Fill Out Your Profile to share more about you. Learn more...
What part of day-to-day life during your breast cancer experience has been most challenging for you? Take our poll.

Mucinous Carcinoma of the breast

1…5960626465…88

Comments

  • Unbreakable01
    Unbreakable01 Member Posts: 54
    edited April 2017

    Hi Bubbles,

    I'm sorry you have to join the group. Since MC is more of the less common breast cancer's I use that a positive and say that I'm and we are unique. :)

    I have some similarities, but not all like you. I was diagnosed at 34 in 2015. Two years prior my mammogram saw a lump, but for the two years they said it wasn't suspicious. On year 3 what I thought was just a bigger lump turned out to be the MC.

    I can't remember all the numbers, but I had a hi proliferation rate. I can check the paperwork at home. I had a low oncotype score at 14% so I didn't have chemo. I had a unilateral mastectomy, and then have been on Tamoxifen. It was ER/PR+, and HER 2 -

    My surgeon when my pathology report came back suggested radiation because the tumor was close to my chest wall. My oncologist said it wasn't necessary so I didn't do it. A year later I found a lump, and after all was said and done they couldn't out rule it being the same cancer only because they found mucin. Most likely it was a left over cell that didn't get taken out so a year later I ended up having radiation and finished that this past December.

    I'm out running again and lifting weights, got a new job during the process. Take it one day at a time, it's a lot to take in and try to figure out. Know that we are here for you.

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    UnBreakable, I like your screen name. My goodness, another young lady! Sorry, but to me you and Bubbles are merely youngsters just a little older than my daughters. No offence, but once you pass 50, gals in their 20's-30's seem too young to get MC. You've been thru a lot with those sneaky mucin cells, but you youngsters deserve much better. I send you young gals hugs for better years ahead. Remembering you special young ladies in prayer. May God bless.

  • Unbreakable01
    Unbreakable01 Member Posts: 54
    edited April 2017

    Obsolete,

    Thank you!  Cancer may try to break me, but I won't allow it to.  When I imagined my 30s, cancer was definitely not in the picture.  The good thing about being young is it's a little easier for the body to recover.  The bad thing about being young is there are more years for it to possibly come back.

    I had my ultrasound today and the tech couldn't pick up my lump on the ultrasound.  The dr. saw the images and said things look ok, but my surgeon could order an MRI, which she did.  The tech felt the lump and also said without the breast tissue, and having so much scar tissue it's harder to see things.  Next week the referral should go through and hopefully the results will be 100% good.  Right now I'm at about 80% feeling ok with the outcome, but I need 100% that this is just a lump

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    Hi Unbreakable, I'm sorry to hear that you're dealing with another possibility. The anxiety from the wondering & worrying is soooooo stressful. While waiting, you deserve to pamper yourself and please try to get extra rest.

    Here's a good article link on Mucocele-Like Lesions (MLL), benign lesions of the breast. One of the pathologists had stated that some patients produce too many mucinous secretions, which causes these. Why or "if" ever there were ever epithelial cells floating inside the mucin, it seems to be a mystery. Anyway, benign MLL is much better than the alternative, and I am holding your hand in hope & prayer. Please keep us posted or feel free to send me a PM. Big bear hugs!

    http://www.pathologyoutlines/topic/breastmucocele.html


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

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC50708...!po=38.0000



  • Unbreakable01
    Unbreakable01 Member Posts: 54
    edited April 2017

    obsolete thanks, I'm going to go out in nature with my dog. This is the 3rd year in a row having to go through all these tests and waiting. It gets taxing.

  • glowgene
    glowgene Member Posts: 23
    edited April 2017

    I just wanted to say hello as a fellow MC patient.

    I felt secure in my choice to not get a mastectomy due to one of my physicians calling MC "barely a cancer"...but after being on these forums for some time...I'm starting to wonder if I shouldn't give the idea more thought.

    At any rate: helloooo everyone!

  • agapornis
    agapornis Member Posts: 27
    edited April 2017

    Hi Glowgene, welcome to the club! At the time of diagnosis, mastectomy was the only treatment I was offered and I wish I knew more about other treatments. But anyway it has been 20 years since diagnosis. I wish you many many happy years ahead.

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    GlowGene, ... I'm beginning to feel ancient here among these very young ladies with MC lately... they're getting younger and younger! It saddens me to see such young kids getting BC, but please accept my warm welcome to the MC club!

    Agapornis, CONGRATULATIONS on an amazing 20 years!!! Had you ever taken Tamoxifen?

    Even though VR has probably already kindly posted these, I'm re-posting these interesting links with statistics, which may be of interest and very encouraging to you gals. Keep in mind the dates of the studies.

    .........................................................

    Mucinous Carcinoma... Japan ... Prognostic Analysis Based on Morphologic Features (1988)

    http://onlinelibrary.wiley.com/doi/10.1002/1097-01...(19880301)61:5%3C989::AID-CNCR2820610522%3E3.0.CO;2-E/pdf

    click "continue reading full article"

    http://onlinelibrary.wiley.com/doi/10.1002/1097-01...(19880301)61:5%3C989::AID-CNCR2820610522%3E3.0.CO;2-E/abstract

    .........................................................

    Pure mucinous carcinoma of the breast: clinicopathologic characteristics and long-term outcome among Taiwanese women (2013)

    https://wjso.biomedcentral.com/articles/10.1186/14...

    http://download.springer.com/static/pdf/277/art%25...=1492470883~acl=%2Fstatic%2Fpdf%2F277%2Fart%25253A10.1186%25252F1477-7819-11-139.pdf*~hmac=06e56f8c0d86144deb527199df9eb232c02f440c01d523eec13374e53f09cad9

    .......................................................


  • obsolete
    obsolete Member Posts: 338
    edited April 2017

    Mucinous lesions of the breast: A pathological continuum

    Mucocele-like tumor and invasive mucinous carcinoma of the breast may represent the two ends of the pathological spectrum of mucinous lesions of the breast, respectively. Little data exists on mucinous lesions that may be considered intermediate between mucocelelike tumor and invasive mucinous carcinoma.

    We studied 23 consecutive cases of invasive mucinous carcinoma of the breast and observed the following associated intermediate mucinous lesions: mucin-filled ducts (MFD) with unremarkable epithelium in 15 cases (65%), MFD with typical ductal hyperplasia in 9 cases (39%), MFD with atypical ductal hyperplasia in 5 cases (22%), and MFD with intraductal carcinoma in 13 cases (57%; micropapillary or cribriform types). Eighteen cases (78%) contained MFD with one of these four lesions and five cases (22%) contained all four lesions. Twenty-three consecutive cases of infiltrating ductal carcinoma-not otherwise specified (IDC-NOS), 21 cases of intraductal carcinoma, and 50 consecutive cases of surgically-excised breast tissue with fibrocystic change(FC), were similarly reviewed. Only one case (4%) of IDC-NOS, 1 case of intraductal carcinoma, and two cases (4%) of FC, contained small foci of MFD with intraductal carcinoma, intraductal carcinoma, and unremarkable epithelium, respectively.

    Our findings suggest the presence of a spectrum of mucinous lesions of the breast which represents a pathological continuum.

    http://www.sciencedirect.com/science/article/pii/S...


  • glowgene
    glowgene Member Posts: 23
    edited April 2017

    So...I don't know if anyone else will find this of interest, but...

    I'm in a genetics PhD program and I had a really, really hard time with my diagnosis at first. Partly I have a lifelong phobia of foreign bodies under my skin (splinters, parasites etc.) so cancer is...my worst nightmare...quite literally. I also know too much and had way too much access to worst-case-scenario case reports. I was unable to do the research I needed to make treatment decisions (specifically partial, whole or no radiation).

    My friend in the Molecular/Cell bio program took pity on me and wrote me a literature review about Pure Mucinous Carcinoma to a) make me feel better and b) help me get the info I needed to make a decision. In order to make it less stressful to read, he auto-replaced the word "breast" with " Wurgablurghablurgagagle" (looooong story short: a friend blushed every time I said the word "breast" so we started using a sound-effect instead. Some scientists live up to the nerdy stereotype). The friend who wrote it also has an interesting and lively sense of humour. I thought I would share his 3 page lit review in hopes that it might make someone smile and/or provide information to someone who needs it:

    https://drive.google.com/file/d/0B5tnaInfcpG4cFlNd...

    PS My favourite part is reading the citations at the end, with all the paper names that used to have the word "breast" in them ^_^.

  • obsolete
    obsolete Member Posts: 338
    edited April 2017

    Wurgablurghablurgagagle is a much better word choice LOL! Ahhh, GlowGene, never would have guessed! Ignorance IS bliss!! (I'll stay there, thank you :)

  • obsolete
    obsolete Member Posts: 338
    edited April 2017

    Mucinous carcinoma of the breast in Japan. A prognostic analysis based on morphologic features

    My apologies, link above appears not to be working now. Full title given above.

    First published: 1 March 1988Full publication historyDOI: 10.1002/1097-0142(19880301)61:5<989::AID-CNCR2820610522>3.0.CO;2-E
  • agapornis
    agapornis Member Posts: 27
    edited April 2017

    Obsolete, thank you.

    No, I did not take Tamoxifen or any other drugs; did not have radiation, just had modified radical mastectomy, which was the treatment protocol at the time I guess. Or it is likely that my surgeon was rather taking a conservative approach.


  • wobbly
    wobbly Member Posts: 25
    edited May 2017

    Wobbly by name....

    I am awaiting a follow up ultrasound scan of a ? suspicious cervical lymph node. Seen when I went for my follow up ultrasound of benign looking thyroid nodules . There were two of them one 2.5mm and one 3mm and the 'fatty centre' could not be seen . She showed me them on the screen and they looked round in shape. Google for round and no fatty centre basically suggests metastasis. They are on the cancer side. Also I have ? asthma type sypmtoms, coughing and wheezy with wine and dogs etc, and a constant low level sore throat.

    Now I fear mets in my lungs...

    I had an 'excellent prognosis' but did instinctivey eel I should have had chemo... which I asked for...but got letrozole ....

    still hoping for asthma and ' funny but not dangerous' lymph nodes....

    feeling scared and sad.... having a seven year old daughter makes this a constant worry... her father is preety feckless...

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

    wobbly! Please try not to go to a dark place and please try not to search doctor google. I recently had an episode with an incidental finding that required more imaging and It was quite emotionally challenging....likewise, after I was diagnosed, I had shoulder issues and convinced myself....well...you know. Recently, my friend who was remiss with her screening had an issue and had an image that showed an "architectual distortion" that required more and more imaging until she got the all clear. With all that said, i will keep you in my thoughts.....

  • tricianneAust
    tricianneAust Member Posts: 153
    edited May 2017

    Hi all you supportive MC sisters.I have been too busy dealing with my day to day life to reply lately but I think of you often especially as I read the new posts & pray for those who are anxious. When I start going to a "dark place" I do use the scripture 2 Timothy 1:7 7 For God has not given us a spirit of fear, but of power (His power to deal with situations) and of love (His love to deal with relationships) and of a sound mind (to deal with myself & to stop me doing "dark thinking". Some of you may find this as useful & as balancing as I do. Lots of prayers Tricianne

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited May 2017

    Glowgene, what a spectacular friend you have to do the research and report on wurgablurghablurgagagie cancer! Thank you for sharing.

    Wobbly, I'm feeling for you. That waiting game is hard - I've been reminded of that once again as I wait for a colonoscopy for something suspicious. (another month to wait! - though some test results also showed a parasite, and I'm inclined to think that is the only problem.) Also, I've been reminded of that waiting game because now my brother is dealing with prostrate cancer and is in the waiting game of results, next tests, results, next tests, etc. I suddenly called it 'sitting on the edge of a nightmare.' I hadn't really realized how much that is true, until my brother started going through this process, and it hit me hard that he now had to deal with this 'edge of nightmare' feeling.

    For me, I have to make very conscious choices to do something that I know lifts my spirits. Even if it takes me away from 'things I should do'... umm, like make a living. So, time in nature, paddling, time with grandgirls, art, a movie at the theatre, a play... they all help. But with my brother going through this, and both my daughter and I having been through this, it's just not a place that anyone wants to be, and that few understand. Sending you wishes for all that can lift your spirits in the process.

    Sending that wish to you, too, Glowgene, and all of us here supporting each other. And sending you love, too.

  • Ktweasel
    Ktweasel Member Posts: 17
    edited May 2017

    Hi everyone. I am new to this lovely MC club. Diagnosed last week. I will be 44 next month, married with three kids. I had a biopsy on two 1.6cm masses that were about 2cm apart. They were MC, ER+, PR-, HER2-. Got the results of the MRI today. Bad news is that the affected area is longer than they originally thought. Instead of a 2cm area it's 10cm strip. It's on the inside middle part of my left breast. She described it as a constellation of small tumors in a gelatinous pool. So that was not what I hoped for and I may just do a mastectomy (because I hate my boobs anyway). Good news is that they saw nothing anywhere else. Nothing else in the left and nothing on the right. At this point they do not see it in the lymph nodes but that is not a guarantee until They get in there. Cant decide how to process this mixed bag of news. I worry that the number of small tumors in that area is a bad sign.

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

    kt! No! It is NOT a bad sign! If you read way, way, way back on this long thread, in the literature there have been sisters with single, mucinous tumors as big as 17 CMs and they did well! Having a number of small ones should not affect your prognosis. Staging is based on the largest tumor and/or node involvment. Hang in there!


    I am so sorry that you are joining us. Others will join in to welcome you to our club...we are here for you

  • Ktweasel
    Ktweasel Member Posts: 17
    edited May 2017

    Thanks Voeaciousreader!! I will try and go through this thread bit by bit before I see my surgeon.

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

    https://www.ncbi.nlm.nih.gov/pubmed/12720107



    https://www.ncbi.nlm.nih.gov/pubmed/16286917


    https://www.ncbi.nlm.nih.gov/pubmed/10334529


    When I was diagnosed, these three studies gave me hope....



  • Ktweasel
    Ktweasel Member Posts: 17
    edited May 2017

    those are good ones! I wish I could stop getting g so hung up on worrying that it is mixed MC!

  • Kfog1231
    Kfog1231 Member Posts: 1
    edited May 2017

    Hi. Unfortunately new to the MC boards. Got my diagnosis 5/8. Never would I have dreamt that at 46 I would be dealing with BC and on top of it a rare cancer type. I have read MC has a great prognosis, however I am worried about it being a mixed tumor still. Also my ultrasound of the lymphnodes showed 2 abnormal ones, 3 days later they biopsied and the nodes were negative. My onc said yes sentinel nodes need to be removed during surgery, so I am still concerned about lymph node activity. The last 2 week been waiting on BRCA genetic testing to help me determine what type of surgery I will have. So much waiting can drive woman insane 🙄. I get my results the 31st. And then we can get surgery scheduled. Still a steep road to walk up. Thanks for listening.

  • glowgene
    glowgene Member Posts: 23
    edited May 2017

    Hey Kfog1231 I'm sorry you're here, but welcome! I know the waiting game is crazy-making, but us MC ladies really do have a great prognosis, all things considered.

    We're here if you need to talk :)

  • ade
    ade Member Posts: 720
    edited June 2017

    Hi all. I'm a first timer here but have been on a BC blog for older Christian ladies for a while. (I am 66)

    Decades ago I had blood coming form my left nipple. Had many fibrocysts for years so had mammos every 6 months. No one was alarmed (except me!).

    A year ago last November I noticed one lump growing in the bloody discharge breast, so had a mammo & ultrasound which confirmed growth but nothing else. The radiologist re-performed the ultrasound himself, and was "99.9% SURE it was a cyst" but recommended getting it removed since it had grown. Lo and behold the lumpectomy showed Mucinois Carcinoma so 12/27/15 I had a bilateral mastectomy then was put on Letrozol which was AWFUL. Switched to Exemestane, which I'm still on.

    I have 'swelling' in front of my armpit on the cancer side which concerns me. Will have my 6 month onc appt. on the 13th.

    I am in a dither as to what to do and feel like stopping the meds completely. I have gained SOOO much weight, my hair is falling out in handfuls, no libido whatsoever, my joints ache so badly by morning I HAVE to get up. I am not sleeping well at all, am dead tired ALL the time and have no energy to do the things I want to. Once every few months I actually feel good - but this is NOT a good way to live. I guess Tamoxifen is the 3rd med I can take (last I talked to my onc) but read it has MORE side effects. I just want to be normal again. Am taking L-Theanine (a natural thing) to ward off the anxiety and depression & it does help. But I am wondering if I went off the medication would my recurrence chances go up enough to warrant staying on it -and IF I went off would I even feel better then?

    Just wondering if any of you have been in this boat. Appreciate prayers to make right decisions after I see the Dr. Thanks.

    Ade

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

    sorry to hear what a tough time you are having...my first suggestion would be to determine if you had tge OncotypeDX genetic test done on your tumor. If so, it will tell you your chances of recurrence. Taking an anti-hormonal will give you a relative risk reduction by 50%. So, if you have a 10% chance of recurrence, your absolute risk reduction will be 5%. Only you can decide if it is taking that risk...


    With respect to side effects, some of us have little and some have more than others. You shoukd discuss those side effects with your physician. Likewise, some of those side effects may actually be coming from something else. Again, speak freely with your doctor.


    With respect to the swelling... that could be residual fluid. Again, your doctor should be aware.


    I wish you well

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2017

    Hi Ade I tried to reply in the middle of the Australian night (I had to check something else on my laptop) but was too sleepy to realise I had replied to the automatic message. So I am so glad to now find that I have gone on the website Voracious Reader's reply is there for you as she has uptodate knowledge. Anyway I have been praying for you since I wrote this.

    You have had a complicated journey Ade. l am praying for you right now that you do make the right decision for you for the treatment that will be the most beneficial for you. l don't have enough knowledge & experience to be very helpful but while l had Tamoxifen for 5 years & did get panic attacks from it my reaction was mild compared to what you are going through with Exemestane. l am sure my hair grew thicker while on it (my hairdresser couldn't fathom that out) l didn't have joint pain or swelling or gained weight or problems sleeping but l realise we do all have individual reactions. blessings & prayers Tricianne.

  • ade
    ade Member Posts: 720
    edited June 2017

    THANK YOU for the prayers & words of wisdom. I truly appreciate it. I've felt pretty alone in this as other people can't understand.

    Ade

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2017

    Hello again Ade, the very reason I replied as quickly as I could was because i got a lot of support emotionally, information wise & spiritually from those who replied soon after my comments were put up. I got quite addicted to checking if anyone out in the ether actually understood my issues and it was great to find those who really bothered. So while I am nearly 7 yrs past that stage its great to be able to give prayerful support where it is needed.While scripture doesn't help everyone I find it encouraging and used several for support 2 Tim 1:7 God has not given me the spirit of fear, but of power, love & a sound mind. Personally I needed the sound mind especially because I could so easily let any one fear blow totally out of all proportion. So with that in mind I pray for you MC sisters like you Ade, Kfog1231 & Ktweasal who are at this investigative or re-investigative stage. Blessings Tricianne

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.