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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Metastatic lobular carcinoma of breast

Topic: Metastatic lobular carcinoma of breast

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

Posted on: Apr 28, 2013 04:10AM

nkiranrao wrote:

My mother is 57 years old and has recently been diagnosed with 'Metastatic lobular carcinoma of breast'. This has a very atypical presentation and up to 3 months back she had no symptoms what so ever. Let me try to explain the recent course of events.

somewhere in mid/end of Dec 2012 she started to loose her appetite and also her weight, initially she liked it as she was slightly overweight (84Kg, 5ft 3 in) but then we noticed that she was really not eating anything and that lead to acidity and vomits. we took her for a checkup and they found some Minimal ascites and few enlarged Lymph nodes largest measuring 2.0X1.2cm in the abdomen. On a closer examination they found few more Lymph nodes on her under arms. An Biopsy conformed the "Metastatic adenocarcinoma" and later IHC also confirmed it as consistent from Primary from breast. An PET scan was done in the mean time to identify the origin and extent of this spread and it only showed spread to lymph nodes all over the body and no other organs were effected.

This I was told was a very atypical presentation for a Breast carcinoma and we were advised to do an second Biopsy to rule out Lymphoma which is what they suspected could be the reason for the enlarged lymph nodes all over the body and Biopsy of "right inguinal lymph node" though showed up as a "Non-Hodgkin lymphoma - high grade, features are suggestive of Diffuse large B cell lymphoma." in HISTOPATHOLOGY, but the IHC confirmed our worst nightmare "Metastatic lobular carcinoma of breast". its ER 90% and PR 30%

I have been trying to go through the internet to understand more about this, but there is nothing that talks of a spread like this or may be I don't understand the medical jargon. In the mean time our doc started her on FAC palliative chemo yesterday (6 cycles with 3 wks interval) to relieve of her weakness and symptoms and advised to continue on Femar 2.5mg after that. But he was not able to give us any information on how the prognosis are as its very unusual presentation.

I was wondering if someone on this forum has come across such a case and could help us better understand if the treatment plan and may be about the general prognosis we can expect.

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Apr 28, 2013 04:31AM Momine wrote:

I am sorry for what you and your mother are going through. The thing is that each person responds differently to treatment. That is why your mother's onc really can't responsibly tell you what will happen. If your mother has a good response to the chemo and femara, she might get to NED (no evidence of disease) and stay there for a long time.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Apr 28, 2013 11:08AM nkiranrao wrote:

Thanks Momine, I really hope for NED after the chemo cycles. its been a yoyo for last 2 month between hope and no hope.  

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Apr 28, 2013 11:48AM toomuch wrote:

nkiranrao - I'm sorry that your going through this with your mom. ILC can be sneaky and not show up on scans. Has your mom had a colonoscopy or upper GI sudy where the doctor looks and can do biopsies? ILC does infrequently metastisize to the GI tract. I'd be concerned about that with your moms history of weight loss and vomiting. If you post on a thread called Not stage 4 but have questions, you may get answers from more women with experience with this. The link is below:


I hope that your mom has good response to chemo.

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Apr 28, 2013 12:24PM - edited Apr 28, 2013 12:26PM by nkiranrao

toomuch- thanks, yes she had the first biopsy done via the endoscopy and they only found some Atypical cells but no malignancy, so they had repated the endoscopy/biopsy but didn't find anything unusual other than few Atypical cells. if it was spread there, wouldn't have PET scan picked it up? BTW we are told that its Stage 4 as its spread to many lymph nodes... so only palliative chemo would be given. 

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Apr 30, 2013 11:55AM nkiranrao wrote:

I posted her case on 'Ask an Expert' on the following forum: http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999816238

unfortunately looks like our time is very very limited Cry

Hoping she recovers from the current stage so that we can spend some quality time with her.

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Apr 30, 2013 12:28PM Lily55 wrote:

Hmmm does not sound too good for us ILC ers but remember there are always the positive side of the stats........

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane)
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Apr 30, 2013 05:52PM mary625 wrote:

While I appreciate the information delivered by JHU, and I've posted something on their website myself before, I was surprised to see such statements posted online. Hugs to you as that must have been very difficult to read! I would like to add that there are many trials for Stage IV patients. You may want to look into those. Your mother is still very young, and she could respond well to treatment. Please keep in mind that the oncologists treat lobular and ductal much the same, so you will probably not find much specifically for lobular, if anything. But you will find a lot of Stage IV trials where she could get standard of care treatment as well as additional treatments that they are testing. I don't know what area you live in, but if you feel comfortable posting, I'm sure there'll be some ideas of places to go if you want to look at a major cancer center. Lots of hugs and support to you and your mom!

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/25/2011 AC + T (Taxol) Surgery 2/5/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/11/2012 Femara (letrozole) Radiation Therapy 3/12/2012 Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 1, 2013 01:07AM nkiranrao wrote:

mary625-Thanks, unfortunately we are not in U.S. as a result will not be able to participate in these trails I think.

I can't understand even today as to how this could have spread so much without giving any signs of its presence, but then looks like ILC is a different animal in itself and as its only 10% of the total BC diagnosis and not much effort has gone in to how to control it once its in stage IV.

I was wondering if we have someone in this forum who has been diagnosed as a stage IV ILC and what kind of treatment plan they are on. Looks like FAC or other such chemo do not work against the ILC in this stage.    

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May 1, 2013 03:27AM Lily55 wrote:

ILC does not create lumps, its the lurking cancer hard to find til more advanced

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane)
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May 31, 2013 10:18PM MemaSue56 wrote:

nk - I was dx'd right outta the box with ILC STAGE IV, METS TO SPINE, RIBS, NODES.  I had mammo every year...religiously.  Sept 2010...then in late Jan 2011....felt a hardness (not lump) just hard area...like 1"x1/2" just to the right of my nipple on right breast.  I had implants back when I was very young (1978)...so all my breast tissue was on top of the implants.  Anyway...went to primary doc....he chocked it up to 'encapsulation' of the implant (very common), but never so close to the skin of my breast.  So off to Plastic surgeons.  By now, my right breast swollen, red, warm to touch.  One PS said 'encapsulation', other said he wasnt sure.  So in March I ask 2nd PS if he is comfortable with just replacing my implants...he said NO!  So he order Ultra Sound...inconclusive...so wanted MRI of breast.  Well now since I was 6 mos out from my last mammo...insurance wanted another mammo b4 approving MRI.  By now (April) my right breast was 2x size of left and red and nearly 'hot' to the touch.  Long and short...went in for mammo...Tech and Radiologist said 'HELL NO'.  On the table with more intense ultra sound, then one (non-compression) mammo pic...Radiologist told me...'I am sure you have ILC'.  That was April 20, 2011. My biopsy was next day...then in May I had my PET only to discover it had spread to my spine and ribs.  It was THAT FAST!!!

Good news....I started Taxotere/Carboplatin/Herceptin, (TCH)... (I was triple positive) on May 23, 2011.  I am not familiar with FAC that your mother is doing.  I responded well...my 9cm tumor is all but gone...still a little thickening of the breast skin...my axillary nodes shrunk to 'not operable' size.  I am still on Herceptin and Xgeva shots (for my bones mets) but last PET in April showed NED...Mammo/MRI early May this year...NED.  I am sooo grateful!!

They still want to take my breasts...Bi-lat mastectomy.  I WILL NOT let them do that as they cannot 'guarantee' that my down time for surgery will be given 'back to me' at the end.  In other words...because I am stage iv with mets....why put my body thru the 'risks' of surgery when they can't tell me it will give me another 3, 6, 12 months, 2 years??? they don't kno.  But I do kno what surgery does to the body....the lower immune system, the stress of even having surgery, and sooo much more.  It's an incredibly personal decision...I cannot walk in your moms shoes.  I don't remember if your mom is triple positive...and I am NOT an expert on the diff treatments out there.  But this site is absolutely powerful in research and finding answers to your questions/concerns. 

I will be 59yoa this Nov....I have a totally different 'outlook' on life now.  If I can be of any further assistance...please feel free to PM me.

Love, Prayers, Healing energy to everyone, always!!


'Princess Silver Thighs' says....Yesterday is History, Tomorrow a Mystery, Today is a GIFT! Dx 4/20/2011, ILC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 4/10/2014 Brain

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