Word of Wisdom

daughter858

Hello all.  I'm thankful I have found this site.  There is a lot of great information out here.  This is my 1st post to this message board. 

My mom was diagnosed 2 weeks ago with triple positive metaplastic breast carcinoma.  As you all know triple negative is rare and treatment limited.  Along with the triple negative she also has metaplastic (not metastatic) carcinoma.  This is even more rare than the triple negative with only about 3% of breast cancers making up this group.  Even less is know about metaplastic breast cancer so they will be treating it as they would any other triple negative breast cancer.  I don't have a specific question, just looking for advice.  I know you are not doctors out here, but sometimes I think you patients know much much more than many of the doctors do.  Because my mother hasn't started any treatment yet.  I'm looking for any type of advise out here?  What things have your doctors done that were successful and what things were not so succesful?  If you could go back and start treatment over, would you have done anything differently knowing what you know now?  Any advise in what I should look for in an oncologist?  From what I'm reading being more aggressive up front with this type of cancer seems to give the best outcome, but the oncologists don't seem to be that aggressive that we have spoke with, and these oncologists are from some of the most reputiable cancer centers in America. They feel the "standard" approach should be taken.  Lumpectomy, chemo and then monitor.   I don't want to say that I know better than the doctors who are highly trained in this specialty, but we have one shot at this and there's no going back.  I guess I should mention that my mothers tumor is about 3cm, the MRI doesn't show any abnormal lymph nodes (however metaplastic breast cancer usually is node negative) and no metastasis.  Any imformation at all would be greatly appreciated.  God bless all of you out here and keep up your couragious fights.  You give me and my mother lots of hope.  Thank You.

(I also posted this same message on tnbcfoundation.org)

tnt

          I am 55 had a 4cm tumor ,triple neg ,no nodes.The Mayo Clinic in Rochester strongly advised the new avastin trial  adjuvant chemotherapy.I had treatment  at the university of minnesota which included adjuvant chemo not the avastin trial,lumpectomy,and radiotherapy.My thoughts are with you

deedee84327

Hi, my daughter was diagnosed with metaplastic breast cancer April 1, 2009.  I'm amazed at how quickly they got the ball rolling after the diagnosis.  Her Oncologist is going to treat it aggresively.  They need to farm eggs before chemo can start.  I wish you the best.

Shirlann

Hi, and welcome.  With this kinda unusual and rare diagnosis I would consider getting a 2nd opinion.  This is fairly easy.  Contact Sloan-Kettering, Johns Hopkins, Dana Farber, Mayo, any of the leading cancer facilities.  Ask what the cost is for a 2nd opinion.  (Usually about $500)  Then, get your mom's original slides, original mammos, (You do this with signed authorizations), bundle up the whole lot and sent it on.  You will get a re-read of the slides by a pathologist who generally does nothing but breast cancer and a treatment recommendation.

With this info you can rest easy if both agree.  Generally they do.  But I did this with UCLA and was very happy I did.

Good luck and post often, Shirlann