Just Diagnosed with Metaplastic BC in reconstructed DIEP Breast

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Carpe-Diem
Carpe-Diem Member Posts: 49
edited May 2021 in Metaplastic Breast Cancer (MpBC)

Hello - I previously had IDC and LBC breast cancer in 2014 and went through chemotherapy, mastectomy and DIEP reconstruction. I had been taking anastrazol (Arimidex) since 2017. Everything looked fine until a suspicious area showed up on first MRI (since 2014 treatment done in February 20120. Drs were unable to do a biopsy because so close to the chest wall. Then COVID happened and we decided to wait for 6 months for MRI in October which showed this irregular mass had grown. Went in for an excision biopsy on December 7th, 2020. The original pathology determined it to be a sarcoma possibly due to radiation. Went to a different hospital with a sarcoma program. On January 22nd, had surgery for removal of tumor and resection of chest wall and the biopsy of the tumor determined that I have metaplastic BC triple negative. Luckily the surgery didn't require removal of my ribs because they obtained clean margin. But clean margin on chest wall was only 1 mm. Sarcoma diagnosis had no treatment options other than surgery but with a diagnosis of BC I have some options for treatment. My oncologist gave me the choice of getting proton therapy radiation (second time the breast area is receiving radiation) or a thoroctamy surgery (removal of two ribs). I am opting for the radiation treatment as it is less severe than the surgery. And I need to get additional chemotherapy. Before we go onto treatment, my breast surgeon and I have decided to remove the remainder of the breast as it is going to get harder and more deformed with radiation. I think I'm going flat and don't want additional reconstruction surgeries which are not that successful post-radiation (at least in my experience).

I thought it is important for me to write about it because as more folks are diagnosed with MpBC, it will help them navigate in this area. I know MpBC is very rare and there are not many of us but wondering if any of you were diagnosed with it in a second go around with BC or are aware of it growing in a reconstructed DIEP flap breast? Also interested in hearing your experiences and how you have managed with this cancer? It has certainly thrown me for a loop and I'm trying to learn as much as I can and move forward. It has been rather all consuming since there is no standard treatment regiment for this kind of BC.





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


    Hello Carpe-Diem,

    I was diagnosed with triple negative metaplastic breast cancer two and a half years ago. No recurrence, but as the risk of recurrence is so high with metaplastic I decided against breast reconstruction. I wanted to be able to see and feel any problems as soon as they occurred. Going flat on one side has been fairly doable and I don't regret my choice, I use a gel prosthesis when going out, but don't bother otherwise.

    Treatment for metaplastic cancer is tricky as it is often chemotherapy resistant. I was told that taxanes could be effective to some degree and I was given 3 rounds of Docetaxel. Who knows if FEC chemo worked at all, but I was given this first, very soon after my mastectomy. I was told that I wouldn't be offered radiotherapy as I'd had a mastectomy. I would have preferred to have had the option though as my surgery only gave me a 3mm clear margin.

    Metaplastic breast cancer is very rare and very aggressive, but many women do survive. I'm hoping to be one of them and I hope you are too.

    Let me know how you get on.

    Best wishes,

    Gill X



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

    Hello Rosiecat -- Thank you for responding. It amazes me how few of us there are. Maybe it also has to do with the fact that it is difficult to diagnose sometimes. I am glad that so far you are doing well. I am going in this Friday for surgery, and will be starting chemotherapy in three to four weeks. Recommended regiment for me is Cytoxan and Taxotere - four rounds three weeks apart. I am hoping it is effective.

    Again, I appreciate your reply and the positive words. We march forward.

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

    Hello Carpe-Diem,

    Sending my best wishes for Friday. Surgery is our best line of defence with metaplastic - which is why I opted for mastectomy rather than lumpectomy. I just wanted the whole breast gone. I have absolutely no regrets about that decision.

    I have a friend in Canada who is now more than five years out from her diagnosis of metaplastic breast cancer. That is five years after a recurrence along the line of her lumpectomy scar. If she can beat it, so can we.

    You'll get through this, just keep ploughing on.

    Gill X

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  • Hope999
    Hope999 Member Posts: 46
    edited February 2021

    Hi Carpe Diem, my MpBC was 1mm away from the chest wall also. I think it's important that your doctor consults with an oncologist who is proficient in MpBC and not one who just sees patients for their own stats. I never opted for reconstruction because I didn't want to disturb the beast. Personally I would take the hardest solution, which is your case would the surgery, but I understand it's your personal decision.

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

    Hi Hope

    Thank you for the response to my post. First surgery the thoracic surgeon took out the tumor with clean margins except near chest wall which was 1 mm. Yesterday I had surgery and my breast surgeon took the entire remaining tissue in the reconstructed breast (a full mastectomy). I’m going leave that side alone. Next step is chemotherapy and after that I will probably have proton radiation. I am glad to see you have done so well. My first round of chemo was similar to yours - AC and Taxol. This time I will be getting the cytoxan and taxotere.

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  • wrenn
    wrenn Member Posts: 2,707
    edited February 2021

    I'm sorry you are going through this Carpe-Diem. It sounds like you have a plan but what a lot to have to process.

    I was diagnosed with sarcomatous metaplastic 7 years ago and couldn't have chemo (complications with first dose). So basically I ony had the surgery but did have good margins. I am doing fine 7 years later at 74.

    I am hoping for smooth sailing for you with the rest of your treatment. Take care.

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  • Srikhy
    Srikhy Member Posts: 1
    edited March 2021

    I’m so scared bc I just read my biopsy report. My oncologist hasn’t said anything yet but we have an appointment Friday to talk. I had a mastectomy on feb 3. The report shows triple neg invasive ductal carcinoma w/ Foci of Metaplastic features (50%). Not sure what this means🤷🏻♀️ Size 46mm Grade 3 Starting 16 rounds of chemotherapy on March 1

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

    Srikhy — I am so sorry to see that you may have Metaplastic breast cancer which is triple negative. It is a rare form of breast cancer but as you can see from the others who have posted, they have been able to treat it and people have had good survival rates. First thing first, we have had our mastectomies, and now waiting to start our treatments. I will probably start my chemo in late March. Don’t panic until you see your oncologist and see what he has plannedfor you. We are all here for you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2021

    Dear Srikhy - We certainly understand your fears. We're so very sorry to hear of your diagnosis, but we're really glad you've found our community. Besides the peer support and personal experiences you'll get here in the discussion bards, you may want to check out some of the following pages of our main site that will help you better understand your diagnosis and pathology report:

    Getting Your Pathology Report

    Triple-Negative Breast Cancer: Overview, Treatment, and More

    Breast Cancer Cell Grade | Breastcancer.org

    Also, may we suggest that you check out and join these forums and threads too as they are relevant to your situation:

    Triple-Negative Breast Cancer forum.
    Starting Chemo March 2021 thread.

    We hope this helps! Let us know what you learn at your appointment tomorrow. We're thinking of you!
    The Mods
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  • Rosiecat
    Rosiecat Member Posts: 1,111
    edited March 2021

    Hello Srikhy,

    My breast surgeon didn't mention metaplastic cancer to me either. Like you, I found it on my pathology report. Most metaplastic cancers are triple negative and most are grade 3, though mine was grade 2 which is unusual.

    Surgery is the most effective treatment, that's one hurdle out of the way and your chemotherapy has now begun so your medical team have acted promtly. All looking very positive.

    I've just passed the two and a half year mark since diagnosis, no local recurrence and no problems. Many women survive metaplastic breast cancer and there's no reason why you shouldn't be one of them.

    Hope your Doctor will explain precisely what metaplastic focus means. My cancer comprised spindle cells along with adenosquamous. It's interesting to know more, but doesn't effect treatment.

    Good luck and let us know how things are going.

    Gill x


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  • MpBCAdmin_Jen
    MpBCAdmin_Jen Member Posts: 23
    edited May 2021

    Hi, Carpe-Diem and Srikhy,

    Sorry I didn't see your posts until now. I was diagnosed with MpBC almost 3 1/2 years ago. I had taxotere and cytoxan chemo, followed by a lumpectomy, followed by xeloda (oral chemo), followed by radiation. Finished treatments a little over two yeas ago, and I'm happy to say that I'm doing great! No residual side effects except for a little numbness in the very tips of my fingers (feels kind of like I have a little superglue in my fingertipsbecause the sensation is a little dull), and I have no fingerprints. Also, my hair is a darker color than it used to be.


    There actually are a number of women in a few MpBC Facebook groups, and the groups are a lot more active than this forum. I rarely go on Facebook anymore, but I'd be happy to post the links if you'd like to join them.


    Another web site you may want to check out is the Metaplastic Breast Cancer Global Alliance which is run by women who were diagnosed with MpBC. They are an advocacy, awareness, and information group that has formed some partnerships specifically to help women with MpBC.

    https://www.mpbcalliance.org/


    I hope you are both doing well.


    Take care,


    Jen

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