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Sep 10, 2018 07:11PM
I'll chime in. I felt a lump in early June, 2018. My mom has had bc twice (1994/2015), and I have the dense, fibrous breasts, so I'm religious about the mammos and self exams. Had just had a clear mammo in Nov 2017. The day I went to to OB their mammo machine was down, so the OB sent me to the diagnostic center next door and ordered an ultrasound at the same time on the left, so I wouldn't have to make a second trip if there was something suspicious. Thank God she did. US found a 5-6 mm mass and biopsy confirmed ILC.
Annual mammograms were always clear, except for a biopsy in 2014 which came back benign. Lo and behold, however, the ILC was between the two clips from the 2014 and 2018 biopsies. They may have just missed what was probably LCIS in 2014. MRI confirmed no other suspicious areas and size of 6-7 mm.
After lumpectomy, the actual tumor removed 7/27 was 12 mm. In addition, there is LCIS in one margin and ALH in two others. I had mastopexy/reduction on both breasts in the same procedure as my lumpectomy. The tissue from the reduction in the left breast had LCIS, the tissue from the right breast was clear. For the first time in my life I have perky breasts, though this isn't how I would have chosen to have them.
I developed a MASSIVE hematoma 2 1/2 weeks after surgery (and after my follow up appointments with both the oncology surgeon and the plastic surgeon) that filled my chest from my clavicle to my ribs below my breast on the non-cancer side. It was terrifying as it filled up in the 15 min it took to get to the ER. Back to the OR to get all that mess removed. My PS said the chances of it happening were infinitesimal.
Right now I'm trying to decide between continuing the bct/rads/tamoxifen (I'm perimenopausal) path or mastectomy with prepectoral reconstruction. I'm not a good candidate for any kind of flap reconstruction (not enough tissue), so my surgeon recommended I make the decision about mastectomy prior to radiation. She felt double mastectomy was medical overkill, but said she'd support it. The good news is that the plastic surgeon said the lift/reduction was a great step as I now have the perfect skin envelopes for NSM and prepectoral implants. That was the best news I've had in 2018.
My gut was that BCT/rads isn't enough, but double mastectomy feels too extreme to me also. One thing I've learned so far is that having sexually functioning breast(s) are important to me. So when it occurred to me I could have a unilateral mastectomy, take the dreaded tamoxifen, and still have one breast with sensation, it felt right in my gut. I saw two oncologists in one day: one supported that plan after I explained why I believed it was the right choice for me, the other insisted I go with double if I chose mastectomy, even though there is no evidence of atypia on the right. The second did NOT like that I questioned the BCT/rads plan.
One thing I realized after talking with both of them is that their goals and my goals are different. They are focused on keeping the BC contained in my breasts. As long as it doesn't metastasize, and they can keep removing it, they consider it curable. My goal is to not have another BC. They keep giving my 10 year survival recurrence numbers which is not nearly long enough-I won't even be retired at 59. I have a two inch binder full of medical journal research. I get that BCT/rads and mastectomy have the same overall survival outcome-but BCT/rads closes the door on reconstruction for me. And I'm not willing to close that door yet.