Why the differing opinions - cancer vs. not?

tpup

I was dx'd with LCIS last fall. LCIS in left breast. Had excisional biopsy/lumpectomy and it was removed, clear margins around. My breast surgeon has continuously emphasized it is NOT cancer. Just a marker. I had an oncology consult to talk about Tamoxifen, risk, future prevention. He is one of the top onco's in our area, extremely thorough and a good friend is a patient of his. He emphatically said it IS cancer, and called it stage 0, and obviously I am very, very lucky it was found and removed and for now in the clear and will be monitored closely. I have refused the Tamox. for now. I know breast surgeons deal only with BC issues vs an onco who deals with all cancers, but he has many BC patients as well. He said what I had was a "cancer" but not invasive...and a marker for invasive. Is it just semantics??

leaf

Its a question of how you define the word 'cancer'.  LCIS, by some authors, is considered part of the continuum of lobular neoplasia.  Lobular neoplasia includes ALH as well as LCIS. http://www.ncbi.nlm.nih.gov/pubmed/22106556   Cancer is not a 'line in the sand', but there is a gradation in the 'gray' middle between cancer and benign cells.

Almost everything about LCIS is controversial.

The NCI says

Defining Cancer

Cancer is a term used for diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems.

Cancer is not just one disease but many diseases. There are more than 100 different types of cancer.  http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer

Its also difficult for LCIS because LCIS is an unusual condition, and you can't reliably tell where it is on imaging.   So the only way you can tell 'if it is dividing without control' is by looking at slides under the microscope, which involves killing the cells.  While they can estimate cell growth rate by looking at how many cells are in the process of dividing in a cell sample, this is an indirect way of estimating cell growth.  By definition, LCIS cells stay inside the lobule; if they penetrated the lobule cell membrane wall they would be invasive.  LCIS has been said to be like 'marbles in a bag'.

LCIS was named by 2 prominent pathologists (looking at microscopic slides of course) in the early 1940s because it looked like DCIS except in the lobules.  There were very few cases of it, so they didn't know the natural history  (how many women with LCIS go on to get worse breast cancer) of the disease. http://www.springerlink.com/content/r727177p22hh0144/  (DCIS was discovered sometime around 1900.)

(There is also the problem of  PLCIS - pleomorphic lobular carcinoma in situ - which shares some characteristics of both LCIS and DCIS, but is usually considered more aggressive than classic LCIS, in part because pleomorphic ILC is usually considered more aggressive than classic ILC.)

They did know that LCIS conferred a higher risk of breast cancer.  However, most of the subsequent breast cancer was IDC, not ILC.  For the SEER data, the IBC detected after LCIS most often was of invasive ductal or related histology (49.7%); nonetheless, an unusually large proportion (23.1%) showed lobular histology (Table 1).    jco.ascopubs.org/content/23/24/5534.long    In LCIS patients, most future breast cancers occur not at the site of the LCIS, but in places that look normal on imaging.  They can't measure this directly, of course, because you need to remove the tissue and thus kill the cells in the sample in order to diagnose LCIS, so those removed cells, of course, cannot turn into invasive breast cancer.

Most women with LCIS will NOT go on to get any worse breast cancer of any sort.  (This may not apply to women with a strong family history of breast cancer, thus may have an inherited BRCA mutation, but this also is probably another controversial area in the world of LCIS.) http://jco.ascopubs.org/content/23/24/5534.long   Most of the women with LCIS who do go on to get breast cancer get IDC, not ILC.  However, in  a SMALL number of LCIS cases share some gene mutations with subsequent cases of ILC, thus in a SMALL number of cases, LCIS may morph into ILC.  http://www.ncbi.nlm.nih.gov/pubmed/17380381

From what I've read, they don't know how LCIS confers risk on other parts of the breast.  

mary625

My ILC tumor also had significant amounts of LCIS in it. Pathology actually double checked this, probably because it is not expected. They actually thought it could be DCIS, but it was not. I guess I am one of the very small number of cases, but wanted to share this. It would have been better had it morphed to IDC rather than ILC as it might have been detectable earlier.

leaf

 Mary, I'm so sorry that you were not diagnosed earlier.

The connection between LCIS and ILC is pretty murky, though.  Some women with ILC have synchronous LCIS,   but we don't know if, in all of these cases, LCIS caused the ILC.

This 2004  study  of synchronous ILC and LCIS found Despite the overall greater frequency of genomic changes in ILC versus LCIS, our data suggest that progression to the invasive phenotype does not require a specific genomic change and is not dependent on the cumulative burden of genomic changes, thus implicating multiple potential pathways for progression.http://onlinelibrary.wiley.com/doi/10.1002/cncr.20273/full  (emphasis mine)

In this 2008 paper of synchronous ILC and LCIS found:The remaining two cases of ILC and all 4 IDC were clonally unrelated to the previously diagnosed LCIS. While the overall risk for the development of invasive breast cancer following LCIS is relatively low and the majority of cases are clonally unrelated, our data clearly show that some LCIS eventually do progress to ILC. Thus, LCIS represents both an indicator lesion for an increased risk of subsequent invasive breast cancer and in some cases a precursor of ILC.  http://www.ncbi.nlm.nih.gov/pubmed/17380381 (emphasis mine)

However, this 2011 study opined that progression may be due to microRNA dysregulation. These data suggest that dysregulated miRNA expression contributes to lobular neoplastic progression. http://www.ncbi.nlm.nih.gov/projects/geo/query/acc.cgi?acc=GSE28514  which may partly explain why some papers did not find a majority of gene mutations in common? because a dysregulated micro RNA might cause random gene mutations, which may muddy the picture a lot - making it harder to find the genes in common?

I certainly wish there was some way we could prevent breast cancer, or at least detect it earlier. 

Thank you so much for sharing your story, mary, and the best of luck to you.

november

tpup-I just had PBMX. I was told that LCIS puts you at risk for invasive BC in either breast and not just in the one that it was found. It is not clear why your doctor would advise lumpectomy. I was also told that is not cancer but a marker

Anonymous

tpup----personally, I think the discussion comes down to semantics. I was diagnosed with LCIS 8.5 years ago (and also have family history of ILC--my mom)--when I mentioned that a radiologist told me LCIS wasn't cancer, my oncologist stated emphatically that it is cancer, just a non-invasive type. My breast surgeon also said this. Coming from a medical profession , I will always defer to the oncologists, as they are the specialsits in cancer, NOT the surgeons. (or radiologists, or anyone else). Having said that, my new oncologist in the same office--mine retired) prefers to call it a marker for high risk, rather than a "true" cancer, since it is a non-invasive cancer.  I'm not sure why all the controversy surrounding bc, as there are non-invasive cancers of many other body parts.

november--I had a lumpectomy with LCIS----I chose high risk surveillance and preventative meds---I'm not ready to go the route of PBMs, it's a very personal choice with this diagnosis. 

anne 

leaf

The purpose of a lumpectomy (AKA breast excision) of LCIS after LCIS is found on a core biopsy is NOT to remove the LCIS/ 'all the LCIS', but to see if 'something worse' (i.e. DCIS or invasive breast cancer) is in the area.   That's because DCIS is usually treated differently than LCIS, and of course, invasive can be treated differently than LCIS.  In studies, about 20% of the time (the number varies from study to study),  they find DCIS or invasive breast cancer in the area.  (This is also called 'upgrading'.) (Pleomorphic LCIS may have higher rates of upgrade. http://www.ncbi.nlm.nih.gov/pubmed/21306860)

Whether or not someone should excise the area after LCIS is found in a core biopsy is controversial, as is almost everything LCIS.

http://www.ncbi.nlm.nih.gov/pubmed/22268169

http://www.ncbi.nlm.nih.gov/pubmed/21861212

http://www.ncbi.nlm.nih.gov/pubmed/20395524

http://www.ncbi.nlm.nih.gov/pubmed/18716082