  In fact, there is a huge debate about how to treat most DCIS, because researchers still don't know which DCIS is safe NOT to treat.  Unfortunately, no one can answer your question...yet.


    I wish you well.


    Edited:

    http://www.nature.com/modpathol/journal/v24/n5/full/modpathol2010235a.html


    According to researchers at Mt.Sinai Hospital in New York, they suggest that all mucocele like lesions should be biopsied.  However, since it is rare, the pathogenesis is still unclear. 


    I'm going to also mention something that I discussed earlier on this thread.  The researchers at Sloan Kettering who study rare breast cancers have a high interest in studying mucinous breast cancer.  What they do NOT understand is WHY, when invasive mucinous cells are found in the breast they are usually NOT aggressive.  Emphasis should also be placed on the word "usually" because we do know that we have some mucinous sisters who have aggressive tumors.  However, what these researchers are trying to understand is WHY when mucinous invasive cells invade other organs, it is usually VERY aggressive.


    I think through imaging we are now IDENTIFYING all different malignant cells, but we still do NOT understand the pathogenesis.  Rest assured that these mysteries  are being worked on and answers are beginning to unfold.


  • moderators
    moderators Posts: 8,462
    edited April 2014

    Thanks Voracious for these links. Also may find this link contains helpful information. http://www.breastcancer.org/symptoms/types/mucinou...

    Warm wishes,

    The Mods

  • mjm1
    mjm1 Member Posts: 8
    edited April 2014

    Thanks to both of you for these links, and VoraciousReader for sharing your experience and thoughts - and it's always nice 'meeting' someone else who likes to devour the research literature:).

    Even though Rakha's sample didn't have any MLLs upgraded to Invasive carcinoma on removal, their synthesis of their own results with the existing literature (mainly small case series) found 2% upgrade to invasive carcinoma, and 2% upgrade to DCIS, with no atypia. Plus 1 MC that developed under the scar of a benign MLL biopsy. With atypia it was about 20% upgraded. Small enough that I'm not stressing, but I'm happy that its out!! (which is standard protocol here). I can live with watch and wait on my fibroadenomas, but I'd struggle doing that with the MLL while watching Mum go through chemo, and knowing that if I fall pregnant I'll have all those extra hormones floating round for any tiny malignancies to feed off.  

    What sort of monitoring do they usually do with a Birad3?

    It's good to know that there are researchers working actively in this area. With my Mum's cancer, because of major breakthroughs in identification of HER2, and development of targeted therapies - plus aggressiveness - I take a bit of comfort in at least knowing its flavour of the month/decade in research, and that hopefully more and more effective treatments are being developed. It's weird isn't it, that interesting point you make about mucinous bc varying so much in it's aggressiveness in different parts of the body...hopefully getting to the bottom of that might help target treatments.

    Thanks and Best Wishes:)   

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    Birad 3 means there is a 98% chance that the cells are benign.  Follow up is every 6 months for 2 years if stable.

    Again, I wish you AND your mom well!

  • mjm1
    mjm1 Member Posts: 8
    edited April 2014

    Thank Voracious! 

    P.S. Saw my surgeon today, and got good news on my path results - yay! So happy they don't have to re-excise!

    All the best.

  • carpe_diem
    carpe_diem Member Posts: 599
    edited April 2014

    voracious reader,

    I'd appreciate it if you could provide a reference for your comment, "However, what these researchers are trying to understand is WHY when mucinous invasive cells invade other organs, it is usually VERY aggressive." 

    All the pathology for my breast, lymph node, and pleural tumors came back as mucinous (plus some DCIS in the breast) and all were Grade 2 with high KI-67 (25%). All this led me to expect at least typical progression, if not more rapid. Yet here I am three years later, or almost four years after my first symptoms, doing well on anastrozole. This is the only cancer drug I've taken, although I did go ahead with mx and radiation after 18 months of good response.  The latest I've read is that mx may produce faster progression in visceral tumors, but my PET/CT and CT scans show decreases in activity and no progression of pleural nodules. My C25-27 tumor markers have been in the low 50's for most of the last three years.

    I probably should just thank my lucky stars, but I'd really like to know what's going on. At this point my mo calls my cancer "indolent," but I still worry before every blood test and scan.

    I'm very thankful for your research skills and your contacts with the scientists who are familiar with this issue.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    carpe...So glad to hear you are doing well.  The reference that I am making comes from the mouths of the researchers at Sloan Kettering.  There is nothing published yet.  However they are very excited about studying mucinous breast cancer for that very reason.  They want to understand why when mucinous cells invade the breast, they are more likely to be indolent then if they invade elsewhere in the body.  Remember, these are general terms that I am using, because we all know that there are mucinous breast cancer sisters with aggressive disease AND we also know sisters who have had mucinous cells invade their ovaries and do well.

    I do stay up at night thinking about what the researchers told me.  What is going on in the breast that makes those mucinous cells react the way they do?  The researchers believe the key to understanding mucinous breast cancer might help them understand better how we might one day be able to switch off that aggressive cycle....

    When I think of what we don't know about mucinous breast cancer reminds me of a terrific book by Columbia University's Dr. Stuart Firestein.  Ignorance, How it Drives Science is a must read!  It eloquently explains how understanding what it is that we DON'T KNOW is what propels discovery.  It's not what we know about mucinous breast cancer that is interesting.  It's what we don't know, that is, why mucinous breast cancer cells are generally indolent, that makes these researchers go to work each day!

  • carpe_diem
    carpe_diem Member Posts: 599
    edited April 2014

    Voracious,

    I may have misinterpreted the comment. Are the researchers saying that primary mucinous tumors in other organs are likely to be aggressive, or that mucinous mets from bc to other organs are more aggressive? If so, do they have anything to say about activity of mucinous mets?

    Thanks for your help.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    Primary mucinous cells that invade other organs.  NOT mucinous breast cancer cells that invade other organs....

    Regarding mucinous breast cancer cells invading organs...I think that is also being studied.  Keep in mind, they were very interested in the whole topic of mucinous invasive cells because they attack so many organs ....

  • MaddieT
    MaddieT Member Posts: 23
    edited April 2014

    Hi there ladies!  Anxiety levels are high as I have an oncology appointment on Tuesday.  2nd one since I've been on tamoxifen.  I can't believe it will be a year in June since my diagnosis and bi-lateral mastectomy.  It seems so long ago yet like it was yesterday.  Hope everyone's spirits are rising with the temperatures!  Maddie

  • Golden01
    Golden01 Member Posts: 527
    edited April 2014

    Sending good wishes your way. Those appointments can always bring on some anxiety for me. 

  • MaddieT
    MaddieT Member Posts: 23
    edited April 2014

    Thanks so much!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    Pure mucinous breast carcinoma: a favorable subtype.

    Yang M1, Li X2, Chun-Hong P3, Lin-Ping H1.

    Author information

    • 1Department of Breast Surgery, Breast Tumor Center, China-Japan Friendship Hospital, Beijing, China.
    • 2Institute of Clinical Science, China-Japan Friendship Hospital, Beijing, China.
    • 3Department of Pathology, China-Japan Friendship Hospital, Beijing, China.

    Abstract

    in English, German

    HINTERGRUND:

    Das reine muzinöse Mammakarzinom ist eine relativ seltene Form des Brustkrebses. Die vorliegende Studie befasst sich mit den klinischen und pathologischen Eigenschaften dieses Tumors.

    PATIENTINNEN UND METHODEN:

    Unsere Datenbank von Patientinnen, die mit einem Mammakarzinom vorstellig wurden, wurde retrospektiv ausgewertet. Dies umfasste die Krankenakten von 1060 Patientinnen mit invasivem Mammakarzinom, die chirurgisch behandelt worden waren.

    ERGEBNISSE:

    28 Patientinnen mit reinem muzinösen Mammakarzinom wurden identifiziert. Das mittlere Alter war 55,28 ± 15,73 Jahre. Bei 17 Patientinnen wurde eine modifizierte radikale Mastektomie durchgeführt; 11 Patientinnen erhielten eine brusterhaltende Therapie. Die Tumorgröße war T1 bei 19 Patientinnen, T2 bei 8 Patientinnen und T3 bei einer Patientin. Keine der Patientinnen hatte Lymphknotenmetastasen, und es wurden keine Fernmetastasen beobachtet. 18 Patientinnen befanden sich im Stadium I, 10 Patientinnen im Stadium II. Der Östrogenrezeptor-, Progesteronrezeptor-, HER-2- und P53-Status war bei 96, 93, 0 bzw. 28% positiv. Das mittlere Follow-up war 42 Monate (Spanne 1–84 Monate). Eine Patientin hatte ein Lokalrezidiv. Das Gesamtüberleben war 100%.

    SCHLUSSFOLGERUNG:

    Das reine muzinöse Mammakarzinom hat eine günstige Prognose. Weniger invasive Behandlungsansätze könnten unter Umständen in Erwägung gezogen werden. Für ein besseres Verständnis dieser Tumorentität bedarf es größerer Datensätze mit längerem Follow-up.

    BACKGROUND:

    Pure mucinous breast carcinoma is a relatively rare subtype of breast malignancy. This study is to investigate the clinical and pathologic features of pure mucinous breast carcinoma.

    PATIENTS AND METHODS:

    A retrospective review of our database of patients who presented with breast cancer was performed. The medical records of 1,060 patients with invasive breast cancer who underwent surgery were reviewed.

    RESULTS:

    28 patients with pure mucinous breast cancer were identified. The mean age was 55.28 ± 15.73 years. 17 patients underwent modified radical mastectomy; 11 underwent breast-conserving therapy. The tumor size was T1 in 19 patients, T2 in 8 patients, and T3 in 1 patient. None of the patients had lymph node metastasis. There was no distant metastasis. 18 were stage I, and 10 were stage II. Estrogen receptor, progesterone receptor, HER-2, and P53 were positive in 96, 93, 0, and 28%, respectively. Median follow-up was 42 months (range 1-84 months). 1 patient had local recurrence. The overall survival rate was 100%.

    CONCLUSION:

    Pure mucinous breast carcinoma has a favorable prognosis. Less invasive treatment might be optional. Larger data samples with longer follow-up would be necessary to gain a better understanding of this disease.

    KEYWORDS:

    Breast cancer, Mucinous carcinoma, Prognosis

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014

    Hum Pathol. 2013 Aug;44(8):1577-85. doi: 10.1016/j.humpath.2013.01.003. Epub 2013 Mar 19.

    Mucinous micropapillary carcinoma of the breast: an aggressive counterpart to conventional pure mucinous tumors.

    Barbashina V1, Corben AD, Akram M, Vallejo C, Tan LK.

    Author information

    • 1Department of Pathology, Memorial Sloan-Kettering Cancer Center, New York, NY 10065, USA. violetta.barbashina@gmail.com

    Abstract

    Mucinous micropapillary carcinoma of the breast, also described as "pure mucinous carcinoma with micropapillary pattern," has recently come to attention as an unusual form of invasive breast cancer exhibiting dual mucinous and micropapillary differentiation. Despite increasing awareness of this morphologic variant, its clinical significance has not yet been elucidated. Here, we present 15 additional examples of these rare tumors to highlight some important differences between mucinous micropapillary carcinoma of the breast and ordinary pure mucinous carcinomas. The key features of mucinous micropapillary carcinoma of the breast included (a) largely or entirely mucinous appearance (>90% mucinous morphology), (b) distinctive micropapillary arrangement of the neoplastic cells, (c) intermediate to high nuclear grade, (d) "hobnail" cells, and (e) frequent psammomatous calcifications. In contrast to ordinary pure mucinous carcinomas, 20% of mucinous micropapillary carcinomas of the breast were characterized by human epidermal growth factor receptor 2 positivity, and 23% were p53 positive. More than half of mucinous micropapillary carcinomas of the breast (60%) demonstrated lymphovascular invasion, sometimes extensive. Synchronous axillary lymph node metastases were detected in 33% of patients and, on 2 occasions, involved more than 10 nodes. With a median follow-up of 4.5 years, we identified 1 patient (7%) with chest wall recurrence of mucinous micropapillary carcinoma of the breast after mastectomy. We conclude that mucinous micropapillary carcinomas of the breast constitute a clinically aggressive subset of mucin-producing breast carcinomas characterized by an increased capacity for lymphatic invasion and regional lymph node metastasis, reflective of their dual phenotype. Recognition of the morphologic and biologic heterogeneity within breast cancer subtypes should allow for a more accurate classification of the individual tumors and better patient stratification for treatment.