Has anyone heard of Metaplastic Breast Cancer?

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.

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. . .

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.

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. 

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.

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.

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

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.

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

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 : )

 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

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.

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 

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