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Finally diagnosed triple negative metaplastic bc

FufanFufan Central Coast NSWMember Posts: 13
Hi, l'm fufan, and new to the site.

In May I found a lump.  By September, after two ultrasounds, a mammogram and a core biopsy, I was told it was probably nothing to worry about.  In November, still with a lump, I returned to the GP who sent me to a surgeon just to be sure. Then quickly followed a lumpectomy and a diagnosis of undifferentiated pleomorphic sarcoma. Because I have an implanted neurostimulator for back pain, I was unable to have an MRI.  PET and CT scans indicated no spread beyond the breast. Next a mastectomy and a new diagnosis of triple negative metaplastic  breast cancer.  It was then decided not to touch the lymph nodes, but move straight on to TC chemo.  This is scheduled for 17 February.  Meanwhile, my mastectomy wound is resisting healing and the surgeon has put me on antibiotics which inevitably have brought me thrush!  I’m over it, and my journey has hardly begun!

I would particularly like to hear from anyone who has had metaplastic bc: I know it’s rare, and I can’t find much support 

Also, there seems little written here about COVID-19 infection.  Are you all isolating or what?  I’m vaccinated and boosted, but very reluctant to venture into the community while undergoing chemo.  What do you think?

Comments

  • AfraserAfraser MelbourneMember Posts: 3,885
    Dear @Fufan

    Welcome to the site - I hope it will prove helpful in what has been a tricky start to dealing with bc. 

    I didn’t have metaplastic bc so can’t advise, but sympathise with a diagnosis that is rare. I hope someone else can share their experiences.

    The conventional wisdom with chemo is that it suppresses your immune system and you are more susceptible to infection while being treated. I worked through treatment, in an office and in major events and never had any problem, but COVID changes things! Talk with your medical team but I’d be surprised if they didn’t advise caution, at least until you know what your reactions to chemo are and your mastectomy wound has healed properly. Best wishes. 


  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    edited February 5
    Welcome to the forum @Fufan- I am So sorry to read of your diagnosis - I hope that with the antibiotics, your wound starts to heal now.

    Another member was recently diagnosed Metaplastic - you can read the post here - you may be able to compare notes/support each other:
    https://onlinenetwork.bcna.org.au/discussion/24185/metaplastic-tumour-anyone-else-out-there

    There will be a webcast on Triple Negative Breast Cancer on Feb 17th .... you could raise questions about metaplastic bc on it ..... if you aren't able to watch on the day, you could put your questions forward early & hopefully they will be addressed, as it should be recorded & made available to members who were unable to attend on the day.  The link is below:
    https://onlinenetwork.bcna.org.au/discussion/24216/ask-the-expert-triple-negative-early-breast-cancer-with-dr-nick-zdenkowski#latest

    Covid is making everything tricky - I think most members will be taking extreme care when they are out & about - I know that I am, as my husband is on permanent chemo (he is stage 4)  & I cannot afford to 'get it', let alone pass it onto him.  We have to have a RAT test every time we go to the hospital for bloods, chemo & flushing of the Portacath - so good to know that we are 'clear'.

    When you have 5 mins, check out this post - it covers a few different areas on the forum, including 'tick sheets' that may help you formulate questions with your medical team xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care & all the best xx


  • FufanFufan Central Coast NSWMember Posts: 13
    Thank you girls.  I have reached out to the other person diagnosed with metaplastic.  I would never have found her on my own, as I am still struggling with this site.
    As to covid, I have found the three doctors I've asked rather "relaxed" about it.  I leave the house only for medical appointments (and next week to get my hair cut short), and family and friends must have a negative RAT to visit.  Having been in virtual lockdown for three years (yes, the year before covid as well) I wonder whether I'm perhaps too pernickety.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    Terrific you've been able to chat with @HelenV .... you can continue chatting privately, too, if you like, by clicking on Helen's name & then clicking on the 'envelope' on the right hand side - and sending her a Private Message.

    How amazing that the Drs are so 'relaxed about Covid' ..... No, you are Not being pernickety at all, @Fufan - your house, your rules.  We require visitors to wear masks but not get a RAT test ... yet ...  Even if we go for a walk outside, we both wear masks.

    I must admit, I was surprised at the hospital where my husband has his chemo .... all the incoming day patients have to have the RAT test - but the staff don't!!  That floored me - as all patients come into contact with a few staff!!  He has dementia, so I go with him to ALL appts, even tho technically, only those receiving treatment are allowed in .... I have to wear my mask all the time - but the patients don't have to wear theirs .... tho the staff does!

    take care xx
  • FufanFufan Central Coast NSWMember Posts: 13
    @arpie @HelenV
    Thanks.  As I said, I'm new here, and was trying to find out how to communicate privately.
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