Metaplastic Carcinoma
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hello, first of all i would like to thank ALL of you for your post , i have read them shared them.
this is for my sister in law in who i love so very much she is not only a sister in law but she is my kids grandma, my cook my guide and my best friend, she was diagnosed today with MC and ask me to look it up for her on the computer , she is old school and does'nt use the computer. anyway i found this page and though it would be helpfull. she was told something showed up so she went to her doctor who drained fluid out first and sent it off to lab then they did a outpatiant surgery and removed the mass/cys. the doctor told her it did'nt think it looked like cancer but he sent it off to pathogolist one said YES that is it cancer then the other one said NO it was'nt . So it went to cleveland clinic who said it was Metaplastic Carcinoma. her doctor who was Very surpised said its all out but that he wanted to remove the breast and make sure , he Told her it does not spread to the lymph nodes (hope he's right ) this is all she has told us so far, she dont want us to worry , YA RIGHT ! anyway prayers are going up for her and all of you i hope this doctor knows what he's doing.
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Hi Sister-in-law01. Sorry, these threads are a bit slow nowadays, plus this particular thread is a bit older. We have another MBC thread here on bc.org, I think it's called "metaplastic breast cancer" if you search here for it, there is a lot of posts there you could read....but I really suggest you join our Facebook page, we have a lot of women there with MBC who post daily, share info, ideas, thoughts, treatments, etc. I think we have almost 150 members there now.
I know for those not used to a computer, facebook can be a bit tricky, but I think it would really help your sister in law to be able to talk to others out there with MBC. Plus, the forum here on bc.org is amazing, and I always recommend joining a chemo group here.
I hope your sister in law is doing ok, did she have her mastectomy or start chemo yet? Hugs to you both,
Judy
Here is the facebook page,, please mention that you are "sister-in-law01" so I know who you are when you request to join : )
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I would love to join your facebook page too. I was just diagnosed with metaplastic yesterday. Any additional info I can gather at this point in my journey would be great
Mags20487
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Mags,
If you haven't already gone over to Judy's FB page and clicked to join up, just do it and let her know you are from BCO.
No need to be "kind and polite" with metaplastic BC if you ask me. Not sure if you tend to be more of a "kind and gentle" kind of lady or an aggressive kind of lady, but Im thinking this is a time to be aggressive and make noise if you know what I mean. Since this is such a really rare cancer, the more you get to talk with other ladies who have it the better off for you Im thinking
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Hang in there Mags! I was in your place two years ago and I'm here and doing great. Just take it one step at a time and keep your eye on the prize - hopefully remission!!! It is all scary and overwhelming at first but hang in there!
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Hi, my Mom was just diagnosed with TN metaplastic breast cancer...I'm trying to help her find information and support. She doesn't have facebook, but I do. I did send a request to join the page, but it wouldn't give me anywhere to put that I also belong to BCO (newly do, anyway).
If anyone has any idea, are ladies with TN metaplastic candidates for laser breast surgery? She's stage II.
Thanks so much for any help.
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ketara, were you able to get into our fb group?
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Hi I was diagnosed with Metaplastic Breast Cancer in Sri Lanka in May 2009 - I guess they did really well to do that from the stories I am reading. They did it the first time round. I am Australian so I had my treatment here in Australia. It was 2cm so I had surgery, chemo - the nasty red cocktail - can't remember the name (which didn't affect me too badly , guess I was lucky) and then radiation. I was triple negative in relation to the protein markers.
I have been well since then - now they have found a new lump in the other breast - mmm. We shall see. I shall know next Thursday. I did some research and have a number of articles if anyone is interested let me know and I shall email you. It was a confusing journey, what I had read - after surgery said a total mastectomy had a better chance, whether chemo was useful - could not say. Because the numbers are so small they cannot really do proper clinical trials. Secondaries could be in the lungs hence what they are trialling in the states which is not available cheaply in Australia - and not conclusive. However after a lot of vacilating decided to go ahead with the chemo.
I was talking to a friend who had BC and is coming to the 5 yr mark and she said that she always lived in the fear of it coming back. I have to stay for whatever reason - and I think it is something in me - and take no credit for it, I just went through life and didn't think of it, good or bad that is how it was. For myself I am happy with that. Maybe if I thought about it I might have been more disciplined about my diet, which I must say I didn't alter too much. This time I guess I will pay more attention to it.
I want this to be a spiritual journey as well - my brother recently died of mesothelioma - the asbestos related cancer - he said prayer for him was to kneel before God and get up a better man. For some odd reason as I didn't expect it this is really calling me at the moment. So waht I truly want is beyond the cure of cancer to come out of this, whereever I come out - a better woman.
In a dream, a woman gave me a torch when I was searching for something I lost that was really valuable. I have used that torch ever since, and now shine on us all on our journey. Journey well.
.
Because I want to tread
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Hi my 70 year old mum has just been diagnosed with metaplastic breast cancer. I would love any recommendations of sites or places to find information on this. She is leaving to go on a holiday for 3 weeks tommorrow, had a lumpectomy 3 weeks ago and only got results today! They did say it was rare, I hope she has a wonderful holiday withh my Dad he has mesthiolioma from asbestos exposure so its good for them to go and recuperate together. How aggressive is treatment for this? I am not sure my mum will do anything too much. I am more worried about her pain and how it all will be. So scary. Sending love and healing to you all.
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Hello Sophia and Lilduffy. Sorry you are both dealing with MBC. This thread is a bit slow, so please join our Facebook page, we have over 150 women there with MBC, and it is very active, lots of info. Here is the link: http://www.facebook.com/groups/124869030878992/
Sophia, have you heard back about your new lump? The red stuff you had is Adriamycin, I had that too, but had a horrible time with it. Glad it went smoother for you, you never know who will breeze through chemo and who won't I guess. I was diagnosed 12/4/2008, mastectomy 1/2009, finished chemo 6/2009. No new problems, knock on wood. I must admit, I have not altered my diet much, either, and I should. Sorry to read about your brother.
Lil Duffy, sorry about your mom, and your dad, too...yes, MBC is rare, but we get new members every week on Facebook, which has lead me to believe that they are getting better at recognizing it. Also, we have a few women who weren't even told they had MBC, they read it on their path reports later. Is your mom getting chemo? Some women have issues with chemo--from nausea (which they have pretty good meds for now), to fatigue, to neuropathy---while others breeze right through, so hopefully she will not have too hard a time with it. I had a rough time with one chemo, and a much easier time with my second chemo (taxol). A standard treatment here in the U.S. seems to be AC/T (adriamycin/cytoxin then taxol), other countries use different types of chemo. I'm sure she'll do fine, usually a few 'bad' days, then you recover until the next treatment.
Hope to see you both on facebook. You need a facebook account, and be sure to set it up to receive messages. We require that you identify yourself as an MBC patient since our page is a private page, then no one else can read what we post.
This website we're on now, breastcancer.org, is a must for the chemo groups, be sure to join one that starts the same month you start chemo. I am still friends with my chemo group, it is a HUGE help to go through chemo and talk with others who are going through it at the same time.
Hugs, Judy Batchelor
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I am here, too...just receved a post lumpectomy path report - metaplastic. I cannot bear to just sit and wait after radiation, so I accepted an invitation to join a research project - I will be taking daily oral chemo and aspirin for 16 weeks following radiation. The comforting part is that I will be closely monitored for two years. My thoughts are with you
Sher
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Hi Sher. Sorry you had to join us. The research sounds interesting...which hospital is conducting it? This website is awesome for help in so many areas, but if you want to keep in touch with 100+ metaplastic ladies, consider joining us on Facebook, we have a great page there, it is more active for metaplastic-specific ladies. Our page: www.facebook.com/#!/groups/metaplasticbc
Hugs
Judy
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Thanks for the hugs, Judy - here's one for you. The research study is being conducted at Fletcher Allen Hospital, Burlington, VT. They are affilitated with the University of Vermont Med. School. It is a great place to be if you have to be in places like we do - Everyone, from the receptionist to the Director of Oncology, are sensitvie and caring.
'take care,
Sher
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Shirleta, keep us updated on how the research is going. I wonder what part the aspirin plays? Interesting. What is the name of the chemo (pill) you are taking? Are there many side effects? Sounds like a wonderful hospital, it is so important to like the people who work where you get treatment. Hope all is going well for you. Hugs!
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gc- Thanks for the hugs - sending some your way, also. Please note that I just changed my sign-in to something that is meaningful to me. I was using my given name, "Shirleta", that I have never liked. My daughter just named her newly adopted kitty, "Ananda" (it means "blissful", in Hindu or some other language). The name was already in use on this site, so I added the best part of my life - being a gramma!. I will definitely keep everyone posted on the reasearch - I will not be a participant until I complete five more weeks of radiation. The title of the research project is: Low dose metronomic Cyclophosphamide and Methotrexate chemotherapy in combination with aspirin in patirents with stage 2-3 BC who fail to achieve a pathologic complete response after neoadjuvant chemo. The outline states that I was selected as a participant because my tumor did not respond completely to the chemo I had prior to surgey. The research is being conducted to "try to improve the outcome for patients whose tumors do not completely disappear when examined under a microsope"
Possible side effects that only expected in 10% of participant: Low blood counts, mild nauseau/vomiting, liver damage, hair loss that is uncommon at such low doses, but possible, decreased appetite, mouth sores, bladder irritation, other cancers such as leukemia and lymphoma and radiation recall. (I am past child-bearing age, so the fertility warning does not apply to me, but is given)... (hmmmmm....sounds like the infusion chemo side effects I had - darn it all.!) The aspirin is given to hopefully preventn possible blood clots.
One of the chemo drugs I truly dreaded receiving each time was Cyclophosphamide - (Cytoxan). At least I can quit the study if I truly cannot bear it. I hope I can bear it.
Take care,
Ananda
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Ananda, I'll have to read that study info. I think it is a great idea for the aspirin as a precaution against clots...they should do that for everyone (I've read in literature about clots that many believe it should be a common protocol during chemo). I got a pulmonary embolism after my 3rd chemo (AC) treatment. Been on blood thinners ever since, since we don't know if it was caused by having cancer, chemo, or hereditary reasons; all are risk factors, and I fit all 3 of those categories when I got the clot. I hope the chemo goes smoothly for you, and your side effects are not bad.
I like the name Ananda too. It's different. I never liked my name, "Judith", much either, lol.
Everyone have a wonderful Thanksgiving : )
Hugs
Judy
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Anyone that wants additional support there is a great, large group on Facebook. The site is
metaplasticbc@groups.facebook.com
My sister had metaplastic bc in 2006, very little research at that time. This group above is working with a doctor who lost his wife a year or 2 ago from the disease and they are compiling information to help in his research. Please try to contact the person that start it. Her name is Bena Roberts.
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It was such a blessing to find this forum about those with the same diagnosis that I received today, squamous cell MBC. I am also triple negative. Had lumpectomy on 1/4/12, got path report today, and of course, I had to be in the .1% of all bc cases. I see my onc on Jan. 17.
As I read about mbc, I see that not only are there different types of bc, there are 3 different types of mbc. That should help complicate things a bit more
I've sent a request to be added to the Facebook page.
I did a little research online, and saw one article that said that squamous cell breast cancer may respond better to chemotherapy designed for other squamous cell cancers, such as lung or skin cancer, so am going to ask my onc. What is typical treatment for squamous cell mbc? I have quite a list of questions about chemo meds for my onc.
Wishing the best to all!
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Hi - I am new to this forum - diagnosed in August 2011 with metaplastic and Paget's. I am currently undergoing chemo but may have a recurrence already. I am supposed to have my last chemo Friday but we will see. I am interested in the clinical trials for when chemo isn't 100% effective. Any further information on how to find out more? Many thanks!
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JJsmom: I am also squamous cell, diagnosed 12/2008. Thus far, everything is good, no recurrences. I had standard chemo, Adriamycin/Cytoxan and Taxol. Have you been added to our Facebook page yet? I ask because I am one of the admins there, and we need you to respond to the message we send first....many overlook their messages on Facebook. Or, if you are not set up to receive messages, that will delay being added too. I hope you are doing well, and you can message me on FB if you are having problems joining there, http://www.facebook.com/profile.php?id=1706391290
Nancy: I hope the recurrence was just a false alarm, have you found out more yet? You can go to clinicaltrials.gov to check for trials, not sure what is being offered currently. Please join us on Facebook too, the link is above, it is a very active page with over 150 MBC ladies.
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Hi i have been diagnosed this afternoon..at first i was told it was Intraceystic...now this which is even more rare!
They want me to have a masectomy very quickly..followed by chemo for six months and then radiation five months...the end! i cannot have any drugs for this type i was told....any help please...i am nearly 65...and not brilliant health....
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wow Dulcie, the hits just keep coming for you don't they. sorry to hear about that. thankfully, you're in the right place here, of course.
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Can anyone help me here please?
How do i get my Path Report urgently? And my MRI scan...all my appts keep getting cancelled....nothing happening..i am not having a masectomy ...breathing problems and now no trust in surgeon at all!
Does my doc ask the oncologist....to get in touch with me direct? i realise i need those Path Reports...i had biopsies on the 22nd Feb and i saw consultant on 22nd.. and saw him on the 1st March for op 23rd March ..month later...from biopsies...
This has been going on since mid November...
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Dulcie-
If you have not found it yet, there is a very active (over 200 members) metaplastic breast cancer group on facebook. That's the best place that I know of to be in much more frequent contact with ladies that have dealt with MBC in one way or another. I am sure they can help you. The link is http://www.facebook.com/profile.php?id=1706391290#!/groups/metaplasticbc/
I know this is all very frustrating when you don't get the information you want and need. Keep asking, and don't let them keep putting you off. This is your LIFE we are talking about. You are worth it, so fight for what you need.
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Hi, my mom who is age 65 has been diagnosed with Triple Negative Metaplastic Breast Cancer in March 2012. She is recovering from a left side Mastectomy. Course of treatment will be decided during the next 10 days. There has been mention of the ACT Chemotherapy and radiation. We have been informed at Sloan-Kettering Hospital in NYC that her type of cancer tends not to respond to Chemotherapy. We are looking for people who are long term survivors with this type of Breast Cancer.
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http://forum.tnbcfoundation.org/metaplastic-carcinoma_topic9551_post96931.html
Daughter of Kay pls check out above thread at Triple Negative Foundation Discussion Board
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Thanks for the replies. We met with another oncologist, which is a third opinion and he actually disagrees with the ACT chemotherapy and recommends Carboplatin and Cisplatin followed by Taxol. Has anyone heard of these medicines being used to treat Metaplastic Breast Cancer? We have another appointment with him on Monday with a ton of questions, then a decision has to be made as my mom is 3 week post-op and needs to get started on her treatment. Dr.'s say she is ultimately "the boss" and makes the final decision...which dr to choose and which medicines...that's insane! All this is starting to take a toll on her. I have a family of my own, a husband and 2 toddlers and being her main support person, I'm trying my very best to be there and help her through. Thanks for listening and any information would be much appreciated.
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daughterofkay - unfortunately, metaplastic is so rare that there is not much known about it. I have read that it tends to be less responsive to chemo. The chemos I have heard good things about with metaplastic is taxotere/cytoxin (50% responded in a study I saw) and the platins. I did TC - a decision made before I read the study of its success. It seems there is a trend toward the platins for agressive TN tumors. It is considered a very agressive treatment.
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Hi, Irr4993. Thanks for the reply. Choosing the course of treatment is so overwhelming. The oncologist whom my mom felt comfortable with, feels the "Platinum- based" medicines are the way to go but having it conflict with the other 2 opinions just makes it so difficult to decide. Will these medicines be the new thing for patients with Metaplastic Breast Cancer? Is he on to something? Or is he wrong? I'm hoping after our appointment on Monday the decision becomes much clearer and easier to make.
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hi....i was diagnosed with metaplastic last week and would love access to journal articles. joan in west des moines, iowa
PRAISE GOD FOR YOUR HELP
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