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Oma1's avatar
Oma1
Member
3 months ago

Advice please

Hi everyone,
I was diagnosed with DCIS in December, following a regular mammogram. The core needle biopsy indicated that it was only 3mm. I had surgery the week before last to remove it, but unfortunately the pathology showed that it was actually 35mm, and a clear margin hadn’t been taken. I had an MRI on Friday, which I’m hoping will provide further information for the next surgery. My surgeon has indicated that I will lose the nipple, and suggested that I may consider a mastectomy with reconstruction. I have to say that this has taken me by surprise, because it’s nothing like I thought I was dealing with. I’m trying to wait for the MRI results before worrying too much, but I feel that I need to understand my options, and the future implications of partial versus full mastectomy. Has anyone else been in the same position? Are there any specific questions you suggest I ask at my appointment with my surgeon this week? Any suggestions will be appreciated! 
dcis
new-diagnosis

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  • arpie's avatar
    arpie
    Member
    3 months ago
    I am So sorry to see you having to join us @Oma1 xx  You will still be in shock too, for sure. :(  

    Please Consider joining the private Reconstruction Group, where you can ask any question & see photos (before & after) of various types of reconstruction.  Click on this link and hit 'join'
    https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

    You may also like to listen to the Charlotte Tottman on "Breast Cancer - what you don't know until you do."  She is a specialist Breast Counsellor who was diagnosed 6-7 years ago & had a double mastectomy, choosing to remain flat.  You can read a bit about her below, too.  Her own reaction to her diagnosis was different to what she thought it would be - her podcasts are very easy to listen to & covers pretty well every emotion that all of us have felt xx
    http://www.drcharlottetottman.com.au/my-podcast.html

    Take lots of deep breaths & just take one day at a time xx. Try & keep busy doing stuff you love doing as you prepare for the next surgery.  Stay away from Dr Google ... as a lot of the info on there is out of date & often doesn't relate to your own diagnosis.  And it will just 'do your mind in'.  This diagnosis mucks with your brain even more than your body, I reckon. :(

    Take care & all the best
  • Oma1's avatar
    Oma1
    Member
    3 months ago
    Thank you for your response @arpie and @iserbrown I’ll definitely look up the podcast and articles, and join the reconstruction group. I want as much accurate information as I can get. I am trying to stay away from Dr google! 
  • May2024's avatar
    May2024
    Member
    3 months ago
    Hi @Oma1 
    I am so sorry you are having to go through this again so soon after your initial surgery.  My story is on newly diagnosed as well as the private recon group.  I had a double mastectomy in November although mine was nipple sparing with immediate recon. I had DCIS grade 3 agressive in my right breast.  The mamogram, u/sound & MRI only showed one area of DCIS. I had the option of lumpectomy however due to a family history of b/cancer, I decided on double mastectomy because I didn't want to have to go through the experience of being told I had b/cancer again.  Pathology results came back after surgery showing my right breast had a second lot of DCIS (larger than the first) that was not picked up on any of the imaging, so I would have had to go back to theatre to have the breast removed.  Please let me know if there's anything specific you would like to know; I'm happy to answer any questions you have. 
  • Oma1's avatar
    Oma1
    Member
    3 months ago
    I’m so sorry that this happened to you @May2024! I hope your recovery is going well. Your pathology results confirm that you made the right decision, even though I know it can’t have been easy for you. My first reaction to my surgeon raising the possibility of a mastectomy for me was that it felt drastic, but she then mentioned that if I had breast conserving surgery again, she couldn’t guarantee that I wouldn’t need a third surgery. After a few days to sit with it, I’m now open to exploring my options. I think once I know the MRI results, and understand how much of the breast she will take, my decision might become easier. I may reach out with questions once I have those results. Thank you so much for sharing your experience with me.