Confused about ILC vs IDC..

JudyO

Like to have some comments from the gals who do all of the research and are in the know....

I have read studies and comments where ILC is a better prognosis than ILC (Anderson Clinic studyand also Mayo Clinic website), then I saw one where they say no difference (recent onc magazine), and then I saw another study where they said ILC mets more often than IDC (found that one night on a google search and can't relocate it).

Now I just read that they are questioning the oncotype test for ILC since it was developed for IDC and may not be accurate. I have read articles where they state for the good biology of ILC it should be better than IDC but doesn't seem to be so. I think they think there is an unknown difference that negates some of the good that the ILC seems to have.

I have also seen that some places don't grade ILC thinking the grading sytem doesn't work for these. 

Often you hear comments that chemo may not work on ILC. Why, is it different and what should be used.....?

Since ILC is 15% of the cases,are they spending the time and money to find out what the difference is and how to better treat these..... or since IDC is more like 85% is that where the time and funding goes?

ann-idiot

Hi JudyO, I have ILC and here's what I've gathered (although it is very possible I'm not even close to correct!) ILC seems to respond to hormone therapy better than to chemo, perhaps because chemo attacks fast growing cells and Lobular is more slow growing and usually ER+PR+. ILC can be trickier to get all of with lumpectomy and trickier to find because you usually don't feel a distinct lump and it doesn't always show up on mamo or MRI (like in my case) Because it's harder to find, it's sometimes bigger than an IDC patient's tumor because it's been there and in hiding longer and there's usually a higher % of patients with lymph node involement. It can have a better outcome because the tumor is generally of a low grade (well differentiated). ILC and IDC are VERY different cancers and should be treated with their own specific therapies. Doctors who want to treat ILC that's ER+PR+HER2- with chemo are leaning toward TC over AC. I'll have to look into the Oncotype dx score with regards to its accuracy in predicting recurrance with ILC tumors, all I know is my score was 11 which makes me feel the risks of chemo might outweigh the benefits in my particular case. PM me if you want.

nash

Judy, you're right on with your summary of the research and literature for ILC. Throw in there the subtypes of ILC that are considered to be more aggressive than classic ILC, and you basically have a big mess of confusion.

I wasn't aware that now they're questioning Oncotype for ILC. Yikes.

And yes, the research dollars seem to go towards IDC b/c it's the majority. Unless a minority subtype is very obviously and universally aggressive, like HER2+, it's not going to get the attention.

Basically, the oncs seem to rely on receptor status, node status, tumor size, oncotype and age of patient rather than ILC vs. IDC. And given the conflicting research conclusions, it seems that that is really the only available course of action for them.

The problem is that with cancer in general, there are no hard and fast absolutes. You asked why chemo is often not suggested for ILC--conventional wisdom says that chemo doesn't work well on grade 1 tumors, and many ILC are grade 1. Yet, we've had grade 1 ILC girls on the boards who have had a good response to neoadjuvant chemo. 

I will never forget one onc who said, "I've had patients who were not expected to do well who did great, and patients I thought would be fine, die". And I think that about sums it up. There are so many variables in each patient, even beyond the ILC vs IDC, that they really just don't know what is best for each person.

Seabee

As far as I know the research for the Oncotype DX test was NOT limited to IDC patients, although the majority of patients in all general studies of BC are mostly IDC, because that's how the rate of occurrence breaks down. I don't know of any evidence that the Oncotype scores are less reliable for ILC than for IDC. If you do, please pass on the reference.

The studies I've seen indicate that survival rates for ILC are slightly better than for IDC, and I haven't seen anything to indicate than it metastasizes more often. Since it tends to be less aggressive than IDC, that seems unlikely, but once again, I'd like to see the study.

Most studies of BC are devoted to advanced cases, understandably, and most of these are IDC. I think this has led to the existing tendency to overtreat early-stage BC with methods that work best on the most aggressive tumors.

nash

Judy, here's a good article on Medscape about ILC vs. IDC. I can't post a live link with my browser, but you can cut and paste it. http://www.medscape.com/viewarticle/470725_1

Kleenex

Nash - I cut and pasted and tried to view the link, but it appears you have to log in to see it?

JudyO

Seabee...I have tried to find the article I saw about the study where they said ILC mets more than IDC but can't find it. I did A LOT of internet searching in my early dx days and can't remember where I saw that.

matic22

Hello ladies!

I am working in medical oncology., also breast cancer and have to say that oncotype DX is not only for IDC, it is for all invasive breast cancers ,so please do not be so sceptical about lobular as a cancer that is treated differently as ductal, that has worse survival and so on.

I am working in these days with a medical oncologist, who is very experienced , she has been working in oncology for nearly 36 years now, and she said the other day when I asked about prognosis -long term prognosis of ductal and lobular, she said that classical lobular, low grade is cancer that has better survival than average ductal, but that also the node status is important in correlation with tumour size.-for example, if you have small lobualr and many nodes affected, prognosis would be worse because this tells a lot of biology of the cancer, on the other hand, if lobular is big(more than 5 cm) and some nodes are affected(up to 5), it still has good prognosis,.I hope you get what I mean.

But you know what...this cancer stuff is so unpredictable.-I work with breast cancer patients every day and see many women doing well despite aggressive tumour characteristics and many lymph nodes affected.And I have to tell you, but women who bother theirself with this cancer stuff have much WORSE SURVIVAL AND PROGNOSIS, than those who ignore it.

I will keep in touch, I want to help ypu with this own experience.

Kind regards from Slovenia,

MATIC

JudyO

Matic22....I read your bio and see you are a doctor so you probably know more than most of us...definitely more than me. I was interested in you comment regarding the correlation of size and lymph nodes. I was told the opposite...smaller size in more lymph nodes may mean it is growing slower for a longer time. You can see my stats...my tumor was 2.2, grade 1, 1 for aggresiveness and 1 for mitous...in 7 nodes...never seen on a mamo until a small shadow was looked at and wasn't able to feel it. I have seen that many of the women with larger tumors have the low onoc type scores so I imagine what you are saying is true....Those seem to just want to grow and sit in the breast...looks like mine wanted to travel....hope the treatments work for me.

matic22

Dear JudyO!

I have been told for example a 2 cm lobular in 7 nodes is different in biology than a 4 cm in 3 nodes, for example.Your tumour is less agressive but it went to 7 nodes, so cells went to 7 nodes, and i wonder.-why did not they go only to 3 nodes and grew inside the first one throghouly.Do you know what I mean.These are questions we do not know the answers yet.I personally prefer large lobulars in less than 3 nodes, but I have seen women surviving lobular 8 cm and 10 nodes, or even more, so this is really only gueessing.I strongly believe that there are mechanisms of imune cells of every individual person.so please hang in there and survive.Do not bother yourself with those nodes.Nodes have a big role as in cancer as in healthy organism.

Stay cool;)

Matic

nash

Kleenex, yes, you have to register with Medscape to view the article (sorry, forgot about that), but it's free, and will give you access to all sorts of nifty studies.

Gitane

Hi Matic, It's really good to hear from you.  Do you have any thoughts on the efficacy of Zometa every 6 months for prevention of mets.  More of us are starting to be treated with it now.  Also, do you know if androgen receptors in lobular cancer have any significance.  It seems lobular tends to have them more than ductal.  Can you see I am one of the ladies who doesn't "ignore" the cancer diagnosis like you are recommending?

G 

matic22

Hi dear Gitane!

Well as far as Zometa is concerned in adjuvant setting, I spoke to the oncologist, for whome I know is the best in our institute, if Zometa would be good for my mother according to her path report and she said that YES, IT WOULD BE APPROPRIATE, but we are waiting for final results from St,.Gallen , which will be in MARCH AND if there it will be down and assessed that Zometa is good for adjuvant seeting in breast cancer patient, mum will get it, but only twice per yerar.so in your case I also believe Zometa would reduct your chancer of spreading.-

The drastic finding of Zometa as antitumour active agent is a miracle, I believe.

It prevents not only bone metastases but also other metastases and it improves survival, and chance of cure.

Androgen receptors are important in prognosis, but we nowadays have not had any medicine that would be targeted for androgen receptors. They are prognostically important, tumours which have these receptors have better prognosis.but it also depends on degree of these receptors.

It is still quite unknown.

I am going to do a big research of lobular in our country or maybe in America, when I attend to go in 3 years time and then we will see the results.

I hope you are doing well.:;)

Matic

Seabee

Nash--Good reference!  It more or less sums up what I'd learned in bits and pieces.

Judy-O--Perhaps you are recalling a reference to ILC tending to met more than IDC to the GI tract and the ovaries. That it does do, while IDC mets more to the lungs..

JudyO

Thanks Nash....I read the posting..

Seabee....I already knew that ILC tends to met more to GI tract and ovaries...knew that before the I did research since one of my friends went through a long medical problem...even went to the Mayo clinic and ended up back here to only find out that the cancer she had originated in the breast...ILC that was never found on a mamo...to this day (2 years later) they have never been able to see anything in the breast. I wish I could find the study I looked at but just can't find it...I search so many things in the early days...don't have a clue on where it was.

nash

Judy, I've read somewhere about ILC metastisizing more in general than IDC, and I think it has to do with the loss of e-cadherin. Here's an excerpt from Google books that talks about e-cadherin and mets--again, sorry I can't post a live link, and hope this url works if you cut and paste:

http://books.google.com/books?id=D2gzOEnYSp0C&pg=PA19&lpg=PA19&dq=ILC+metastasis+e-cadherin&source=bl&ots=YD2gjDR5gj&sig=RZF3oiK31P8KFIKceeZ8nsCkGpQ&hl=en&ei=PnOcSeS8Fpj8Muq2nZgF&sa=X&oi=book_result&resnum=8&ct=result#PPA19,M1

Yowsers! That's a mess! If there's no way to get that puppy to link up, google "ILC metastisis e-cadherin" and scroll down to the article entitled "New Developments in Metastisis Suppresor Research--Google Books Result".

Sorry my browser is so wonky!

JudyO

Nash...thank you, the more I read the more I get confused and frightened. It was interesting when they talked about the stomach issues. Both of my grandmothers died in their mid 50s with what was then dx as stomach cancer. My aunt died in her mid 50s of breast cancer and now here I am in my mid 50s with breast cancer. I think there is a lot more to the genetics of all of this.

Gitane

Hi Matic,  

Thank you for taking the time to give me such a thorough response to my questions.  I appreciate that you did that.  I hope you come back to visit often,  we learn so much from you.

G 

nash

Here's another article that talks about e-cahderin loss and mets:

http://www.labvision.com/ab.cfm?first=AntiBody&second=2100

There's a clinical study going on right now, studying how many ILC patients are positive for the CDH-1 gene that causes familial gastric cancer.

Judy, don't be scared by all this--like you said, there's a lot of genetics involved, and nothing is absolute. 

Seabee

Interesting stuff. I'm intrigued by the fact that they flatly state that LCIS is a precursor of ILC, which some sources deny, but which seems to me a logical conclusion  I'm not sure I know what they mean when they say that ILC is "the most invasive," since other studies find it less aggressive and less likely to recur than IDC. Are they referring to its tendency to inflitrate other tissue rather than forming a discrete mass?

JudyO

Nash...went to this sight and am glad studies are being done. My biggest hope is that progress is made in these studies and the results are there when I need them. thanks for sharing....Also I am curious if it is true that ILC met more often than IDC why do you often hear it has a better prognosis...or at least the same prognosis...wouldn't you think it would have a worse one....

nash

Judy, I wonder the same thing about ILC prognosis. There's so much confusion. I'm glad more studies are being done, too.

Seabee, I also thought it was interesting that they came out and stated that LCIS is a presursor to ILC. Also a topic of confusion. I have a lot of PLCIS left in my bad boob, which after much hemming and hawing by both the docs and me, was left in there following lumpectomy for the PILC. Now, ironically, after my last screening MRI, they've found a spot in my good boob that needs to be biopsied (on 3/16). So the bad boob with all the PLCIS in it is stable, but I've got a possible new primary in the good boob. Talk about confusion. 

JudyO

Some thoughts that entered my mind at about 3am...

Is ILC a worst prognosis....?????

I think many of the study that have been done look at recurrence at 5 years...even the MD Anderson study that Dr. Christop (spelling bad on that) that said ILC did better and may not need chemo only hormone drugs was a five year thing....

From what I read triple negatives and HER2 recurrence is fairly quick...3 years...maybe 5...

My onc said all of the old studies are bad since they didn't know about HER2 and so they couldn't take that into consideration...many of the bad IDC were probably HER2..the new drugs make most of those what they consider curable...

ILC tends to recur at the 5 to 10 year mark....since most ILC are  found in older women do we really know how many have a recurrence at the 10 or 15 year mark...most of those weren't watched at this point and I bet with age many had died of other causes...

The lasted MD Anderson study looking at 5- 10 year recurrence said that stage 3 has a 13% recurrence in the 5 to 10. What surprised them was the grade 1 who had a 14% recurrence..higher than the others ...are the ILC who are only about 10% of the population and a large % of the grade 1 in here....????  I think ILC is more often stage 3 than not.

Chemo doesn't seem to work on grade 1...if you review the ILC on this sight where the chemo worked on grade 1 they had HER2 positive....so we ILC probably don't get anything from the chemo even when we do it...

Yes we are ER+ and PR+ but that saves some but for many it just slows down the grow.....the cancer gets smart and goes around it...does that mean ILC again is just a late recurrence ..??????

 My friend was stage 4 ILC from the get go....since it does grow slow they have her on arimidex and feel she has some time....they can't find a tumor in her breast on mamo or mri....she is in her early 50s.....hit her bad....major surgery to clean out her gastros....etc....

Would love to hear some thoughts....

JudyO

Nash...hope all goes well for you! I just came home from a bone density test and am all nervous again. These tests sure do a number on me. I went into the test smiling and happy. The techs were the same...until part way into the test they started whispering and pointing at the screen. I don't know why they changed but it got me all worked up. I left all sad and almost hit a car on the way driving home....Now my day is shot....Keep us up to date on your tests....JudyO

nash

Thanks, Judy. And I'll hold a good thought about your bone density test. Nothing worse than going in for some test and having the techs act like they've seen something awful.

I was actually having the same ponderances as your previous 3 am post. ILC (and ER/PR+ tumors in general) tend to have a late (even 15-20 year) recurrence, according to my onc. Which would explain why a lot of the studies say that ILC has a better DFS (disease free survival) but not a better OS (overall survival). 

JudyO

Nash...Cleaning my house and of course my mind is on all of this...I have read that breast cancer cells on the average double every 100 days...it takes about 10 years at that rate for a tumor to be about 1 cm...some grow slower...some faster....in the thought of the 15 year recurrence...if you had one of the average to slower growers I would guess it would take more than the 10 years to show up as a met...I know when I was in chemo 3 of the ladies were recurrence out a ways..one 12 years. one 13 years and one 15 years. I questioned them but none knew there stats...all three did say they took tamofin....and one did say she was stage 3 initially. Interesting...I am 57 so I pray for the 10 to 15 years...then maybe they will have something to keep me going even longer....

nash

I agree--I hope for all the new drugs down the pike. I was 38 at diagnosis--10-15 years doesn't get me much time. And I always wonder when my tumor started growing--it was 2.7 cm, with a mitosis of 1, so when did it start? When I was 15?!? It's probably best for me not to think too much about it, LOL.

Seabee

Nash and JudyO--may the results of both your tests be favorable. I try not to worry about these things. I could die in an automobile accident tomorrow, but there's no point in fretting about it,

I have played numbers games with my tumor, however. Four years ago my mammogram showed nothing. Last year I had a 2.2 cm mass--or at least that was the part they used to stage it. Being lobular, it was multifocal, had "in situ features," and extended over a wider area. This  doubling business gets more dramatic when one gets into fractions of a centimeter. If the 100 day figure applies, then if I had done the mammogram three months earlier, it woud have been only 1.1 cm and no doubt harder to detect.  Six months earlier it would have been 5.5 mm and a year earlier a mere 1.125 mm, surely undetectable by mammogram. I'm sure the process of tumor growth isn't all this tidy, but it gives a rough idea of how little difference there can be time wise between Stage 1 tumors and bigger ones.

Which may or may not mean something. Time for dinner.

nash

LOL, Seabee, you're right--it all may or may not mean something. I often think, "I could get hit by a bus", too, to keep myself from obsessing too much about things. Most of the time I'm pretty calm about a recurrence. But I'm a numbers/data person, and I like to quantify things in order to get a sense of control. My prognosis wouldn't matter too much to me except that my kids were 5 and 8 when I was diagnosed (7 and 10 now). Things like, "Will I live long enough to see the little one out of high school" creep into my mind. And my family could win some sort of award for Stage IV disease and death--I've lost both of my parents, my FIL, my grandfather and my uncle/godfather to cancer, with four of those deaths being in the past seven years. So we don't have a great track record of surviving this stuff in my family.

I'm babbling, but I think you probably can see where I'm going with this.

Seabee

Well, if numbers mean anything, you and Judy O have more legitimate concerns than I do, and I have more to worry about than many posters here with 0 nodes. In addition to my mother having BC, my father died of lymphoma, but both were isolated cases, so it seems like my having both parents with cancer was a matter of chance,

I started reading about BC to understand what was going on, but I have enormous curiosity, and I've developed an interest in the subject quite apart from its personal significance. I asked my rad onc to show me the x-rays they were taking the other day, just so I could have some idea what they were looking for.  He was quite cooperative, but I got the impression that this was the first time a patient had asked to see them. Since I got a good look at the mammograms and US images that started this business, I'm rather disappointed that I didn't get to see the MRI also.

 But though it has become a new interest, I try not to let BC take over my life. I just finished my second week of radiation treatments. I do them at 8:15 a.m., and then spend the rest of the day working, reading and posting here, walking my dog, or doing something else that I enjoy.  Life is a gift, and I don't want to waste a minute of it brooding about things that are beyond my control.

JudyO

Seabee...I am a lot like you I have an enormous curiosity. I have tried to curtail it since I am spending far to much of my free time on it. Yes I have a more legitimate concern than you do...7 nodes is much worst than 3....hopefully the chemo does work?...or the arimidex...I think you are in a good position since you had the oncotype test....your tumor was not agressive so you are in a good spot. I wish they would look more at us extensive nodes and at least tell us a better idea of the biology of our tumor...it may put us to ease a little or not?...I have questioned ILC prognosis but I do have to admit that looking at the oncotype scores when it is an ILC they seem to be lower...hope this is true ....from what I have read the grade ones within 1 to 3 nodes have a very good odds...so you are there and will not have a problem...in my view anyway....Judy