Just diagnosed with LCIS

Minnesota

Tara,

Have you considered going to a surgeon who can use your gluteal tissue (GAP)? www.breastcenter.com has good info on various procedures. I had a stacked DIEP done there. Whatever you decide, make sure your plastic surgeon has lots and lots of experience!

sunflower59

OMgosh... I had this all typed out and then i lost it.  I hate it when that happens!  It's a good thing it's Saturday and I have all day!  (I really do need to get a life!) 

I am still having a hard time with not really knowing if LCIS is cancer or not.  I had my first appointment with my Oncologist almost two weeks ago and he told me that it's NOT cancer.  However, I bought a book recently called Breast Caner: The Complete Guide (Fifth edition, fully revised) by Yashar Hirshaut and Peter I. Pressman and it clearly states that LCIS IS cancer.  Going to page 35.....

In situ cancers are sometimes referred to as precancerous.  This is not an accurate term, and I (author) consider it's use dangerous.  In situ cancer cells multiply like other malignancies, thouogh they may be slower-growing.  They are not life-threatening if they are treated promptly, but they are cancer.  They must get prompt attention--or the advantage of early detection will be lost and a more serious illness may result.

In situ cancers of the lobules, also called LCIS (lobular carcinoma in situ, or lublar neoplasia), are often discovered incidentally during a bioposy when we are investigating a minimal thickening or a subtle abnormality.  LCIS may show the same abnormality on mammograms as does DCIS.  This type of in situ cancer is most common in premenopausal women, and there is some likelihood that if this cancer (there's that word again!) appears in one breast, it may also occur in the other.  For that reason, if a lobular carcinoma in situ is found, the second breast should be watched particularly carefully.

Good grief....I don't know what to believe anymore!  My Oncologist strongly suggested that I start taking Tamoxifen.  I got the prescription filled but now I'm afraid to take it because of the possible side effects.  I had to go back to my Primary care doctor the other day and get back on anti-depressants because I am an emotional wreck now.  This is just one of 3 major events that are going on in my life right now but seems to be the one that's affecdting me the most.  I'm really torn on whether or not to start on the Tamoxifen.  Is anyone here taking it with no side effects??

Laurie 

Mykidsmom

Laurie - I am so sorry you are going through all this. I can't help you w the tamoxofin, I never took it. I opted for a BMx instead (for a number of reasons). But I know there are a number of other ladies on this web site that are taking tamoxofin w/ relatively few side effects. As for whether or not LCIS is cancer, I decided to go w/ the "yes it's cancer" folks. My final understanding is that cancer to some people entails an invasive disease, which LCIS is not. To me cancer entails a serious type of abnormal cells regardless of whether or not they are invasive. Therefore LCIS is a form of non-invasive cancer. And it should be taken seriously. That is not to say that it will always go on to become invasive, that's the good news. I hope this helps a little. Best wishes and hugs to you.

And I know something about having multiple bad things going on in your life at the same time. You will get through them, but it is tough right now. Take care. - Jean 

crazy4carrots

Laurie, I too was confused about LCIS.  It was diagnosed following a wire-guided US biopsy and when I first started reading about it, I didn't understand how something called "Lobular Carcinoma In Situ" could NOT be cancer, because carcinoma is the Latin term for cancer.

I then had a lumpectomy, where it was discovered I had a few more spots of LCIS and I opted for a mast (we didn't even discuss a prophylactic BM, and I doubt that I could even have considered it at that time -- everything happened so fast).

Then, my onc gave me a choice of chemo plus an AI (I'm post-menopausal), or just going straight to Femara, but when we looked at the  risk percentages of each, my choice was clear.  I took the chemo (3xFEC, 3xTAX) and then Femara.  I live in Canada and the oncotype dx is not available. to me.

I guess what I'm trying to say is this:  You must do what you feel comfortable doing and what will give you the most peace of mind.  There are times I wish I hadn't done chemo because I still have some aftereffects, and there are many times I wish I didn't have to be on Femara (well, all of the time, actually!).  But I came to terms with LCIS as a cancer, and I am, for the most part, glad I did the chemo. My remaining breast continues to be examined very closely and if anything looks "untoward", I'll have another mast.  But as long as there is no lymph or vascular involvement, I won't do chemo again.

If taking tamox gives you peace of mind, and if you are regularly checked for any side effects that might occur, then I say -- Go for it!  As far as I am concerned, anything that has carcinoma in the name IS cancer, but your life WILL CONTINUE!

My best to you, Linda

Anonymous

Laurie----when people hear the words "breast cancer", typically it brings up images of  chemo, radiation, hair loss, and life threatening illness.  Those scenarios are common with invasive cancer of any type, not just bc. But unlike invasive bc, LCIS does not require chemo or rads and is not life threatening as it is a non-invasive bc. There are cancer cells present in the lobules, but they are contained and have not broken thru into the surrounding breast tissue. It's potential to become  invasive is very low, less than 5% according to my bs. But it does carry a high risk for future invasive bc; stats vary, but I've read between 40 and 50%. When I was diagnosed almost 6 years ago, I was given the 3 standard options: 1)close monitoring 2) close monitoring with tamoxifen 3) BPMs. All my docs felt BPMs too drastic a choice for me, even with family history (mom had ILC), so I went with  #2. I finished up my 5 years of tamox last fall and now take Evista for further preventative measures. I continue with high risk surveillance of alternating mammos with MRIs every 6 months and breast exams on the opposite 6 months.  I have had SEs, but fortunately they have been mild, mainly hot flashes. Please Pm me with questions if you'd like.

Anne

leaf

I think there are several reasons why it has been somewhat controversial whether or not LCIS should be considered 'cancer'.

1) Cancer is not a 'line in the sand'; it is a spectrum.  You have definitely healthy cells on one side of the spectrum, and clearly cancerous cells on the other end of the spectrum.  Cancer is defined as 'uncontrolled growth' of cells.  It can be a muddle to classify the cells in the middle.  Different people will have different ideas what 'uncontrolled' means, and we have limited ways to directly measure cell growth in a preserved slide.

2) The classification 'LCIS' was first created  in 1941 by the prominent pathologists Foote and Stewart.  They can't directly measure cell division when they look at a sample of dead tissue; they look at things like how many cells are in the process of division.  But that is NOT a direct measure of how CONTROLLED the cell division is.  They have to look at other cell characteristics.  In 1941, it looked like LCIS was analogous to DCIS, but in the lobules instead of the ducts.  Nothing was known about the natural history of LCIS (how many, if any, people got breast cancer or died of it)  at the time.  LCIS was commonly treated with PBMs until the mid-1990s because that's how they treated invasive breast cancer. (This was before the discovery that lumpectomy and radiation may be an option for early invasive bc.)   There are many fewer cases of LCIS known at that time (the incidence has been increasing over the decades, with the increasing incidence of breast biopsies.)  The incidence of LCIS has always been much lower than DCIS, so it has been hard to study. 

3) Besides its low incidence, it has been difficult to study LCIS because different pathologists may have a different definition of LCIS.  So studies of LCIS may or may not include people we now may classify as ALH, or in other cases, may exclude women many pathologists would now call LCIS.  Even now, the pathologists at one institution may call a slide LCIS, and the pathologists at another institution may NOT call it LCIS.

Most oncologists do NOT consider LCIS cancer, but some do.  The National Cancer Institute and Stanford state that most feel it should not be considered cancer. 

"Although the name includes the term carcinoma, lobular carcinoma in situ (LCIS) is not really cancer, but rather a noninvasive condition that increases the risk of developing cancer in the future. LCIS, also known as lobular neoplasia or stage 0 breast cancer, occurs when abnormal cells accumulate in the breast lobules. Each breast has hundreds of milk producing lobules, which are connected to the milk ducts. In LCIS, the abnormal cells are often found throughout the breast lobules and both breasts are affected about 30 percent of the time.

Although most doctors don’t think that LCIS itself becomes breast cancer, about 25 percent of patients who have LCIS will develop breast cancer at some point in their lifetime.  This increased risk applies to both breasts, regardless of which breast is affected with LCIS, and can manifest as invasive cancer in either the lobules or ducts."http://cancer.stanford.edu/breastcancer/lcis.html

"The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

(Note that Stanford states that the lifetime risk of bc for LCIS women is about 25%,  and bc.org states it is something between 21 (at 15 years) and 40% (lifetime) "How greatly does having LCIS increase breast cancer risk? One estimate is that the lifetime risk of developing an invasive breast cancer is 30-40% for women with LCIS, versus a lifetime risk of 12.5% for the average woman. Another estimate suggests that an LCIS diagnosis increases breast cancer risk to 21% over the next 15 years."http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp)