LCIS questions

Hello there gigio!  You did a fine job in posting!  Welcome to the boards!  I'm sorry you have to go through all this worry.  I came here in 2005, when I was diagnosed with LCIS and nothing worse.  I knew I would not be able to find anyone with an LCIS (and nothing worse) diagnosis except on line.

First, I would make sure you have a hard copy of your pathology report.  I have classic LCIS (type A), which is the most common.  You want to know if you have pleomorphic LCIS (PLCIS).  Pleomorphic LCIS has more irregular cells, is more unusual.  PLCIS is thought to be more agressive than classic LCIS.  PLCIS was first described in the late 1990s or early 2000s, so we know a lot less about PLCIS.

Just about everything concerning LCIS is controversial, including the name LCIS.  As you found out, most (not all) oncologists consider the name LCIS is a misnomer - that it is not a cancer.  That's because it was first identified in the early 1940s by prominent pathologists looking at slides under the microscope, and they thought it was like DCIS except was in the lobules. (DCIS was first described in something like the late 1800s or early 1900s.)   They didn't know the natural history of LCIS in the 1940s.  Up until the 1990s or so, it was common for LCIS to be treated with bilateral mastectomies, because they didn't know the natural history of the disease because it was too unusual, and most women had mastectomies.

LCIS is an unusual finding.  Once, I did find a paper that said maybe the prevalence of LCIS was something like 1:10,000 women (or maybe it was women-years).   Numbers are hard to come by because usually LCIS does NOT show up on a mammogram, so we don't know how many women are walking around with LCIS and don't know it.  According to one study, LCIS (and nothing worse) is about 7 times less frequent than DCIS. http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/abstract;jsessionid=9B0D35475DE345FA06F9701136B937A6.d03t01

You may be wondering what E-cadherin means.  E-cadherin is a type of protein in the membrane of some cells (the E stands for epithelial, which is a type of cell that lines the ducts and lobules) that allows cells to stick together, like velcro.  So, it is thought, E-cadherin positive breast cancers tend to form lumps, as in IDC.  E-cadherin negative breast cancers tend to form sheets, such as ILC.  (There are exceptions, but they are unusual.) So they can use E-cadherin stains to help verify or confirm a diagnosis.  Some (not all) women choose to have their slides re-read at a major institution.  I did, and got the same results as before.  I think it matters more in the case of ADH vs DCIS, because ADH is treated in a different way than DCIS.

The following is chiefly concerning classic LCIS.  We don't know enough about PLCIS to really give established recommendations.

I found the NCI website about LCIS helpful. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5. 

These are the NCCN guidelines for LCIS.  As you can see, watchful waiting, with at least yearly mammograms and exams every 6-12 months, for 'most women'. 

Stage 0 Lobular Carcinoma in Situ (based on page 9)
The workup for LCIS includes a complete medical history and physical examination (see page 9). A diagnostic mammogram of both breasts (also known as bilateral) is done to determine if there are any other abnormal areas in either breast. A pathology review is suggested to make certain the correct diagnosis is LCIS and not invasive breast cancer or another condition.
LCIS is usually not treated with surgery other than the initial biopsy procedure. Observation is the preferred option for most women who are diagnosed with LCIS because neither is it an invasive cancer, nor does it normally become one. Nonetheless, women with LCIS have an increased risk of developing invasive breast cancer in either breast. Ways to reduce the individual risk of breast cancer have become an important option, and women should discuss these options with their oncologist.
One way to lower the risk for developing an invasive breast cancer is to take tamoxifen, an antiestrogen drug. There is evidence that, when used as hormone therapy (also known as endocrine therapy), it can lower this risk when taken for a full 5 years (see page 57).
A preventive mastectomy of both breasts may be an option for women with LCIS who have a very high risk for developing invasive breast cancer. Those determined to be very high risk are women who have many family members with breast cancer. An oncologist can help each patient decide whether to consider this treatment. Patients at high risk should also consider genetic counseling to found out if they have a gene that increases the risk for developing breast cancer before they decide to have a preventive mastectomy (also known as prophylactic mastectomy). Breast reconstruction is an option that may be done at the same time as the mastectomy or at a later date.
For patients who decide with their doctor on observation as the primary treatment for LCIS, follow up includes a medical history and physical exam every 6 to 12 months. These patients should have a mammogram every year unless they choose a bilateral mastectomy. Because tamoxifen increases endometrial cancer risk in postmenopausal women, women taking this drug should have a pelvic exam each year, and postmenopausal women should report any vaginal bleeding right away. These precautions are not needed if the uterus has been removed (hysterectomy). http://nccn.com/images/patient-guidelines/pdf/breast.pdf

Because they used to routinely do bilateral mastectomies for LCIS, they know that LCIS is often multifocal (meaning there are multiple spots in one breast), and often bilateral (in both breasts.)  But, unlike DCIS, there is no evidence all of these LCIS spots need to be removed.  In order to make sure they 'removed all the LCIS', they'd have to do bilateral mastectomies.  Also, of the LCIS women that do go on to get breast cancer in the future, the subsequent breast cancers are thought to form NOT at LCIS sites, but in breast tissue that was thought to be 'normal'. 

LCIS is usually found as an *incidental* finding on a breast biopsy.  In other words, the LCIS (from what we know) was not caused by your fibroadenoma.  Often, LCIS is found not *at*, but *adjacent to* the lesion that prompted the biopsy.  Even if you have had one spot of LCIS in one breast, LCIS puts both breasts at risk.  Its like 'action at a distance'.  Its a weird disease. From what I understand, they don't know why, or what feature of LCIS puts both breasts at risk.

In a *small* (no one will define 'small') number of cases, LCIS *may*  (not will, but may)  become invasive breast cancer.

If you have ovarian cancer and/or a lot of breast cancer in your family, you may want to consider genetic testing.  Here are the USPTF guidelines for BRCA testing.  They are just guidelines.  Some families have unusual patterns, so need to be checked out more carefully.  For example, if a generation had few women or few members, they may want to be checked out by a genetic counselor.  For example, my paternal grandmother had only sons, and my paternal grandmother had breast cancer, and I got referred. It ended up my paternal grandmother had breast cancer postmenopausally, so it was probably a sporatic case.  They found I had a low risk for a deleterious BRCA mutation.    http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical  Only about 5-15% of invasive breast cancers are thought to be due to a hereditary gene mutation.  About 70% of women who get breast cancer have no obvious risk factors (besides being a woman.)

Unlike those women who have an invasive breast cancer diagnosis, you have some time to make your decisions.  There is no one right or wrong decision - there is only the decision that is best for you!

Many people, even non-Christians and non-religious, have better things to do at Christmas than research their diseases! (Ira Flatow of Science Friday, say he, who is Jewish, wishes Merry Christmas to a neighbor, who is Muslim.  I had to laugh at that.)

Some places do list all these immunological stain results, but some do not.   HER2 testing was never done on my LCIS sample (in 2005/6), they did do ER/PR testing on mine.  My 2nd opinion at a major university, that I spent some $500 out of pocket for a 2nd opinion, consisted of about 10 words, and none of them concerned immunological staining, or included the words classical, pleomorphic,  or any description of the slides.  Different places differ.

If you read these boards, you might think that 95% of LCIS patients get prophylactic mastectomies, 4% chose antihormonals, and 1% chose monitoring and other methods to decrease their risk such as losing weight, eating healthy, etc.  I don't think those numbers are accurate of the general population of LCIS women.   I have seen at least one study found that less than half of the women who were offered tamoxifen (for those at higher risk - this included women who did NOT have LCIS) decided to take it.  

There have been studies that have shown that people that continue to post on-line support groups in general are driven by more psychic energy to post.  These women often have more complex issues.  I think that many LCIS women, once they make their decision, stop posting.  I don't think the number of posts, at least for classic LCIS women, match the treatment decisions made.

If you chose, for the moment, monitoring with/without other risk reducing strategies, that doesn't mean you can't change your mind later.  I think it is good, though, to have your decision based on what we know (or do not know) plus a check on your emotions - and not solely on your first impulse.  

I think I didn't have the optimal scenario presented to me: the first time I saw my breast surgeon after my LCIS diagnosis (on core biopsy) she said, "If you want bilateral mastectomies, I will fall over in a chair."  That stance follows the NCI guidelines, but, at that moment, she didn't know beans about my family history.  I don't think that was appropriate.  She has further repeated repeatedly, "I don't want to do any more surgery on you."  That, of course, is her perogative.  I would have preferred if she would have given me a choice, and if she didn't want to do them, say she would want me to see another surgeon.  

I think its very difficult when you first get a diagnosis, you don't know how worried you should be, because you don't know the numbers, and even if you get some numbers, you don't know how uncertain those numbers are.

I have a weak family history and classic type A LCIS, ALH, and nothing worse.  I was given a 40% lifetime chance of breast cancer from my genetics counselor, 30% by my onc, and 10-60%, but probably closer to 10%, by a major institution. They said if I wanted better numbers, I'd have to go to journals (I had done that.)  After that, I found out how breast cancer prediction is in its infancy.  Some papers have estimated the risk of invasive breast cancer for women with LCIS may be about 0.5-1% per year.  

You may want to hesitate to ask relatives and friends.They may give you UNASKED FOR treatment decsions.  I told one cousin, and she replied to me that she had a friend who had bilateral mastectomies and she was not happy that she did.  That was NOT helpful.  I didn't ask  her for her opinion.

I didn't want my breast surgeon or family or friends making the decision for me, especially if they didn't have full understanding.  Even if my breast surgeon knows my risk factors, she does NOT know my feelings.  I even had essentially a male stranger at work (I work in a hospital) tell me I needed bilateral mastectomies, because he had a co-worker who had LCIS. (This was a breach of confidentiality.) 

I wanted to make the decision FOR MYSELF.  I think EVERY  patient deserves that choice. NO ONE should be pressured directly or indirectly, in their choice.