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Rare breast cancer - Metaplastic

cd85cd85 Member Posts: 3
edited October 5 in Newly diagnosed
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 . 🙏

Comments

  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 2,012
    @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. 
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 2,012
    @cd85 When is your next onco appointment?
  • FufanFufan Central Coast NSWMember Posts: 26
    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.
  • cd85cd85 Member Posts: 3
    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 . 🙏
  • cd85cd85 Member Posts: 3
    @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 . 
  • FufanFufan Central Coast NSWMember Posts: 26
    @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. 
  • BerzeliaBerzelia Member Posts: 2
    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. 😘
  • SilbaSilba SydneyMember Posts: 115
    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 

  • FufanFufan Central Coast NSWMember Posts: 26
    @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.
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