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.
Thanks,
Shelley
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flash Joined: Oct 2007 Posts: 655 |
May 3, 2009 09:30 pm
flash wrote:
I am not familiar with it but I hope someone will post some info for you soon. In the meantime, hugs. dcis, idc, pagets er+,pr+ her2+++
Dx 10/10/2007, Paget's, , Stage , Grade 3, / nodes, ER+/PR+, HER2+ |
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floridian Joined: Jul 2007 Posts: 121 |
May 6, 2009 10:11 am
floridian wrote:
Hello - 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! (dense breasts, fibroadenomas, duct ectasia, apocrine metaplasia and undiagnosed lumps)
Dx None |
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floridian Joined: Jul 2007 Posts: 121 |
May 6, 2009 10:16 am
floridian wrote:
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. (((hugs))) (dense breasts, fibroadenomas, duct ectasia, apocrine metaplasia and undiagnosed lumps)
Dx None |
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Babyface Joined: Aug 2004 Posts: 288 |
May 10, 2009 04:45 am, edited May 10, 2009 04:49 AM
by Babyface
Babyface wrote:
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 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 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. |
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Karen09 Joined: Jul 2009 Posts: 127 |
Jul 17, 2009 08:47 pm
Karen09 wrote:
I have metaplastic cancer too. We are in the 1% of breast cancers. Dx 6/8/2009, IDC, 4cm, Stage , / nodes, ER-/PR-, HER2- |
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gcpommom Joined: Apr 2004 Posts: 779 |
Jul 24, 2009 09:16 am
gcpommom wrote:
Hi Karen
The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away. 12/2008: MBC/IDC, 2.9cm, Stage 2, Grade 3, 0/6 Nodes, Triple Negative
Dx 3/12/2004, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes |
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cheechan Joined: Oct 2009 Posts: 3 |
Oct 14, 2009 02:16 am
cheechan wrote:
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? Diagnosis: 5/11/2009, 6cm+, Stage IIIa, Grade 3, 0/21 nodes, ER-/PR-, HER2- |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 16, 2009 01:59 am
sibling wrote:
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 |
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cheechan Joined: Oct 2009 Posts: 3 |
Oct 17, 2009 12:35 am
cheechan wrote:
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. Diagnosis: 5/11/2009, 6cm+, Stage IIIa, Grade 3, 0/21 nodes, ER-/PR-, HER2- |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 18, 2009 12:31 am
sibling wrote:
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. |
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Querida Joined: Oct 2009 Posts: 8 |
Oct 19, 2009 11:43 pm
Querida wrote:
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. Querida Diagnosis: 7/6/2009, IDC, 2cm, Stage IIa, Grade 2, 0/1 nodes, ER-/PR-, HER2- |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 20, 2009 01:52 am
sibling wrote:
Querida, Hi, 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. |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 20, 2009 01:54 am
sibling wrote:
I see that you are on Cytoxin and taxotere. Sorry I didn't remember seeing that. |
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Querida Joined: Oct 2009 Posts: 8 |
Oct 25, 2009 10:10 pm
Querida wrote:
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. Querida Diagnosis: 7/6/2009, IDC, 2cm, Stage IIa, Grade 2, 0/1 nodes, ER-/PR-, HER2- |
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zuzu Joined: Oct 2009 Posts: 1 |
Oct 26, 2009 07:46 am
zuzu wrote:
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. |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 31, 2009 08:45 pm
sibling wrote:
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. |
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sibling Joined: Jul 2008 Posts: 10 |
Oct 31, 2009 08:50 pm
sibling wrote:
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. |
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