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Mucinous Carcinoma of the breast

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  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    (continued) KT,

    Yes, KT, you accurately zoomed in on your pathology critical elements for DCIS. Comedo & micro-papillary popped out at me too. Yes, can tend to be more aggressive DCIS architectural patterns.

    But, keeping your DX in perspective, DCIS is still 'in situ', NOT invasive "yet", a small % and was removed in your surgery. It was caught early. Your MC was still "pure".

    Beesie authored some excellent DCIS threads here on BCO.org, if you do a search.

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    (continued) KT,

    Intermittent mobile signal... Sorry for fragments.

    My MC tumors had been both pure and mixed and scattered about. Adjacent to my Grade-III DCIS was my only Mixed Mucinous tumor Grade-II

    Also there were no DCIS clusters present where 'pure' MC Grades-I were found. Coincidence? Don't know.

    probability & correlation between DCIS and tendencies to Find Mixed MC nearby or adjacent??

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    KT, regarding your treatment decisions, if I were you I might seek out 2nd- 3rd opinions, considering your questionable grey areas.

    With your DCIS concerns, you may wish to consult with someone like Dr Michael Lagios, who runs a BC consulting service & website. He's a DCIS expert breast pathologist who could probably give you some guidance regarding your molecular subtype & recommend best options for your pathology. Just some food for thought....

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2017

    Ob...according to the folks at the rare breast cancer lab at sloane... there seems to be a preponderence of DCIS associated with mc diagnosis...they aren't sure why. A number of us, including I, have had a DCIS diagnosis along with mc. My MO said you treat the most aggressive component..

  • Ktweasel
    Ktweasel Member Posts: 17
    edited August 2017

    Thank you obsolete and voracious for all this info. I really appreciate it!!! Again, it is such a relief to talk to people with the same type of cancer!

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    Obsolete & Voracious,

    You guys are a wealth of information! Thank-you so much for everything you do for us.

    I'm literally counting the days until my bilateral mastectomy. I can't help but feel there is other stuff going on in there --the core needle biopsy that punctured the gelatinous tumor 4 times and released cancer cells, combined with the fact that the first B.S moved tissue around (oncoplasty) during the lumpectomy---so yes, I'm worried sick!! If there was cancer still in my breast, the surgeon moved these cells around and my death sentence is now sealed! Every little pain makes me think that the cancer is spreading to distant sites.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    Doctors should do randomized control studies on patients who undergo excisional biopsies versus those that undergo FNA/Core needle biopsies and see which of the patients from the two groups have distant metastasis or recurrences! It would be interesting to see if this factor alone is a strong independent prognostic factor for long term survival.

  • Ktweasel
    Ktweasel Member Posts: 17
    edited August 2017

    Bosom- I may be wrong about this since I am new to all of this but I don't think the cells can move that rapidly. I remember reading in a book from the cancer center that many tumors have been growing for 8 years before detection! And since MC tends to be a bit slow, there is even less chance for it to speed around. I don't think it could get to a lymph node that quickly. Of course, I am no doctor, but this is just my hunch based on what I have learned so far. I know the wait is agonizing and it's hard having a type of cancer that few people can relate to. I have had to make up a funny comparison to explain MC. I tell people it's like bad holiday jello--you know the one with cottage cheese and chunks of fruit in it? That's how I envision MC. I doubt any of your fruit chunks got cut loose

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2017

    https://www.ncbi.nlm.nih.gov/books/NBK164700/


    For anyone who is interested....here is an excellent primer on the relatively present understanding of how cancer metatastizes. The takeaway, how I understand the process, is that the process is very complex. There are a lot of interactions within and outside of the cells that need to occur for the cancer to become ultimately deadly.


    One of the reasons why mucinous cancer is so interesting to researchers is its ability to independently manifest in different parts of the body. What the folks in the rare breast cancer lab at Sloane told me is that while mucinous cancers of the ovaries look structually similar to those found in the breast, they BEHAVE differently. So, they are trying to figure out the interaction process of the mucinous cancer cells in each of the different parts of the body. The key to unlocking this understanding, may pave the way towards better detection, treatments and dare I say cure. Cancer, as all of you are aware, is a very complex disease. So, my suggestion to all of our breast cancer friends is to let go of our dark fear of metastasis. Remember that for many of it, it is a most treatable disease. Understandably,I keep faith in both the researchers and my own body. That's what keeps me going...

  • Ktweasel
    Ktweasel Member Posts: 17
    edited August 2017

    VR- You point out something I have been curious about. When you google MC and it comess up for other parts of the body, it always seems way more serious. It gets me thinking to something my oncologist said. I said, "I know I am being paranoid, but how do I know my cancer didn't just jump the gate (sentinel nodes) and I somewhere else in my body?" She said first, that in her 20 years she has never seen it in her patients. Second, she said this may be due to the fact that the breast is a highly organized organ. It's processes are more organized than some other organs. I wonder if the host environment (organ) and it's habits are the key?


  • obsolete
    obsolete Member Posts: 338
    edited August 2017

    Mucinous cystadenocarcinoma of the breast

    Mammary mucinous cystadenocarcinoma (MCA) is a rare type of invasive breast cancer that derives its name due to having a virtually identical morphologically to mucinous cystadenocarcinoma of the pancreas, appendix, or ovary. It is basically a malignant presentation of a normally benign cystadenoma (or 'cystoma'), which is a type of cystic adenoma. Mucinous cystadenocarcinoma of the breast is distinct from the more common 'mucinous' or 'colloid' breast carcinoma, and is also distinct from cystic hypersecretory carcinoma of the breast.

    http://breast-cancer.ca/mucin-cystade/


  • obsolete
    obsolete Member Posts: 338
    edited August 2017

    Thank you ... more info:

    "... Mucin-filled ducts, mucocoele-like lesions, mucinous atypical ductal hyperplasia or ductal carcinoma in situ and mucinous carcinoma may represent different stages of the same disease process...."

    https://www.ncbi.nlm.nih.gov/pubmed/8971560

    ----------------------------

    "A significant number of mDCIS showed neovascularization in intraluminal mucin..... hypothesis ... mucin can promote neovascularization and that tumour cells invade not into the adjacent fibroconnective tissue, but rather into the mucinous, richly vascularized stroma that they have induced. Alternatively, it is possible that both cells and their secretory product invade together....."

    https://www.ncbi.nlm.nih.gov/pubmed/18983463

    ----------------------------

    Mucinous DCIS .....

    • Predominant histologic types are solid, cribriform and micropapillary
    • DCIS grading - low grade / 1 (29%), intermediate grade / 2 (61%), high grade / 3 (10%)

    http://www.pathologyoutlines.com/topic/breastmalig...

    ----------------------------

    "... In summary, mucinous DCIS is a precursor to MC with distinctive features that link patterns of DCIS with aggressive MC phenotypes. The 2 observed transitions between mucinous DCIS and MC suggest that pathogenesis of different types of MC is different correlating with less or more aggressive behavior of the latter....."

    https://www.ncbi.nlm.nih.gov/pubmed/23759933

    ----------------------------

    Distinguish from following:

    • Invasive mucinous carcinoma has mucin in direct contact with stroma with cells floating in it
    • DCIS with associated mucocele-like lesion has duct ruputure with an area of mucin spilled into stroma
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited August 2017

    great study obsolete! Interesting to note that in the 100+ cases of MC...DCIS was observed in a little more than half of the patients. And while it explains that the pathology of the more aggressive DCIS often leads to more aggressive MC, it doesn't explain the "WHY"is the DCIS present in more than half of the cases. I also want to note that the grading of the aggressiveness of DCIS is NOT equivalent to the grading of invasive cancer. Furthermore, I had learned that point from the folks at Sloane Ketterning when I asked why my dcis was Grade 2 and my MC was Grade 1. You would think that from THIS study, my MC should have been Grade 2. Still very puzzling....

  • Pinkalicious4ever
    Pinkalicious4ever Member Posts: 1
    edited August 2017

    ...

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    Hello Pink.... A very warm welcome to you! I like your screen-name choice. Your Dx caught my attention because my Dx, like many here, had also got upgraded along the way.

    When or if you feel it's appropriate, please come back or send me a Private Message, if you'd wish to chat privately. Best wishes to you.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    Obsolete,

    After reading the surgical pathology report, why do you feel it's very important to have a mastectomy (the bilateral has been scheduled) but I'm just wondering what you saw in the notes that raised a red flag for aggressive treatment. Was it the "acellular mucin pools" floating around or the fact that the margins were incredibly close? I've been in a bit of a funk lately and I've been reading studies trying to find positives and reassurance.

    Kt --- you made me laugh with the jello and fruit chunks analogy. Someone on this site provided the following link which I found incredibly useful. Interesting to key in the different types of cancer and see what the long term survival numbers look like. http://www.lifemath.net/cancer/breastcancer/therap..

    Apparently there is a link between hormone therapy and liver injury ( fatty liver, cirrhosis... etc) Fun times ahead!

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    Hi BB101, With your surgery coming up, Advocacy is a good thing with this steep learning curve we all have.

    Yes ... to the above. I'm not a medical professional, but if I had to do it over again, I WOULD elect a bilateral mastectomy again. The BMX surgery had been easy for me. No pain from the incisions after the 2nd day. My 4 drains had been a bit of a pain, more inconvenience than anything. Practically pain- free during drain "zip" removal. My 2 lumpectomies had been much more painful for me, but I had been naturally large breasted & I always hated being Busty Betsy.

    To answer your question, mucinous cells can be sneaky little devils. Mucin pool clusters included. I had both mixed mucinous & pure mucinous & DCIS located in BOTH breasts, some of which was not found during previous imaging. Thanks to my BMX surgery, all my mucin pools & DCIS & malignant mucinous clusters, which some had been hiding from imaging, had been found. As stated in the M.D.Anderson MC study, 38% of MC patients had these sneaky MC buggers "hiding" in multi-focal and multi-centric locations. With such a significant 38%, there was NO other decision for me.

    Beside close margins, mucin pools, etc. , you mentioned you had a cytoplasm procedure that possibly had shifted or relocated some mucin positions?

    Please remember that RT is a targeted therapy. Even with whole breast radiation therapy following a lumpectomy, targeted areas must be known in advance for the boosts sessions. It's not been proven IF RT is ultimately more effective for MC, has it?

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    You got that right, Horrible-Moan therapy is a PAIN, BB101.

    Even though your oncologist may not test your liver, estrogen E1-E2, etc., you can order your own quarterly CBC blood tests on your own at your local 3rd party labs. I do.
    u

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    Obsolete,

    I came across this study over the weekend re: lumpectomy (assuming standard of care radiation is part of the treatment).

    Long-term outcomes in patients with mucinous, medullary, tubular and invasive ductal carcinoma after lumpectomy

    http://www.academia.edu/9751441/Longterm_outcomes_in_patients_with_mucinous_medullary_tubular_and_invasive_ductal_carcinomas_after_lumpectomy


    Results:

    Our study indicated that breast-conserving surgery in patients with stage I to II mucinous, medullary, or tubular carcinoma achieved similar local-regional recurrence and DFS rates to those in patients with IDC. Our data are consistent with the results reported by Weiss et al [6],Thurman et al [7], and Haffty et al [8] who discovered similar local-regional failure rates among the favorable carcinomas. Moreover, Diab et al [9] showed that patients with tubular and mucinous carcinomas had significantly better DFS rates than patients with IDC (P <.001). In the present study, only patients with tubular carcinoma had better OS rates when compared with patients with IDC, which agreed with the results reported by Diab and colleagues.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    Thanks for the heads up re: CBC blood tests. I'm making a list of to-do's as I go along. ;0)

  • vpkahn
    vpkahn Member Posts: 1
    edited August 2017

    I was diagnosed with a pure colloid carcinoma in 1990. I had a lumpectomy and lymph node dissection of 19 nodes. All tested negative..That was the time before they just removed the sentinal node. Then I had radiation. For 27 years I have been cancer free. I am now 72 years old. I go for an annual mammo and will be followed up with ultra sound because I have dense breasts. So far so good, but I will never forget the terror of receiving the breast cancer diagnosis when I was 45 years old. Stay strong ladies. What you are now experiencing will just become an unpleasant memory as you get older.

  • Ktweasel
    Ktweasel Member Posts: 17
    edited August 2017

    Vpkahn-

    Your post made my day! I am new to the pure MC club and I am 44. When I found out I was so afraid that I would only live a few more years at best. Your post is so uplifting to know that you have been cancer free for 27 years!! Congratulations!! Thank you for sharing your story!!

  • pollicakes
    pollicakes Member Posts: 8
    edited August 2017

    you made my day also, i'm 4 days into radiation.  Thank you so much !!  So wonderful to hear your story !!  God bless !!

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    VPKhan, CONGRATS and thank you for sharing your experience. Delighted to hear from you!!! Many more years of blessings!

    PolliCakes, warm welcome to you and good luck with your RT. Healing hugs ...

    BB101, thanks for interesting study info. Sorry I messed up your medical terminology (oncoplasty) with my dog's recent diagnostics terms.

    A controversial tip might serve some of you well... Please consider insisting that your surgeon NOT reuse the same medical instrument(s) for both cutting and scraping during your MC surgeries. One breast pathologist had mentioned that gelatinous mucin tend to leave sticky jelly-like residual cells on surgical instruments, and we don't want our surgeons possibly spreading our malignant MC cells around within our open incisions before they close up. Anyone here hear about this safety risk? I don't know if RT would sufficiently zap those stray cells or not, but we mastectomy patients, most of whom don't have RT, might possibly have more cause for concern.

    Thanks again and may God bless us all.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    VP---these are the kind of stories I need to hear about. It gives us all hope! Did you take hormone therapy at the time? I read somewhere in one of the studies I came across, that the size of a mucinous tumor is irrelevant because most of it is mucin.

    Obsolete, this was a big concern of mine before the lumpectomy. I wanted to inquire and make sure the B.S used different surgical instruments for removing the tumor and then the sentinel nodes. Just before going into surgery I did meet with her briefly and asked for wide surgical margins and to please remove the biopsy needle track----I was on a roll and ready to discuss the need for changing surgical instruments, when I looked up and saw the sour expression on her face! Maybe I was overstepping my boundaries as a patient? I dunno. Certainly I wasn't telling her how to do her job. These are legitimate concerns. I have no idea if they changed surgical instruments and this is a worry I will have for many years! My tumor was palpable. I was told they knew it was cancer before the core needle biopsy, so why the hell didn't they do an excisional biopsy??!

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited August 2017

    One would hope that after removing a cancerous tumor that doctors would change surgical instruments to remove sentinel nodes and not infect breast tissue further under the armpit. What is the standard of care for this or does it depend on the doctor?

  • Kellyw
    Kellyw Member Posts: 12
    edited August 2017

    anyone had radiation after mastectomy due to close margins for mucinou? Mine were .5mm and 4/5 of the radiation oncologist are recommending it. So looks like I'll be getting that before recon

  • carpe_diem
    carpe_diem Member Posts: 599
    edited August 2017

    Kelly,

    I'm a seven-year survivor of stage 4 mucinous bc (yes, it does happen) and had a mastectomy about two years into the process. Like you, I had poor margins and agreed to radiation. In my case, even a mastectomy was controversial, so I had no expectation of radiation and already had an expander in place. The radiation caused no immediate problems, but two years down the line I developed capsular contracture which lifted and distorted the shape of the implant. I had had breast reduction on my remaining breast, but they no longer match very well, although it's fine with a bra. The problem originally felt like I had a tennis ball attached to my chest and made lying on my stomach pretty uncomfortable. I has softened some since, and it's not a big deal, but it's something to discuss with your plastic surgeon. I read that it's less common with saline implants than with silicone.

    Good luck with your reconstruction.

  • Kellyw
    Kellyw Member Posts: 12
    edited August 2017

    thank you carpe,

    I met with plastics today who senses to deter me from going bigger. I'm a B and I wanted a small C. My Thought process being that since cancer took away one boob, I'll go bigger. It doesn't seem like the augmentation on the other breast will be covered by insurance. The plastic surgeon did mention Capsulating. I just thought mucinous was an easy fix. But I guess it one thing after another.

  • lala1
    lala1 Member Posts: 974
    edited August 2017

    Kellyw---Just a thought....I'm bigger now than I was before BC but not by choice. My PS said when he put in the implant that was the same size as my removed breast (500cc) it just didn't look right....too flat with not enough projection. In the end he had to put in a 600cc implant just to give me normal projection. In order to make the other breast match (which had no BC) he did a lift (I was 49 at the time and a bit droopy!) and he had to add a 128cc implant. So I started with 2 approximately 500cc breasts and now have 2 approximately 600cc breasts. I was a B cup and now I'm a C cup. I don't think my size is too too different but just perkier. So bottom line, my insurance did pay for me to be bigger but may have made a difference in that my PS felt that was the only way to get a good look. And he did a fantastic job. You can barely tell the difference between the native and foob even naked according to my DH! So maybe see if your PS can get you bigger under the "reconstruction" process by saying that was the only way to get symmetry which insurance HAS to pay for.