Anyone have metaplastic squamous cell carcinoma of the breast?

Posted by susan528 @susan528, Jul 6 1:52am

Has anyone been diagnosed with a very rare less than 1% womens breast cancer called Metaplastic Squamous Cells carcinoma?
I have a story to share, a positive one, if there is someone else who has or know someone who has this type of
cancer. I hope to find someone else to share about this. Thank You ladies! 🙏

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@sues2

I was diagnosed with metaplastic breast cancer squamous in January of this year. It started out as triple negative breast cancer and mutated to metaplastic sometime during chemo. I completed chemo, surgury and radiation and now will start on an oral chemo intended for tnbc. There is absolutely no research to show that this will help, but my oncologist thinks I should try it. Any advice on this? Also, I'm wondering if anyone is taking fish oil and what kind? Thanks!

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@sues2 - didn't mention what oral chemo you intent to take for your TNBC. I am TNBC but also BRCA2 and I'm taking Lynparza but I believe that is for the BRCA mutation. How did they determine your TNBC changed? Was it retested after chemo? I also had chemo after dx, then surgery then radiation. But I don't know if there was any retest to determine any change from TNBC.

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@bpknitter53

@sues2 - didn't mention what oral chemo you intent to take for your TNBC. I am TNBC but also BRCA2 and I'm taking Lynparza but I believe that is for the BRCA mutation. How did they determine your TNBC changed? Was it retested after chemo? I also had chemo after dx, then surgery then radiation. But I don't know if there was any retest to determine any change from TNBC.

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I will be taking capecitabine (Xeloda) which is intended for TNBC. They did another pathology test on the tumor after surgery and determined that it had changed to metaplastic. I'm wondering how bad the possible side effects will be from my oral chemo.

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I was diagnosed with metaplastic squamous cell breast cancer when my TNBC mutated to this type sometime during chemotherapy. Anything positive would be greatly appreciated.

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@drummergirl

I also had TNBC, but am unfamiliar with the type you developed. You don’t mention the stage of your cancer.
You might check MD Anderson and their research on lipophilic statins with regard to TNBC reoccurrence. I take Lovastatin in hopes that it will have a positive effect. There is so little available for TNBC

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Thanks for the info on lipophilic statins at MD Anderson. The stage of my cancer at dianosis was 1b since the tumor was very small, 1 centimeter. As I understand it the tumor bed grew to 1.5 cent. during chemo but the TNBC was seemingly gone. In it's place were multifocal small spots of metaplastic breast cancer. I think the stage changed during the chemo, but not sure. The grade did change to a worse prognosis, but not sure. Metaplastic BC is 1% of breast cancers so there has been little research done on it.

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@sues2

Thanks for the info on lipophilic statins at MD Anderson. The stage of my cancer at dianosis was 1b since the tumor was very small, 1 centimeter. As I understand it the tumor bed grew to 1.5 cent. during chemo but the TNBC was seemingly gone. In it's place were multifocal small spots of metaplastic breast cancer. I think the stage changed during the chemo, but not sure. The grade did change to a worse prognosis, but not sure. Metaplastic BC is 1% of breast cancers so there has been little research done on it.

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Curious as to what chemo you had. My initial chemo was only minimally effective. My surgery was good and I was pronounced cancer free, but since chemo did not get all of the tumor, I had another round of a different combo. I am three years past diagnosis and we hold our breath with every check up. How long since your diagnosis and how are you doing?

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@drummergirl

Curious as to what chemo you had. My initial chemo was only minimally effective. My surgery was good and I was pronounced cancer free, but since chemo did not get all of the tumor, I had another round of a different combo. I am three years past diagnosis and we hold our breath with every check up. How long since your diagnosis and how are you doing?

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I'm sorry, I don't remember what chemo I had. Doxetocel maybe? It's around here somewhere, but I've had so many appts, and other issues (identity stolen), that I can't put my hand on it right now. My oncologist wants me to take an oral chemo (capecitebine) and I should have started at least a week ago. But he said there is no research that it will help with metaplastic. It has side effects and I am struggling with making the idea of making myself miserable again with no reason to believe it will help. Kind of a shot in the dark. So I was going to start the oral chemo tomorrow but now I think I probably won't take it. I'm glad to hear you are doing well. I know how scary the check-ups can be. I had estrogen dependent breast cancer in the other breast 20 years ago, but I had no trouble or recurrence from that episode. My latest diagnosis was in early January and I feel pretty good now that I'm off chemo. Thanks for asking.

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@sues2

I'm sorry, I don't remember what chemo I had. Doxetocel maybe? It's around here somewhere, but I've had so many appts, and other issues (identity stolen), that I can't put my hand on it right now. My oncologist wants me to take an oral chemo (capecitebine) and I should have started at least a week ago. But he said there is no research that it will help with metaplastic. It has side effects and I am struggling with making the idea of making myself miserable again with no reason to believe it will help. Kind of a shot in the dark. So I was going to start the oral chemo tomorrow but now I think I probably won't take it. I'm glad to hear you are doing well. I know how scary the check-ups can be. I had estrogen dependent breast cancer in the other breast 20 years ago, but I had no trouble or recurrence from that episode. My latest diagnosis was in early January and I feel pretty good now that I'm off chemo. Thanks for asking.

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I was hoping you were not going to tell me you had CMF as initial chemo. I was given this chemo and it cannot be followed up with capecitebine (Zeloda). My Orlando oncologist and the tumor board apparently did not know this. Thankfully, Mayo advised of this and suggested a different treatment plan. These rare cancers are very challenging. Hope you are researching and asking for second opinions before you reject the Zeloda. Sending you good wishes.

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@drummergirl

I was hoping you were not going to tell me you had CMF as initial chemo. I was given this chemo and it cannot be followed up with capecitebine (Zeloda). My Orlando oncologist and the tumor board apparently did not know this. Thankfully, Mayo advised of this and suggested a different treatment plan. These rare cancers are very challenging. Hope you are researching and asking for second opinions before you reject the Zeloda. Sending you good wishes.

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Have you taken capecitebine? I am wondering how bad the side effects are. I read in the info I was given that they can be worse in older people. I am 78, and my oncologist said that capecitebine might help, but he had no research to confirm this. I hate to give up what may be my short time left to side effects that will keep me out of life as my chemo did, especially if capecitebine will be no help.

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@sues2

Have you taken capecitebine? I am wondering how bad the side effects are. I read in the info I was given that they can be worse in older people. I am 78, and my oncologist said that capecitebine might help, but he had no research to confirm this. I hate to give up what may be my short time left to side effects that will keep me out of life as my chemo did, especially if capecitebine will be no help.

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Hi Sue- I am 75. I did not take the Zeloda because it is not recommended after a course of CMF. I had to consult with three other oncologists to determine what I should do instead.
I would suggest some research on recognized websites and some second opinions. Wishing you good days ahead.

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@sues2

Have you taken capecitebine? I am wondering how bad the side effects are. I read in the info I was given that they can be worse in older people. I am 78, and my oncologist said that capecitebine might help, but he had no research to confirm this. I hate to give up what may be my short time left to side effects that will keep me out of life as my chemo did, especially if capecitebine will be no help.

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Capcecitebine was my second to last treatment and I had an issue with my heart do they took me off at once. After one three month course of iV chemo I quit treatment with no regrets. I am on palliative care and trying to live out my life to the fullest. I am 73 this is my second round of cancer I have it everywhere. No need to chase the falling star. Just enjoy my family and lots of hugs and kisses. God bless you all. If I could, I would take all the cancer from everyone and bring it with me. XOMaria

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