Home Now what? The highs and lows of survivorship



Lost and struggling

Toni63Toni63 Member Posts: 11
2012 I was diagnosed with DCIS had 3 lumpectomies and Radiation and all seemed good. On my 5 year check I was again diagnosed with DCIS. Now I am 5 years post double mastectomy and recon, and be signed off by all my specialists. Which is a good thing, I know. BUT, a year after my surgery I had to see a specialist for an unrelated matter, this specialist told me there was nothing wrong with me, and “ it wasn’t like you had a real cancer”  this surprised me and I feel like all the trauma my family and I went through waiting for results, being told I had cancer, the lumpectomies and then major surgery, and recovery was for nothing. I don’t understand how a medical specialist could  say such a thing.   I have been told by friends to ignore it but it has been years now and I can’t.   Has anyone had this happen to them?
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Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    Gosh @Toni63 - I've not had this experience & would have been totally gob-smacked & like you, probably put into shock - and tempted to slap him, or better - thump him!  Oops - big assumption there - was it a male or female?   

    You've been thru so much already & to be told that by some 'non professional' professional ...... is just mind bending and totally unprofessional!  

    I agree -  some people should NOT be allowed to hang their shingle when they have absolutely zero people skills - what was their supposed 'specialty'?  I hope you only saw them the once & then found someone else!!

    Even tho it is some years later - it may well be worth documenting the conversation in writing with the Medical Board .... who knows how many other patients this so-called specialist may have treated in this manner - they really need to be censured ...... specially with the obvious mental anguish caused to you for all these years - & to how many others?

    Take care, rest easy xx All the best with your signing off xx

  • Cath62Cath62 Brisbane Member Posts: 786
    Hi @Toni63, what a terrible thing to say to you. Perhaps you could do your own 5 yr sign off. Submit your feedback to this dr. It can simply be an email with your review of their performance. You could also do a google review or if they have a website where reviews are provided you could use that. It is only fair to have your sign off on them too. After all none of these drs exist without you and others. 

    If you don't want to provide a review you could write it and have a burning ceremony of the review to let go of these drs  it isn't worth thinking about them as they really mean nothing in your life. They are simply a tool to you to enable your treatment etc. They are finished now and so you don't have to hang on to them and their negative comments. I am sure you have much better things to think about. 

    Enjoy being free of this dr. Enjoy being free of all the checks. Stay healthy and happy. 
  • June1952June1952 Regional VictoriaMember Posts: 1,444
    Oh, @Toni63, that is disgusting but not unusual.  I was told by the GP that "DCIS is not cancer so won't kill you" so i fully understand your feelings.
    I agree with @Cath62, write the review and have a burning ceremony.  That can be cathartic.
    All the best - make a toast as the embers burn.  💖
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,309
    edited May 2
    What an absolute flog @toni63 Sack him if you haven't already done so!

    I've had a few experiences with total jerks (and one notable jerkess) that have left me seething. Best thing to do is never see them again. Even if that is a bit inconvenient.

    It's difficult to forget this stuff. Even reading about your experience as reignited my anger at the brutally disconnected idiocy of people who are smart enough to obtain a doctorate but so stupid in other aspects of their lives.

    In some ways I feel sorry for them. Even when I want to set their hair alight and tell them it's only a little fire.

    Mxx
  • DMarieWDMarieW Member Posts: 1
    edited May 2
    Hi. 
    Best wishes @toni63.
    Sometimes words can stay with us. 
    I had a mastectomy (2021)for high grade DCIS. 
    I too was told quite abruptly by a specialist that DCIS is not cancer…it is only cancer if it is invasive. 
    Somehow, this seemed so dismissive of everything I, and my family, had just been through. It also made me feel a little solitary….. did I even really belong then in this group for example?
    I now think of DCIS as Pre-invasive breast cancer. ..as documented in much of the literature. That keeps the cancer word in there and validates the very real shock and distress of diagnosis, treatment decisions, fear of recurrence.
    (Just to say- I also recognise that I’m fortunate to have been picked up early.)
    Thinking of you and thanks for the opportunity to express my feelings too. Am now ready to move forward. 
  • Toni63Toni63 Member Posts: 11
    I always thought of it as a form of cancer, particularly as the word carcinoma is in the description. Ductal Carcinoma in Situ!!
  • June1952June1952 Regional VictoriaMember Posts: 1,444
    If it is not cancer why do they bother with mastectomies and taking lymph nodes  🤣🤣🤣🤣
    Perhaps that is their way of trying to say we are not going to die overnight.
    @Zoffiel, I did laugh at the thought of you setting their hair on fire !
  • AllyJayAllyJay Member Posts: 870
    I could well imagine that if this dickhead was an obstetrician talking to a patient who had lost a baby at say,10 weeks saying something like this. "Well you can't really say that you've lost a baby....it wasn't a baby...it was just a blob of cells. It had the potential to become a baby, but you were only a little bit pregnant, not really like pregnant pregnant..." Give him the flick and find someone else who will treat you properly. As mentioned by others...ductal carcinoma in situ, means cancerous epithelial cells which haven't yet escaped the ducts and then become invasive.
  • srowesrowe Member Posts: 4
    I would be reporting this specialist to the health care complaints commission.  There would be no way a specialist would ever speak to me like that, I work in the health industry and some are just unprofessional.
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