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Topic: ILC vs other breast cancers

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 21, 2011 01:54AM

sgreenarch wrote:

Hi, Ladies. As always, thanks for your help and wisdom.

One thing I can't get an easy answer to is the differences going forward, (once it's been diagnosed) between ILC and say, IDC or other bcs. I'm nervous about hearsay, but does anyone know of any reliable scientific sources that describe things that we ILC women need to be specifically aware of?

Sending best wishes and thanks,

Shari

Dx 7/20/2010, ILC, 2cm, Stage IB, 0/3 nodes, ER+/PR+, HER2-
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May 1, 2011 04:16PM Seabee wrote:

Shari--One  has to be careful of assuming that all ILC is alike. There is research suggesting that classic ILC tends to be more slow  growing and less likely to respond to anthracycline chemo than IDC, which is part of the reason, along with my Oncotype DX score, why I decided to pass on chemo. If you are ER or PR plus, Tamox or the A/I inhibitors, depending on whether you are pre or post menopausal, tend to be more effective. Howerer, some ILC are more aggressive and do respond to chemo.

There is a new blood test being tested at M.D. Anderson which can indicate immediately whether or not there is a single cancer sell circulating in the bloodstream. This should be helpful in deciding quickly whether or not a given systemic treatment is working.

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 1, 2011 04:29PM , edited May 1, 2011 04:50PM by nurse-ann

I will try to copy one of my recent posts from another thread that sums up my experience.  I was interested in Seabee's post.  I have a more aggressive form than my friend.  She has had ILC for 17 years and has until now relied on radiation and AI's.  Keep in mind that my friend and I are Stage 4. If I am able to copy my post, it tells you a little bit about the kinds of diagnostic tools I've needed to rely on since Pet Scans have not worked for me.

I'm also interested in Seebee's comment about AC chemo.  I was treated Stage III with AC - maybe that's why I'm stage 4 now!

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 1, 2011 04:36PM , edited May 1, 2011 04:39PM by nurse-ann

I'm not suggesting that my ILC behaves like all others but I will tell you what I've experienced for 4 1/2 years.  I have mets in the abdomen (peritoneum) and mets in the lungs (the avoli that transfer oxygen to the blood).  I'm on oxygen 24/7.  I have never had a Pet Scan show cancer in my body and I've had at least 10.  My first Onc nearly killed me waiting for these Pet Scans to show anything.  The second and third Onc knew enough not to use them on me.

My family doctor diagnosed my BC and 2 years later the mets when the Onc couldn't handle it.  She used chest and abdo Cat Scans - these spotted all the Ascites in the abdo.  Although my TM's are probably the highest in the country (in the thousands) I have no measurable disease in my body.  A real bummer when it comes to getting into Clinical Trials.  The Onc monitors me with Cat Scans, Bone Scans, and TM tests. 

Another thing to watch is that Lobular can metastasize differently.  With ductal they are looking for Lung, Liver, Brain, etc.  Mets to the peritoneum are somewhat common with Lobular as are Mets to the central nervous system. So are these Avoli problems with the lungs.

I'm not trying to scare the crap out of anyone - just saying that Lobular patients need to be with someone that treats a lot of Lobular. That means either a Breast Cancer Onc or a General Onc that see's tons of BC patients since only 17% of what he/she see's will be Lobular. Some of these doctors go months or years without a Lobular patient. 

Again, this is not stated to create fear.  If I had 2 things I could do over again, I would have gone to a Breast only Onc at the outset and I'd have gone to a major center like MD Anderson for a second opinion.  I corrected one of these mistakes in January and will correct the 2nd by going to MD Anderson in the next month or so.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 1, 2011 07:55PM GabbyCal wrote:

I was just diagnosed this past December, so am just at the beginning of educating myself about everything. Since ILC represents such a small % of total breast cancers, it seems that most of the research has been done on IDC and then it's just assumed that ILC will respond in the same way. 

I had recently read that chemo provides less benefit for Stage I & II ILC than it does for Stage III ILC or any stage IDC.

nurse-ann - I'm so sorry to hear about your situation. Thank you for sharing the good advice you've learned from your own experience. 

Being so new, that's all I have to add to this discussion, but wanted to make a post to encourage anyone else who has information to contribute to this thread.

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 2, 2011 09:52AM nurse-ann wrote:

Good idea! When I originally got the stage 4 diagnosis, it was members from this site that clued me in on the Pet Scan issue and the peritoneum issue.  Just like Seebee's comment about AC - that could save lives!

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 2, 2011 10:03AM mtks wrote:

Nurse-ann- Thank-you for sharing your story. It is stories like yours that educate us and help prepare us when we go for our appts. It's too bad we have to bring things up that make the Dr's look twice at our charts!

It makes me think what else should I know, so I can help myself thru this journey.

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 3, 2011 05:59PM foobs wrote:

Nurse Ann  Thanks for sharing your knowledge.  Do you know the best way to check for mets to peritoneum?  thanks

ILC STAGE IIIa-- DX 3/9/09 ER+PR+ Her2- Grade I 8/12 LN -- Chemo, Rads Avastin for 1 yr.-- 9/10 Aromasin-- 10/10 BMX & DIEP
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May 3, 2011 10:50PM nurse-ann wrote:

foobs:

My Onc's used Chest and Abdo Cat Scans.  What they are really watching out for in these scans is fluid (ascites).  This fluid build up can occur when the peritoneum is irritated by the cancer.  When my family doctor finally ran these tests, I actually thought that I had ovarian cancer since I had all the symptoms.  If you start to really have digestive problems or other symptoms of ovarian cancer, watch out for the peritoneum.

Just an aside, while I was hospitalized for the peritoneum issue, a gyn/surgeon performed an exploratory surgery on my abdomen.  Two interesting things came out of this.  He took enough samples to eliminate the ovarian cancer issue and the pathology report tied it to the original BC.  Also, it explained why the AI's stopped working after a couple years.  I went from highly estrogen and progesterone positive to progesterone negative and barely estrogen positive. Almost like being triple negative.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 4, 2011 08:05PM Seabee wrote:

nurse-ann and Gabby,

Thanks for your input. I have been alarmed since I started researching BC in general and ILC in particular by the tendency of doctors to treat all cancers alike.  When I had my first appointment with an oncologist, he immediately proposed a regimen of AC + T, which was widely practiced at the time and is still favored by many oncs. By that time I had read enough to be aware of the possible cardiac damage associated with anthracyclines, and since I had a family history of cardiovascular disease on my father's side, I was not interested in pressing my luck, especially since some studies indicated that the response rate of ILC to anthracyclines was low. I requested another oncologist, and also the Oncotype DX test, which had recently been made available to postmenopausal women with 1-3 positive nodes. My score indicated that I would derive zero benefit from chemo, so I went the radiation plus A/I route, which so far has worked out reasonsably well.

The best thing you can do is get informed,and find an onc who realizes that s/he is treating an individual rather than just another BC patient. You can find some pertinent studies just by entering "invasive lobular carcinoma" in your browser.

 I didn't realize that ILC could affect the nervous system. Mine's bad enough already.  What should one look for?

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 4, 2011 10:19PM nurse-ann wrote:

Seabee:

There's a woman on one of the ILC threads that has mets on the membrane that covers the spinal cord.  I will try to find this info and report back or PM you tomorrow.  When she posted, I did general research on the Internet - I think that she provided the link, come to think about it.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 5, 2011 12:35AM GabbyCal wrote:

On this topic of ILC being different, someone on the Stage I and II thread put out a call asking if others had an "intermediate Oncotype DX" score. A disproportionately large number of the respondents had ILC. I was told that the participants in the test on which their scoring/recurrence predictions are based all had IDC. Since this test is looking at very specific behaviors of specific genes, perhaps those genes act differently when cancer is ILC vs IDC.

Do any of you know if any research is done specifically on ILC? Something tells me it would be a logistical challenge to find enough cases to study. 

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 5, 2011 12:42AM nurse-ann wrote:

GabbyCal:

I will see the Breast Onc/Researcher in two weeks and ask the question of her.  I will also ask again when I go to MD Anderson in a month or so. I would think that between all the breast Onc's at the University, they should have many ILC patients between them.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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May 5, 2011 01:35AM hlya wrote:

Hi, Seabee,

May I know what the name of the new blood test at MD Anderson is?  

Also what was your Oncotype score?

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May 5, 2011 12:18PM GabbyCal wrote:

Nurse-ann - Many thanks for taking this question to some of the people are are at the center of this research. I'll be interested to hear their viewpoints.

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 5, 2011 01:27PM , edited May 5, 2011 01:27PM by mtks

Thank-you for posting ladies. All the more info I can learn about ILC, the better I will be my own advocate! I may not post alot but I do read everyday here. I am so glad for this place of support!!!!

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 9, 2011 09:39PM , edited May 9, 2011 09:41PM by Seabee

hiya--I don't think the test has a name yet, but here's a link to an early report on it:

http://www.msnbc.msn.com/id/40881967/ns/health-cancer/

My Oncotype score was16.

Speaking of M.D. Anderson, a Dr. there nmed Massimo Cristofanilli was one of the first to discover that lobular doesn't respond as well as ductal to chemotherapy,and yet the survival and recurrence rates were the same. You can find a report at

http://www.news-medical.net/news/2005/01/03/7087.aspx

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 10, 2011 12:10AM GabbyCal wrote:

Seabee - thank you for sharing the links. Very interesting information that was news to me (and I feel like I've "read it all" by now).
Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 10, 2011 12:26AM sgreenarch wrote:

Seabee, thanks for these links. When my onc said no chemo for me (oncotype 17) i thought it was because it just wasnt as effective on ILC, which seemed a bit depressing at the time. Not that i wanted chemo, but did want to know i did everything possible. From this link it seems that we can do well without chemo in some cases and thats not depressing, its lucky. My BS has muttered all along that ILC has an overall good prognosis, is slower growing. I try to think positive and remember this.
Thanks, shari

Dx 7/20/2010, ILC, 2cm, Stage IB, 0/3 nodes, ER+/PR+, HER2-
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May 10, 2011 01:11AM pickle wrote:

Interesting topic. I was dx stage II, Grade 3 multicentric BC. Two different quadrants of the same breast with one being IDC 2.8 cm and the other ILC 1.8 cm. I am Er /pr + however in hindsight, I am not sure they tested the hormonal status of both. I had mx followed by 4xAC. No rads. I am currentlt on Tamox.I didn't have oncotype done as it is not common in Canada. I often wonder if I had all the right treatment given my two types of BC. Is there different prognostic values to each of these types? Does multicentric make a difference in outcome with a mix of ILC/IDC.
Thanks ladies
Beth

Dx
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May 11, 2011 04:24PM Frapp wrote:

This is a very informative tthread.  Thank you for posting. 

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2- Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2- Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2- Surgery 11/2/2012 Mastectomy: Left, Right Targeted Therapy 12/20/2012 Afinitor (everolimus)
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May 12, 2011 08:00PM Seabee wrote:

pickle141--I don't think there's a categorical difference between IDC and ILC as far as prognosis is concerned. Multicentric tumors, mixed type or not, tend to be harder to operate on and are less likely to be treated with lumpectomy, although that also depends on size and location 

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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May 13, 2011 02:51PM Luan wrote:

Beth, hello from Mtl :)

My pathology report states IDC with ILC features.  Don't know what this means.  When asked, all my BS said was that ILC is much harder to diagnose.  Ok......Have got to research this on top of everything else Frown

I also had two tumors in same breast, one smaller than the other.  I had lumpectomy, TAC x 6, radio 16 + 4 and Tamox.

I don't know either if this protocol was addressing both IDC and ILC.  I sure hope so....

Don't knock at death's door. Ring the bell and run. He hates that. Dx 10/2009, IDC, 2cm, Stage IIIA, Grade 1, 2/5 nodes, ER+/PR+, HER2-
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May 15, 2011 04:41AM Joy_ wrote:

I've copied a few studies relating to ILC.  I'll just post one at a time or it'll be too much at once. 

This study is six years old but it has some nice words for those with early stage ILC.

http://www.news-medical.net/news/2005/01/03/7087.aspx 

....    Now, by combining these trials together, Cristofanilli and his research team had enough patients (122 with invasive lobular carcinoma and 912 with invasive ductal carcinoma) to better understand possible effects of treatments on response and outcome. 

.....   What they found was contrary to what they had anticipated. Women with invasive lobular carcinoma had a poorer response to primary chemotherapy yet better overall survival. Specifically, only 3 percent of lobular carcinoma patients had a pathological complete response, compared to 15 percent of ductal carcinoma patients; 41 percent of women with lobular cancers had residual lymph node disease compared to 26 percent of women with ductal disease.

Yet, five years after treatment, breast cancer had not come back in 80 percent of women with lobular carcinoma, compared with 66 percent of ductal carcinoma patients. And five-year survival in women with invasive lobular carcinoma was significantly higher - 91 percent - compared with 72 percent in women with invasive ductal carcinoma.

-Sheila- 

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 15, 2011 11:04AM Joy_ wrote:

Here's a page about lobular with several links to reports of recent studies.

http://foodforbreastcancer.com/articles/latest-research-concerning-lobular-breast-cancer-prognosis 

-Sheila- 

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 15, 2011 12:40PM GabbyCal wrote:

JoyLiesWithin -

Thank you for sharing the links. The older one helped me connect the dots on my MO's approach to my treatment. As to the second, that's the comprehensive overview regarding food that I've been looking for.

Thanks! 

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 15, 2011 01:51PM TinaT wrote:

Sheila:  It's confusing - your first excerpt says that lobular patients ultimately fare better than ductal.  Then your second link states:

While lobular breast cancer may have indolent, non-aggressive characteristics compared to ductal breast cancer and other types, both the primary tumor in the breast and distant metastases can be difficult to detect. As a result, long-term prognosis is not superior to that of ductal breast cancer.

I guess all we can do is take good care of ourselves and hope for the best!

Additional areas of lobular neoplasia and multiple ADH throughout left breast found at mastectomy. Oncotype DX = 18 (Opted out of chemo) Dx 12/8/2010, ILC, <1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 12/18/2010, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+ Surgery 2/16/2011 Mastectomy: Left, Right; Lymph node removal: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/15/2011 Arimidex (anastrozole) Surgery 8/24/2011 Reconstruction (left); Reconstruction (right) Surgery 4/8/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 5/13/2014 Reconstruction (right): Nipple reconstruction
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May 15, 2011 05:03PM GabbyCal wrote:

TinaT -

The way I interpret what they're saying is that it may seem that long-term prognosis for ILC would be better than IDC due to it's relatively non-aggressive characteristics. However, since ILC is difficult to detect, it's not usually found as early as IDC and this balances-out as far as long-term prognosis is concerned.

I know we're being closely monitored for a breast recurrence. Does anyone know how we should be monitored for distant metastases? 

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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May 15, 2011 11:47PM Joy_ wrote:

The old study used 1034 people and the recent one used over 14,000 so I'd go with the second result.

------------

Initial studies always start with live human BC cells and grow them in either in-vitro (test tube) or in-vivo (animals) then test potential treatments.  When reading accounts of these experiments they usually mention the cell line used, often MCF-7 which was originally taken from a woman with IDC BC (ductal).  There are many BC cell lines available including one called MDA-MB-134 which was used for lobular research.

In November 2008 a report of a new lobular cell line, IPH-926 states that the old MDA-MB-134 cell line was not in fact typical lobular and theirs is the real deal.  If this is true it really confounds all the old reserarch done on the old cell line.

http://onlinelibrary.wiley.com/doi/10.1002/path.2495/full 

The main problem with lobular is that it may not respond to Tamoxifen, but this may depend on whether the research was affected by the old cell line being atypical of lobular.  Both cell lines lack expression of E-cadherin which is important for Tamoxifen.  

I was in the process of reading this when I saw this thread and need to look more closely at the dates and details of the old research, but I'm struggling with the technical lingo.  A biochemist I am not!

Also I'd like to know if any stage IV ILC ladies have achieved remission or not from tamoxifen alone as that's more important than all the cell research. 

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 16, 2011 12:35AM Joy_ wrote:

Gabby, that's the big question. After my original CT scan showed only oedema in my breast where the biopsy showed a 4cm tumour, I asked what was the point of the CT scan if it didn't even show the primary tumour?  He sort of shrugged and said they'd be able to tell, then changed the subject.  I'm due to see him soon and this is on the top of my list of questions.  My CT also showed a cyst on my spleen and now I feel uncertain whether it should have been followed up.  Also I have fatty lumps over my lower ribs but they haven't grown so I hope they are just lipomas.

In Australia they don't have routine scans, at least not in my area, and I don't fancy another high dose of radiation for nothing.  We need a reliable, non-invasive blood test.  Some are being developed or tested but they take so long to come into general use,

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 24, 2011 05:10AM fightn4fam wrote:

JoyLiesWithin,

I just had surgery on May 13th, from a diagnosis on March 21st.  The original biopsy read IDC w/ Lobular Features.. it was ER/PR+ and Her2-, they said it reacted really well to treatment, I'm assuming that meant Tamoxifen since that is one of the treatments I'll be receiving.  However, the pathology of the tumor after surgery reads ILC, I'm assuming that is gonna still be the same treatment.  I'm a stage 2, but only because the size of the tumor is slightly larger than 2 cm.  So, I will find out more when I see my Onc, but my BS said the treatment was gonna be the same Undecided.     

Dx 3/21/2011, ILC, 2cm, Stage II, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/13/2011 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary, Left Chemotherapy 7/15/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/24/2011 Hormonal Therapy 12/14/2011

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