I had LCIS in 2011, a lumpectomy, and no radiation, which at that time was the standard of care. It was back in the lymph nodes in 2019 after seven years of exemestane. My suggestion: follow-up lumpectomy with radiation. If doctor says that's "too aggressive" get a second opinion. I have met many women who did not get radiation for LCIS and it returned. It was in vogue to say you really don't have cancer if it's in situ. I think that's a mistake. It is very early-stage and treatable cancer. You can be cured. Good luck

Hi Sarah and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. As you can already see, our Community is full of helpful members always willing to lend information, advice, and support -- we're all here for you!

Please keep us posted on how your biopsy goes and the results. We're sending good thoughts for benign results!

Looking forward to seeing you around the boards.

--The Mods

"f those who have been diagnosed with LCIS, have you been upgraded to a cancer diagnosis after an excisional biopsy?"

No. I was told the odds were 80%-85% that I would not be upgraded. Those are the typical odds for all biopsies.

I recently had two areas of calcifications come back as atypia. One set was alh, one alh and Lcis after stereotactic biopsies. I just had both areas surgically excised and the alh area came back as totally benign and the Lcis/alh area came back as more of the same (Lcis, alh). It took almost two months to get to that point. I had a Mri in-between and they found two more suspicious areas. so I had two Mri guided biopsies and they both came back as benign. it was an awful experience, long drawn out but im happy to say they didn't find anything worse!

Hi Sarah, I am also a newbie to all this as well. Recently diagnosed with LCIS, fea, in September. Also, very confused as to what I should do regarding treatment options. Going for genetic testing and when I asked about MRI, was told insurance doesnt cover it for my condition...If anyone has any opinions or can tell me what they have done and their prognosis is today, would be appreciated!

Many things about LCIS are controversial, even now. So even if you get 2nd opinions, you may get different recommendations. But, certainly if you've had the area excised, there is no huge rush to make a decision as to what to do (unlike if you had to make treatment decisions if you were found to have invasive breast cancer.)

I was diagnosed with classic LCIS in one breast in 2005, and many years later, also in the other breast. (It is actually quite common to have LCIS in both breasts if you have it in one breast.) I also have an unusual gene defect (not BRCA1 or 2) several years ago. If you have a SEVERE family history of breast/ovarian cancer, then your treatment choices may be different than if you don't. Remember, even in the 'general population' of women, about 1 in 8 women get breast cancer in their lives, and most of these women are NOT thought to have genetic causes. I read of one woman on that posted that had every female but one in her, her mother's and her grandmother's generation got breast cancer, which ended up being some 10 cases. That is certainly a SEVERE family history.

Its hard to get great data on LCIS because LCIS is only diagnosed by pathologists, and it is often not detected on mammograms. LCIS is usually an incidental finding. Since you have to remove at least a sample of it to diagnose it, you can't watch an undisturbed area in a breast over decades and see if it becomes DCIS or invasive cancer. Of the people with LCIS that DO go on to get DCIS or invasive cancer, many times it is in an area of the breast that previously was thought to be benign. So LCIS is quite hard to study.

Probably most women who started out with LCIS (with nothing worse like DCIS or invasive cancer) and went on to get DCIS or invasive cancer are not following this LCIS forum closely. They would be following the DCIS or invasive cancer forums because those conditions are more serious. So the number of responses you get to your question will NOT answer your question 'How many people with LCIS go on to get DCIS or invasive breast cancer?'

So do your research, take your time, check both what we know and how you feel about each choice, before you make your decision. Only you can say what is the best choice for you. If you've done your research, then you should get support here for whatever your choice (perhaps with the exception of NEVER getting any screening or treatment for the rest of your life.)

Best wishes,

leaf

Well, I'm an example of someone who did develop ILC from LCIS. I was shocked after my lumpectomy to read on the pathology report that they also found LCIS. I had all the pre surgery imagining - mammogram, ultrasound and MRI. The LCIS was not seen.

Sarah - LCIS is not considered cancer -- however DCIS is. Where did you read that hormone therapy causes other cancers? Are you talking about the aromatase inhibitors or tamoxifen? Those are both "anti" hormone therapies. They greatly prevent recurrence or BC from growing.

In late May of this year I was diagnosed with DCIS after a biopsy of a suspicious grouping of microcalcifications. I immediately saw a BS at a major breast cancer center / research hospital. She ordered an MRI in which another group of suspicious microcalcifications was found. Upon biopsy of this area, I was diagnosed with LCIS. The MRI also designated a large area of ALH. My mother is a 25 year survivor of pre-menopausal BC (go, mom!) and my paternal aunt died at 59 of BC. I was genetically tested for a panel of 15 gene mutations - none were found. Once the LCIS was discovered, my BS (whose initial recommendation was lumpectomy, radiation, tamoxifen) changed her recommendation to bilateral mastectomy.

I quickly sought a second opinion, again at a major BC Center. They agreed that based on my pre-menopausal status, family history and LCIS DX, that bilateral mastectomy would be their recommendation. They did give me the option of lumpectomy, but I know that I could not emotionally handle the intense surveillance that would be required. I made the choice to have the bilateral mastectomy to avoid invasive cancer down the road. Both hospitals agreed that my risk would be greater than 50% over my lifetime.

I currently have tissue expanders in and I'm looking forward to my implant exchange on December 2nd.

Hi Sarahn06! I think its great that you're looking into genetic causes. You probably already know this, but I just wanted to point out that there are Many genetic mutations that are associated with increased breast cancer risk. BRCA1 and/or 2 are probably the best known, and mutations in these two genes may cause higher breast cancer risks than most, but when I had genetic testing about 3 years ago, I was tested for about 20 different genetic mutations. You may be tested for even more gene defects now, because doing sequencing has become cheaper (certainly much cheaper than 10 or 15 years ago.)

When I had genetic testing, I personally found the information from a genetic counselor was MUCH more useful than that from my physician. (I think genetic counselors in general probably have more information about genetics than do most physicians; genetics is the genetic counselor's specialty.)

Best wishes, leaf

I'm not sure what you mean by sbx.

Since something showed lcis, I assume you had some tissue removed and that tissue was looked at by a pathologist under the microscope.

I have heard of some papers opining that if you had a core biopsy that showed (classic) LCIS, _and_ it had perfect correlation between imaging and the core biopsy, that further excision was not necessary. But, this too, is controversial. In the past, some places had different definitions of ALH and classic LCIS (which is sometimes/often now lumped together as lobular neoplasia.)

https://www.ncbi.nlm.nih.gov/pubmed/22847124

https://www.ncbi.nlm.nih.gov/pubmed/18306873

https://www.ncbi.nlm.nih.gov/pubmed/21306860

While, of course, you do not want to miss DCIS or an invasive breast cancer, the downside of a surgical biopsy/excision is that you do create scarring, which makes it more difficult to read future imaging.

I would go with your instincts and get a second opinion. I have always learned more when I had another opinion, even when I ended up disagreeing with it.

But people withLCIS develop ductal cancer more often than lobular cancer in the most recent study I saw.

yes, it is true hat a woman diagnosed with LCIS is more likely to get a ductal cancer than a lobular cancer but their risk of getting a lobular cancer is higher than women who have not been diagnosed with LCIS. I know I am at high risk and it could come back as either a ductal or a lobular. It is the possibility of the lobular version that terrifies me