Topic: Pleomorphic ILC

Gitane,

My mom was diagnosed Feb 2007 with stage 2b pleomorphic ILC.  She has finished initial treatments and is now on Femara and doing great.  I read info about pleomorphic ILC online that really scared me, but all the articles/studies were small and really old.  I've been told by an oncologist that pleomorphic is not an established independent poor prognostic indicator.  It seems difficult to find any recent info on pleomorphic... hopefully that means it truly isn't a concern with newer, improved treatment options?  Nash has really researched the pleomorphic issue and is a wealth of info.  I'd love to hear more survivor stories of pleomorphics as well. 

awb,

21 years. Wow! That is fantastic. Thanks for sharing.

Hi, girls. I will post info I've read on pleomorphic when I have a chance. Just wanted to let you know I saw the thread. Will get back to you all soon.

Gitane,

What are ITC's to nodes?

ITC's are individual tumor cells. This refers to individual tumor cells in the node or tiny clusters < .2mm that are under the requirement for a micrometastasis. At least I think that's what they are. For me they were found in 2 nodes and one micromet of about 1mm in one node. They were found with keratin staining.

Hi Gitane,

I'm one of the many Nancy's who seem to have lobular breast cancer.  I was diagnosed in May 2004 both pleomorphic and classical.  I was stage 2A because of size, no nodes involved.  Every doctor I had, including the 2nd opinion from Sloane kettering said that pleomorphic cells donot change the prognosis.  I'm almost 4 years out and so far so good.  Nancy

I'm going to post the links to some of the journal articles I have about pleomorphic ILC. A word of warning--they are overwhelmingly negative. The slant of the articles is opposite what pretty much all of us have been told about our pleomorphic ILC. I think we all have been told that the pleomorphism doesn't change the prognosis, and that what's important is what is important to any bc, namely tumor size, hormonal receptor status, HER2 status and lymph node status.

That being said, I think it is generally accepted that pleomorphic ILC is more aggressive than classical ILC. However, it is unclear whether all pleomorphic ILC cases are more aggressive, or only those cases that are HER2 positive.

And given what a crap shoot bc can be, the prognostic indicators are not always relevant. I know women who have classical ILC, grade 1, who also have mets. I know of women with negative nodes who have mets. I also know a woman who had IBC who only had a mastectomy, no chemo or rads, and is fine 13 years later. I have had more than one onc tell me, "Sometimes the women we think will do fine don't do well, and the ones we think will die soon, do great."

So I think what we can take away from the articles is that exactly what I and others have been told--that pleomorphic ILC is probably more aggressive than classical ILC in general, but no more aggressive than a typical high grade IDC (although I find that confusing, as my pleomorphic ILC was graded a 2).

Also, the mitotic score of the tumor is important (mine was a 1), because it is probably the best indicator of how fast the tumor grows. So even if one ends up with mets, they too will grow relatively slowly and can be controlled for quite some time.

Also, the difference in oncotype scores just off of this thread may illustrate how complex the whole situation is--Illinois Nancy's score was a 9, mine was an 18, both with pleomorphic ILC. So, everyone's personal genetic makeup comes into play as well.

Unfortunately, there just isn't that much clinical interest in pleomorphic ILC. MDAnderson is the only cancer center who pays much attention to it. And I know of a Stage IV pleomorphic gal who recently saw Dr. Christofanilli at MDA (who is probably the most expert ILC onc in the USA), and she said he didn't focus much on the pleomorphic subtype. On the other hand, she's stage IV, so maybe it's moot.

At any rate, here are the articles--like I said, don't let them scare you. Most of the studies are old and small. But for those of you who like to read what's in the literature on your disease, I wanted to make them available.

http://www.ncbi.nlm.nih.gov/sites/entrez?holding=npg&cmd=Retrieve&db=PubMed&list_uids=11117786&dopt=Abstract

(from 2000)

http://www.ncbi.nlm.nih.gov/sites/entrez?holding=npg&cmd=Retrieve&db=PubMed&list_uids=9758360&dopt=Abstract

(this is an old one from 1998)

http://www.ncbi.nlm.nih.gov/sites/entrez?holding=npg&cmd=Retrieve&db=PubMed&list_uids=1398644&dopt=Abstract

(also, old--1992)

http://www.ncbi.nlm.nih.gov/sites/entrez?holding=npg&cmd=Retrieve&db=PubMed&list_uids=1592388&dopt=Abstract

(1992)

 http://www.blackwell-synergy.com/links/doi/10.1046/j.1365-2559.2000.00810.x

(2000)

http://www.blackwell-synergy.com/links/doi/10.1046/j.1365-2559.2001.01252.x

(2001)

http://www.breakthrough.org.uk/researchcentre/research_groups/molecular_pathology/projects/classic_and.html

http://www.turkjcancer.org/text.php3?id=45

(2001)

http://www.ihop-net.org/UniPub/iHOP/pm/7296306.html?pmid=1398644

(1992--this might be duplicate info)

 Q:  

I need information on PLEOMORPHIC lobular cancer. I have been told by my oncologist that this is "more aggressive" than classic lobular. All the information about cancer that I have researched says the same in so many words with no specifics. Prognostic tables primarily are basing projections on ductal and classic lobular patients since PLEOMORPHIC lobular is so much more rare. I need information on my type of cancer beyond the brief two or three sentences in most books and articles. Where can I get it?

A:  

PLEOMORPHIC is a term to describe cell shape and not a descriptor for lobular cancer per se. i think you are seeking information on something that doesn't exist.

My mom is 61 and has stage 2B Invasive Lobular Carcinoma in the right breast with a 3cm tumor and with 3 (of 33) lymph nodes positive for cancer. She is ER +90 and PR +80 and Her2 +1 (considered her2 negative). The nuclear grade is 3 and it says her ILC is PLEOMORPHIC type. Her overall Nottingham Score is 7, grade 2. I've found several articles, mostly over 10 years old, that describe the outcome of PLEOMORPHIC ILC as very bad with high mortality in the groups studied in the article. One even mentioned average death after diagnosis was only 2.1 years. However, my husband works at a hospital and was told by an oncologist that PLEOMORPHIC ILC is not an established poor prognostic indicator and that Mom's 10 yr risk of recurrence after surgery, chemo, and hormone therapy is 25-30% chance. So, I'm confused because the articles I've found seem so much more dismal than what my husband was told. Is the oncologist correct and there have just been great improvements in treating PLEOMORPHIC ILC in the past 10+ years, or is Mom's situation really bad? We live several hours from her, so I haven't been able to talk to her oncologist and don't want to scare Mom with the articles I've found. But, I'm scared and confused myself after what I've read.

A:  

her having PLEOMORPHIC findings are not an issue. having 3 positive nodes are. the good news is that she has a well behaved breast cancer based on the ER/PR and Her2neu receptors. risk of recurrence is greatest during the first 2 years after treatment is completed. hopefully she will be doing surgery, chemo, radiation and hormonal therapy.

Q:  

Hi: I have read studies that say a PLEOMORPHIC lobular carcinoma has a worse prognosis than ductal. If a PLEOMORPHIC lobular was invasive, and her/2 negative and ER positive, would that necessarily be the case? Also one node was involved. Thank you.

A:  

we focus more on the prognostic factors and yours are very favorable-- hormone receptor positive and her2neu negative.

Gitane,

I'm like you and feel the need to find the info.  The 2nd question listed from 'Ask the Expert' was mine.  It seems there are just a few of us seeking the little bit of info that does exist out there and that we keep meeting on these websites.  :) 

I, in case y'all didn't notice, am an info junkie. It gives me a sense of control. And over the years, I've found that the docs don't give you all the info you need, nor do they necessarily pay attention to what could possibly be important details of one's particular case. No one thinks as hard about your situation as yourself and/or your family members.

I'm only 39, I have a 6 year old and a 9 year old, my mother just died of bc eleven days ago, and I've lost my dad, my grandfather and my father-in-law to cancer as well. So dying from the disease is heavy on my mind. I would like to live long enough to see my children graduate from high school.  Perhaps it's a non-issue and I'll live to 100. Who knows. But I like to be realistic and pragmatic, and also like to take a very clinical approach to educating myself about my disease, especially when the docs really don't know much about it themselves.

And as much as I like Lillie and immensely respect the work that she does, the answer she gave to Gitane's question above was contrary to what's in the literature.

Thank you, Gitane.

Thanks for your post, Mary Jane. And I love your posting name, BTW! It's great to hear how well you're doing.

Hello,have only just joined so hope I do this right.I was diagnosed with pleomorphic infiltrating lobular cancer,may 06, aged 44 am currently N.E.D.and am doing just fine,so I hope this encourages others ,I was grade 3,er+ and pr+ her2+, node negative,(never did get to know stage,must ask oncologist at next visit)great to know am not alone, as no one I know has ever heard of this type ,good luck to you all,and best wishes to everyone,take care,onwards and upwards,Pepper .

Pepper,
There are so few of us pleomorphic ILC's, it's always wonderful to know one who is doing well. Thank you for sharing with us.

Hi Ann,
We are elite indeed. I read your post with maximum interest; our cancers seem so much alike, except I am PR negative. You are right, worrying doesn't help. I've stopped badgering my caregivers for stats they just can't give me and are meaningless anyway. I was diagnosed 3 years ago. I'm on Femara, dealing with all the pain in joints and muscles; it's a constant reminder. Each day I breathe in deeply and appreciate the fact that I am alive. I can do that now. I've been slow in recovering emotionally and physically.

Each time someone posts here on the pleomorphic ILC thread it's like I've found a cyber sister. I will be thinking of you all and checking back. I hope any survivors out there will post and give us some inspiration and hope.

Thanks for posting, Ann. I hope you'll come back again and again.

Gitane