Lost and struggling

Toni63
Toni63 Member Posts: 11 ✭
edited May 2022 in Now what? The highs and lows of survivorship
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

  • arpie
    arpie Member Posts: 8,129 ✭
    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

  • Cath62
    Cath62 Member Posts: 1,461 ✭
    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. 
  • June1952
    June1952 Member Posts: 1,935 ✭
    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.  💖
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    edited May 2022
    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
  • Toni63
    Toni63 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!!
  • June1952
    June1952 Member Posts: 1,935 ✭
    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 !
  • AllyJay
    AllyJay Member Posts: 957 ✭
    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.
  • srowe
    srowe Member Posts: 5 ✭
    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.
  • Broccoli
    Broccoli Member Posts: 16 ✭
    Having just been through DMX for DCIS in both breasts, and having a relative who works for a breast screen mob, whose mother had invasive breast cancer and has said did you just have DCIS? I fully get you.  Apparently, because of not having to go through the further trauma (thankfully) of RX or Chemo, my experience doesn't count. But it does.
    It counts because it counts.
    I will not apologise that I did not have to have all the difficult treatments that have been invented. Surgery was enough. It is hard. It is not a cut it off and get on with your life situation. There is mental and physical hard work, pain, exercise, massage, looking in the mirror, - lots and lots of challenges -

    A person who says otherwise, or that it isn't cancer!! has not experienced those losses and challenges. Or the lingering fear of return.

    I think the confusion some doctors feel is because they have 'discovered' that apparently for some lucky few, if the DCIS was left alone, it would never invade and metastasize. Somewhat like they know some men can have prostate cancer, not have any treatment and live just as long. Its just that they don't understand why this is, or who is safe to leave and who is not. That's their problem. It doesn't mean that the experience of having part of your body removed is not traumatic. It doesn't mean it was without purpose. It is life saving, that's why you had it done.
     
    I really don't understand because if for instance a person had a thyroid nodule removed and it was found to be cancerous but had not become invasive, they would be told they had had thyroid cancer. I don't think DCIS is any different. Its just that because some people can 'live with it' a few doctors disregard it as a cancer.
    I'm certain this DMX for high grade DCIS both sides has saved my life.

    Please don't let one person not validating your experience be the comment that eats away. Your power is in your deep knowing and understanding of this experience. And that we all know, everyone of us who has had this violating  experience of cancer in our bodies, we all know the truth.
  • arpie
    arpie Member Posts: 8,129 ✭
    Cancer is cancer is cancer and ANY diagnosis hits you for a 6 - and DCIS, tho less likely to become invasive, apparently  'can' become invasive, if not treated in time ....

    How incredibly insensitive of your relative to say that, specially working in the BC Screening area.   :(   

    Sadly, there are some who don't really 'think' before they speak. 

    We had a thread called "Did they really say that'' - and there are some DOOZIES there!!
    https://onlinenetwork.bcna.org.au/discussion/17916/is-that-right-did-you-really-say-that/p1

    Take care - I hope you are healing well xx
  • melclarity
    melclarity Member Posts: 3,528 ✭
    @Broccoli I hear you having had DCIS myself in 2010, lumpectomy, radiation and tamoxifen. Then 4yrs later in 2015 it came back! in the same spot? literally impossible but it did Stage 2, Grade 3 aggressive, so lumpectomy to remove and chemo for 6 months. In 2017 my post chemo visit the Oncologist the recommended a mastectomy to safeguard myself, it was a very difficult decision, mentally/emotionally. I decided on a single mastectomy/diep flap recon. Im lucky to be 7 yrs clear from my 2nd diagnosis. Every diagnosis is traumatic, every type of treatment is traumatic completely agree. 

    I do think sometimes people talk in terms of the stages of Cancer, so whilst saying was it just 'DCIS' they should rephrase it and maybe say was it early stage. It is all Cancer regardless, yes DCIS is I think they call stage 0 so its the very beginning. When it is widespread it does require some sort of treatment plan, be it surgery or radiation or anything. It is no different, it still requires treatment. So I hear you having been through both, its all very hard and traumatic, every single part of it. 

    Keep looking after you! It is a new normal, and survivorship ummm I think the Specialists disregard. Take care 

    M x

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