Rare breast cancer - Metaplastic

@Silba, you've certainly been on a journey. But was your cancer Metaplastic?  I have only found three others on this site with this diagnosis.  I think it’s the rarity and aggressiveness that has us anxious.

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 

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. 😘

@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. 

@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 . 

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 . 🙏

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.

@cd85 When is your next onco appointment?

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. 

@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.