Time to DCIS surgery

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August2015
August2015 Member Posts: 15
edited September 2015 in DCIS (Ductal Carcinoma In Situ)



Hi everyone,

I had a biopsy on Aug 6 and was told on Aug 20 it was positive for Dcis. I was told my Dcis is a mix of grade 1 and 2. I was told to get genetic testing (my mother is brca positive) and if it came positive then consider a double mastectomy. Well it came back positive and by now I've been going to many plastic surgeons and second opinion breast surgeons as I am having issues with my reconstruction options.

I still have not had surgery to remove Dcis and I am panicking more and more by the day. Reconstruction is hard to figure out, I won't go into details on that. Today is Sept 28. Even if I decide what type of reconstruction I'm having today, I feel That I won't have my surgery for another month because the doctors are usually booked few weeks ahead. My breast surgeon is telling me it's ok to wait but I am freaking out, mainly because This thing is still in me and I don't even have my plastic surgeon figured out.

Just having to wrap my head around double mastectomy at 39 is a lot let alone figure out reconstruction in a short amount of time.

Anyone felt the same? And how long did you wait between finding dcis and getting it out?

Thanks!

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  • mefromcc
    mefromcc Member Posts: 188
    edited September 2015

    Are you a candidate for delayed reconstruction? Because of my age (64) and my health issues I had to wait between my BMX and my DIEP.
    Are y

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  • ChicagoReader
    ChicagoReader Member Posts: 110
    edited September 2015

    Hi, I waited about 3 months from the biopsy till surgery and my doctors (breast surgeon, medical oncologist, and internist -- all at an NCI-designated hospital) were fine with that. I had to wait because I needed surgery for another, unrelated issue and everyone thought that should happen first and that I should be fully recovered from it before my breast surgery. All the docs said that DCIS is very slow-growing and that we had time.

    Recently, a colleague's SIL was diagnosed with Stage 1 IDC. She took time to consult with surgeons at Rush, Univ of Chicago, and Northwestern before making a choice.

    I hope this helps and wish you the best with your treatment.

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  • August2015
    August2015 Member Posts: 15
    edited September 2015

    Thank you for your replies. I am not a candidate for autologous reconstruction as I don't have enough tissue. The reconstruction issue I have is about sparing my nipples. The dcis is far away from the nipple but I am 34 DD to 34DDD and droopy. So doctors' opinions vary on how to preserve my nipples. Oncoplastic lift has been proposed but I am afraid to move around possibly undetected dcis. Wise pattern incisions with dettaching and reattaching nipples has also been proposed too but that doctor doesn't take my insurance. If he just took my insurance I would be having no issue with reconstructionand would have had my surgery already. My out of pocket cost to use him would be 30K which would be taxing for my family. I don't know if my nipples are worth 30K.

    Thanks for listening. Feel free to contribute.

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  • LAstar
    LAstar Member Posts: 1,574
    edited September 2015

    I feel for you having to make these decisions -- this is a very stressful time. I had an MRI before my MX, and the DCIS was too close to the nipples to keep them. I didn't have any sort of sexual feeling with my nipples (except when I was pregnant -- wowzers, I finally got it), so it wasn't a big decision for me to lose them. I had two lumpectomies before MX and 3.5 months passed between diagnosis and MX. Your DCIS was grades 1 and 2, which is good news that it is slower growing. I can completely empathize that you are ready to get this out and over with! But we have the option with a DCIS diagnosis to take some time to do research and choose the right treatment and surgical path.

    Reconstruction choices are completely overwhelming. There are a lot of women on this board who were told by local surgeons that they are too thin to have flap reconstruction but had successful flap surgeries by expert surgeons in New Orleans, Charleston, and other locations. If travel is an option, you might look into the Center for Restorative Breast Surgery in New Orleans or Marga Massey who operates in Charleston, Durham, New Orleans, and Chicago. I travelled for surgery and it was a lot easier than I expected (and even fun at times -- a big and welcome surprise). My insurance paid most of the costs and I am using a medical flexible spending account for travel costs. I had a great sense of relief to be treated by experts and I am very happy with my results. I wish you the best in finding the path ahead that brings you the most peace. {{hugs}}

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  • August2015
    August2015 Member Posts: 15
    edited September 2015

    Dear LAstar,

    Thank you for the info and kind support. I'm hanging in there and weighing outmy options. Travel is not really an option for me but there might be a microsurgery ps in NYC who could do DIEP on thin people.

    I will share what happens on this site.

    ;);)

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