Extensive DCIS

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Leach
Leach Member Posts: 33
edited September 2023 in Newly diagnosed
Dear fellow members, 
I was diagnosed with left breast DCIS 7 weeks ago. 
I’ve had 3 ops in this time to try and get it all. Unfortunately results yesterday from 3rd op show it is still throughout all the sections removed. It’s apparent now I have DCIS through other areas  of my breast. My only option now is mastectomy +/- reconstruction. I’ve had genetic testing which is negative (strong family history). Fortunately nothing invasive (at this stage), however DCIS is high grade. I have known LCIS in my right breast so I’m now back to the emotional roller coaster of whether to have single or bilateral mastectomy. I’m 52 with school aged children.  I am also travelling back and forth to Brisbane for surgeries.  Thanks in advance for any insights /experiences/ info would be greatly appreciated. X 

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  • brightspace
    brightspace Member Posts: 448
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    Single mastectomy for DCIS was the preferred
    Minimal down time no chemo 
    For me a quick decision in 2010
    No recon then and overtime no worry ..
    Now some patients could be offered  
    AI followup therapy  if high grade 
    Always be vigilant and proactive
    Never underestimate this diagnosis
    All the best 
    Bright



  • Leach
    Leach Member Posts: 33
    edited September 2023
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    Thanks Bright, much appreciated  😊 

  • arpie
    arpie Member Posts: 7,818
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    So sorry to see you joining our select little group - feel free to check out this post, that explains some of the areas on BCNA that may interest you - we even have funny areas, for that bit of a giggle ...
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    You may like to join the 'Flat Chat' group (those who don't have recon) and the'Choosing Reconstruction' group (both are private groups, so photos of both will be shown.). You can put up specific questions there as well.

    Take care & All the best with your decision making xx. 



  • Leach
    Leach Member Posts: 33
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    Thank you 😊 
  • Leach
    Leach Member Posts: 33
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    @brightspace, what is A1 therapy ? 
  • mell45
    mell45 Member Posts: 28
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    Hi @Leach, what a rollercoaster. I had large DCIS in right breast with invasive cancer within. Due to the size of the DCIS I only had option of mastectomy. Due to strong family history and my high risk I ended up having bilateral mastectomy. I had a DIEP flap reconstuction at the time of mastectomy 3 months ago. 2 days ago I had nipple reconstruction and fat grafting. The recovery from the major surgery was slow and hard but by about 5 weeks I was feeling much more myself. I also have school age children (I am 45). I had a lot of support and was lucky to be living in the city so don't have the geographical challenges that you have. I wish you all the best. Happy to answer any other questions.
  • Leach
    Leach Member Posts: 33
    edited September 2023
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    Thanks for sharing your story @mell45, I will definitely reach out to you with questions over the coming weeks. I just arrived back to Alice today so trying to let it all sink in. My surgeon is away for 3 weeks now which is probably a good thing so I can breathe and sit with this now. I’m hoping to have consult with plastic surgeon over this time . My first instinct is not have reconstruction as I can’t imagine having breasts that won’t be anything like I have. Having said that I have quite large breasts , so can’t imagine life without them either ! I hope your recovery continues well.  I’ll be in touch again . X 
  • mell45
    mell45 Member Posts: 28
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    Time to think is good. It's such a big decision. Check out https://breconda.bcna.org.au/ and Dr Charlotte Tottman podcasts through BCNA about breast reconstruction. Take care.

  • Tarma
    Tarma Member Posts: 73
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    Hi @Leach
    No advice to give .. 
    Just a Hug instead 🤗

    All the very best 

    T.
  • Leach
    Leach Member Posts: 33
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    Thanks @Tarma 🤗 💖
  • jennyss
    jennyss Member Posts: 2,015
    edited September 2023
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    Dear @Leach , AI's are aromatase inhibitors, a type of hormone therapy drug used to treat breast cancer in women. loAI's lower estrogen levels by stopping an enzyme in fat tissue (called aromatase) from changing other hormones into estrogen. (Estrogen can fuel the growth of breast cancer cells.)
    I have been on an AI, anastrozole for five years now with no problems. And by the way, I did get this info from 'Dr Google'! Also I had a lumpectomy, so just a bit flatter on one side, but hardly noticeable.

    from jennyss in Western NSW
  • Julez1958
    Julez1958 Member Posts: 1,181
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    Hi @Leach
    I was “ lucky” in the sense that because my tumour was lobular and large my breast cancer surgeon said mastectomy was the way to go so I didn’t have to agonize over  the choice of mastectomy/lumpectomy or go through multiple surgeries.
    I was 62 and had always been large breasted so was keen on reconstruction.
    In the end I went for a double mastectomy with DIEP flap reconstruction - my story and photos are in the private choosing reconstruction group which I would encourage you to join - call the hotline on Monday if you have technical difficulties in joining.
    It is a very personal decision only you can make - I discussed it with my breast cancer surgeon , plastic surgeon , GP and was able to talk to a friend of a friend who had gone this route and it really helped me gone to a decision.
    2 years on and I am very happy with the results.
    Dint under estimate the emotional toll of all this - I had a couple of sessions with a psychologist specialising in cancer related distress which helped me come to terms with it.
  • Leach
    Leach Member Posts: 33
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    jennyss said:
    Dear @Leach , AI's are aromatase inhibitors, a type of hormone therapy drug used to treat breast cancer in women. loAI's lower estrogen levels by stopping an enzyme in fat tissue (called aromatase) from changing other hormones into estrogen. (Estrogen can fuel the growth of breast cancer cells.)
    I have been on an AI, anastrozole for five years now with no problems. And by the way, I did get this info from 'Dr Google'! Also I had a lumpectomy, so just a bit flatter on one side, but hardly noticeable.

    from jennyss in Western NSW
    Thanks @jennyss, I will ask my doctor about this.  I know my DCIS is ER and PR negative so I don't know if that will have an impact.  I have put on my list of questions! 
    Many thanks X 
  • Leach
    Leach Member Posts: 33
    edited September 2023
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    Julez1958 said:
    Hi @Leach
    I was “ lucky” in the sense that because my tumour was lobular and large my breast cancer surgeon said mastectomy was the way to go so I didn’t have to agonize over  the choice of mastectomy/lumpectomy or go through multiple surgeries.
    I was 62 and had always been large breasted so was keen on reconstruction.
    In the end I went for a double mastectomy with DIEP flap reconstruction - my story and photos are in the private choosing reconstruction group which I would encourage you to join - call the hotline on Monday if you have technical difficulties in joining.
    It is a very personal decision only you can make - I discussed it with my breast cancer surgeon , plastic surgeon , GP and was able to talk to a friend of a friend who had gone this route and it really helped me gone to a decision.
    2 years on and I am very happy with the results.
    Dint under estimate the emotional toll of all this - I had a couple of sessions with a psychologist specialising in cancer related distress which helped me come to terms with it.
    Dear @Julez1958, Thank you for your sharing your experience.  Having the multiple excisions did lead me to think very positively and that I could go onto radiotherapy.   Indeed the way my surgeon was uncovering the DCIS he thought it was just in the one segment.   Unfortunately my breast has proven him wrong!  I do feel like I've just gone back to square one and need to readjust my thinking.  I had a stroke earlier this year due to having a hole in my heart (that I'm awaiting closure for) so that is throwing me another curve ball as I need to get my whole team talking together to help navigate it.  Lengthy time on the operating table will increase my risk of blood clots and another stroke.  Nothing straightforward in my decision making unfortunately!  2023 is definitely my "annus horribilis" and I can't wait to get it in my rear view mirror! I will hook up with the private groups suggested.  Thank you again. X
  • daikym
    daikym Member Posts: 9
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    Thanks for sharing your story @Leach. I have DCIS in my left breast and had a lumpectomy yesterday (Tuesday 5th). My full results will be back 15th Sept so I will know next steps then. I am in Townsville and feel very blessed with the services. I hope all goes well for you. Regards Kym