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Metaplastic Carcinoma

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  • Mary_Louise1
    Mary_Louise1 Member Posts: 1
    edited May 2012
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    Hello - I am Mary Louise,

    The chemo treatment drugs that have been rx for me are (FEC) Fluorouracil, Epirubicin, and Cyclophosphamide 1V. I believe through reading thru the forums that this is an agressive treatment. There are indeed several choices, that being said I just followed through with what was rx'd.  Have had only one treatment so far, and actually fairing pretty well. 

    What is the defination of agressive treatment? Some people have chemo treatments for several days in a row, or for 8-10 treatments. 

    ER neg, PR weakly pos, Her2 neg, 0/1 nodes, mastectomy, 2.1 cm tumour (metaplastic carcenoma) with a secondary tumor in situ (micropapillary,solid and comedo patterns) 

  • Dulcie
    Dulcie Member Posts: 58
    edited May 2012
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    Hi Shelley i have Metapastic and i started a course of EC chemo 4 lots..then TAX 4 lots..i haven't had any surgery yet...but i am now concerened that chemo might not work! I had not considered that might happen..

  • Dulcie
    Dulcie Member Posts: 58
    edited May 2012
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    So sorry i didnt look at the year date Shelley posted! I hope she is ok?

    Hi Mary Louise .

  • Dulcie
    Dulcie Member Posts: 58
    edited June 2012
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    Bump

  • GSOsmiles
    GSOsmiles Member Posts: 2
    edited October 2012
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    Hi,

    I have just joined. I was diagnosed with Metaplastic Carcinoma, triple negative, after my tumor was removed 4 weeks ago. Before that, the pathologists were unsure what the tumor was.Iin Aug. of last year, Like many with Metaplastic, I was first told I had just an area of calcification. It hurt, but I was told not to worry. When it got worse I finally went back. It had also grown a lot!

    I was told it was Breast Cancer, but they were not sure what they were seeing. I was then told it was a Sarcoma that happened to be in my breast. I wanted a second opinion, so had my information sent to Duke University Hospital, the closest hospital that specialized in Sarcomas. After looking at the tissue, and the MRI, the Sarcoma specialist said he did not believe that it was a Sarcoma, but it definitely needed to come out.

    The surgeon did a wonderful job and I am healing up nicely. Fortunately, there was no involvment of the lymph nodes, the skin, or the chest wall. The Oncologist is starting me on Chemotherapy probably next week. I will have 4 injections of a combination of Doxorubin Hydrochloride and Cyclophosphamide at two week intervals, and then 4 injections of something starting with a T. Everyday after the Chemo I will go back and have an injection of Neulasta to build up my white blood cells.

     After I finish my Chemo I rest 4 weeks and then start on radiation. Every weekday for 6 weeks I will have a treatment.

    Anyone else out there doing that regimen, or have even heard of it? I have read many of your posts and appreciated the support that has been given to all who have written. I would love to hear from anyone who happens to be out there reading this post.

    Best wishes to all,

    GSOsmiles

  • GSOsmiles
    GSOsmiles Member Posts: 2
    edited October 2012
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    Hi All,

    Am I the only one out here now? Have you Dulcie, Mary Louise, Life is good, and Shelley121 all finished surgery, Chemo, and radiation? I am just at the begining of the hard part and would love to know how everyone got through it.

    Thanks,

    GSOsmiles

  • machfowler
    machfowler Member Posts: 7
    edited October 2012
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    GSOsmiles,

    There is a very active group of women with MBC on FB that will be happy to help you out. I hope you consider joining that group. I know the ladies there can answer all of your questions.

    https://www.facebook.com/groups/metaplasticbc/

     

    Maria

  • machfowler
    machfowler Member Posts: 7
    edited February 2013
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    GSOsmiles,

    There is a very active group of women with MBC on FB that will be happy to help you out. I hope you consider joining that group. I know the ladies there can answer all of your questions.
    https://www.facebook.com/groups/metaplasticbcresearch
     

    Maria

  • machfowler
    machfowler Member Posts: 7
    edited October 2012
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    Ahrg! I hate it when I get all that code in my post. I hope you can read that GSOsmiles.

  • Dulcie
    Dulcie Member Posts: 58
    edited October 2012
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    Hi you will be invited onto the FB site GSOsmiles x There you will not be alone on your journey.  good luck with your treatment xx

    Dulcie  xxxx

  • machfowler
    machfowler Member Posts: 7
    edited October 2012
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    Dulcie,

     I wish you had a better experience on the site. I'm not sure what happened. Let us know if we can help you.

    Maria

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012
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    GSO...your treatment sounds just like mine.  Only difference was i did Taxol first then did the AC combination.  Also had 7 weeks of rads...difference being it was in my lymph nodes.  There are no real metaplastice targeted therapies as the docs just do not know that much about it yet.  They treat it basically like they do any TN.  I am so far still clean on all my scans and checkups and am 1 yr out from diagnosis.  I wish you the best with the upcoming months.  And yes join that FB page...it is awesome

    Maggie

  • Dulcie
    Dulcie Member Posts: 58
    edited October 2012
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    Hi Maria .

    i know i was all 'hyped' up back in February at diagnosis and with a 'thirst' to google everything in sight...but i was also in deep denial..(i still am) but sadly i didn't get what i wanted off the site...and sadly my treatment has been abysmal ..i now hope it all changes tomorrow!! I have still kept my sense of humour and a lady i have met ..who is going with me tomorrow...well we scream out laughing a lot of the time! She has cancer sadly..too and young..but our bond is wonderful!

    I also found the site too graphic for me back then...

    One of the ladies would be the first to admit  that she gave a poor prognosis very early on! But she did not know what my treatment was like..and i wont put too much on an 'open' board! My surgeon and onc never told me how urgent everything was...

    I would much appreciate any help whatsoever please!

    Dulcie xxx

  • machfowler
    machfowler Member Posts: 7
    edited October 2012
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    Dulcie,

    Sounds like we have been DX'd around the same time. I've just finished my last radiation treatment after having dose dense AC/T over the summer.

    I'm sorry you didn't get the support you were looking for on the FB site. There are a number of women from the UK on the site these days. 

    Anyway,  If I can help in any way. Let me know. I did the whole "google" thing at first too but I have come to understand that there are a lot of things about MBC that are so unique to each individual that it's crazy to make generalizations about any one persons care or needs. 

    Maria

  • machfowler
    machfowler Member Posts: 7
    edited February 2013
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    All, Hi, I just wanted to post here some dissapointing news about the metaplasticbc facebook group.

    https://www.facebook.com/groups/metaplasticbc

    I've just discovered the woman running the group is attempting to write a book with the information she is gathering there. They very innocently ask you to "Add your personal stats" to their group information page. I've just discovered that is all a part of some "business plan" that the owner will not share with group members. Please be warry. It's a shame because the group is full of some great women who genuinely offer some great advice and care but I'm leary of what is going on behind the scenes.

  • gcpommom
    gcpommom Member Posts: 60
    edited February 2013
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    Oh Maria.  Your post just breaks my heart.  It is just not true.  There is no business plan, no hidden agendas.  I am flabberghasted at the events that have taken place on a board that should be for all of us.  Our Stats page has been there from the very beginning, since 2010; it is a way for us to compare and share the details of our diagnosis.  It certainly is not being "used" in any manner such as you suggest, and we keep our ladies' info very private.  Info posted on our Facebook page would never be used in a derogatory manner.  

    If a book was ever written about Metaplastic Breast Cancer, it would be aimed at sharing basic info on MBC, treatment options, with some personal stories written by the actual members of the groups explicity for the book and with total and complete permission, and tips for coping.  There would be no monies made that would go anywhere but towards helping the group members with their needs for travel, treatment, and get togethers so we can all meet.  No hidden agendas.  No using information of any kind without permission.  Please stop saying these things.  It is so hurtful.

    I am heartbroken over this whole thing.  I personally think there was a lot of misunderstanding from the very beginning.  I missed a few of the postings on Friday, as I was not online.  But the outcome has been very distressing for many of us.  I hope that someday in the future we can all put this behind us and move forward.  With only a few hundred of us out there in the world, we need to stick together.  Hugs to you as always, and best wishes.

  • benaroberts1
    benaroberts1 Member Posts: 4
    edited February 2013
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    Judy - thanks again for sticking up for me. It is OK. I think that people that know me and see the work that I do will know the truth. Peace and good Karma.

    http://www.benaroberts.com/2013/02/i-am-not-assange-i-dont-need-to-go-on-usa-today.html

  • moderators
    moderators Posts: 7,966
    edited February 2013
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    Discussions about disageements on another site don't really belong here, and we've removed them.

  • indij1
    indij1 Member Posts: 5
    edited February 2013
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    I was diagnosed with metaplastic cancer (chondroidal cartiledge and possible squamous differentiation....1.2 cm tumor, no other tumors, clear margins, no lymph node involvement and am triple HER negative...I was first diag. with ductal carcinoma then it changed to metaplastic (a variation).
    Since  I am triple HER neg I'm not able to do hormonal treatments. I am not excited about chemo at all.  It seems like too much of a bad thing for the statistics I was given.

    Here's some info I was given by my oncologist.   Statistically, once you receive radiation, the chance of recurrence in the same breast is 8%.  If you do nothing else, the chance of recurrence anywhere in the body is 16%.  If you do chemo, the chance of recurrence anywhere in the body is reduced to 11%.  These statistics are from lumped (pardon the expression) together studies of breast cancer patients with all different levels of involvement (large tumors, small ones, clear and unclear margins, nodal involvement etc)

    I'm wondering if doing chemo (since we can't do hormone therapy) to prevent recurrence of this cancer appearing somewhere else in your body, is worth the 5% difference? I don't know much else beside this but do worry about the side effects of the chemo compared to the results without the chemo.

  • tninalabama
    tninalabama Member Posts: 6
    edited February 2013
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    indij1,

    Chemo and rads sem to to the best route. It is a goos thing there was no lymph node involvement. As my onc said the first time I met him " The best thing about being HER2 negative is that you don't have to take Tamoxifen". Not everyone is like me, they have gotten good results after initial treatments. Good luck.

    Pam

  • gcpommom
    gcpommom Member Posts: 60
    edited February 2013
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    Hi Indij1.  I also was dx'd with metaplastic in 2008.  We have a group on facebook with over 250 MBC ladies.  Most of us have had chemo, but there are also some who decided against it.  It is truly a personal decision.  The problem is that there is no clear cut answer about chemo.  It is impossible to say that it did or did not help me or anyone else who had it.  I know that doesn't help a whole lot, but all you can do is ask your doctors a lot of questions, do your research, and reach your own decision.  If you want to join us on facebook, here is our link, we have many, many wonderful ladies there:  https://www.facebook.com/groups/metaplasticbc/

    Hugs,

    Judy

  • Karietkq
    Karietkq Member Posts: 14
    edited April 2013
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    So, I just received my path report and I had 2 tumors, the larger one was triple neg IDC the smaller one was carcinoma with metaplasia with mixed types and it is in 3 nodes.... Maggie and I seem to have strangely similar dx and I followed her over her to find more info

  • mags20487
    mags20487 Member Posts: 1,092
    edited April 2013
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    Find us on facebook too katie :) so much great support and info is out there for you just gotta find the right sources



    Maggie

  • Karietkq
    Karietkq Member Posts: 14
    edited April 2013
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    Don't freak out yet.... Call and talk to them on Monday..... My dr said metaplasia means changing...... Metaplastic is is cancer.....my report said carcinoma with metaplasia.... So relax( yes I know exactly how hard that is to do!) and ask to speak to the nurse.... My dr office always says to call if I have ANY questions after I leave as they know we go home and obsess over every single word.... And then we Google and freak out... Lol.... Hugs

  • dragonfly45
    dragonfly45 Member Posts: 6
    edited October 2013
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    I am 63 and just diagnosed with Metaplastic Carcinoma, spindle Cell. It is .6 cm, triple negative, and grade 3. I am having an MRI and seeing a surgeon tomorrow. Everything i have read and found makes me very nervous about this type of Cancer. Please share your experiences with me. I cannot sleep.eat or hardly function at work. I am not normally a "what If" person but this is nasty stuff.

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2013
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    dragonfly...I wish you all the best with the treatments to come. I am a 2 yr survivor of squamous cell metaplastic bc. You can do this. I had surgery first...double mast then chemo then radiation and am now still going through the reconstruction phase. Please join our private metaplastic page on facebook.....lots of spindle cell girls there. You must contact an administrator of the page to be added to keep it private, but we are a special group of girls and will welcome another.


    Maggie

  • dragonfly45
    dragonfly45 Member Posts: 6
    edited October 2013
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    Thank you so much for your encouragement. I found this site yesterday and cannot tell you how much better I am today because of the positive information and responses. Everything i had read up to this point was not very promising.

  • gcpommom
    gcpommom Member Posts: 60
    edited October 2013
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    Dragonfly, hello. I was diagnosed with squamous cell MBC triple neg in Dec 2008. I am almost 5 years out now. I know how scary this is for you right now and am glad you found us. It helps to have others who have gone through this diagnosis. I just spoke with a woman a few minutes ago who is 16 years out from her diagnosis! They are really just starting to look at our type of cancer, so please don't take all the older research too seriously (and also realize that a lot of the newer research is actually looking at past studies). We have a large group (300+) on Facebook, you should consider joining us there. (actually, I have had a few new requests to join there, one of them may be you?? If so, please let me know). https://www.facebook.com/groups/metaplasticbc/


    .6 cm is quite small for MBC, you must have found it very early! That is good. I know you are just at the beginning, so take some deep breaths, and know that we are here for you. (this page is not very active, so please do consider the facebook group, there is usually someone on anytime, day or night)


    Hugs

  • reginaseashell
    reginaseashell Member Posts: 2
    edited August 2014
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    My mom was just diagnosed last week with mediplastic breast cancer - triple negative stage 2- 

    one dr at sloane memorial said mastectomy another cheif said lumpectomy 

    we don't know what to do- not sure if a lump will yield same results...I don't know how to advise her- I just want it away!

    please let me know some of your choices  :(

    confused on long island ny- 

    REG 

  • moderators
    moderators Posts: 7,966
    edited August 2014
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    Dear Regina, sorry about your mother.

    Lumpectomy (Lx) versus mastectomy (Mx) is an ongoing dilema for many, as they both have their pros and cons for different problems. It is often determined by best option but person has a large right to choise best option for them too.

    You may find our article Mastectomy vs. Lumpectomy on the main BCO website of interest. Or for further info search the BCO website and forums.

    We wish your mother the best result.

    The Mods

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