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Still struggling with the word pre-cancer after DCIS mastectomy

averiaveri Member Posts: 14
I was diagnosed with low grade DCIS in my right breast in Nov 2019 and had a mastectomy in Jan 2020. I am 38 years old. I saw 2 specialist and both recommended a mastectomy because I am small breasted. Had an expander put in, awaiting for reconstructive surgery which has been postponed due to covid19. I am now clear without needing further treatment. My surgeon/breast care nurse/GP all refer to DCIS as pre-cancer and I struggle with this immensely because I need to feel that the choice I had made was justified and worth it. I lost my breast, it may be small but it was mine. This is not just about losing my womanhood, I felt I lost a part of me that made up the person I know myself to be. Because of this word I don't feel like I have saved my life, I didn't even have cancer. I know I should be grateful that I didn't have to go through radiation or chemotherapy or take any meds but to me a mastectomy is a very drastic treatment. How do you even explain it to other people? Nobody knows what DCIS is unless they have it, do I say I had pre-cancer? Is it wrong to say I had breast cancer? 5 months on and this is still keeping me from moving forward. 

At yesterday's Psychological Impacts webcast, someone asked Dr Tottman this very question and I was basically yelling at the screen "this is exactly how I feel!" So I now know there are others who are just like me. I hope to hear your stories and thoughts about how you are dealing with this particular issue. 



  • brightspacebrightspace Member Posts: 379
    Hi Averi 
    Thankyou for posting 
    DCIS should never be under estimated
    For me DCIS  is Breast cancer as for some in rare occurances it can reappear as Metastatic cancer
    We are told that it is stage O and not a true breast cancer..apparently does not have Her2+
    But it is the precursor to Breast cancer IDC..

    We are advised that if a mastectomy is given and nodes are not involved we  dont need hormone treatment or chemo
    For me I also had comedo necrosis on the path report..I feel this was one of the factor that contrbuted to the dcis developing into MBC
    Advice is to be vigilant 
    Bright in hope

  • AhnnAhnn Member Posts: 42
    Best wishes @averi and trust your surgeons.  DCIS is as important as any other cancer. If ignored it continues to develop,  my diagnosis was a shock to me and my GP. no indications no symptoms and after the lumpectomy on both breasts showed no clear margins and an 8mm invasive tumour, double mastectomy was completed. It's very hard to deal with the shock and impact but there's always someone online to talk to here.
  • averiaveri Member Posts: 14
    Thank you @Ahnn it sure is hard. Multiple surgeries in itself are exhausting. I was hesitant to join and post my story but I'm glad I did because there's really no support out there like we have in here.
  • NewBoobsPLSNewBoobsPLS Panania, NSWMember Posts: 81
    Hi Ladies, i believe the lady you were reffering to from the webcast was my dear friend @Elle_V92
    I think @Poodle_Lady55 said it best, DCIS: the C is for carcinoma which means type of cancerous cell!
    People really have no insight into what and or how the things they say could effect others.
  • JwrennJwrenn Mornington PeninsulaMember Posts: 96
    Hi @averi my cousin had DCIS and a lumpectomy then one year later had LDIS and then had a double mastectomy so I would never have said she didn’t have a cancer. Your surgeon is doing what is the best thing for your health.
  • SisterSister Adelaide Hills, SAMember Posts: 4,864
    I am rather bewildered hearing that women are being told that carcinoma-in-situ is pre-cancer.  It's very name says it's cancer that hasn't gone travelling yet.  Early pre-invasive cancer is really what it is. I understand that it's probably become a way of delivering news so that it doesn't scare the patient too much but it's bloody patronising and clearly incorrect, particularly if it gives a false sense of security.  As @Afraser said, hopefully you come to feel how lucky you have been to get an early warning but to diminish the reality of cancer is to send you back out into life without the understanding of what has happened to your body.  Not that I wish this understanding on anybody but if it's happened, you've got to be aware.
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