Metaplastic Carcinoma?

missarmy04

anyone on here with that diagnosis? Would you be willing to explain your symptoms, testing, diagnosis and treatment? I just read it's a very rare type, so I'm super curious who has it

slv58

Lucky me! I was DX with metaplastic after a local recurrence required me to have a MX. I'm also triple negative. I found a lump next to and under my LX scar 17 months after finishing tx. Feeling a thickening/lump was my only symptom. I was treated with a salvage MX and opted for immediate diep. Then was given chemo again- cisplatin and Gemcitabine which I just completed one month ago. I had extensive rads the first time so can't have that again. The first time I was treated with FEC-D and achieved PCR, so this DX was surprising and difficult to deal with emotionally but I'm happy I'm done with chemo which was very hard on me. Staying positive!

missarmy04

when you had your imaging done, what did your mass look like

pwilmarth

I'm sorry to hear about the metaplastic diagnosis. I was diagnosed with metaplastic squamous cell cancer last December. I am a truly rare breed because I'm HER2+ and usually you're triple negative with this cancer.

It's a mixed bag. I have been told that this type of cancer is aggressive based on studies that are over a decade old. Yet they only identified 55 patients with the diagnosis. We account for less 0.1% of all breast cancer and I am even rarer than that. Because of HER 2+.

My oncologist said we just treat like everyone else because there's no clinical data for this cancer. Good for me, because of Herceptin and Perjeta. And so far, things are working.

I know of.an older thread about this cancer. Despite the doom and gloom from the doctors, there are long term survivors using standard treatment. And given the age of these studies, much has changed since they were published.

Like everyone else, we just keep plugging along.

slv58

Missarmy04 here is what radiological gist wrote after mammogram- " there is a spiculated irregular hypoechoic mass with shadowing and peripheral vascularity" It wasn't until pathology that it was discovered to be metaplastic. Are you concerned about your DX?

missarmy04

I don't have a dx yet. The biopsy was done yesterday. The dr said it looked like some sort of "weird fat". I think it will be benign, but when I was looking up images, it looked like what was showing up as MPC. I'm sure it's not considering how rare that is, and I'm only 25. I was just curious. I will be sure to update you all with the results as soon as I get them

Againstthewind

Had a tough time finding info about metaplastic cancer we are rare breed. Was told because of that fact they have no tried and true treatment for it, they use their best guess. If doesn't work they keep trying till they figure it out. Tumors are usually larger and tend to be triple neg, also less likely to be found in lymph nodes. Was diagnosed in 2012 with stage IIIB, grade 3, triple neg. Metaplastic carcinoma in left breast. I discovered lump under breast, it was perfectly round bulging out of skin, sore thought maybe some kind of weird boil. In about 2wks grew to about inch across went to er doc who took one look said cancer called in surgeon who biopsied it. Had mammo and ultrasound, they found 2 tumors one 6.7 cm, other 4.8 cm stacked on top of each other, top one pushed through skin causing bulge. They decided to try chemo first with taxotore didn't work thing grew 1.5 cm in 2 wks. So they did radical mastectomy, removing some chest muscle, went back week later for follow up had to have 2nd surgery for cancer in skin. Then treated with chemo 6x CMF, no radiation had enough 1st time. Was previously treated in 2004 for stage I, HER2 +, grade 3, 1.5 cm tumor in left breast. Had lumpectomy followed by chemo 4x AC, 4x T dose dense then 33x radiation. Am currently being treated for IDC triple neg. Stage IIA, grade 3 cancer in right breast am having neoadjuvent chemo 4x CT. Will do 2 treatments if working will do other 2 more, if not mastectomy then figure out different treatment. None of my cancers are considered recurrent they are all new primaries. Just found out am BRACA1 pos.

Againstthewind

Had a tough time finding info about metaplastic cancer we are rare breed. Was told because of that fact they have no tried and true treatment for it, they use their best guess. If doesn't work they keep trying till they figure it out. Tumors are usually larger and tend to be triple neg, also less likely to be found in lymph nodes. Was diagnosed in 2012 with stage IIIB, grade 3, triple neg. Metaplastic carcinoma in left breast. I discovered lump under breast, it was perfectly round bulging out of skin, sore thought maybe some kind of weird boil. In about 2wks grew to about inch across went to er doc who took one look said cancer called in surgeon who biopsied it. Had mammo and ultrasound, they found 2 tumors one 6.7 cm, other 4.8 cm stacked on top of each other, top one pushed through skin causing bulge. They decided to try chemo first with taxotore didn't work thing grew 1.5 cm in 2 wks. So they did radical mastectomy, removing some chest muscle, went back week later for follow up had to have 2nd surgery for cancer in skin. Then treated with chemo 6x CMF, no radiation had enough 1st time. Was previously treated in 2004 for stage I, HER2 +, grade 3, 1.5 cm tumor in left breast. Had lumpectomy followed by chemo 4x AC, 4x T dose dense then 33x radiation. Am currently being treated for IDC triple neg. Stage IIA, grade 3 cancer in right breast am having neoadjuvent chemo 4x CT. Will do 2 treatments if working will do other 2 more, if not mastectomy then figure out different treatment. None of my cancers are considered recurrent they are all new primaries. Just found out am BRACA1 pos.

lynnp

do you mind my asking how you are doing? I was diagnosed with metaplastic squamous cell carcinoma last week. I have 2 more biopsies coming up this week. So far only one spot in left breast.. Thank you and I hope you are truly well..

jebrunner

Curious to see if there is anyone with MBC out there following this thread currently? Seems as though we are, indeed, a rare breed! I'd like to connect with others to see how things are going with treatment, SEs, etc. and chat about frustrations as well as what's helping you get through this nasty business...

slv58

Hi jebrunner, I'm metaplastic and always keep my eye open for others! We are a very rare DX which can make you feel alone. I completed to last Aug. and am doing well! I'm sorry I don't have time right now to respond but just wanted you to know there are others. Feel free to pm me

Shari

adgirlonthego

I've found part of the problem is pathologists don't recognize metaplasia- at least not through core needle biopsy for diagnoses. It wasn't until Oct 2011, when I went to MDAnderson in Houston for a third opinion that my savvy breast onc specialist in high risk BC's recognized the metaplatic features. Mine was a Chondroid Differential, meaning it resembled the characteristics of bone cartilage. She wasn't worried.... and I think because my Triple Negative palpable mass was so small. Who knows? The metaplastic portion could have been mere millimeters. After neoadjuvant therapy the whole cancer bed was dead. No sign of the metaplasia or carcinoma resulting in a true pCR.. And it's true, many metaplastics are also Triple Negs with clear nodes. It sure wasn't picked up in my large clinic at home. It's felt that metaplasia isn;t as rare as once thought. They simply go unreported due to a great number of radiologists who don't recognize metaplasia. We have a closed facebook forum filled with metaplastic survivors with new women joining daily. I'd bet our group has grown to close to a thousand. If you'd like to join the group, please contact me. I'll put my settings on response notification. It isn't a death sentence either. I'm still here after over 8 years out from diagnoses As I unpeeled the layers of the rare factors involved in this breast cancer.... being triple negative and yes BRCA 1+plus the medaplasia.... ugh. Very befuddling indeed. BTW, I've been part of this forum for several years. I had to resign under a different name, but I believe my old name was adgirl5. My best to all.

adgirlonthego

It does feel isolating when you don't see the numbers of women in the very same boat. They really are out there. Not only is there one closed facebook forum for women with metaplastic BC, but there are several.. and they have many, many members. I'm here to tell you, there are more of us than we really realize, and so many of us with these aggressive cancers are not only surviving, but doing very well years later.

Marybth7

hello, my mother was just recently diagnosed with metaplastic triple negative. She is going for a mastectomy Wednesday October 25th. We are having trouble finding any support groups / helpful information. I would love it if we could join your Facebook page and get some good info., thank you so much

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