As you can probably tell, I'm attempting to keep a sense of humor about this. Sometimes it works; sometimes it doesn't.
Where to start?...
In 2010, my gyno noticed a lump in my breast. I was only 34 at that point and was not in the habit of doing self exams. (Silly me). At that point, the lump was about 2x1x2 cm on ultrasound/mammo. They decided to do a core needle biopsy, and reported fibroadenoma. I was advised to keep an eye (finger?) on it to make sure it didn't get significantly larger. I was lulled into a false sense of complacency by the fibroadenoma dx (plus a prior fibroadenoma dx in 1997).
Suddenly, in the middle of 2014, the lump started to increase in size. Kind of fast. Suddenly my breast was spilling out of all my bras. I started calling my boobs Biggie Smalls (biggie was the fibro breast, obviously). I mentioned this to my PCP, and she gave me a scrip for an ultrasound, but at around the same time I also started having other health issues which eventually led to a diagnosis of MCTD (a lupus-like autoimmune disease) in December of 2014, so all of that kind of took over for a while and I didn't go for the US. Once things calmed down, I realized my lump was still growing, so I finally went in to see my gyno, who prescribed a mammo and an US.On both sides, because I now had a second lump on the left.
The US/mammo showed that the lump on the right had grown to a size of 5.5x2.7x5.3 cm. No wonder I was noticing a difference! It also had its own blood supply and some sectioning inside. The lump on the left was relatively small, about 1 cm. It was decided that I'd get a core needle biopsy on the left. Because of the size of the lump on the right, it was decided that I needed an excision bx (basically a lumpectomy). In spite of the growth of the lump, the doctor reassured me of a benign result because 'you're young.' (I'm 39...but I guess that's young-ish for BC).
Results came in after about a week and the doctor called to report that it was a fibroadenoma, but that the fibro was (in his words) "absolutely full of" LCIS. "A ton of it", he said.
He said that nothing additional is going to be discussed or done until I have a follow-up MRI, which I can't do until late September/early October because the surgery trauma will just throw up a bunch of false signals. Apparently they are going to look to be sure there isn't a concurrent IBC hiding anywhere. I didn't get a lot of info, he just told me to google LCIS and that we'd talk more after the MRI. He did say I'd have to have mammos/MRIs every year on an alternating schedule.
So, I've been researching. I used the IBIS risk calculator that was recommended by the breast center (one of the only ones that takes LCIS into account) and was given a 67% lifetime risk. Risk factors are: LCIS (obvs), dense breasts, second-degree relative with BC (though some don't consider this a risk), 3 previous biopsies, use of birth control pills for a whopping 22 years (only stopped about a year ago), and the fact that I am childless. (Did I forget any?) The Halls calculator, which takes density into account as well as birth control use, gave me a jaw-dropping 85% lifetime risk.
I luckily have access to research databases at my job, so I've read lots of stuff in medical journals about how nobody really knows WHAT the heck LCIS actually does (is it a predictor? a non-obligate precursor? something else?) and how the estimation of BC risk has an accuracy level that is barely better than the flipping of a coin. (Wouldn't that be fun? A coin toss before your biopsies? Like a football game only for your boobs.) I don't know if all of that makes me feel better or worse.
Up until a year ago, I considered myself very healthy. I am vegan, I got at least an hour of exercise a day on most days (dogs - gotta walk 'em), I did yoga... now for the past 10 months or so it's been one health thing after another. I'm starting to come back out of the crippling depression like symptoms that made me want to do nothing but lay on the couch and watch mindless television. That's good. But I have crazy mood swings - I'm dancing, I'm weeping, I'm laughing, look I'm making cookies, wait now I'm eating them all and crying again (What the hell? My mind is spinning and my husband must have whiplash.)
Anyway, it's helped me to read about things that the rest of you are going through. I don't think I will want to take tamoxifen for a number of reasons. First, I'm already on Plaquenil which can have consequences for your eyeballs and two eyeball-wrecking meds is a lot in my opinion. Second, I'm not entirely sure I've ruled out the idea of having kids and you cannot get pregnant while on Tamoxifen. Third, I'm not sure I want menopause symptoms already. :(
My BS on the first phone call did mention PBX. My mind has already gone there. I think much will depend on the MRI results and what happens over the next few years.
If you have any advice, information you'd like to share, or anything else, please drop a reply. Sorry for the length of the post.
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