More tests and more concerns for busy, dense breasts

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MotherofCats88
MotherofCats88 Member Posts: 3
edited February 2020 in Waiting for Test Results

Hi everyone,

I've been lurking here for the last month since my rollercoaster ride began. Reading your posts and discussions has been so enlightening and helpful, so thank you all for sharing your stories!

I'm 31 yrs old, maternal side w/bc dx in 40's. I woke up January 15 with a large red area at 10 o'clock on my right breast. Dark red, veiny, hot to the touch, hard, more than 4"x5". Gyno appointment 2 days later saying likely mastitis (no pregnancy history), small chance IBC, sends me for an ultrasound. US shows too many cysts to count, some simple, some complex, fibroglandular tissue, extremely dense breasts, and they rule out mastitis.

Referred to breast surgeon who also notes puckering and peau d'orange orders mammo. Mammo (diagnostic plus many magnifications) shows extremely dense breasts, many microcalcifications. Next, US vacuum assisted core biopsies. 12 samples show stromal fibrosis, PASH, cyst tissue, and microcalcifications.

I ended up switching doctors in between all of this and going to MSK (last medical group dropped many balls, but that's a whole other story). MSK does 12 more magnified mammo images and they're satisfied that the microcalcification pattern looks ok. Original redness changes over time, dulling to what looks like an old bruise, occasionally turning red and pink, but never goes away.

Next, MRI. Surprise! Found a 1cm mass highly suspicious at 3 o'clock on right breast not seen on any other scans. Waiting for scheduling of next appointment for another vacuum assisted core biopsy for the mass that we'll try and do under US, but will do under MRI if it can't be found under US.

Every new step doesn't provide answers to the original concern, and somehow manages to find a new more concern-y concern and triggers more tests and more questions. Just wanting to scream!

Based on my lifetime risk being very high (and haven't been BRCA tested yet, but will once we get through these tests), I've already been told I'll be heading to the 6-month waiting room for the foreseeable future eventually if this next biopsy looks ok. I'm looking forward to parking all of these questions and all of this stress there hopefully returning to "normal" for a bit in between 6-month checkups.

Anyone else with crazy busy breasts that keep triggering new tests and concerns?

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  • SarBar22
    SarBar22 Member Posts: 34
    edited February 2020

    Yes! I've been dealing with so many things going on in my left breast since October of 2018 with no real end in sight it seems. And also a surgeon/office that dropped the ball a few times - are you in NYC? I’d be curious to hear your experience.

    I also have extremely dense beasts and had a lumpectomy last year for a radial scar, papilloma, and ADH. Went for follow up a month ago which led to a biopsy and probably surgery again. The pain I’ve been having has been only getting worse (and in last year’s area, not where this new lump is), I now have bloody discharge (it’s only been clear up until now), and I have had several swollen lymph nodes in my neck and collarbone area for the last 9 months. I have an MRI scheduled for Friday and then a follow-up with the surgeon in a couple weeks. I hope I can get to the bottom of all of this! Hoping to not have yearly surgery be the new norm..

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  • MotherofCats88
    MotherofCats88 Member Posts: 3
    edited February 2020

    Hi SarBar. Thanks for your response. The problematic waiting room with no end in sight sucks! I live in Southern coastal Connecticut, but work and have docs in NYC. If you haven’t already been to MSK, I’d highly recommend them. Despite all the unknowns and ups and downs, since I’ve been with them, I feel like I’m in such amazing, capable hands now that I’m with them.

    My core biopsies have been scheduled for Wednesday morning, so I’m hoping for some more answers shortly thereafter. Got my MRI results today and kind of wishing I didn’t look. Extreme fibroglandular tissue with marked parenchymal enhancement and patchy mass and non mass enhancement bilaterally in addition to suspicious mass findings, which sounds a lot like wonky findings with no easy answers. If this biopsy doesn’t bring answers, they’re recommending MRI every 6 months.

    Glad to hear you have a MRI Friday. Is this your first MRI? I hope it brings you answers. Please update once you get your results.

    Would be glad to talk further. Be well!

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