Double Mastectomy for DCIS too much?

rmctaurus
rmctaurus Posts: 1
in DCIS (Ductal Carcinoma In Situ)

My plastic surgeon let me know due to the amount that any form of a lumpectomy and radiation would leave my impacted side quite disfigured. Knowing that I have decided to have at least a single mastectomy with reconstruction.

with hormone positive that still leaves me needing tamoxifen. I also have extremely dense breast tissue. I have been a wreck and this is low stage cancer so I worry about mentally dealing with years of mammograms and other imaging or potential biopsies. I worry about how I would deal if I wound up with another cancer. Due to my petite size if I used tissue this time around and needed further reconstruction I’d also be looking at a large scar on my thigh.


im in the middle of a divorce too so I know I want reconstruction and to feel ok about my body afterwards. All that in mind I am heavily considering a double mastectomy. At times I feel at peace with this and others I feel crazy for considering it knowing this is stage 0 and I will survive so shouldn’t I take the simplest option and feel lucky? Any others with DCIS opt for a double mastectomy?

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Comments

  • moderators
    moderators Posts: 10,640

    Welcome, @rmctaurus, we're so sorry you find yourself here. And we know this can be such a difficult decision! Your surgery choice is a very personal one, and everyone has their own reasons for deciding to go the route they do - all of them valid!

    There are certainly members here who've decided to go with a double mastectomy after a similar diagnosis; we suggest spending some time in our Surgery forum, it's a great place to connect with others preparing for surgery, gets tips on how to prepare, and especially, hear from others on what led them to decide on the surgical path that was right for them.

    Please keep us posted on what you ultimately decide, we're all here for you to support you every step of the way.

    The Mods

  • maggie15
    maggie15 Posts: 2,680

    Hi @rmctaurus, It is difficult to make treatment decisions when you have options. The simplest option is not always the best one for you. Prior radiation makes successful reconstruction much harder. Choosing a surgical option that avoids rads means you won't have to deal with reconstructing a previously radiated breast with a poor cosmetic outcome. How your body would react to tamoxifen is an unknown. Some people suffer side effects while others do not. It is also valid to consider the mental stress any option would cause you. All the best for making your decision.

  • shorttoes
    shorttoes Posts: 16

    Hi @rmctaurus I had DMX on 9/1. I was diagnosed with DCIS and had the options of lumpectomy/ radiation/ tamoxifen/ every 6 month imaging OR bilateral mastectomy. I decided to go with the DMX to avoid all of the other stuff.

    I won't lie, it hasn't been fun, but I felt most comfortable with this decision. I will have future reconstruction so I have tissue expanders in place and they are the most bothersome thing now. My final pathology showed that I had ALH bilaterally which gave me a 30% lifetime risk of a lobular cancer..…so I feel this turned out to be the right choice

    Good luck in making your decisions. It's a lot 💕

  • rrobin0200
    rrobin0200 Posts: 101

    DMX for left side DCIS in 2017. I have no regrets. Had immediate direct implant reconstruction (wasn’t a candidate for diep due to mg petite size) but did have a tiny bit of fat grafting from thighs during a second surgery. I can’t even see my scar! I wanted to bypass additional mammograms too. Almost 10 years later, I am still seen yearly and I always request an ultrasound for peace of mind. My doctors don’t mind, and insurance pays.

  • missymoo
    missymoo Posts: 27

    @rmctaurus

    DMX for left IDC. I chose to remove the right breast for a number of reasons. Having dense breasts my cancer was missed at least twice (no one was willing to tell me if it was more than that) The tumour was too large for lumpectomy so I was facing a singe MX at the very least. There was no additional imaging of the right breast, leaving me wondering if anything was lurking in there. I did not want to have to do this twice. I believe dense breasts can increase the odds of cancer, along with making diagnosis more difficult, so perhaps a discussion for your MO. In addition, I have scoliosis so the lopsidedness would put additional pressure on my spine. Living in a rural underserviced area, I had no option for immediate reconstruction and in fact am still waiting on a consult with a PS almost 2 years out.

    This is truly a personal decision and I feel strongly that we should choose what feels right for us. Good Luck with whatever you decide. ❤️

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