Metaplastic Carcinoma

Metaplastic breast cancer has it's own support sites on facebook. One is private and only for women diagnosed with metaplastic -Metaplastic Breast Cancer. The other is an open page with links to lots of information. There is also another one but I am always forgetting the name (damn chemo brain) Bena Roberts the founder and admin has put together a wealth of information. Please join us!

I have recently been diagnosed with matrix forming metaplastic BC. It feels like a pretty lonely diagnosis and I'm doing everything I can to learn about it and educate myself. I'm feeling very lucky to live so near Johns Hopkins. 2 years ago I lived in the middle of nowhere in Amish country, getting to a large university hospital for treatment would have been almost impossible. Now all I have to worry about is the traffic getting through the tunnel.

So far I don't know much about my planned treatment because we're still in the discovery phase of things. I met with the BS and RO who don't want to do surgury yet and want me to meet with a MO to start neo adjuvant chemo and talk about options for clinical trials. I meet with the MO next week and until then just keep getting the rest of my medical testing done. I did my genetic test the other day, my bone scan this morning and my breast MRI is next week.

Hi Rozzy, Sorry to hear about your recent diagnosis. Mine is metaplastic. I had double mastectomy and tried chemo but was cut off after the first dose due to complications. It's interesting that your MO didn't recommend it. It must mean that he/she is up on the research that shows chemo isn't always effective with metaplastic. I am relieved to have dodged the side effects from chemo if it wasn't going to help. There isn't a lot of research on metaplastic yet but Pubmed is a trustworthy site for information (I usually just skip to conclusions since the rest is hard to understand on that site) and if you use Facebook there are a couple of groups on there for metaplastic. I find BCO to be very helpful for support and information too.

I am doing fine at almost 6 years. I hope you find it not too bumpy a ride.

I am fine after that one dose. I was looking back at your old posts and see you had cancer in 2009. Is this a recurrence or new primary? Mine was the first Dx.

It looks in your profile that the current one is DCIS too. Was the one in 2009 Metaplastic as well?

Sorry you are having to deal with this again. Not fair.

Hello ladies!

I inadvertently started a new thread in the Triple Negative forum. Lonely right? Tell me about it. You are also triple neg most likely so hang there I'm thinking. That's a good group! And we often are suggested the same hard to endure treatments, because there's nothing else. Come join the thread! I'll repost my original post in Trip neg, I talked about the lonely, well f*** , metaPlastic, really?

Anyway. I want to talk to neoadjuvant chemo lady HAZEL-NUT I think she sent me here. Looks like shes got a BMX o=planned etc. I did not leave it in to see if it was responsive to chemo. John Hopkins, I want to know did you do further oncogening? etc

Any way. I'll be over there or here! More likely to scoop up Plastic ladies I think as we're all TNBC as well. I'm new and I'm off to work! And I'm a CHEMO one dose drop out too! Just like WRENN with the cat avatar. I actually had first dose 13 days ago and WAS scheduled for number two tomorrow. I'm a chemo drop out...

I do not do facebook so that's out.

I'm all over pub med too just like WRENN (mostly to defend my no more CHEMO I can't take it and if you can't even tell me it for sure works and everything says it doesn't unless you guys think the scientists are just bloviating all around the world in their laboratories. The scientists say no. . . if I could even bear CHEMO I'd probably reluctantly do it anyway.

Oh WRENN:

did you lose your hair? Mines leaving yesterday and today after one dose but I'm thinking maybe I get to keep my eyebrows and lashes? it's loose and pulls out easily but hasn't entirely derooted from my head. IDK - I should just shave it right?

Anyway.. I digress. They ok'd that new immuno- therapy for stage 4 meta-PLASTIC you guys heard that right? That'll be the standard of care first line even for MPBC (metaPlastic) in about five years I'm guessing, right? Too late for us but good to know for others...

anyway. Off to work. I did a Second opinion at UCSF, which ranks #7 on us news and world report for hospitals. Same as Kaiser. Just treat it like triple neg until the new therapies arrive if ever.

And keep your head out of the numbers and to the sky!

I say we get a chemo pass if it's unbearable though. Little mo-fo is a chemo resistant cancer-ninja. Gonna have to hypnotize it into not returning right?

I do not think delaying surgery is advised necessarily anymore, but I'd like to hear what the neoadjuvant chemo results were!

I'm heading to radiation and healthy living next. And mindfulness and not being sick all the time.

late late late for work again. Cancer...

Hello. I was diagnosed with stage 2 Metaplastic Carcinoma Breast Cancer-Triple Negative on December 10th 2019 due to a lump size 4 centimeters in my breast. Apparently the spindle cells were showing signs of multiple issues. I chose to have a lumpectomy and only 1 lymph node was removed. Thank goodness it had not spread to the lymph nodes or metastasized. BC does not run in my family and I tested negative for any type of genetic features. When I went to an oncologist he basically said that it’s my choice on whether to get chemo and radiation because this cancer was so rare they were just going to treat it as IDC-Apparently it’s not much information out there on treatment. Because of his response, I chose to make an appointment with Moffitt Cancer Center to see if they were more versed in this type of cancer and also to see what are my options for treatment. Should I just move on with the treatment or should I stay persistent with seeking that next opinion from Moffit?

Hello Tld1770,

I was diagnosed with triple negative metaplastic breast cancer in August 2018. My subtype is spindle cell combined with adenosquamous. As you know, metaplastic is extremely rare and there are very few reliable, up to date studies available. There is no treatment protocol for metaplastic and the hospital here in the UK didn't want to do any treatment at all after my mastectomy. I took a copy of my pathology report to a well respected Oncologist at the London Cancer Centre. He had experience of metaplastic breast cancer and recommended treating as triple negative. I was given FEC T. Not easy, but doable.

I had 7 nodes removed and all were clear of cancer, this was some consulation, however, metaplastic tends to travel via the bloodstream rather than the lymph nodes. I know that it's a frightening diagnosis, but most metaplastic patients survive. There are also advantages, for example, after five years it rarely comes back and you won't have to spend the next 10 years suffering the side effects of meds like oestrogen+ and Her+ patients do.

I'm a regular poster on 'Calling All Triple Negative Patients in the UK' thread. Despite the title, most of us are from outside the UK. You can find me there most days.

I'm not a medic and cannot tell you whether you should go for a second opinion or not. I can only say that I'm glad I did.

Best wishes,

Gill

I appreciate the kind words and encouragement. I know ultimately it’s my decision. I just wish it wasn’t so difficult to make