Rare breast cancer - Metaplastic
cd85
Member Posts: 3 ✭
I just wanted to see if anyone has been diagnosed with a rare breast cancer type called Metaplastic subtype spindle cell (triple negative ) . Diagnosed August 2021 finished treatment in April 2022 , now mestasized to lungs Aug 2022 . Due to how rare this cancer is not sure about what the next treatment will be , oncologists are discussing , but i wanted to see if anyone has similar diagnosis and what treatment they received . 🙏
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@cd85 Some of the members only come on occasionally so hopefully someone will be able to help with this. Sending you massive hugs as you wait a decision.1
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Im glad to hear Im not alone & I wish you all the best.. My first diagnosis for triple negative metaplastic was June 2020, cleared in 2021 and then recurrence in April 2022. Back in chemo, Paclitaxel & Carboplatin with side effects that are getting hard to take like swollen painful hands& getting unsteady on my feet. And I'm doing all I can to avoid Covid which isolates me a bit. Frustrating and scary.5
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@cd85 When is your next onco appointment?0
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Oh dear, sorry to hear your news. I have the same cancer and also finished chemo in April. I recently had a follow up and was cleared by the surgeon. I would be interested to know how the metastasis to the lung was picked up, as nothing in my follow up would have found that.0
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My appointment is this afternoon , we are discussing what the plan is going forward , due to how rare this cancer is they are not sure what chemo or immunotherapy to use , so my oncologist is doing research . 🙏1
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@Fufan it was picked up ct scan at my one year check up , i was due for my one year petscan as well but it got pushed forward after the CT scan . When i finished my treatment they only checked breast by hand and blood work ,I kept complaining i have pain but they thought it’s radiation related . I have done a lot of research on this type of cancer , it’s very unpredictable and I advocate alot for myself and my oncologist is pretty good as she will do the research . I was initially stage 2a , did lumpectomy than chemo and radiation .1
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@cd85 I find this all very worrying. Two of you here, and both with very rapid recurrence/progression of the disease. My surgeon has ordered a mammogram and ultrasound for January, and the oncologist wants blood tests. I’m now wondering if that is adequate. Once again I think the problem with our rare diagnosis is that there is uncertainty about how to proceed. I had a mastectomy and TC chemo. My diagnosis took eight months, and that also is worrying. Good luck with your appointment.1
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My worry, which it seems is common to us all, is that scans are only done annually and the type can show before that. My metaplastic recurrence was picked by chance when a cardiologist ordered a scan & the pathologist reading those scans had special interest in looking for cancer & he said this needs checking now. Otherwise i would still be waiting for scheduled scans. 😘1
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cd85, I just finished 6 weeks ago with 6 months chemo after total lymph nodes surgery , which was diagnosed as triple negative, however I also have mets which I have been living with for the last 4 years.
My onco has decided to just monitor every 3 months as I have have lesions on hip bone and a small one in the lung.
So the first time 2018 I had , 6 months chemo, bilateral mastectomy,partial Lymph nodes removed, radiation, Xgeva and Tamoxifen for 3 years, then went onto Femara , had just made it to my first 6 month ( 2022)check up when the triple negative showed up in my remaining lymph nodes ( very quick growing and aggressive in six weeks went from 4 cm to 9 cm) and the lung lesion ( at the beginning unknown whether triple negative or mets ) , can't have radiation again on the lung as it's in the same area I had it for the Mets breast cancer.so we are just going to continue with the Femara and Xgeva.
Second time around of chemo has really done a number on me, but taking it one day at the time, as second chemo was a different cocktail of drugs which will affect only the triple negative cancer.
Your oncologist will talk it over with you , I'm not going to lie and say it was easy to go thru chemo again , but if it buys me another 3 -5 years its worth the effort.
My onco has requested 3 monthly scans , you can talk to your one about it too.
Good luck
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