Radiologist says LCIS isn't cancer

Hi LeeMcC,  I know exactly how you feel and I am also looking for that answer.  Most on this subject think LCIS is not cancer.  Most literature I find is from older studies.  There are more recent studies (within the last 5-10 yrs) that indicate that a small percentage of LCIS might actually progress to bc in some people, but that most LCIS cells are a marker in some people inceasing their risk for bc.  LCIS is not common, so probably this is why there is not that much information.  I have seen one person on this forum who thinks LCIS is cancer.  Most are under the impression that it is NOT.  Leaf has posted URL's for LCIS info and is very knowledgeable.  I am confused because my surgeon says it is not cancer and my onc said my diagnosis is non-invasive breast cancer.  Most drs think it is not cancer.  So is my dr aware of more recent studies that have not been published? She is on staff on a large university hosp that is conducting studies. I think if we believe what has been published thus far, we have to believe it is not cancer.  I just wonder if we will be seeing that thinking change as technology advances.

They used to remove both breasts if you had LCIS.  Those biopsies showed that if there was  LCIS in one spot in the breast, it was also likely to be in other places and also in the other breast..but they no longer automatically take drastic measures to remove LCIS  if  you have LCIS and nothing more, because it is not an invasive cancer.  The name Lobular Carcinoma In-Situ stuck with it, but most consider it not to be cancer.   

 So, so far, although my onc thinks it is non-invasive cancer, her treatment advice is no different from the general concensus:  frequent clinical exams (2X yr) and mammograms (2X yr) so that I am seen every 3 mos.  Also she wants me to start Evista (not tamoxifene since I am post menopausal).   I have no family history of bc. Recommendation may be different for you due to family history. 

I had lumpectomy after they found ADH on streotactic biopsy.  They found LCIS on lumpectomy biopsy.  I developed infection and incision opened.  After 5-6 wks it finally closed.  It has been 2 mos and 3 wks since the lumpectomy and I still get occasional stabbing pains.  I cant help but wonder if its from surgery or if its from LCIS still lurking about.   My breast is always achy too.  I swear...it is very tiring this whole thing.  I am going to just come out and ask my onc why she thinks differently than most.  If she has any info she can share, I'll post.  Sorry I don't have a concrete answer for you.  I will keep looking and hoping for good news!  Good luck to you.

 This is what the NCI (national cancer institute) says about LCIS:

"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. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

And this from the Stanford website:

"

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

Since cancer is defined as 'uncontrolled growth', then to me that would imply that it would grow in all directions.  But in about 60% of women with LCIS, this will never happen; the LCIS will be confined to the lobules (and sometimes ducts).  

There is also controversy whether DCIS should be called cancer.

Its probably somewhat like the Supreme Court.  Usually the cases that end up in the Supreme Court are not the easily decised cases.  Usually they get the cases that are difficult ones.  In many Supreme court decisions, they have split decisions.  Usually one or more supreme court justices disagree with another. They all know (or should know) law; they have different interpretations.

Part of the problem is that LCIS was named by 2 prominent pathologists in 1941 before they had any idea about the natural history of the disease.  They thought it was analogous to DCIS.  But it isn't. 

Fortunate1 - I cannot answer your question about breaking out of the lobes. I can tell you that ILC is reportedly harder to dx than IDC, so that may account some what for it not being dx'd as often. I can also tell you what my oncologist told me. Essentially the same as Anne's doctor. For some, the term "cancer" means that it is invasive. By that definition, LCIS is not cancer. But for others, the term cancer is abnormal hyperplasia type growths of cells. By that definition, LCIS is cancer. My oncologist takes LCIS very seriously, especially w/ other risk factors. He considers it a stage 0 cancer. Hope that helps. Best wishes! - Jean

((((Tara))))

I surely do feel as if I'm being attacked on all fronts.  Tho' I know many are far worse off than I right now.  I feel as if nothing is going right/good in my life, except my son! But I'm so lost and depressed.  Thanks for thinking of me ladies.

Thank You.

LeeMcC - I will be thinking of you. Take care. - Jean

LeeMcC - As I am sure you know, the recommended course of action for LCIS is usually the following:

1. Close Monitoring (quarterly MRIs, mammograms and oncologist visits)

2. Close Monitoring plus tamoxofin

3. BPM

I had a number of reasons why I didn't want to go through 1 or 2. I have had bad mammograms since I was 19. I have a strong family hx of cancer, including bc on my mother's side. I had very dense breast tissue (even though I am 54). I had cystic breasts that had been "thickening" recently. I had calcifications from one side to the other of my left breast. I had had previous biopsies, and didn't look forward to more. I was a poor candidate for tamoxofin due to a bleeding disorder that entails me taking clotting factors before surgery. And I am a total worry wart. I couldn't handle the worry associated with checking every quarter to see whether I had advanced to invasive cancer. I am also pragmatic. My priority is living my life and being there for my kids and my husband, not having my original breasts. So, for me, the BPM was a no brainer.

That being said. There are many woman that have done wonderfully with the close monitoring and have not advanced to anything more serious than LCIS. That is certainly an option! Talk to your doctors, and get their opinions, then talk to your loved ones and dig into yourself. Ultimately you will know what is right for you. Remember, you do not need to make a quick decision on this.

Take care. - Jean

Hi LeeMcC!  I know I am reading your post late and I wonder what ended up happening?  I had DCIS removed but still have the LCIS remaining- I just started taking Tamoxifin- no side effects so far!  I DID NOT want to take that first pill, but I did and all seems okay after three weeks.  I still have the thought of a mastectomy in the back of my head- my surgeon suggested going to speak with a plastic surgeon to clarify how recon is done and boy, that was an eye opener for sure- it is a lot more involved than I had thought.  I would have to go with the uninflated balloon being put in after the mastectomy and then going back every 6 weeks or so for a 'fill' until they look like what I want them to look like.  I would have the nipple removed as well and then tattooed back on- they can do amazing things these days!  PM if you'd like- I'd love to know what path you took.

Michele

I certainly know what you mean about having multiple biopsies and scars/dents.  I'm small breasted anyhow and had a 5 cm lump removed from my left breast and radiation.  And 2 separate lumpectomies in my right breast, one 3 cm around 3 o'clock on my right breast and at the top in the areola which was 2 cm+ and I have very dense breasts too.  So I have 'dents' in both breasts and partial loss of pigmentation in the right as well.  I too STILL have PBM on my mind, but have lost my job, have court/custody issue Monday and I'm having a hysterectomy in 4 days, so still am also confused and depressed.  Good luck to you.