I was diagnosed with this rare breast cancer. No one seems to know a whole lot about this type of rare cancer.. anyone else have it??? Perhaps someone out there has some information for me.
I am not familiar with it but I hope someone will post some info for you soon. In the meantime, hugs.
I have done some research on apocrine metaplasia because it turned up in my path report. Apparently it is a precursor to metaplastic carcinoma and frequently co-exists because the cells are simply in a different stage of developing into cancer. Apocrine metaplasia is sweat gland cells that appear in the breast. They are out of place and I believe that they think that cells have turned into sweat cells. If you search metaplasia in wikipedia it tells you more. I think there can be different kinds of metaplastic breast cancer depending on which kind of cell has replaced the breast cell. Did you have apocrine metaplasia? Perhaps if you search that term, you can find more. I would paste some things that I have found but I can't figure out how. It doesn't seem to want to let me paste. I hope this helps some. It apparently is very rare. I think I have seen other people on this list who have it. Best wishes!
Hi again Shelley-
If you search metaplastic in the search box on the upper right of this page, you will find others who have this. Perhaps you could PM them for help. Unknowns are always hard. That's why this forum is so wonderful because it helps you to connect with others who have similar concerns.
Hi Shelley..Im not around here much anymore...a bit of a low time with me recently since dh has just been diagnosed with prostate cancer(knock on wood) so far looks like well confined. In Aug 2004 I was diagnosed with metaplastic carcinoma which means that in Aug of this year I'll be 5 years out from diagnosis. There is a some research out there on metaplastic(use search terms metaplastic breast), if that is your thing. I have about 50 journal articles saved if you wish to read any. Let me know if you're so inclined. You may not want to do that right off the top though until you get a tad more familiar with everything. A couple of things to note. First, if you do research you absolutely will find articles that indicate "metaplastic BC has a poorer pronosis thatn IBC ". Take a deep breath, and dont panic(been there done that), because right after that you'll find articles that will tell you that the prognosis is the same. Because it still is so rare there is alot they dont know.
Secondly, I dont know where you are but make certain that you are treated by a major cancer hospital if that is viable. My surgeon who has been around for awhile and specializes in breast C, only had one other metaplastic case, my oncologist had a few and was at a cancer hospital. I went to the Mayo for a review of my treatment just to be on the safe side. Even they had not seen alot of metaplastic but more than most others.
Thirdly, get a 2nd opinion on your pathology slides. Did I say that loud enough ? GET YOUR PATHOLOGY slides read elsewhere Yes im yelling at the top of my lungs ! Very few pathologists have seen metaplastic, and you want to be absolutely sure what you are dealing with. My local hospital, gave me one report, when I went to the cancer center for chemo and rads, they read my path completely differently, and thats when my slides went to Dr. Rosen who is an expert on breast pathology(ty once again to Shirlann who wisely suggested I do that). This is even more important now, than when I was diagnosed because there are certain chemos avail that target certain things(Egfr overexpression as an example)that are usually present in metaplastic carcinoma. You want your oncologist to be operating based on correct info. More importantly, Im sure everything will be fine down the road, but if it isnt, and you do have a recurrence years later, there will be many more treatments than there are now(there always is) and they may have something that will work on metaplastic specifically, and if the worst were to happen you'll want to know .
Hopefully i havent overwhelmed you with too much too soon. If you do want to communicate with me, send me a PM, and I'll give you my email address. As I said, im not here that often now and once things get sorted out with hubby I'll be back to my normal routine. If you're wondering , why am I here when I said hubby has prostate cancer and this is a BC board, let it suffice to say, stick around, and you'll feel the comfort and support of these boards. Sort of like Mom's chicken soup when you had a cold as a child.
I have metaplastic cancer too. We are in the 1% of breast cancers.
Hi KarenI see you have joined our metaplastic group....I was diagnosed in Dec., and have just finished chemo in June. I'm sorry you have joined us....Have you had your surgery yet? I saw that you were debating having mast vs partial. I went with the bilateral...but I had DCIS in the other breast back in 2004, so it was already 1/3 gone. I hope you stay on the boards here, there aren't many of us metaplastics here, and some women don't stay and post.....and some do, which is wonderful, you never know what you may learn from someone else in our subtype.....Hope you are feeling well, from reading your posts, you seem to have an attitude and strength about you that will help you get through the next few months of tx.HugsJudy
I'm 46 years old living in California.I'm new to this site.Originally,I was diagnosed with invasive ductal carcinoma,triple negative on May 2009.I went through DD AC+T.But,after I started Taxol,the tumor grew back.I had 3 Taxol and I went to surgery.They took 7cm tumor.The tumor,21 lymph noodes, and skin went t lab.I found out from my pathology,I have Metaplastic carcinoma.Lymph noodes and skin were nagative.I'm recovering from surgery and going to have radiation soon.I don't hav knowledge of this rare aggressive cancer.The pain of my breast were so bad and I was on morphine before surgery.After the surgery,I'm excercising and I'm not taking any pain meds.My Dr. said that they don't know what cause this cancer.I can't find too many information of this cancer on web site.I just have to stay strong and want to join some support group.How are all you doing?
Dear Cheechan , My sister has Metaplastic breast cancer.your story sounds much like hers. She was diagnosed in Feb 08 after going to her doctor since Sept 07. He thought it was just a cyst . Evidently it looks much like a cyst .The doctor just got fluid out and disgarded it . Then blood 2 or 3 times after that over the next 5 months befor he finally got it tested. Being very rare they couldn't figure out what it was after the biopsies until March 08 . Then because it was so large ,tried to shrink it with A/C and taxol. It kept growing after the chemo so they decided to do a mastectomy in May08 (8cm).3 weeks after carboplatin + taxol and radiation it came back in January 09 (3cm) . Then Gemzar and taxatere and it came back while she was taking it (1.5cm) in June09. Got second opinion at md anderson . They pretty much agreed with Vanderbilt. Then 3rd recurrence in August 09 Same area as the other recurrence eccept this one inoperable because it is wrapped around nerves and vessels. Now they are trying to shrink it with ifosfimide nd A/C dense dosage. She has had her second treatment and this month they will check to see if it is shrinking before they give her the third treatment. It was 8cm in August. All recurrences are under the arm area . This is pretty scary but we are hoping and praying that it will shrink. She lives in Nashville area.Maybe we can keep in touch and I can let you know if this chemo is working. Stay strong and God bless you
Hi Sibling.I'm so sorry for your sister.And I'm scared,too.I sending your sister a lot of prayer.I will pray everyday.I wonder she tried EGFR(Her-1) tyrosine kinase inhibitors? I hope her tumor will respond to Chemo.I feel like her battle is not only hers.It's mine,too.She needs lot of support.Please stay srong for her.And keep in touch.
Hello Cheechan, Thank you so much for the prayers. We did ask the doctor about the EGFR tyrosine kinase inhibitors and she told us that her cancer would not respond. I know she is HER2 neg but we didn't get an HER 1 result so I'm not sure why the doctor thinks it would not work. We are just trying to be optimistic but it's hard. Good luck to you and I will let you know if the cancer shrinks with this chemo. She will know more after her PET scan the 26th.. In the meantime I pray that you will continue to do good.
I was diagnosed with metaplastic carcinoma in July 2009 and have also had difficulty finding much helpful info on it. Had a lumpectomy and then sentinel node biopsy and began chemo with taxotere and cytoxan two weeks ago. My oncologist and surgeon both told us this type of cancer is likely to recur, but not in the breast. Recurrence would be in another part of the body (likely bones?) but would appear as a different type of cancer. What I understood is that the metaplasic changes cells into different types of cancer depending on where it lands?? My tumor was not attached to the skin or chest wall, and there were no abnormal cells in the sentinal node. We decided to do chemo and radiation anyway because of the wierdness of the metaplastic cancer. I may not have this completely right, but sure am glad to find this thread. I'll return often to share the wisdom and support of you all. peaceful sleep to each of you.
I am glad you found this thread too . As I was telling Cheechan I will post and let you know if the Ifofamide and Adriamycin shrinks my sister's tumor. She is having a PET scan next week. What kind of chemo are you taking ? My sister has had 3 reccurences but under the arm on the same side as the mastectomy. Her's has grown really fast but from what I understand they have changed some with each one. I guess that is what you were talking about when you said it changed depending on where it lands even though it is the same area but more regional than local.I will keep you in my prayers and hope it doesn't return. BTW, what size was your tumor? Thanks and good night to you too.
I see that you are on Cytoxin and taxotere. Sorry I didn't remember seeing that.
Hi sibling--how wonderful that your sister has you!
This is all pretty new to me and I have a hard time remembering all the info I've been gathering and sorting it all out. My tumor was a little under 3 cm but it was not attached to the chest wall or the skin, which they said was really good. My doc said that if it returns it will probably be bone cancer, so that's what scares me. My second chemo treatment is Friday 10/30 and am not looking forward to next week. But am willing (right now, anyway) to suffer this for prevention. Hope it's worth it. My husband says anything is worth it, as long as we can have more time together. He REALLY loves me and I'm so lucky to have him.
Thanks for responding to me. I will pray for you and your sister, too.
I was diagnosed with a mixed tumor, metaplastic carcinoma as well as mucinous. It was 1.4 cm, no lymph node involvement. At first they say they found slight ER pos but the surgeon feels it is really triple negative and that the ER pos they are reading is from the mucinous cells that are in the mixed tumor. I am looking into getting a second opinion especially from pathology. I had bilateral mastectomy two weeks ago and am scheduled to start chemo (adriamycin-taxotere for 4 rounds). This is all very confusing. My surgeon & oncologists are trying to reassure me that my odds are no worse than other stage 1 cancers that are high grade. The surgeon said that there is some scary stuff on the internet but that there are contrasting studies that show that this type of cancer is not necessarily any worse than other bc's for stage. I am not sure what to think. I'm going to Dana Farber in Boston for treatment. Right now looking into how to go about a second opinion and where.
Hi , My sister got her PET scan results and it showed that the tumor has not grown nor spread but looks different so The doctor said she thought the chemo is doing something but too soon to see any significant change. She is getting 2 more rounds then will do another PET scan to look for changes again . In the meantime she has gotten the H1N1 virus and is in the hospital but still getting chemo.Just wanted to let you all know how that Ifosfimide and Adraimycin was doing. I hope you can get second oppinion Zuzu. Also Querida, I'm glad you have a good husband. My sister's husband has been very supportive also. Will keep both of you in my thoughts and prayers.Thank you for the prayers Querida.
Cheechan, I appreciate your kind words and I also feel that your battle is ours too Since ny sister's tumor has not grown I think that is good newseven if not the greatest. I will continue to pray for you.
My mother (age 68) was just diagnosed wtih metaplastic carcinoma. We don't have too much information yet, and probably won't for a week or so. I would love to hear from any of you about where you went for treatment that specializes in this. I hope all of you that have been dealing with this are doing well.
Olivek, My 68 year old mother was just diagnosed with metaplastic carcinoma also. We have been told by two oncologist that she is in stage 1. We went with a second opinion because the first was unsure as to the treatment she should receive. They told her that she was right on the line of being a triple negative. There was one hormone receptor that showed so that kind of made them question the treatment. I am very concerned because of the rarity of this cancer and am also looking for a treatment center which may specialize in this particular type of breast cancer. I will be researching and will let you know if I find anything that will be helpful to you. Please do the same if you should find anything you think is of any importance. My Mother is suppose to start chemo in a week and a half. Will keep your Mom in my prayers. Keep in touch.
Hi all - I am new!!!
I am 34, went in for preventative mastectomy (as BRCA1+) however found 35mm tumor, not in lymph, triple negative - diagnosed METAPLASTIC just 4 days ago ...
Am still coming to terms with and looking for advice.... Am in Perth, Western Australia and hence not many other people in my situ or oncologists have dealt with over here.
I was diagnosed with Metaplastic Carcinoma Triple Negative in Sep. of 2007 at age 37. You can look at my signature for my stats. I opted for a bilateral mastectomy (had radical on cancer side) because of the agressive nature of this cancer. I then did 5 months of dense dose chemo 4 Taxotere and 4 A/C. Heavy Chemo is the only known treatment for Triple Negative Breast Cancer, so I say hit it hard! I am 2 yrs 4 months post diagnosis and doing well! I say we can beat the odds and the stats and live to our full potential! I know I intend to! If you ladies have any specific questions please feel free to PM me and I will help as much as I can. Also I make aprons for post surgery to hold Jackson Pratt Drain Blulds, quite a pain to deal with. If you would like I can make some for you.
Have you had any reoccurances or problems since chemo/mast...
Ladies anyone else had different chemo drugs??
No problems...so far so good! The only thing I regret regarding my treatment is that the tumor was removed before chemo. Everyone was so sure it was not cancer that I had it removed surgically pre chemo. For Triple Negatives it is best to get chemo 1st to make sure it is shrinking the tumor before surgery is done. For me they just gave me the generic full blast chemo, and we hope it was the right one! So far I am fine with no recurrance. Still have 2.5 yrs til I hit the feel better zone, but I am sure I will get there! Positive thoughts breed positive results! At least that is my theory!
Has anyone heard of almost triple negative.....except for one hormone number showing up?? Not sure what the difference in treatment would be. The oncologist told my mother that a mastectomy would not be needed. I am not so sure I agree with this. If anyone has been told different please let me know. Also, is there anyplace that is doing special studies or specializing in metaplastic. Maybe looking for a breast cancer center for my mom to go to.
I am triple negative stage 1, and I met a woman who had metaplastic triple negative bc. She had neg nodes and good margins with lumpectomy. She had one round of AC chemo then had to quit. She did not do rads. Anyway, she is four years out, and perfectly fine with NED.
I am Metaplastic, triple negative - definitely, definitely go somewhere that knows about Metaplastic as it should be treated differently and more aggressively!!
Hi, My mom (68) has been diagnosed with this and is scheduled next week to have a double mastectomy. I am wondering who speciallizes in this...Where did you all go for treatment? We are still looking for an oncologist.
Regina, I would be interested in purchasing an apron from you. Is there a way I can do this?
Hi Lis (Smiley_Oz),
My sister is in Auckland, New Zealand and she was diagnosed with breast cancer on Feb. 8th. Her full pathology report will be out next Thursday, but the doctors are considering the possibility of a metaplastic cancer as they saw some squamoid appearance. She had her surgery done last Friday and is recovering well. I know seeking a second opinion is important, but unlike in the United States, I don't know where to get a 2nd opinion in NZ or maybe Australia. I'll keep posting on my sister's diagnosis and treatment. If you find any good pathologist and oncologist in Australia, please let me know! Thanks a lot!
This past few weeks had really been hard since I knew my sister got BC. We dare not tell our parents yet as my mother has pretty bad high blood pressure and my grandpa died of stroke. So it is only me supporting my sister and I'm here in the US and my sister is thousands miles away in New Zealand. I'm very happy to find this forum and I will introduce this to my sister at some date in the near future.
In my sister's report, it said "GCDFP negative, the tumor is strongly positive for E-Cadherin." Do any of you know what it means? Thanks very much!
I also have metaplastic breast cancer. I was diagnosed in November and since then have had 5 operations. I am currently doing FEC-D Chemo and have had a bit of a tought time with it all. I started a blog on my metaplastic breast cancer at http://www.benaroberts.com if you want to have a look.
There are only 1% of us so would love to hear from you and share comments on how we are all doing.
They also thought my cancer was a cyst at first - also because it was very very painful but it grew very fast and hurt a lot.
Hugs to all, Bena