Forum Discussion

Toni63's avatar
Toni63
Member
3 years ago

Lost and struggling

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?
dcis
  • brightspace's avatar
    brightspace
    Member
    3 years ago
    Medico needs a lesson in reality
    The statement is old school
    Dcis is graded O stage  this is where the problem occurs with terminology..path usually shows Her negative and hormone positive
    Dcis is never to be underestimated 
    Five years after mastectomy for dcis I was diagonised with metastic breast cancer to lungs..this is a rare occurance but it does occur
    All the best
  • srowe's avatar
    srowe
    Member
    3 years ago
    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's avatar
    Broccoli
    Member
    3 years ago
    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's avatar
    arpie
    Member
    3 years ago
    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's avatar
    melclarity
    Member
    3 years ago
    @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