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Sep 18, 2018 10:07AM
Dani-I was just diagnosed in June at 49. I had a lumpectomy on the left breast and breast lift and reduction on both breasts 7/27/18, both done in the same surgical procedure. The surgical oncologist took out the tumor, then the plastic surgeon did the lift. My PS specializing in reconstruction for BC, so he left the left breast a little larger and the nipple about 1cm lower than the right side so when the breast shrunk from radiation they would theoretically match. Frankly, despite the fact that my breasts had never been perky, and a half cup size different size-wise, I still loved them, so just adjusting to the idea they would go from a D to a C or full B took a couple weeks to wrap my head around. I'm now closing in on 2 months post surgery and still getting used to them. My tumor was estimated to be 5-7mm from ultrasound/MRI, but was 1.2 cm during the actual lumpectomy.
ILC tends to grow in single file lines, and shows up on imaging when those lines cross to create a critical mass that can be seen. I think of it as a pillow with tassels. Everyone is different, but in my case the tassels were as long as the pillow itself. It is this pattern of growth, for classic ILC, that makes it hard to detect. Mine was mammographically occult, I'd been having clear mammograms since 40. I did have one suspicious finding in 2014 and had a biopsy which was clear. However, when diagnosed/biopsied this year, my tumor turned out to be between the clip left from the biopsy in 2014 and the clip from the biopsy this year. So, they may have just missed what was probably LCIS in 2014.
The most important thing I learned early on is that ILC is typically very slow growing. By the time it shows up on imaging it has probably been there 3-5 years if less than 2 cm. That really helped put things in perspective for me. Don't panic. You have time to calm down and make good, informed decisions about what is right for you. That piece of information also helped me understand the pace of treatment, which can feel like a snails crawl when it's happening to you.
I'm a research junkie, and am 60% fascinated to learn all I can about my disease, yet 40% horrified that it's happening to me. I have access to a college library login which has allowed me access to all the medical journals I can absorb, and with a 6 week recovery period had lots of time on my hands to dive into the details.
For me, at 49, what's important is playing the long game with ILC. Post lumpectomy I still have lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia in my left (cancer) breast. That my surgeon didn't remove it is medically appropriate. Both ALH and LCIS are "non obligate precursors" to ILC. They are also considered just high risk markers. It is unknown whether ALH becomes LCIS which becomes ILC in a step by step process; all three are known collectively as Lobular Neoplasia. Some LCIS may be more genetically inclined to turn into ILC, other LCIS may be there for my lifetime and never do so. Researchers are working hard, it appears, to figure that out. But at least in published literature, they don't know yet what flips the switch from an in situ lesion to an invasive cancer. Thus, "non obligate precursor".
I love/hate that: not obliged to turn into cancer. I've seen it described as "indolent" many times. Which makes me imagine a 20 year old living in my basement: he may move out, he may not. Who knows? He may decide to get a job and move out, and leave me in peace. He may decide to hang out forever eating my food and taking over the entire basement. Why he does what he does is a mystery. When he will get off his ass and do something is a mystery.
BUT. The longer we have left to live with LCIS/ALH, the more likely it is we will have another breast cancer from an odds perspective as lobular neoplasia, as a disease category, is often multi focal and bilateral. BCT/radiation with tamoxifen (for those of us premenopausal) is the standard of care. The tamoxifen is very important as it substantially reduces the risk of another invasive BC, particularly in the contralateral breast that isn't being treated with BCT/rads and protection from metastases outside the breast.
One thing I have really realized on this journey (and I'm speaking strictly for me and the docs I've consulted), is they want to give me 10 year recurrence odds. That only takes me to 59. Which isn't nearly long enough. They also focus on detecting and treating another cancer before it metastasizes outside the breast. So their goal is different than mine: I never want to deal with another breast cancer. They are focused more on keeping anything that comes up as "curable" as long as it's in the breast. That's what I mean by playing the long game.
There are many variables to consider when weighing treatment options: sexually functioning breasts, cosmetic breasts/reconstruction options, radiation, if one needs chemo, tamoxifen/AI inhibitors, etc. A good place to start is a list of what's important for you: what do you want out of treatment and what level of risk are you willing to live with in the 5, 10, 15, 20 year time frames. Each step of the way will reveal another piece of the puzzle.