Does the Size of LCIS Lesion Matter?

Lisa123456 · September 2016

In one research paper, I came across information that a large size of the LCIS lesion increases the risk of developing invasive BC. I didn't have an excision and don't know the exact size of my LCIS, but an MRI report defined the area as 2.5 cm across. This seems huge, considering it's only a lobule. Does anybody know what size healthy breast lobules are? My BS refuses to excise the lesion, but I'm thinking it might harbor invasive cells. And after a recent ALH diagnosis in my other breast, I'm leaning towards PBMX (although the BS doesn't even want to talk about it).

fleur-de-lis · September 2016

can you get a second opinion? I ask because I am not aware of how things like this are handled per the Canadian health policy.

BTW, I just read a paper today the stated pretty much the same thing....betting we read the same paper/article

Statistically speaking, pension Canada has to know that it is much cheaper to remove the problem( read between the lines here) than to pay for the treatment modalities of ILC and Company. Or am I off base here🙄

Wicked · September 2016

My LCIS was described as "extensive" and I had it in both breasts. My surgeon highly recommended excision. She was not recommending anything else. Turned out I did have invasive lobular along with it, but this does not happen for most women. My understanding is that it's pretty standard for docs to want an excisional biopsy of LCIS. What is the reason your surgeon doesn't want to excise? And regarding the size, remember that on MRI areas often look a lot bigger than they really are.

Lisa123456 · September 2016

Thanks fleur-de-lis, Wicket. I did have a second opinion, and both surgeons said they don't see a point of a lumpectomy. They gave the usual "because LCIS is most likely in multiple locations in both breasts, and it's just a marker for an increased risk of developing BC, so it doesn't make sense to remove one lesion". According to them the only logical surgery would be a BMX, which I agree with, but they don't want to do that either.

fleur-de-lis · September 2016

Lisa, I would try to get into another surgeon , if you can...while the LCIS might never develop into ILC, it very well might. There are other issues involved here that may, or may not be used in the commonly used risk BC indexes. Many of those risks are not discussed on BC. Org and since most members present with the more common ductual neoplasms, we are somewhat out of luck here....being in the minority.

Two of my co- mobidities bring my risk up substantially, and they have absolutely "nothing" to do with BC. And they are genetic and out of my control.

I am not suggesting that you have any additional health issues that raise your risk levels, but as you know from reading many medical journals...there is a real "question" as to just what really does, and does not work for us.

I had the amazing privilege of speaking with one of the authors of several articles on the lobular neoplastic spectrum recently. He stated the fact that lobular neoplasms are typically discovered at a later stage ( than) ductual neoplasms due to the loss of E- Cadherin ( CDH1 mutation?) making imaging more difficult due to the loss of cell adherence. We then added in my "other issues( he stated that I did not pick my parents wisely-LOL!) and he suggested that a PBMX would be in my best interests

He also stated that my "pulling sensation" in my ALH breast warranted a biopsy, whether the MRI suggested minor changes or not. Also due to the sarcoma type lesions that I had experienced, as those are another type of "sneaky"neoplasms. And even less is known about breast sarcomas than Lobular lesions

He is a German researcher, I reached out to him via email after reading his work...he often does not respond to such queries, his employees do, but my story suggested to him that I needed some straight answers and guidance in my situation.

Anonymous · September 2016

the purpose of the lumpectomy (or excisional biopsy) with LCIS is not to remove "all the LCIS" (as this would be very difficult to almost impossible, as LCIS is thought to be multicentric, multifocal, and bilateral, meaning if you have one area of LCIS you most likely have many areas); the purpose if to make sure there is nothing more serious lurking along with it, such as DCIS or invasive bc. As far as the size of the LCIS increasing the overall risk, I don't know the statistics on that. I was diagnosed with LCIS 13 years ago and my risk is further elevated by family history of bc (mom had ILC),. I had a lumpectomy, took tamoxifen for 5 years, then took evista for about 7 years, and have been doing close surveillance of alternating mammos and MRIs, but now oncologist wants me to stick with 3-D tomosynthesis mammos, as I have very little breast density.

Anne

Lisa123456 · September 2016

Both surgeons I consulted insisted that since the imaging and pathology findings were "concordant" in my case, they didn't believe there was anything else lurking in my LCIS. They also seem to be fixated on family history, which I don't have. I tried to tell them that it could be just missing data because I'm an only child and come from a long line of only children on my mother's side, but they just don't listen. Looking back, I think I should have lied and made up some fictional sisters and aunts affected by BC. At least I would have been put in a higher risk group and had a choice between surgery or monitoring.

Anonymous · September 2016

Lisa----even without any family history, you still are at elevated risk due to the LCIS, and you still have the 3 standard treatment options; (close monitoring, preventative meds, or bilateral mastectomies.) Prophylactic mastectomies are not medically necessary with LCIS (as they now consider LCIS to be more of a high risk marker, rather than a true cancer), however, some choose that option; it really boils down to what level of risk you are willing to live with. Keep in mind that all surgery comes with risk and side effects, some temporary, some long lasting. Even with my combined elevated risk from the LCIS and my mom's ILC, my docs all felt that BPMs were still not medically necessary. Fortunately, I have tolerated both tamoxifen and evista well and have not needed any further biopsies or lumpectomies in the past 13 years since my original diagnosis. As far as the excisional biopsy of the LCIS (to make sure nothing more serious like DCIS or invasive bc is in there along with it), I don't understand why the doctor would refuse to do that (?) I would suggest getting a 2nd opinion.

Anne

Lisa123456 · September 2016

Anne, yes, I did get a second opinion from a surgeon who treats a lot of ILCs, is a researcher and conducts clinical trials. She said she agrees with my first surgeon. It's not easy to get their attention, though. They see so many very ill people that women like us are just a nuisance to them, at least that what my impression is. I wasn't given any indication that I have a choice of surgery. The only choice that was presented to me was Tamoxifen or not. I live in Canada, so that could be a by-product of our socialized medical care.

leaf · September 2016

To help answer your question posted in your first post, (what is the size of a healthy breast lobule), this site says "The duct size varies from about 1 mm at the lobules to up to 5-8 mm near the nipple. The lobules are on an average 3 mm in the greatest diameter." http://emedicine.medscape.com/article/1948269-over...

LCIS can be in several adjacent lobules, and (I guess) often is.

According to this paper,

Although small LCIS studies have suggested an association between disease volume and subsequent breast cancer development,¹⁴ no clear link between clinicopathologic factors in women with LCIS and disease progression has been established. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC493464...

There is a lot we don't know about LCIS, and most things are controversial.

Lisa123456 · September 2016

Thank you, leaf, I searched and searched and couldn't find any info on the lobule size.

If we presume that LCIS affects several adjacent lobules, how would all the lobules be LCIS-ed at the same time? I'd think at least some of them should have ALH, whereas others would be more advanced and have LCIS. And I'm not even sure that lobules can be adjucent -- there must be some tissue between them.

Lisa123456 · September 2016

This is from the paper that Leaf linked to:

In a subgroup nested case-control analysis, volume of disease, which was defined as the ratio of slides with LCIS to total number of slides reviewed, was associated with breast cancer development: the ratio of number of slides with LCIS to total number of slides reviewed was significantly higher in women who went on to develop cancer (patient cases) compared with those who did not ...

... Ottesen et al found that the presence of ≥ 10 lobules with LCIS was significantly associated with a higher rate of breast cancer development (24% with ≥ 10 lobules v 8% with < 10 lobules; P = .028). In a nested case-control analysis, we also found that LCIS disease volume, represented by the ratio of number of slides with LCIS to the total number of slides examined, was significantly associated with breast cancer development, with a ratio of 0.5 to 1 representing the highest risk (odds ratio, 2.68). If validated in an independent population, this factor may provide an opportunity for risk stratification among women with LCIS.

The same article contains another important piece of information:

Outcomes by chemoprevention use in different age cohorts demonstrated reduced cancer development in all age cohorts, although this difference was statistically significant only among women younger than age 45 years (P = .023) and age 50 to 60 years (P = .008). For women age 45 to 50 and older than 60 years, this trend was nonsignificant.

This means for someone like me (age 49), Tamoxifen wouldn't make much of a difference, would it?

Wicked · September 2016

Lisa, that's interesting. I had LCIS to the margins of 16/16 slides from the left breast, to the margins of 4/9 on the right, and they found ILC on lumpectomy.

leaf · September 2016

I don't know if the size of LCIS lesions matters. I'm not a scientist. I'm not a statistician, but I know the numbers in each group really matters.

Be careful of sample size.

Its important to look at the number of cases in each group. They looked at (Table 4) 72 LCIS cases that went on to get BC vs 274 who did not. The pointed out that the patients in this subgroup analysis were less likely to have undergone chemoprevention. They point out that one paper (Fisher et al) did NOT find the number of LCIS lobules involved to be predictive of future breast cancer risk.

3 papers that look at some measurement of LCIS involvement and subsequent risk of BC with 2 papers for and 1 paper against does not sound like a consensus to me.

These findings certainly need to be validated in a larger group. They don't say how the pathologist decided how many slides to make in a particular patient. I haven't been trained on how to set up a good controlled study.

Lisa writes: If we presume that LCIS affects several adjacent lobules, how would all the lobules be LCIS-ed at the same time? I'd think at least some of them should have ALH, whereas others would be more advanced and have LCIS. And I'm not even sure that lobules can be adjucent -- there must be some tissue between them.

I'm not a pathologist, of course. Yes, there must be tissue between even adjacent lobules. Pubmed looks like its down right now, but If I remember Right, I think it is commonly assumed that most LCIS originates in the TDLU. I recently read a paper that said that LCIS pagetoid spread is common. (I, at least, have pagetoid spread.) I think this means the abnormal LCIS cells look like they are lining (and filling) the lobule, and these abnormal cells also are lining the path from the lobule towards the TDLU 'like soldiers'. So if you have 2 or more lobules connected to the same TDLU, they could all get LCIS. This is just a guess of course. I haven't read this in any paper I can recall.

I remember reading that about ?100-150 years ago, somebody took a wax cast of the ductal system of the breast in a cadaver. They found the ducts do not intersect, but IIRC it was too complicated to say if the lobules connect or intersect.

They do know that different spots of LCIS in the same breast can have different genetic mutations. So not all LCIS spots grow from one original clone of cells, but probably some do.

I certainly do not know how many lobules can be connected to one TDLU.

Anonymous · September 2016

Lisa----46 at diagnosis, I was in that age bracket (45-50), and chemoprevention meds (tamoxifen and then evista) have certainly helped proved helpfull in my case They have not only prevented an invasive bc (or DCIS) in all these past 13 years, but the tamox has dramatically decreased any breast density I ever had, making it much much easier to see things on imaging studies..

anne

Lisa123456 · September 2016

Thank you, ladies, for your input. There's so much information to process.

HeatherJeanne · September 2016

Interesting thread... Ihave been lurking while I go through the process. I had LCIS diagnosed as an incidental finding on biopsy and had to go back for an excisional. Second biopsy had no LCIS, but did have two benign types of neoplasms. BS sent me to MO for consult. MO said I had a "smidge" of LCIS so he called and spoke to both pathologists that reviewed my biopsies and they both agreed it was LCIS. MO recommended tamoxifen and said current studies show 70% reduction of risk. He said that research studies (which hhe gave me and I had already read from a link on this website) show an increase of risk due to LCIS per year. I Claire's with him that my current age of 41, if I wait a year and do nothing, my risk only goes up 2%, but if I live another 30 years, then my risk at that time would be 2x 30 or 60%. He agreed with the logic. So I asked about a PBM. He was very negative talking about how "nature is better" and that "science can or replicate the feel, shape, sensation of the real tissue."

i asked about the reduction in risk due to PBM and he said that the risk would be reduced to 1-2% total, but later he admitted that he had never heard of scan cancer popping up after the PBM done for LCIS.

So now I wait for the insurance to approve the plastics consult to hear what the surgeon has to say. i am grateful to have the time to fully explore my options and to frankly have options. I realize that many on this website don't have either luxury.

leaf · September 2016

As long time readers of my posts are absolutely sick of me continually pointing out, the science of predicting who will get breast cancer is in its infancy. Unless possibly you are in a Very High Risk group, such as have a known deleterious BRCA1 mutation (have a relative risk of about 200), they really do not know your risk of future breast cancer.

http://jnci.oxfordjournals.org/content/98/23/1673....

Current breast cancer risk prediction models perform well for populations but poorly for individuals...

If its this hard to predict which women in the normal population will get breast cancer, just think of how hard it is to predict which LCIS patients (a small group) will get breast cancer. (LCIS automatically excludes you from using the Gail model.)

HeatherJeanne · September 2016

Thank you Leaf for the article reference and perspective. I didn't know about the Gail mosel

Does the Size of LCIS Lesion Matter?

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