Hello

GraceyS
GraceyS Member Posts: 3 New Member
in General discussion
I’m Simone diagnosed 2019 HER2 positive & TNC stage 3 Grade 3 BC
I have never joined an online group like this before so I’m not really sure how to navigate around.
I feel it’s taken me this long to be able to retrospectively think about the last 5 years. I feel I have just been in survival mode. So now I’m trying to piece together exactly just what has happened. I had a bilateral skin saving mastectomy & a Diep reconstruction followed by a nipple reconstruction 19 months of chemotherapy & immunotherapy & 7 weeks of radiation. I have never had follow up scans or bloods done, is this normal?
I'm looking forward to communicating with this lovely group & making friends x

Comments

  • iserbrown
    iserbrown Member Posts: 5,728 ✭
    https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

    Hi @GraceyS

    Onya for coming to the forum.  There's a wealth of information here and support all round. 
    The link is to the Private group that you may consider joining and perhaps seek the answers you are looking for presently

    Take care
  • GraceyS
    GraceyS Member Posts: 3 New Member
    Hi @iserbrown
    Thanks for your reply, I will check it out 
    Take care x
  • brightspace
    brightspace Member Posts: 457 ✭
    Hi GraceyS
    Followup protocols post treatment are usually checkup 6 mths/ yearly for Five years
    Important to touch base with GP/ surgeon  for followup scans
    Usual for breast screen ultrasound   checkup mine for remaining breast  was organised by breast surgeon as I was Private patient
    We are our own advocates in this journey important to seek advice for followup check all the  best 
    Bright

  • GraceyS
    GraceyS Member Posts: 3 New Member
    Hi @brightspace
    Thanks for your reply
    I did have monthly, 3 monthly & 6 monthly check ups with the Oncologist, Breast Surgeon, Plastic Surgeon & Radiologist however no scans or bloods taken. I have asked the Oncologist a few times only to be told
    that locally advanced BC doesn’t necessarily require them. Only if you get a pain somewhere that won’t go away then contact us. Which is all a little anxiety inducing. I was just wondering if anyone else had the same experience? The cancer had spread to my lymph nodes & I had a full auxiliary clearance & now suffer with lymphoedema. I wonder if now having no breast tissue do you need the scans? 
    I will take your advice a have a chat with my GP thank you ☺️ 
    Take care 

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