My visit to MD Anderson and metaplastic BC |
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harbin 
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Joined: May 25 2008 Location: United States Status: Offline Points: 180 |
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 Topic: My visit to MD Anderson and metaplastic BCPosted: Aug 06 2011 at 2:37am |
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I would like to update everyone about my MDA visit. MDA is an amazing place. It is very patient friently and everything is focused on the patients. Our visit was good and glad we went there. My husband and I stayed there for 10 days. It was longer than what we originally planned. We stayed in Rotary House which was excellent and very convenient. We met Steve there and he was with us for my appointments. Big thanks, Steve, for your help to make this visit so smooth and successful. MDA re-examed all my slides from my 3 surgery specimens (original lumpectomy, chest wall surgery and lung surgery). They discovered cancer cell called Metaplastic and sacromatoid component from my last 2 surgeries, but have not found or confirmed that the original specimen has the metaplastic component. Based on this finding, I was told that my BC is Metaplastic subtype. It is a very rare and aggressive BC. Usually it does not response well from the chemo treatment for TNBC. They suggested a phase I clinical trial at MDA. The trial involves 3 drugs - doxil, avastin and temirolimus. We know the first two are commonly used to treat BC, but the 3rd one, temirolimus is FDA proved to treat kidney cancer, but not BC. I need to be at MDA in order to receive the trial. Of course, I was so devastated upon receiving this diagnosis. After my return, I discussed this with my oncologist here at UCSF, she has different opinion. She does not think my BC is metaplastic subtype. She mentioned, first, clinically my BC does not look like metaplastic. Secondly, the slide from the original lumpectomy did not or at least was not confirmed to have metaplastic component. She mentioned the original BC cell may have changed their look during the course of treatment and look like what they call metaplastic (spindle cell). I am now confused and wonder if I truly have metaplastic BC since it determines my next treatment. So, I have asked pathologist at MDA to re-read my original slide to confirm it is metaplastic. I am now waiting for their answer. This is the first time to hear metaplastic subtype BC and did not see anyone here having this subtype BC. I would like to hear from you if you have or know anyone with this subtype diagnosis. - Harbin |
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4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery 6/10 Lung mets 10/10 Parp 05/11 Surgery on 2 lung nodules 08/11 Parp failed 10/11 Cyberknife 1 lung nodule |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Aug 06 2011 at 11:04am |
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Harbin,
I believe we've had a couple of members with metaplastic bc. TracyAMac from Toronto had 2 tumors, one being metaplastic. You might want to send her a PM. I know it's difficult when you get conflicting pathology reports or analysis. I wonder how a slide could look metaplastic but not be MP? Does that mean it has the characteristics of MP because of treatment changing it's characteristics? It's good you're asking them to reconfirm the slide. If you don't do the trial, what is your UCSF onc recommending for treatment? MDA is an amazing place. If nothing else, it made me feel better that I went there for another opinion. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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SagePatientAdvocates
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Posted: Aug 06 2011 at 11:33am |
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Dear harbin,
thank you for posting about your experiences. You remain an inspiration to me. Your courage, intelligence and attitude are amazing. I have been unsuccessful in finding the recent paper, without charge, that was published in JCO but here is a reference- To be clear, it is my understanding that this trial is very small and it is not certain that harbin will join this trial. As with all clinical trials there are no guarantees and the best thing for a patient with metaplastic breast cancer to do would be, in my unprofessional opinion, is have their oncologist contact Dr. Stacy Moulder at MD Anderson Cancer Center to see if the trial made sense for them. Here is a link (including her contact information) to Dr. Moulder-I find her to be a very knowledgeable, caring physician. As always, I found Dr. Ana Maria Gonzalez-Angulo to be a knowledgeable, wonderful resource. I continue to believe that MD Anderson Cancer Center deserves its #1 ranking as the best cancer center in America. I know it is extremely difficult, if not impossible, for many on this site to get a second opinion at MD Anderson Cancer Center but I continue to mention it for those who may be able to. I have seen, over and over, in the last several years how important second opinions are. Here is U-tube short clip that I feel expresses, very well, how I feel regarding second opinions. It is from a cardiovascular surgeon at The Cleveland Clinic but the principle is the same for breast medical oncologists and to me, the sign of an excellent physician is one who welcomes a second opinion from another physician as long as the first physician feels the second is knowledgeable. I love the line “the fact of the matter is..you are not working for your doctor; your doctor is working for you.” harbin, this is an important thread. Thank you for starting it. The only other metaplastic patient I have worked with directly was Nina Suzie. She had extremely advanced metaplastic disease and I made her aware of the trial but for economic reasons she could not travel to MD Anderson. We will never know if it would have helped her. She was a very special woman and an advocate herself, especially for folks with AIDS and I miss her. Again, it is not my intention to recommend this trial to anyone with metaplastic disease and I don’t feel it is harbin’s intention, either, but just want folks, if you have metaplastic breast cancer or know someone who does, to know that it exists. If anyone has experience with metaplastic disease, please consider posting. It is a very rare disease and I am certain harbin would really appreciate any contribution you may have. all the best, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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sstefano
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Joined: Jul 04 2007 Location: United States Status: Offline Points: 72 |
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Posted: Aug 06 2011 at 2:36pm |
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My second primary tumor was metaplastic type. This is the pathological report: Invasive ductal carcinoma, metaplastic type.
This high grade carcinoma exhibits a prominent spindle cell component with areas of osteoid and chondroid matrix production.
Actually the core biopsy before that showed that it was phyllodes tumor. Anyway, nobody ever mentioned anything about this and I've been treated like for old, plain IDC. They just told me that it is aggressive but we know that almost all TNBC are aggressive.
I've had a few recurrences after that, but nobody ever mentioned metaplastic type anymore.
Sorry, I was not much help but just wanted to tell you that I was wondering a lot about that too.
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DX 04/97@32 stg 3 ACx4; DX 06/06@41 stg 2 Xeloda x6; 10/10@46 mets carboplatin x10, 07/11 - Xeloda; BRCA1 positive 5382insC
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tninalabama
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Posted: Aug 06 2011 at 9:16pm |
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Both times that I had biopsies they were metaplastic carcinoma ( squamous metaplasia). The first was in my breast, then 2 years later in my lymph node. My oncologist treats me more aggressively now, obviously. My last CT I was pronounced NED even though my remaining axillary node was the same size as before. I am having a PET scan Monday. So far I have only had a few errant nodes. Mediastinal, hilar, supraclavical, and cervical. I am on Abraxane for maintenanace.
Pam
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Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets
BRCA neg 5-FMC since 03/12 PET 04/12,no progression Bone scan clear 06/12 |
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TracyAMac
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Posted: Aug 07 2011 at 12:28pm |
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Dear Harbin and others on this thread
As Donna mentioned, one of two BC tumours I had last year was TN and metaplastic. I can relate to the points made here about it being considered a bigger issue for some medical professionals than others-my oncologist calls it a tumor with a very distinct type of cell architecture. In my case squamous and spinal cell. We now know very distinct subtypes of metaplastic BC (on top of being a sub type of TNBC!) but apparently no targeted/preffered therapies. There is a MBC site/group on Facebook that some of us are a part of of. The organizers and others have posted articles and research articles about MBC, though they are few and far between. I think I have posted some of them on earlier threads on this site. It is a good place to connect with other MBC women and in some cases their partners/support people. And I believe that there is a MBC group on Breast Cancer .org though I don't go on it often - not because it isn't good but I find reading too much about MBC is difficult - then there is the practically reality of how much time can I spend on the computer on any given day! I check this site regularly but unfortunately have not been posting much lately - I am a candidate in the Provincial Election in the Ontario - Oct .6. Busy but a good distraction from my BC worries- though job 1 is my health and family! Thanks Steve for alerting me to this thread. love, Tracy in Toronto |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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TracyAMac
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Posted: Aug 07 2011 at 3:18pm |
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Steve and I have been comparing notes on articles about Metaplastic BC - (almost always TNBC too). I apologize if this is a repeat of an earlier post. The article does a good job of defining the 5 sub types of MBC, and includes pics of various cell types but as the article concludes there are some limitations with the findings as the MBC participants were at an early stage of diagnosis and treatment compared to other research participants.
http://koreanjpathol.org/upload/journal/kjp_44_6_605.pdf Tracy in Toronto |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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SagePatientAdvocates
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Posted: Aug 07 2011 at 5:50pm |
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Dear Tracy,
Thanks for taking the time to find the article and thanks for taking the time to talk. Tracy, as has been reported before is running for a seat in the Canadian parliament (elections in October) and we all wish her the best of luck!!! She is a champion of a better health care system in Canada. Unfortunately, it is beyond my depth to comment competently on the findings. Hopefully we can get some feedback from some experts in the next several weeks regarding this and other papers that I am posting links on below. However, a couple of things bounced off the page. I attended a talk a few years ago given by Michael Press, one of our country’s leading pathologists who specializes in FISH technology regarding evaluating whether HER2neu is positive or negative. He stated that about 15-20% of the time Immunohistochemistry (IHC)incorrectly identified the tumor as HER2neu as negative when in fact was positive. If a tumor is HER2neu+ then the drug Herceptin may be effective. Most major cancer centers now use FISH technology when testing for HER2neu. It seems that the facility in Korea, if I read the paper correctly, only did IHC. Therefore, without FISH some of the tumors may have been incorrectly identified as TNBC. Also in 2010 new pathological guidelines were established so that ER,PR was negative if only <1%. This paper indicates that a higher level was used to determine ER/PR+. In fairness, the guidelines were not established until last year.. Recommendations: The Panel recommends that ER and PgR status be determined on all invasive breast cancers and breast cancer recurrences. A testing algorithm that relies on accurate, reproducible assay performance is proposed. Elements to reliably reduce assay variation are specified. It is recommended that ER and PgR assays be considered positive if there are at least 1% positive tumor nuclei in the sample on testing in the presence of expected reactivity of internal (normal epithelial elements) and external controls. The absence of benefit from endocrine therapy for women with ER-negative invasive breast cancers has been confirmed in large overviews of randomized clinical trials. This guideline was developed through a collaboration between American Society of Clinical Oncology and College of American Pathologists and has been published jointly by invitation and consent in both the Journal of Clinical Oncology and the Archives of Pathology & Laboratory Medicine. ............................. Tracy pointed out that in that paper it was stated that
"What is interesting about metaplastic breast carcinoma is that the outlook and prognosis with respect to 'triple-negative' status is contrary to the norm. Recent studies have shown, contrary to a generally accepted view, that a non-triple-negative metaplastic breast carcinoma actually has a poorer prognosis when compared with the triple-negative metaplastic breast carcinoma." .......... Tracy found one of the recent studies, which was also done in Korea, in 2009 and the above shortcomings, regarding FISH and current standards for PR/ER, also seem to apply. http://jjco.oxfordjournals.org/content/40/2/112.full.pdf ........... The 2009 Korean study was quite small (n=51) and they concluded that women with Triple Negative Metaplastic Breast Cancer had longer survival than women with Non Triple Negative Metaplastic Breast Cancer.In any event, I think it is beyond my abilities to analyze these reports properly and hopefully we will get some feedback at some point. Whether or not that feedback can be posted is another matter but I wanted to post the studies here because metaplastic breast cancer is so rare and so often triple-negative that I wanted the folks here to be aware. If you were told that the predominant type of cell in your timor was e.g. spindle-like but were not told you have metaplastic TNBC it may make sense to have your pathology slide re-evaluated. We have seen here, all too many times, patients being told things by their oncologists that are simply incorrect. One woman, here, was told that her Inflammatory Breast Cancer could not be Inflammatory Breast Cancer (IBC) because “you have TNBC and you can’t have IBC and TNBC at the same time.” That is not the case and I have heard estimates of 30-50% of all IBC being TNBC. It seems the overwhelming majority of Metaplastic Breast Cancer is also characterized as being TNBC so if anyone has told you “you have TNBC so you can’t have Metaplastic Breast Cancer” it also is simply not so. Another woman, here, was told the night before she got a second opinion regarding her IBC that “you definitely do not have IBC.” (the clear implication was “so why waste your time?”) The second opinion proved that it was IBC and TNBC and the actions taken, by her new oncologist, in our opinion, saved her life. I cannot stress, enough, the importance of a second opinion from a NCCN or NCI facility and the importance of a second opinion on your pathology. I know it is difficult for many to do this and I fully appreciate the problems but if you can, please consider getting it done. At times, unfortunately, we need to be advocates for ourselves....a very difficult task, especially when a woman is diagnosed with TNBC and dealing with a myriad of issues. harbin, my heart is with you and I feel we will all learn more about metaplastic breast cancer and metaplastic triple negative breast cancer. Thank you for you willingness to share your story here. It will enlighten all of us. all the best, Steve Edited by steve - Aug 07 2011 at 5:55pm |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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harbin
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Posted: Aug 07 2011 at 7:37pm |
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Thanks for everyone’s response and sharing your story. And thanks, Tracy and Steve, to pull out the extensive research papers and resources. This helps me to understand more about metaplastic BC. In my case, I had three set of slides from the three surgeries. The original pathology report simply says: “Invasive poorly differentiated carcinoma”. The 2nd and 3rd from the chest wall and lung surgeries are reported as: “Poorly differentiated carcinoma with focal spindle and anaplastic cells that are consistent with focal sarcomatoid differentiation.” "High grade matrix producing metaplastic carcinoma..." “...Purely spindle cell proliferation with prominent chondroid matrix producing component.“ For sure, the characteristics of the cancer cells are distinguished from other TNBC cancer. It seems that the researchers and doctors are still trying to define the new entity based on the features of those cells. I guess since this is the area that is mostly unknown for now, the treatment are same as for other TNBC. I am still under PARP treatment. Currently, I have one 1cm nodule on my right lung and it was stable from last scan. If I don’t go for the MDA trial, the recommendation from both MDA and UCSF would be the Ferrero trial (from UAB) as my next choice. Pam, good luck on your scan this monday and hope you are in NED for a long time.
Thanks everyone again for your response. Best wishes to you all - Harbin Edited by harbin - Aug 07 2011 at 8:30pm |
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4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery 6/10 Lung mets 10/10 Parp 05/11 Surgery on 2 lung nodules 08/11 Parp failed 10/11 Cyberknife 1 lung nodule |
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judylynn
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Posted: Aug 07 2011 at 8:39pm |
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I have metaplastic, TN, breast cancer. My oncologist said that it is rare. According to her, it typically spreads to the lung so they watch for that in terms of recurrence. Several articles I have read say that good results have been achieved with chemo. I had chemo and radiation.
hugs and prayers,
Judy
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TN metaplastic breast cancer; had mastectomy; completed chemo and radiation
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lizhou
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Posted: Aug 10 2011 at 4:47pm |
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I have TN metaplastic breast cancer. So I had neo-adjuvant chemo AC/Taxol, double mastectomy and radiation. It was more than 2 years old.
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harbin
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Posted: Aug 10 2011 at 9:09pm |
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Judy & Lizhou, Thank you for your response. I am glad that you all had successful treatment. All the best to you. -harbin
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4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery 6/10 Lung mets 10/10 Parp 05/11 Surgery on 2 lung nodules 08/11 Parp failed 10/11 Cyberknife 1 lung nodule |
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mags20487
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Posted: Aug 22 2011 at 7:52am |
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thank you all for the great information. I was just diagnosed with metaplastic on Wed and am having bmx on Tuesday this week. I will ask that they retest the tumor to be sure that it is metaplastic type. I have been researching as much as possible but some of it is outdated and depressing. Will make sure that my onc sees this info as well and may make an appt with MD anderson in Orlando after surgery
Maggie
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Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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SagePatientAdvocates
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Posted: Aug 22 2011 at 8:48am |
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Dear Maggie,
I would suggest you ask for a ‘second opinion’ on your pathology report, as well...If you are planing to go to MDA, I would suggest you have them do it so that they already have the work done if you go to see them. From my experience, whenever you go to MDACC they, most often, want to have their own scans done and their own pathology lab analyze your slides. Please ask your oncologist to speak to MDACC about a clinical trial MDACC has- http://clinicaltrials.gov/ct2/show/NCT00761644?term=doxil%2C+bevacizumab+Temsirolimus&rank=1 all the best, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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SagePatientAdvocates
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Posted: Aug 22 2011 at 8:50am |
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Dear Maggie,
I am searching for the right words to say to your regarding your upcoming surgery.. Nothing can properly express what is my heart but you shall be in my prayers for a non-eventful procedure and a smooth recovery. in your corner, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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TracyAMac
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Posted: Dec 28 2011 at 8:08pm |
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Bump
More on Metaplastic BC as posted by Steve earlier I hope 2012 brings much happiness and good health to all of us Love Tracy in Toronto |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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SagePatientAdvocates
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Posted: Dec 28 2011 at 8:27pm |
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Love back at you, Tracy..
how is your recuperation going? wishing you a lovely 2012.. hugs, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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TracyAMac
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Posted: Dec 28 2011 at 9:02pm |
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Hi Steve thanks for your note and thanks to everyone who has sent me good wishes pre and post surgery.
Recovery is going well..had all but 10 of my 100+ staples/stitches taken out of my leg yesterday. It is definitely a more difficult physical recovery as compared to my mastectomy last year or when the first prosthestis was put in 31 years ago but the blessing is that I am not facing chemo this time. Pain is now primarily isolated to the knee area when I am up and walking short distances (with a walker) or doing limited bending - I am told this may increase once the full physio program starts in Jan. I have a Personal Support Worker helping me a few hours a day and the kids are home for xmas break which is great. Every day I am making more progress. Was able to go to my dad's for a few hours and join our extended family for xmas dinner. Timing of the break of the old prosthesis and the mid Dec. surgery worked out welll for my new job as a Member of Provincial Parliament. The Ontario Legislature does not resume until mid Feburary. Meanwhile I can a do some work at home in the new year related to my duties as a Parliamentary Assistant (Junior Minister) for Children and Youth Services. I also recently learned that I have been appointed as Vice Chair to the Cabinet Committee on Health Care, Education and Social Services - all areas I am passionate about! Tracy |
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TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells Taxotere&Cytoxan x6 Bone cancer 1980 age17;surgery&chemo AC+Methotrexate BRCA-ve On hormone therapy & Metformin Trial |
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123Donna
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Posted: Dec 28 2011 at 9:10pm |
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Tracy,
It sure sounds like you have a big recovery ahead of you, but making good progress. I admire your strength and passion to help others. I hope you can make a big difference in the lives of your fellow Canadians. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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SagePatientAdvocates
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Posted: Dec 29 2011 at 7:41am |
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Dear Tracy,
congratulations on your recent appointments. it is an honor to have you in our midst. wishing you and your loved ones a Happy New Year, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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