Cancer "sprinkled" through breast?

saltmarsh
saltmarsh Member Posts: 227
edited May 2021 in ILC (Invasive Lobular Carcinoma)

Hey there,

So, my oncologists were thinking from my initial mammogram and ABUS reports that the ILC was confined to one area, and I was likely a good candidate for a lumpectomy, radiation, and tamoxifen. Then my SO saw my MRI and said unfortunately, it turns out that there are tiny bright spots sprinkled throughout my breast over a much larger area, and I'm going to need a mastectomy.

Has anyone else had a presentation like this?


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Comments

  • BevJen
    BevJen Member Posts: 2,523
    edited April 2021

    salt marsh,

    I've never heard it described quite like that, but I have ILC and mostly it presents as a diffuse cancer rather than a lump. Perhaps that's what your doc was trying to describe.

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  • abigailj
    abigailj Member Posts: 145
    edited April 2021

    hi Saltmarsh, yes, I was originally told the ILC in my left breast was under 2 cm and could be dealt with by lumpectomy, just like the IDC in the right breast. But when I went for the MRI 2 much smaller spots turned up and MRI guidedbiopsy showed they were ILC too. Could have had a big lumpectomy and rads and smaller lumpectomy on IDC side but chose skin sparing BMX with immediate DIEP flap recon with no rads needed and that was the right choice for me, more peace of mind and good cosmetic outcome although long recovery period

    Have you met with PS to discuss what might be feasible in terms of perhaps a larger removal of tissue but not a mastectomy with fat grafting or other cosmetic procedure after? I hope you can have an outcome that works as well as possible for you.

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  • saltmarsh
    saltmarsh Member Posts: 227
    edited April 2021

    @abigailj: I get to meet with my PS for the first time on the 13th. My concern is my surgical date is set for the 19th, so that's not a lot of time in between finding out what she says my viable options are and when I have my mastectomy. I'm trying to learn as much as I can now, and I'm pretty sure I'd like an autologous reconstruction if I can have one...I know I'm not a candidate for SIEP, but I was hoping for DIEP. And I found out today that if I want autologous reconstruction, they don't have enough time to do that on the 19th; we'd have to either switch my mastectomy date, or do this in two parts.


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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited April 2021

    saltmarsh, I am glad MRI showed how ILC was spread. Usually, ILC is very sneaky and doesn't show on scans. Mine did show in one sport and I was advised for a lumpectomy. Considering my dense breast and the fear of future recurrence I asked for BMX. After BMX, pathology showed ILC and LCIS in both breasts. I met PS only once before the surgery and he suggested implants since I wasn't a good candidate of other options. The day of the surgery, BS removed the breasts and PS placed temporary implants. In 3 months I had another surgery on replacing temporary with regular implants.

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  • BCat40
    BCat40 Member Posts: 241
    edited April 2021

    my guess is doctor is talking about calcifications. Usually that means you have an area of LCIS or DCIS in addition to a mass of invasive cancer. If you already have invasive cancer they don’t like to leave areas of LCIS or DCIS in when taking the mass out.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2021

    It is possible that if your surgery type has changed from lumpectomy to mastectomy, they will need to reschedule you anyway, because of the time allotted in the OR, especially if you choose reconstruction. You could probably find out more by calling the office to talk to your surgeon's scheduler.

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  • Too-Ticky
    Too-Ticky Member Posts: 45
    edited May 2021

    I'm sorry you've been given this news, Saltmarsh. Mine is also throughout the whole breast as multiple cancers and thickened areas - with one particularly large tumour. They've not done an MRI for me, they can tell that from the various mammograms, ultrasound scans and biopsies I've had. I can also tell from the widespread changes that I can feel throughout the whole breast that this is several large areas of thickened tissue and (developing more recently) some lumps. I'm booked in for a mastectomy in a few weeks time. Due to needing radiation, reconstruction won't be an option for me for a long while. I hope you are given some clarity on your options soon.

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