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Nov 6, 2018 10:42PM
There is a doctor at Mercy/Oklahoma City who is a specialist in early breast cancer detection and maintains a blog he posts to a once a month. While I found his site after I'd done my research and made my decision, I found several of his posts very supportive of the decision I ended up making, specifically what he says in the post below about LCIS and the moniker of "risk factor" vs "non obligate precursor.
Evidence continues to accumulate that the ipsilateral side is more likely to develop invasive cancer than the contralateral side, and that there is a disproportionate number of invasive lobular cancers, sometimes occurring at the old LCIS site. This is not "tissue risk" behavior, but is "non-obligated precursor" behavior, much like low grade DCIS. (From personal experience, once you perform a wide excision for LCIS, then 10 years later, you're back in the O.R. again, operating on invasive lobular carcinoma originating at the exact site where you previously did the biopsy, you quit using the phrase, "LCIS is only a risk factor.")
In my case, I had a 12 mm ILC, that was removed via lumpectomy, but had LCIS remaining in 3 margins after the surgery. I was trying to understand my rate of risk in each breast to make a decision about pursuing radiation vs. mastectomy.
I read through Dr. Hollingsworth's entire blog, and he has a lot to say about the data models out there, including Tyrer-Cuzick, and some of the issues with looking at lifetime risk vs. remaining lifetime risk, etc. He also talks about density being the key risk factor as mammography is not particularly effective for detecting BC in women with dense breasts and lobular neoplasia (ALH, LCIS, and ILC). My ILC, for example, was completely occult on 3D mammogram.
LCIS and ILC are diagnoses where we have to look at the long (10+ years) game. Even with tamoxifen/AI and radiation, the occurrence of a first or additional breast cancer after diagnosis/treatment goes up after the 10 year mark, and continues to increase. Depending on your age that can be a big deal or not.
Considering that we with lobular are in the vast minority (and not studied nearly as much as our ductal sisters), I think the reality is: they just don't know enough to make truly definitive predictions. They are SWAGs at best. Dr. Hollingsworth has some interesting things to say about the difference between mathematical risk models and predicting for an individual patient.
Some studies say risk factors like density, age at menarche, family history, etc., don't have an impact, others do. What I take away from that is: they just don't know yet. Particularly for lobular. Given lobulars "indolent" nature, I stopped even looking at studies with less than 10 years of follow-up. Even this discussion thread proves the "they don't know" point: some studies say Tyrer-Cuzick is pretty accurate, others don't.
I also started looking at doctors differently. I'm 49. When a doctor says to me, "in my experience" I take that with a huge grain of salt if that doctor is younger than me. Most oncology related doctors really start practicing in their specialty in their early 30s. And in oncology, only 10-15% of their patients have lobular. So a doctor younger than me has a pretty short data set of experience they're working from, with a minority of their patients. I also realized that an oncologists idea of success is different than mine: they want to ensure that if I DO have another cancer, it is caught early and can be removed with it is still "curable" in the breast. My idea of success is to NOT HAVE another cancer.
In the end, the best we can hope for is a range of risk for each breast and make our individual decisions from there.