LOOKING FOR LATEST INFO ON LCIS

RITZGAL

LOOKING FOR LATEST INFO ON LCIS

RITZGAL

Hi,  LCIS is a controversial subject whether it is a marker, or pre-cancer, or cancer.  Knowing for sure would influence one's choices for treatment.  I have read so much my head is spinning.  I haven't found a lot of info from the last few years that is available to the public without a price.  I am on a fixed income, but wouldn't mind paying if I knew I could understand it.  Does anybody know where I can get current information on LCIS whether free or for a nominal fee?  I have learned so much from reading this discussion board, but it seems that there isn't enough out there for us.  My onclogist said that LCIS was a mostly non-invasive bc, but recent studies suggest a small percentage may actually progress to an invasive bc or to DCIS.  My surgeon said it was not cancer.  What the heck?  So then the onc said people think of cancer as growing out of control.  LCIS was known to stay put.  But more recent studies are changing that thinking for some.  THAT is what I need to see.

Anonymous

Ritzgal----personally, I generally give more credence to what an oncologist says then to what a surgeon says--the oncologist is the one who is the cancer specialist, not the surgeon. (even if it is a breast surgeon). But all my doctors (including my surgeon) agree that it IS breast cancer, just a non-invasive type; there are bc cells that are contained within the lobules that haven't broken thru to the surrounding breast tissue. It is not the kind of cancer that the average person envisions when they think of cancer (hair loss, nausea/vomiting, chemo, etc...); it is not invasive, it does not require radiation or chemo and is not life threatening, but the cells are still cancerous cells.  My bs said the risk for it becoming invasive was very low, about 5%. Everything I've ever learned about it was free--if you google it, many websites will come up. Unfortunately, there is not a whole lot out there written about it, as it hasn't been studied enough. I finished my 5 years of tamoxifen in Oct, I still am on high risk surveillance of alternating mammos with MRIs every 6 months, breast exams on the opposite 6 months schedule, and now am taking Evista for further prevention. I haven't had to have any further biopsies since my initial diagnosis almost 6 years ago. Not a choice for everyone, but works for me for now. Feel free to PM me if you'd like.

anne

RITZGAL

Thanks Anne,  I figured the onc was the one with the right answers.  Even on the Medhelp website, they say LCIS isn't really cancer, but they should say it isn't invasive cancer if that's what they mean.  It is very confusing to newbies.  Speaking of newbies, I think I just might PM you as soon as I figure out what that means.  Not tomorrow though, Time out from all of this.  Three of my grandchildren playing baseball tomorrow. 

PSK07

Ritzgal

I've had DCIS and was diagnosed with LCIS and ALH last year. SInce there was a lesion, they did a lumpectomy for it. My docs were pretty clear on the difference - DCIS is cancer, just pre-invasive.  LCIS is currently not considered cancer, despite the name, but a marker or non-obligate pre-cursor for invasive cancers.  My risk of developing invasive cancer is higher than it was when I was diagnosed and treated for DCIS, and it doesn't drop over time. (At least that's my understanding.)

There are a number of ways of treating it - watchful waiting is one, with plenty of mammograms and MRIs and breast exams.  Some women opt for prophylactic mastectomy.  I am also taking tamoxifen for the next 5 years which does cut the risk for me. 

I found a number of articles on PubMed on LCIS.   

take care..

leaf

The URL for Pubmed is http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

RITZGAL

To both PSK07 , leaf, and everyone, thanks so much for your caring replies and information.  I see there is a lot of information out there, and I hope that the continuing research will soon give us the answers to all of our questions, and the way to prevention.

leaf

I hope that is true too, but the incidence of LCIS is so low that I doubt if they will have definitive answers in my lifetime.  LCIS was first described in 1941.  Up until the 1990s they were doing bilateral mastectomies on most LCIS patients because they didn't know the natural history of the disease.  They assumed it was the same as DCIS. They don't know a lot about what increase in risk LCIS gives a woman - I have been given values as low as a lifetime incidence of invasive bc of 10% (from a Major University) to about 80% (from a bc risk calculator that has NOT NOT NOT been compared to populations-so is highly suspect - since we know so little about LCIS.) Be forewarned- do NOT have a heart attack if you have LCIS and put your numbers into this calculator. http://www.halls.md/breast/risk.htm

It is hard to study since we don't know how many women are walking around with LCIS (and nothing worse) and don't know it.  We do know the diagnosis of LCIS has been increasing.

 For example, this study opines that the approximate incidence has risen from about 1:100,000 women-years to about 10 :100,000 women-years (in the highest incidence group) over the last 20 or 30 years. http://www.ncbi.nlm.nih.gov/pubmed/12353815

This study opined the incidence of LCIS has increased about 2.5 fold from 1980-2001 http://www.ncbi.nlm.nih.gov/pubmed/15824180

In the SEER study, there were about 7 times more DCIS (and nothing worse) patients as LCIS (and nothing worse) patients. http://www.ncbi.nlm.nih.gov/pubmed/16604564

So its hard to study since there are few women who have it, and we don't know who is walking around with it but doesn't know it.

RITZGAL

thanks leaf.  Of course, the first thing I did was take the test.  My risk says 33% on one test and 72% on other (lifetime) without Tamoxifen.  All I'm taking away from that is that I have a high risk.  I'm learning to accept what little they know, but I still have hope.  It's just that there is conflicting information, which is worse than little information.  I'm just hoping for now that they figure out LCIS.

leaf

Another thing about statistics in the http://www.halls.md/breast/risk.htm breast cancer risk calculator: it assumes that risk factors are additive.  That means that if you have 2 risk factors, A and B, it adds the risks together and assumes your risk will be A+B.

That is an assumption.  For the general population, some risk factors are NOT additive: the risk is NOT A+B; it is less.  (Alcohol consumption in the general population is one example.)

Theoretically, the risk factor for a person with 2 or more risk factors may be greater than A+B, or less than A+B, or A+B. 

AFAIK, there aren't studies with enough LCIS women to know if certain risk factors are additive. For example, as far as I know, they don't know if a strong family history confers an additional risk if you already have LCIS.  

That's why the  Hall risk factor calculator carefully states that this calculator has NOT been compared to actual populations.

Its one reason why the NCI modified Gail model specifically excludes LCIS - they don't know the risk of LCIS, or if LCIS plus other conditions confers more (or less) risk.

RITZGAL

Hello and thank u once again leaf.  So the Hall calculator adds ADH and LCIS, and that's why my risk is so high.  And the Gail model doesn't even consider LCIS.  I get it.  It's only a test.  But  I will keep looking for what the general consensus is on LCIS down the road.  Currently there is conflicting views on whether it is cancer or not.  In my opinion, the jury is not in.  I see the results of the studies indicating that in a small percentage it is a non-obligate pre-cursor for invasive cancer.  Just what is a pre-cursor for invasive cancer?  Does that mean it is non-invasive now, and may turn into invasive cancer later?

leaf

Yes, the Hall calculator adds your ADH, LCIS (the LCIS risk factor is probably pretty unknown), plus all the risk factors included in the questions (when you started menstruating, number of biopsies, etc.).  They have NOT compared your result of 72% with the actual people who have Your risk factors (ADH, LCIS, your age, your menstrual start age, your breastfeeding history,  your number of children,etc.)

The Hall calculator is probably more valuable for the women who have conditions that are more common.  If you look on the links on the Hall website, you can see that he created this in order to show the average woman how low her risk for breast cancer really is.

Yes, there are conflicting opinions on whether or not to consider LCIS as cancer or pre-cancer.  There are at least 2 areas of controversy in this issue.  a) Experts cannot agree how to define cancer in this setting and b)  Does LCIS fit this definition? 

Cancer is defined as 'uncontrolled growth'.  If all of the activity is within in the ducts and/or lobules (as happens with DCIS and LCIS), is that 'uncontrolled'?

But MOST (not all) oncologists classify LCIS as benign. " 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

A precursor for cancer would mean it is a lesion that is 'on the path' towards cancer.  A nonobligate precursor means that it is on the path towards being cancer, it is not cancer now, and in many, many cases it will NEVER become invasive cancer.  In other words, all LCIS spots are not destined, or fated, to become cancer. 

 Some women with LCIS will go on to get bc.  Because LCIS women are watched more closely, it is often found earlier than the average woman.  It is thought that in a small (no one wants to specify specifically) number of cases, eventually some LCIS spots will probably turn into invasive cancer.   Many people feel this because when they look at the DNA sequence of women who have both LCIS and invasive breast cancer, in a small number of cases, the LCIS spots have many of the same genetic abnormalities that the invasive cancer has. But, as the numbers at the bottom of this post suggest, the majority of women with LCIS will NEVER get invasive breast cancer.

Of those women who have LCIS and go on to get invasive breast cancer, their cancer usually  occurs not at the site of LCIS, but somewhere else in either breast.  (That's also why LCIS treatments are usually given bilaterally - both breasts are at risk, even if the other breast has no LCIS.) So that's why LCIS is usually thought of as a 'marker' of higher risk. We don't know why there is this 'risk at a distant spot', or 'risk at a distance'.  Its a weird disease.

Yes, LCIS is not invasive now.  In a small number of cases, a certain, particular spot of LCIS MAY (not will, but may) turn into invasive cancer.  

 

To give you some idea about numbers, here is a quote from this site:

"Results: The researchers found that between 1973 and 1998:

• 4,853 women were diagnosed with LCIS. Of these women, 350 were diagnosed with invasive breast cancer a year or more later." http://www.breastcancer.org/symptoms/new_research/111005.jsp

"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

taraleec

I just took the risk assessment at the halls md assessment site and my estimated risk is greater than 85%. 

RITZGAL

LEAF, YOU ARE AN ANGEL.  A comprehensive look in layman's terms.  Thanks so much.

RITZGAL

taraleec,  Yu came out even worse than me.  Don't take this Hall's test to heart.  I think it needs fine tuning.

leaf

My risk according to the Hall calculator also were in the >80% risk range.   As I pointed out earlier, this is undoubtedly WRONG.    All of us get values above 70%, yet in the paper cited above 350 out of 4853 LCIS women got cancer over 25 years. 

If you estimate that our lifetime will usually not be more than 50 years (most LCIS is found in one's 40s or 50s), then, if it is linear, say double the 350 to make 700 people out of 4853.  That would mean that about 15% of these LCIS women got cancer, not 70% or 80%.

These 350 women are REAL PEOPLE, not theoretical values.  I doubt if all 3 of us have risk factors horribly out of average.    For example, I am single and have never had children, while some of the other posters have had children.

So the calculator may work well for 'average' women, but not for LCIS women.

leaf

If you haven't already read my blurb in another thread, there is also more information on how well the modified Gail model  as seen on the NCI website (not the Hall's model) works for breast cancer prediction.

Now the modified Gail model specifically excludes LCIS and DCIS, so it doesn't apply to us. http://www.cancer.gov/bcrisktool/

There are other breast cancer risk models, but this modified Gail model is the one that is normally used - it HAS been compared to populations.(The Hall model has NOT been compared to populations that have those particular characteristics.)

You may want to carefully read this editorial from a professional journal.  http://www.ncbi.nlm.nih.gov/pubmed/17148763  Then click on the 'free final text' brown button on the right to access the article.

Essentially, it opines that we know quite well the risk of a group  of women with your characteristics.  However,  estimating  your risk, you as an individual, is a different matter.  This editorial opines that our ability to estimate YOUR risk is only 'slightly better than the toss of a dice.'  The article describes statistical tests they use to measure how well a model does.

Since the Gail model is the most used model, you can imagine the state of predicting your  risk of breast cancer, for a group as small as LCIS women.

So, essentially, the models we have for predicting breast cancer  risk (even for the 'average woman') are not good at all to predict YOUR chances of having breast cancer.

taraleec

Hi leaf,  thank you, you're so knowledgeable.  I'm trying to send you a Private message.

kokoo

Hi. I am diagnosed with LCIS and I've been to 4 doctors. All the docotros have told me this is NOT cancer but a marker for cancer. I am on Tamx. and I just start it 2 months ago. There a lot of info on LCIS on line but, it can be very confusing, and exasperaring. Good luck!