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All TopicsForum: Triple Negative → Topic: Has anyone heard of Metaplastic Breast Cancer?

Topic: Has anyone heard of Metaplastic Breast Cancer?

Forum: Triple Negative — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Jun 5, 2011 11:47PM

luvmy2kids wrote:

I had a lumpectomy done on May 27th.  I was told before having surgery I had Triple Negative Breast Cancer... After my surgery I was informed that I actually have what is called Metaplastic Breast Cancer (which from what I gather is almost always triple negative???)..

My tumor was 1.1 cm, no lymph node involment, no lymphatic vascular invasion (?), clear margins, Stage 1, grade 3..... What is puzzling me is the metaplastic part.....  I am having a difficult time finding anything about this and have been told it is VERY RARE....  Anyone out there that can relate?????  Any advice  ( I am only 40 years old). I am so scared and looking for someone who knows about this or has been through this.  Thank you in advance....

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Jun 5, 2011 11:54PM momoftwo526 wrote:

I found this information on the web: " Metaplastic breast cancer is a form of invasive ductal cancer, meaning that it forms in the milk ducts and then moves into other tissues of the breast. Inside the tumors of this type of cancer are cells not normally found inside the breast, such as squamous (skin) or osseous (bone) cells.  It is also known as carcinoma with metaplasia, or simply metaplastic breast cancer." 

If you do a google search, there is quite a bit of info on it.

Dx 5/17/2011, ILC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR+, HER2-
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Jun 6, 2011 10:35AM tninalabama wrote:

luvmy2kids,

Metplastic is indeed rare. You have no nodal involvement, which is a very good thing as far as prognosis. Join us on facebook, Bena Roberts, who administers the page, is very active in our fight against this cancer. There is also a metaplastic topic under "Just Diagnosed'. There are several of us who have had metaplastic for a number of years.  

11/07 triple neg metaplastic, 12/07 lump, 01/08 bilat mast., EC x4,Taxotere x4, recurr 11/09, Xeloda x 6, Axill. dis. 07/10, rads,09/10, Pet scan 02/11, 3 nodes ,hilar,axillary, mediastinal, CTscan 05/11, NED 05/11, PET 08/11, still on Abraxane

Dx 11/2007, 2cm, Stage IIb, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2-
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Jun 6, 2011 02:52PM luvmy2kids wrote:

Thank you for your time.  I just was able to find more research on this type of cancer.  Not a lot know about how to treat it.. I hope my oncologist knows more about it---I know he works a lot with triple negative caners but I am not sure about metaplastic....  Again, Thank you!

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 6, 2011 02:56PM luvmy2kids wrote:

Thank you for the invite I would love to join the facebook page.  All of this is so overwhelming to say the least!  Yes, I had no node involvement, no vascular involvement, clean margins, grade 3, 1.1 cm, Stage 1 (but my doctor does not like my age, which is only 40)

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 6, 2011 03:02PM lrr4993 wrote:

Luvmy - I have a very similar diagnosis to you, but my tumor was slightly bigger - just under 2 cm.  I too am 40.  There is very very little to be found on this very rare cancer.  It is treated as IDC.  Some of the stuff about it on the internet is scary. . . more so than basic TN cancer, which is scary enough.  I suggest not reading too much as it is often old and unreliable because it does not occur enough to really study it and, when it does occur, it is very rare that is found at stage 1 like us because it grows so fast.  So, a lot of the scary data is based upon higher stages at diagnosis.

A friend of mine has connections at the moffett center in tampa and she emailed about it for me after my diagnosis. A doctor there just did some sort of publication on this type and he told her to tell me it is not the big deal it is made out to be and that treating it like IDC is the way to go.  For what it is worth. . .

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 6, 2011 03:06PM luvmy2kids wrote:

IRR4993--

Oh thank you so much .. I live in the Orlando area!!  I have been considering going to Moffett if my oncologist does not know that much about it.  I am glad to hear I am no alone and we are the same age---wow how bizarre!  Thank you for your post!~

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 6, 2011 03:18PM lrr4993 wrote:

If I can find the old email from that moffett doctor I will post the name tonight or tomorrow night (may not have time tonight).  If I were you, I would want someone familiar with this.  I am in atlanta and treated at emory, which has a top notch cancer center, but even there no one specializes in it.  I doubt anyone does as it occurs too infrequently to really specialize in it.  But this doctor at moffett is at least studied in the subject.

I debated calling MD Anderson or Sloan Kettering to see if they have someone with expertise, but I really like my doctors here and the treatment does not vary with this type, so I did not consider it worth the travel and added expense and hassle.

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 6, 2011 03:57PM luvmy2kids wrote:

IRR4993--

Would you mind telling me what chemo regimen you are doing or did? Did you have a lumpectomy or a mastectomy?  I had a lumpectomy---just concerned it will not be enough ( I will follow up with radiation once I am done with whatever chemo they give me).  I just want to make sure I am doing all I can.  Have you been okay since?  I see you were diagnosed in August of last year. I was diagnosed May 16th of this year...

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 6, 2011 05:40PM lrr4993 wrote:

I did TCx4.  I was given the choice of this or the AC/T combo which is more aggressive.  I chose the TC.  I learned after the fact that TC has been found to be reasonably effective with metaplastic.  Again, take this all with a grain of salt because this type is really not understood very well, but I read that it tends to have a lesser response to chemo.  But I read one article that was a retrospective on treatment of this type at some place in miami that said it was effective about 50% of the time - the best number I have seen regarding metaplastic.

I did the lumpectomy.  In part by choice but also in part because i wanted that thing out of me immediately and that was the quickest route.  Mine had a 98% ki-67, meaning that 98% of the cells were duplicating . . . a very high speed growth.  So, I did not hestitate to take it out and rejected chemo before surgery because of the risk of it growing during chemo.  You should ask lots of questions about this.  And I would push for quick appointments.  I think metaplastics tend to always be fast growers, which raises the risk of spread.  Mine was removed within 10 days of diagnosis.  I have a friend who had a similar ki-67 (don't know if she was metaplastic, but i don't think so) and her onco insisted on removal of it immediately . . . she had her lumpectomy two days after diagnosis.  A lot of stuff you will read says to take your time and make careful decisions because breast cancer grows slowly . . . that is not always correct.

I did radiation after chemo. 

One thing to ask about, particularly if you talk to an expert, is whether you are a true metaplastic.  I was told that mine was not "a true metaplastic" meaning that it was only partially metaplastic.  I am not sure I buy my onco's explanation of this, but I did test it with my rad onco and she explained it the same way, so maybe it is correct.  I feel like it is either metaplastic or not - partial does not make sense to me, but what do I know?  LOL.

I have been fine since.  I had a very easy time with chemo - was able to work full time with little difficulty.  Hair loss was the worst part, but a good wig helps with that.  Rads were not difficult at the time, but I am having some ongoing soreness from that which bothers me, particular when sleeping on that side.  I am told this can last up to 2 years.  Great.

I had my first follow up mammo two weeks ago and it looked good. However, because of scar tissue from surgery/rads and dense breasts, I will not feel comfortable until my annual MRI in august. 

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 6, 2011 06:29PM grandmarose wrote:

luvmy2kids, welcome to the club you never wanted to join.  I too have metaplastic carsanomia breast cancer. It is indeed rare. The metaplastic is the word that the Drs. use to describe the cancer cells themselves, they are spiral in shape, which is very rare to find in the breast.  I was dx in Nov.17, 09, stage 3, grade 3, 3 cent. surgery (right side mastectomy) Dec 2, 09, no lymp involvement, 6tx t/c begining Jan 2,10 finished chemo on May 6, 10,  began taking Aromisin in sept and don't know how long I'll be on it. I hope this helps some and you can ask me any question and will do my best to help you.

Lets fight the good fight

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Jun 6, 2011 09:51PM lrr4993 wrote:

Luvmy- I cannot find the original email from moffitt but I was able to find later emails talking about it. The doc who provided the info was dr. Cox. I don't have a first name, don't know if he/she treats patients, and don't really know if he is the expert or if he works with the expert.

I have heard really great things about moffitt though. It would be a good option for you.

If you have any other questions feel free to ask. You may want to private message questions as it is easy to miss thread updates.

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 7, 2011 09:19AM luvmy2kids wrote:

Thank you for the information/help. I have a f/u appointment with my surgeon today and I am going to ask about getting a second opinion with regards to the pathology report.  I am taking a bunch of notes with me as I feel a little more prepared with your help!! Thank you again.. I never knew there were different kinds of breast cancer----I know more now than I ever wanted to know...

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 7, 2011 01:43PM, edited Jun 7, 2011 01:44PM by grandmarose

Luv,

Where are you located?  .  Its a good idea to get copies of every test they perform, blood work, chemo tx's, and any other test or exams.  Get yourself a notebook, if you don't already have one, and put copies into it. That way yoy have everything in one place and you can take it with you when ever you see someone.  Keep blank paper in to write down any questions you may have and you can write down answers right by the questions so you can refer to them when ever the need may arise.

Lets fight the good fight

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Jun 7, 2011 05:06PM lrr4993 wrote:

You are welcome!  Yes, we all now know far more about BC than we ever knew was possible. I too thought there was just one kind until I heard the word biopsy in my appointment.  I now know just enough to annoy my doctors with all my questions.  :) 

If you learn any new insight into metaplastic, please share.  Unless it is scary.  Then I would rather just bury my head in the sand.

On grandma rose's point, if you have access to a comprehensive cancer treatment center (like moffitt), I recommend that. First, they coordinate and conference about your care in a team approach, which is comforting.  Emory even assigns what they call a nurse navigator who helps with scheduling appointments and is available for basic questions that you don't want to bother the doctor with.  She was a godsend for me.  I would imagine most bigger facilities do this.  And all your records are kept in one place where everyone has access.  That has been great help for me.  I now have all my docs (even the non-cancer ones) through emory so that everyone has access to my full medical history.  My new PCP was able to review my entire cancer treatment course on line, including all blood work, and take that into consideration when talking to me about health care maintenance going forward.  It takes a bit of stress out of an already stressful situation to not have to worry that information is not passing between facilities and to not have to be the one to make sure it happens.

Good luck!!

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 7, 2011 08:02PM grandmarose wrote:

Irr,

I didn't mean for Luv to be responsible for transporting results between Dr.  I  just feel that its important for to keep copies so we can refer to them and see what differences in your blood work results.  Just an opinion.  And if you see something that doesn't look quite right, you'll have it with you when you see your Dr.

I saw something in one of my reports that my onc missed and he was glad that I had seen it and then talked to him about it.

not good but it does happen.  Dr.'s are human and they can miss things and better for you to find then have it missed altogether. 

Laurie

Lets fight the good fight

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Jun 7, 2011 09:49PM lrr4993 wrote:

Laurie - I completely agree.  I have read several stories here about people in smaller communities who did have to transport records from doctor to doctor which caused some details to fall through the cracks - that is what I thought you were referring to.  But you are right, you do still want to review your own records carefully.  Case in point - my pet scan.  My onco gave me a copy to review, left the room for a couple of minutes, and returned and asked if I had any questions.  I said "um, yes, just one. . . this says I am status post-hysterectomy and I am not.  Are we sure this is my scan?"  She was embarrassed and apologetic.  We had to have the scans re-read.  It was a typo.  I just wanted to make sure it was mine, because I liked the clear result!

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 8, 2011 11:40AM grandmarose wrote:

Make sure when you get a copy of your DX that you get the entire report including any addendum's. Mine had the results from the of surgery and an addendum that had results from 10 days later that had  one change in it so it is important to get the whole report.

Lets fight the good fight

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Jun 9, 2011 04:32PM luvmy2kids wrote:

I got my pathology report today and will see my oncologist on Monday.... I am still awaiting my BRAC analysis  then I hear if it comes back negative I have to do a BART test to make sure it is negative.. All this waiting is hard.... I asked for a second opinion on my patholgy report.... We shall see.....

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 19, 2011 11:58PM gami43 wrote:

Hi - I am new to this site and am so happy to have found it.  Yes, I have TNBC which has a matrix producing tumor, which I understand is metaplastic.  It is scary as just about everything I read is that TNBC is not easy to treat and metaplastic CA is really an unknown how to treat.  I really don't know if everthing I read is accurate, but I did not get much education from my onc.  I can tell you I had bilateral mastectomies and chemo of 3 cycles of FEC followed by 3 cycles of Taxotere.  My first follow-up will be July 28, 3 months post my chemo.  I have much concern on what type follow-up you have with this dx.  I would appreciate feedback from you gals that share my dx.  (Sorry about the italic change - my computer won't let me change it for some reason)  Blessings on all of you. Thank you.  Gami43

Dx 10/15/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 20, 2011 02:36PM luvmy2kids wrote:

gami43..From what I have been told it is treated the same way the typical breast cancer is treated because they do not know what else to do. I am going to participate in a clinical trial with Bevacizumab (in addition to traditional chemo)... I am having a very difficult time trying to decide between a mastectomy and radiation (already had a lumpectomy) .  There are so many things to consider and being TN and metaplastic to boot is worse...for the reason of the unknown factor.. I just like everyone else here, just does not want to go through this again in the future and want to make all of the right decisions now and not have any regrets later.....just know you are not alone just think I am one more that is this RARE metaplastic--can't be so rare if several people have it---right??  ;-) also, I was told I would be followed up with the onc. every 3 months for at least 5 years...

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 20, 2011 05:10PM gcpommom wrote:

Hi ladies.  We have another thread here on bc.org, and a fantastic Facebook page that is very active.  I myself am now 2 1/2 years out from diagnosis of MBC.  Please join us on FB, it is a very informative and supportive page, and we are also just getting set up to add a second page for chatting and getting to know each other better. 

Be aware that our FB page is set to 'closed', which means it is completely private, so you have to request to join so we know who you are : )  Also, if you are just starting chemo, be sure to join a chemo group here on bc.org, I never could've made it through without this site either!

ugh, can't copy/paste in Firefox, I will switch to IE and post the link to FB below : )

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away. Diagnosis: 3/12/2004, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes

Dx 12/4/2008, IDC, 2cm, Stage IIa, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 20, 2011 05:11PM, edited Jun 20, 2011 05:11PM by gcpommom

http://www.facebook.com/home.php#!/home.php?sk=group_124869030878992&ap=1

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away. Diagnosis: 3/12/2004, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes

Dx 12/4/2008, IDC, 2cm, Stage IIa, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 20, 2011 05:33PM gami43 wrote:

 Would love to join your FB,but don't know anything about FB.  How do I access it.   Thanks for theinvite - I really have felt alone because not only did my onc not educate me, but I had never heard of it  and did not know anyone who had ever had it.  Look forward to hearing back from you. Thanks so much.  Blessings, Gami
Dx 10/15/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 20, 2011 08:30PM gcpommom wrote:

Hi Gami

Well, the first thing you should do is go to http://www.facebook.com/ and set up an account.  It is free to do this.  Once you get your account set up, you will get your own FB page.  Then come back here and click this link:  http://www.facebook.com/profile.php?id=1706391290#!/home.php?sk=group_124869030878992&ap=1

This will take you to our MBC page (you may have to sign into FB first).  Click on the top right, there is a button that says "ask to join group".  Then I will add you.  It's not as hard as it seems, and although FB can take a while to figure out, it is really a fun site...I started playing Farmville during chemo, to give me a nice distraction from everything.

Let me know if you have any questions.

Hugs, Judy

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away. Diagnosis: 3/12/2004, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes

Dx 12/4/2008, IDC, 2cm, Stage IIa, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Jun 21, 2011 11:17PM gami43 wrote:

Judy - thanks so much.  I am going to the beach Saturday for a month with my family.  I am taking my laptop with me, so I'll have plenty of time to figure FB out.  Have a great summer.

Dx 10/15/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Aug 14, 2011 10:17AM gcpommom wrote:

gami43:  were you able to join us on Facebook?

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away. Diagnosis: 3/12/2004, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes

Dx 12/4/2008, IDC, 2cm, Stage IIa, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Aug 18, 2011 07:40AM mags20487 wrote:

I am so worried after reading this thread.  i have metaplastic trip neg with unknown lymph involvement.  i have pain in my right armpit and us shows a large mass there.  the doctor says we have to wait 3 weeks for surgery and now i am worried that might be too long.  How fast does this stuff grow?  I know it is an individual thing but I am really scared now.

Mags 

DX @43yrs old triple negative metaplastic. BMX 8/23/11. 4 taxol and 4 AC finished 12/29/11 35 rads completed 3/16/12 Bilat Diep 11/1/12 left side flap failed 11/6/12 Gap flap left 3/5/13 lymph node tx 5/22/13 Revision 8/13, Revision 12/13

Dx 8/17/2011, IDC, 2cm, Stage IIa, Grade 3, 3/18 nodes, ER-/PR-, HER2-Surgery 08/23/2011 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 09/22/2011 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/27/2012 ExternalSurgery 11/01/2012 Reconstruction: DIEP flap (Both)Surgery 03/05/2013 Reconstruction: GAP flap (Left)Surgery 05/22/2013 Reconstruction (Left)Surgery 08/21/2013 Reconstruction (Both)Surgery 12/04/2013 Reconstruction (Both)
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Aug 18, 2011 08:47AM luvmy2kids wrote:

Listen Mags20487, I live here near you---Orlando area --not far from you!  Anyway, why are they waiting 3 weeks fir surgery?  Mostly they say breast cancer is slow growing, however, this is not the case with metaplastic TN BC...  I had my surgery a couple of weeks after my biopsy and the sucker grew 3 mm in a short time.. My husband really was on the breast surgeons case to get me in earlier and they were able to squeeze me in and I thank God he was so persistant.  Please try and call the docs office and get in sooner rather than later!  If you need to talk etc. please let me know and please know there are others out there with the same diagnosis and you are NOT alone!  There is not a lot of info, out there on metaplastic bc--trust me, I know!! Anyway, like someone else posted here there is a closed Facebook with around 150 of us facing this terrible disease and it has been helpful to me--I believe you just have to ask to join the Facbook page...again it has been very helpful to me... Again--our type of cancer is not a slow grower --PLEASE call and voice your concerns!

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-
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Aug 18, 2011 09:51AM mags20487 wrote:

thanks luvmy2kids...I love my 2 kids too!!!! Lots in common.  I have alredy put a call into his office after reading my terrifying report.  I am going to see him again tomorrow and make my concerns loud and clear

DX @43yrs old triple negative metaplastic. BMX 8/23/11. 4 taxol and 4 AC finished 12/29/11 35 rads completed 3/16/12 Bilat Diep 11/1/12 left side flap failed 11/6/12 Gap flap left 3/5/13 lymph node tx 5/22/13 Revision 8/13, Revision 12/13

Dx 8/17/2011, IDC, 2cm, Stage IIa, Grade 3, 3/18 nodes, ER-/PR-, HER2-Surgery 08/23/2011 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 09/22/2011 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/27/2012 ExternalSurgery 11/01/2012 Reconstruction: DIEP flap (Both)Surgery 03/05/2013 Reconstruction: GAP flap (Left)Surgery 05/22/2013 Reconstruction (Left)Surgery 08/21/2013 Reconstruction (Both)Surgery 12/04/2013 Reconstruction (Both)
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Aug 18, 2011 10:33AM luvmy2kids wrote:

That is great news you are going to see him tomorrow. Ask him how many of these cases he has seen......

Dx 5/16/2011, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2-

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