My Aunt was dx Metaplastic, I’m IDC what are key differences?

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Anonymous
Anonymous Member Posts: 1,376
edited June 2021 in Metaplastic Breast Cancer (MpBC)
My Aunt was dx Metaplastic, I’m IDC what are key differences?
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  • mcmanus33
    mcmanus33 Member Posts: 13
    edited May 2021

    Hello Beautiful Warriors 💕 I'm 9 years in to my IDC Triple+ Metastatic journey (Stg 4 de nova 2012 at age 33, now 42) and my Aunt was just diagnosed with Metaplastic Breast Cancer. I'm worried she's not going to advocate as strongly for herself or learn as much about her Breast Cancer as I did myself.

    We just found out today. What differences have you found about Metaplastic from other forms of Breast Cancer? What obstacles have you run into because of it's rarity. My Aunt is in her early fifties and lives in a small rural Canadian town. Knowledge is going to be power!

    With thank and love!

    Sara

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  • Rosiecat
    Rosiecat Member Posts: 1,111
    edited June 2021

    Hi Sara,

    You don't mention whether your aunt's metaplastic breast cancer is triple negative or hormone driven. Most are triple negative. I was diagnosed in August 2018 and was never given any significant information about metaplastic cancer, only that as it was extremely rare there was very little reliable research. It's very aggressive, more so than simple triple negative cancer. Chemotherapy has mixed results as many metaplastic tumours are resistant to chemotherapy. As so little is understood about metaplastic the usual treatment is surgery followed by chemotherapy. In the UK radiotherapy is not offered to patients who have no positive nodes and have opted for mastectomy like me. However, more recent research suggests that radiotherapy is beneficial to metaplastic patients and I would have asked for it had I known at the time. My chemotherapy (FEC T) was 3 x3 weekly doses of FEC followed by 3x3 weekly doses of Docetaxol. Hard going but doable.

    Metaplastic breast cancer, unlike other cancers usually bypasses the lymph nodes. Local recurrence is common, but treatable. Once distant mets are discovered treatment is extremely difficult. Your aunt would be well advised to ask for her pathology report which will tell her which particular metaplastic subtype she has. Mine is spindle cell (the most common) mixed with adenosquamous. I should warn you that looking at Dr Google is unhelpful and comes up with the frightening 'poor prognosis' label without explaining that when studies are undertaken, due to the rarity of metaplastic cancer, the participants often have other serious health conditions or are already at stage 4. So not a level playing field at all. I'm nearly three years out and there are a few posters on other threads here who are several years out with no recurrences. At least one poster was allergic to chemotherapy and had to stop, but has been cancer free for several years. There are many survivors.

    Your aunt needs to push for surgery as soon as possible. As you say, knowledge is power, so she should ask her breast surgeon and oncologist as much as possible, always take notes. Never be afraid to seek a second opinion at a different hospital, no doctor worth her salt would mind your aunt double checking - I did and found it very helpful.

    I'm on the triple negative thread calling patients from the UK. People from Canada, America, Australia and other places also post on the thread so your aunt would be very welcome to join us.

    It's good that she has you for support. Let us know what happens.

    With very best wishes,

    Gill x




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  • mcmanus33
    mcmanus33 Member Posts: 13
    edited June 2021

    Thank you Rosiecat. I very much appreciate all of the information you have shared.  My Aunt whose name is Cindy, sent me a message late last night and let me know that hers is Triple Negative. I’m Triple Positive, so it truly does seem like our two Breast Cancers are complete opposites. 

    I have advised her to push for surgery ASAP, as well as full body CT scans to check for spread to other areas (organs & bones).  I wish I could jump through my phone and go with her to her appointments, because it’s all a foreign language to her right now, as it was to me 9 years ago. Sadly, unlike me, I don’t know if she will have the sense & strength to advocate for herself as strongly as necessary. 

    I’m glad you mentioned the sub-types. I will ask if they said anything like that to her. So much to learn again...

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  • Rosiecat
    Rosiecat Member Posts: 1,111
    edited June 2021

    Hi Sara,

    Glad I was able to pass on some 'insider' knowledge. I check the thread regularly so just ask if there's anything you think I might be able to help your aunt with.

    Best wishes,

    Gill x

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  • Carpe-Diem
    Carpe-Diem Member Posts: 49
    edited June 2021

    Hi McManus33 - RosieCat stated the status of Metaplastic very well. Unfortunately because less than 1% of the population get this breast cancer type, very little is known and the treatment given follows what they give triple negative BC patients. There are two schools of thought - surgery right away to get it out of you, and then at MD Anderson, they seem to start you on chemotherapy to determine whether chemo actually works to shrink the tumor or not. They have several ongoing trials at MD Anderson, and if the tumor does not shrink they give you other immunotherapy. Other studies say, preadjuvant chemo is not necessarily better. So who knows. There is a good recent article regarding metaplastic -- if you google this title, you ought to come across it - A comprehensive overview of metaplastic breast cancer: clinical features and molecular aberrations found in Breast Cancer Research dated November 4, 2020. It is complicated but you can understand some of it and perhaps share with your aunt's doctors.

    Also, there are a few groups on Facebook - I am a member of one, where the ladies share information or you can also ask questions. The site I am a member is Metaplastic Breast Cancer Global Alliance and you can ask to be a member as support to your aunt. I personally prefer this board, but I have also learned and met other ladies on the facebook site as well.

    I was diagnosed in December 2020, and had two surgeries followed by chemotherapy. I just finished my chemotherapy treatment yesterday, and will be moving on to radiation. Mine is even more rare because it is a second time I have had breast cancer in the same breast. First time was IDC and lobular ER + and now it is metaplastic TN.

    Wishing your aunt all the best. Please try to help and be her advocate even if she can call you and patch you in while meeting with her doctors.

    Feel free to ask us any questions you may have.

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