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Did you consider bilateral mastectomy for DCIS?

joce Member Posts: 13

I am really struggling to make a decision about the best path forward, so I've come to learn from all of you. I am still waiting on genetic testing results to come through, but have no reason to believe that there will be anything of significance. If there is, I will pivot accordingly.

I had a 1.2cm, grade 3 DCIS with comedo necrosis removed from my right breast in mid March, with 2mm clear margins. Tissue is ER+/PR+. My DCIS Oncotype score is 19, which translates to 10% risk of recurrence of DCIS and 5% risk of IDC within 10 years, with the arc going up over time, although my situation doesn't fit squarely into the parameters of the research groups that were used to make those predictions, so it's information, but not definitive, of course.

I am 50 years old. Whole breast radiation and trying Tamoxifen have been the general recommendations assuming nothing of interest comes up on the genetic front.

I have anxiety and, like everyone, worry about a recurrence and especially IDC. I worry about my contralateral breast and have very dense breasts with fibrocystic disease which can be quite painful at times. I am concerned that there may be something in the other breast that no one sees, not because I feel anything but because there is so much going on in there, how would I know and would it actually be found on a mammogram?

I also see peoples' profiles on here where there was a DCIS and then another one later or an invasive cancer and it really makes me think. I realize the people who never have a recurrence may not come back to this site though...

It feels drastic to even be considering double mastectomy, and yet, I keep wondering about it.

Anyone out there with a similar diagnosis as mine choose that route? How do you feel about it now?

Thank you so much for reading and responding with your choice and your thoughts about your path!! I am so appreciative for this opportunity to connect with and learn from others who have gone before me.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636
    edited April 2023


    Your question is not uncommon. The first thing I’d like to say is that reading the discussions on bco provides a very stilted view of many aspects of bc. The great majority of those who post either have bc, have had a recurrence, etc. Those who are treated and never recur do not generally keep posting so our posts tend to lean heavily toward those of us with issues. This forum is not the place to look for recurrence patterns because those that don’t recur don’t post.

    A bilateral mastectomy is a big operation and comes with all the risks of major surgery. While a bmx may greatly reduce recurrence risk, nothing can completely eliminate it. Another consideration is your doctor and your insurance coverage. They may not agree to removing a healthy body part without some clear indication that there is a risk. That being said, there are women with DCIS who have had a bmx. If you do have the choice of a bmx, doctor and insurance agreement, then it simply becomes an issue of what is right for you. Take care

  • triscuit
    triscuit Member Posts: 32
    edited April 2023

    I am 54 and 4 weeks out from a bilateral mastectomy for DCIS. My situation is a little different though in that I do have a Chek2 mutation that I have known about for 5+ years and have been undergoing imaging every 6 months with at least 5 biopsies. All the biopsies showed (multiple) benign intraductal papillomas. And I have very dense "busy" breasts. It was weighing on me that maybe I should be doing more and possibly have the papillomas excised so I went for a second opinion to a high risk breast clinic. They reviewed all my imaging and found another suspicious spot that the local radiologist hadn't noted and I had a biopsy of that and it was DCIS. Both my local breast doctor and the second opinion breast surgeon agreed that bilateral mastectomy was my best option given my history. I certainly didn't want to do it, but I did not want to end up with invasive cancer down the road or to continue having biopsies and stress.

    I was hugely relieved when surgical pathology showed only DCIS (but a lot more of it than seen on MRI) and ADH and ALH and I am not going to have radiation or chemo. I am lucky to have dodged a bullet and relieved to have reduced my risk, not to mention my stress. It's not been easy but at 4 weeks out I'm feeling really good and like in the not too distant future this whole process will be behind me (once the implant process is complete in a few months).

  • joce
    joce Member Posts: 13
    edited April 2023

    Triscuit, thank you so much for sharing your story. I am so glad to hear that 4 weeks out from your surgery, you are doing well and feeling a sense of relief with your decision. I do not yet know if I have any gene mutations, so if any of that comes back positive, I know it will change my decision making process. I have been thinking that I would like to ask my oncologist to have my mammogram images looked at again. I am so concerned that they might have missed something as I too, have "busy" and very dense breasts. Did they also do an MRI for you? I am a little confused about the utility of an MRI versus a mammogram.

    I know that mastectomy is not an easy choice or road, and I am so glad for you that you can avoid further treatment. That's a big plus in my mind.

    I never knew that having a Stage 0, grade 3 DCIS diagnosis would be so complicated and involve so many choices. I think when people hear Stage 0 they think, just cut it out and everything will be fine. It's just never that simple.

    Exbrnxgrl, thank you for giving me perspective as I sift through info on this site. I totally understand that recurrence rates will be skewed on here as those who have BC fully in their rear view mirror are not likely to be on here for support and connection. I have a hard time deciding what to make for dinner, so this decision tree is feeling overwhelming:) Yes, definitely would need to check for insurance coverage too. Thank you again for sharing your advice!

  • triscuit
    triscuit Member Posts: 32

    @joce yes, I had MRI which is how my DCIS was found. Mammograms are not that useful for me due to density of the breast tissue. MRI is a lot more sensitiive. Did you have ultrasound? I would assume so and that your biopsy was ultrasound guided. If you have not had an MRI and are considering lumpectomy I think you'd definitely want an MRI first to be sure there aren't any other concerning areas. If there are, that would inform your decision. This just happened to a colleague of mine who had a biopsy after mammo and ultrasound, then had an MRI and there was another spot. Both were cancer so she changed her plan from lumpectomy to bilateral mastectomy.