Exactly how does it increase the risk?

Kerri_Oz · July 2018

Can anyone explain exactly how or why LCIS increases the risk of breast cancer? I can't find anywhere that tells me. If it's not a precancerous condition (and even in some literature considered a benign lesion), what about it makes it a marker for increased risk?

About 6 years ago, I was diagnoses with CIN3 (highest stage of precancer of the cervix). My doc told me that was not a risk factor for breast cancer, but showed that my body had the propensity for abnormal cellular changes, so in all likelihood, I could be more likely to develop other cancers. Is LCIS like that?

And if the risk is increased in both breasts, even if LCIS is only found in one breast, is it really the LCIS at all? Is there something else about the condition they haven't discovered yet? Also, how can changes in the lobules increase the risk in the ducts?

I'm so confused. Things like smoking increasing the risk make sense to me, but this whole LCIS thing is just more convoluted and seemingly senseless the more I read about it. Is it just something where no one even really knows what they're talking about? Does any of it even make any sense at all? I feel like my head is about to explode

farmerlucy · July 2018

I have no answers just a thought. I did expanded genetic testing through Color Genomics. https://www.color.com/product/hereditary-cancer-genetic-test

Of course the testing is quite useful, but at the end you also you get a phone session with a genetic counselor. The one I talked to was very knowlegeable. Might be worth the $249. I see that it is available to Australia.

I hope you get some answers.

Kerri_Oz · July 2018

Interesting, Lucy. I hadn't even considered the genetics of it. Maybe LCIS is caused by an as yet undiscovered gene mutation, which is what is the actual risk marker, rather than the LCIS itself.

I did think about getting tested for the genes, but decided it was a bit redundant with everything else going on with my breasts.

Lea7777 · July 2018

I did genetic testing and nothing unusual. Your questions could well be the basis of new important studies and PhD theses, Kerrie Oz.

(can't turn off bold) I have seen the very basic explanation of "it is like having freckles makes you more prone to sunburn." Finding freckles in one area means you may have them elsewhere.

farmerlucy · July 2018

The thing my genetic counselor did (the one at the hospital, also well known in the LCIS world - Dr Alan Hollingsworth) was to take into account my family history plus all the stuff going on in my breasts to give me a lifetime risk of invasive cancer. He came up with a 50% lifetime risk. His support helped me to get a PBM. As it turns out he was mostly right- turns out I already had an unseen IDC.

beach2beach · July 2018

I'd say it is a marker. Our body has shown it can make abnormal cells(lcis) and who knows what triggers the body to make invasive ones. I had no idea I had LCIS or DCIS. My biopsy showed IDC initially then ILC after mastectomy and within that same 7mm area lcis and dcis. crazy

Kerri_Oz · July 2018

Lea - yeah, that makes sense. Maybe it is all down to genetics. Fair haired, freckled parents prone to sunburn are more likely to have fair haired, freckled kids who will also be more prone to sunburn, which could be said to be a genetic predisposition to skin cancer.

Lucy - I haven't seen a genetic counselor, but I did put all my details into the IBIS calculator, and it came back with a 64% life time chance of breast cancer. That's more than enough to convince me. My PBMX was scheduled for Aug 29, but has been rescheduled to Oct 24 (GRRRRR!), and I'm quite scared they will find something malignant in there as well. Did you have to have extra treatment after the IDC was found? Is there anyway they can definitively link the IDC to the LCIS?

Beach - so a bit like the CIN3, I guess? Maybe not cancer in itself, but more of an indicator of our cells aptness to go rogue. It's a bit scary, isn't it, that everything other than the IDC was kind of an incidental finding. And also makes you wonder which came first - LCIS, IDC, DCIS or ILC. If one hadn't developed, would the others still developed, or was the initial one the thing that started a domino effect? Questions, questions, questions. And probably no real good answers.

farmerlucy · July 2018

I think the thing that sticks out for me is this. My right breast was up to no good. I don't care that one pathologist called it DCIS\LCIS and another ALH/ADH. It was up to no good. Add extremely dense tissue to the mix et voila unseen IDC. My only additional treatment was years of hormonal therapy.

The real loss for me - and this still sticks in my craw, is that I’m going to have the chance of recurrence hanging over my head for the rest on my life. If I'd done the PBM two years earlier at the first excisional I might have outrun the beast. I suggested it to my high risk screening doctor years earlier.

But it's all good. The human mind learns to live with just about anything.

Kerri_Oz · July 2018

Lucy - yes, that's the bottom line, isn't it? The risk. My right breast also is up to no good, as you put it. LCIS/ALH and complex fibroadenoma. Add to that dense breasts, family history, 30 years as a heavy smoker (quit over 5 years ago), estrogen replacement therapy, not having kids, and so on and so forth and I feel like it's the perfect storm. At my ultrasound, my breasts were described as very messy and complex and the sonographer said outright that she thinks cancer developing is a matter of when, not if. The whys and wherefores don't really matter. Dealing with the threat is what matters.

That "what if" would bother me, too. I'm hoping I get mine in time, before anything malignant has a chance to develop, but I won't know, of course, until after the surgery and pathology testing. And if something malignant is found, I will definitely be asking what if I'd had the surgery back in July last year when I first asked for it.

Exactly how does it increase the risk?

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