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Invasive Lobular Carcinoma

Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

I am fairly new to this site, I was Dx with ILC 2 weeks ago my surgeon said he was not sure on size because the mammo showed 3 1/2 centimeters and the U/S showed 2 centimeters so he figured about stage 1 or 2. We are waiting on the final path from the Bx but it did say low grade and slow growing. My surgeon also said that I am a moving target for the cancer to show up in the other breast and I have been doing my own research and I have decided on B/L mastectomy with reconstruction. I am very scared and some day's I can hardly think, I see the plastic surgeon this Friday and I should no more then and hoping for more answeres on the pending pathology. If anyone else with this Dx or experience can share with me I really would appreciate it.

Thanks, Shary

Posts: 382
Joined: Nov 2012

Hi Shary,

I am sorry you are here, but welcome.  I too was diagnosed with ILC and decided to do a B/L mastectomy.  I did not hesitate to do the B/L because ILC is hard to detect.  I was being screened with yearly MRI's along with mammo's and sono's for years because of LCIS and it wasn't detected until it was almost 2cm (just shy of Stage 2).  When I did have the other breast removed it was filled with LCIS so I was glad they took them both off.  I had immediate reconstruction with expanders and I did well with both.  The drains were annoying and uncomfortable for about a week, but I was very lucky to not have any pain.  I am happy with the results, but I was more happy to have the cancer out.  My tumor was also slow growing.  I had the oncotype DX test done and because it came out low I decided not to do chemo.  After everything, the most surprising thing was how emotionally draining it all is.  It really takes a lot of time to take it all in.  If you feel overwhelmed, do not delay talking to your doctor about how you are feeling.  They can help you. Do not suffer needlessly.  Everyone handles stress differently, but don't try being a super woman.  Being diagnosed with breast cancer is scary, especially at the beginning when you are waiting for treatment.  This site will be a wonderful help to you because the pink sisters and brothers here understand first hand what you are going through.  

We are here for you and pulling for you.  If you have any questions just ask away.  



DianeBC's picture
Posts: 3886
Joined: Jun 2009

Hi Shary and welcome to the site that no one wants to join.  I didn't have this type of bc and had a lumpectomy with radiation. 

Wishing you good luck!

Hugs, Diane

Clementine_P's picture
Posts: 516
Joined: Feb 2011

Hi Shary,

I was diagnosed with ILC in one breast and opted for a bilateral mastectomy with placement of expanders as well.  The waiting for your pathology reports and appointments with doctors at the beginning can be really stressful and scary.  I'm sorry you are going through this.  I was stage IIA.  I found the surgery to be pretty easy physically.  I spent two nights in the hospital but was told I could leave after one.  I had a slight spread to my nodes so I had chemo.  After chemo, I had my expanders swapped out for implants.  That surgery was a piece of cake.  I was home from the hospital in time for lunch. 

Take Care,


Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

Thank you ladies for your input I had a F/U this morning with my PCP and he was concerned that the B/L mastectomy was pretty radical. I already have a consult with the PS fri that I would like to keep  as it is a 3 hour drive. I also called surgeons office today to go ahead and schedule an MRI to be done on the 27th, so we will see how the other breast looks. I am hoping that having all the information I can will help me to make the best choice for me. still no final report on Bx as of today.

Thank's again, Shary

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I am hoping that the MRI shows no sign of bc in your other breast Shary.  It is a big decision for you and I wish you the best.  I am thankful that I could have a lumpectomy and save my breast.  But, sometimes there is no choice.

Good luck and keep us updated,


hope67's picture
Posts: 181
Joined: Apr 2013

First, let me say that I am sorry that you have to be here. I know how overwhelming all this is. I was diagnosed 3 months ago and there were times (and still are sometimes) when I could hardly breathe.

I was diagnosed with Invasive Ductal Carcinoma and Invasive Lobular Carcinoma. My mammogram showed nothing because the tissue was too dense. US showed only IDC. I had a mastectomy with immediate reconstrucion with expander. Path report showed also ILC which was a total surprise, it was multifocal and spread to one node. I had no chemo and started Tamoxifen 3 days ago.

I have read that ILC is bilateral in 20-30%, so I made a decision for a second mastectomy, mainly because ILC so so hard to detect. It was a hard decision, but it seems the only reasonably for me. I am still waiting for the surgery. And I don't say that you should do the same, I am just saying that you need to explore all the options and choose the one that seems the best for you.

Good luck and keep us posted, Carmen

Angie2U's picture
Posts: 2992
Joined: Sep 2009

Hi Shary and I am sorry also that you find yourself here.  Wishing you good luck with your MRI.  Keep posting to update us.

Hugs, Angie

Posts: 94
Joined: May 2013

Shary, As you know I have ILC. I had 4 tumors in one breast, the largest was 2.2, all 4 measured 5cm. I was a stage llA with no lymph node involvement. I was er+, PR+ and HER2-. I do have to have 16 chemo treatments. Good luck and please keep us posted.

Posts: 28
Joined: Apr 2013

I also had ILC with 2 positive nodes on the left. Mammo on right read clear but I have a family history of bilateral BC so opted for BLM and was so glad I did.  Right was LCIS. Had AC and Taxol. AC was tough, Taxol caused neuoropathy but new med should hopefully prevent it-Metanx. I had Taxol over 12 weeks because of profound nausea but felt better each week. Rads were easy for me. More tired after done but better after about 2 weeks. Did not reconstruct. Doing well, 2years, 4 months out from treatment. Thoughts and prayers, for you. After you research and get MD advice, go with your gut. I believe in women's intuition. jojo2

Posts: 579
Joined: Dec 2010

Yes same cancer as you.  Mamos don't pick this type up and didnt.  Lump in one side so mastectomy done as there was a question mark on another area in same breast.


Turned out second area not cancerous.  So was pure luck that ON CLEAR SIDE plastic surgeon reduced this to match breast cancer side and a large amount of pre pre cancer cells were found in material taken away which they always test just in case.  Next month second mastectomy.  This one often travels to other side and it had done so.  Lump was just in side recommended size for chemo so had four sessions.  


I am very pleased I have had bilateral.



Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

Thank you all for your support, it really means a lot to me, after meeting with my PS and really liking him I made my final decision for BLM with reconstruction. I do not want to wait around to see if it shows up on the other side 20% chance or so and I just don't like those odds. No surgery date yet, still pending. I did get a nice call from the radiologist while I was out of town and he said prognosticaction report shows Grade 1 Er+ PR+ Her2- with no over expression.will keep everyone posted

Posts: 94
Joined: May 2013

Good for you! I think you will be happy doing this. I wish you the very best and will keep up with you :)

Candi Cane
Posts: 161
Joined: May 2013

I am glad you made your decision.  Good luck with your surgery!

Cheryl S
Posts: 82
Joined: Jun 2013

Yes, good luck with your surgery Shary.

Posts: 125
Joined: May 2015

Hi everyone who wrote in 2013. How is everyone doing in their BC journey? I was surprised to read these posts from 4 years ago and not read any updates! Can some of you post a little info about your progress? I too have ILBC and would like to read how others are dealing with it.

Looking forward to some current 2017 updates from those who wrote in 2013. Thanks!  Kats2

Posts: 1
Joined: Apr 2017

I realize this is rather an old subject, but it was the only one I found that matched exactly.  Just found out about my cancer.  The email my primary doctor sent me (BTW, I am a VA patient, if that makes any difference) reads as follows:

Breast, left 2 o'clock, biopsy 
              GRADE 2
Here is the recommendation by the Hem/Onc (cancer specialist):
ADDED COMMENT           04/04/17 15:47       
Discussed case with Dr. B---- and given the size of the tumor (ER/PR+), would opt for surgery first before hemonc consult for systemic therapy. 
Please reconsult after surgery.

I've googled and found some information, but would be interested in more -- I assume a lumpectomy will be discussed, but I don't know if anything else will be contemplated.  The appointment with the surgeons is tomorrow.

I'm a 66 female, in generally good health otherwise.  No history of breast cancer in my family, so this has thrown me for a loop. 

Still working, have Medicare, but as I said this will be done through the VA. 

I do live alone, and have no idea of what care of after-care is indicated.  That frightens me more then it should, probably. 

Any information/comments would be appreciated.

Posts: 199
Joined: Mar 2017

sorry to hear your news but be glad it was found...    this is my story  found out I had cancer just a couple months ago! It was like running into a BRICK WALL..on day I going along and then all of a sudden ..life changed!!! it took me a couple of days to myself to wrap my head around it.. i found out Jan 17, 2017 after imaging and a Biopsy that  I requested because of a mass that the mammography did not seem to mention. I have always had dense breast tissue but the one in my left breast seemed different especially since the outside shape of the breast started looking different than the right breast! It was there 6 months ago during my last mamo but doctors say mamo does not pick up everything especially "Invasive Lobular carcinoma  good receptors postive (it appears as a mass and branches out instead of a lump)

so in january my process started completed MRI  Feb completed CT chest scan , pelv scan and bone body scan prior to any surgery. All showed no signs of cancer in those areas ..Thank GOD.

a few weeks ago I had my left breast total mastectomy and started plastic surgery steps at same time Mentor brest tissue Expander. the pathology report showed majority of the lymth nodes had cancer that were removed during surgery.

currently I am seeing plastic surgeon and started brest tissue expander to start eppanding my breast tissue to prepare for the implant later.

working with medical oncology to start best Anti horomone bills (taking letrozle (femara)

and and have appoint to discuss and schedule radiation treatment. (will start in about a week)  not sure how VA works but make sure you ASK A LOT OF QUESTIONS AND REMAIN POSITIVE... BLESSINGS TO YOU!    BEEPOSITIVE  Smile



Posts: 125
Joined: May 2015


As a person who also has ILBC, I'd like to make a suggestion before you have that lumpectomy. Tell the surgeon that you want a CT scan AND bone scan to ascertain the status of your WHOLE body. Lobular BC is the "sneaky" BC as told to me by my surgeon. I had a teeny tiny tumor in my left breast. I had a lumpectomy and sentinel node biopsy to see if the cancer had spread to any sentinel nodes. The surgeon removed 7 nodes and 1 was positive for ILBC!  No scans were done on me. I had radiation and was put on Arimidex which is an antihormone drug as I too was Est+. I was also Grade 2. The Oncotype test was attempted on my teeny tumor, but because it was so small, it could not be analyzed in order to indicate whether I should have chemo or not. It was decided that I  NOT have any chemo. ( I should've gotten a second opinion at that point, but didn't.)

1  1/2 yrs later I had extensive metastisis  to my bones! I am now being treated for Stage 4 BC. My Oncologist and I both believe that I had metastisis BEFORE any surgery was done. He believes that I was never in remission, that the cancer had already started spreading at a slow pace, before it was even found,  but as the saying goes, "The horse had left the barn." 

This is very important to find out, especially since you have Lobular BC. Talk to your doctor about this. At least get a CT or bone scan. Insist on it! If the scans come out clear, then you'll  feel more reassured that nothing has spread. I'm speaking from experience.

Let us know how you make out.  Wishing you well.     Kats2



katfur111's picture
Posts: 8
Joined: Mar 2017

sorry for all your going throgh, i was DX Aug.2015 with stage 4 ILC that mets to the omentum and lymph nodes and poss. bone mets. i too cant seem to breath most days, just went for a 2nd opinion in chicago cancer treatment center of america and they are great. im on Ibrance daily 21 days on and 7 days off and get foslodex and lubron and xgeva injections monthly. i still work full time 12hr. shifts at night as a nurse. if my marker doesnt change by june 1 st week they want to do surgery and remove my omentum and both breast and im am so scared. 1st ill be off work and no savings of coarse and no long or short term disability (of coarse) so not sure wht to do about that yet. i cry daily and can hardly function in life d/t the fear of the unknown and wht i see in my patients i care for now (patitive and hospurus) so see wht i have to look forward to. they say 5-7 yrs but have had some PT go 13-15 yrs. and im in good health otherwise, i guess. i am blessed not to have the really bad side effects i see others get with these meds, just very fatigued and nauseated all the timebut Zofran is a gift from God. praying for you, and hope you have good family and friends to help you get through this. but you will be ok, at least it was caught early. good luck to you and if you have any question i can help with just let me know.. kathy

Posts: 125
Joined: May 2015

Hi katfur111,

I too have ILBC diagnosed Oct. 2014 with mets to my bones. I had already had a lumpectomy and radiation to the left breast in 2012-2013. At NO time was surgery suggested for  bilateral mastectomies as the cancer had already left its original site. Who is making this decision concerning your case? What is the logic in removing your breasts at this point? 

I can understand, somewhat, removing the omentum, but isn't the Ibrance and Faslodex doing the job of killing the cancer cells that are there and perhaps in other areas?

Have you had a bone scan to check the condition of your bones? Also have you had other scans such as a CT scan? Important surgical decisions should not be made strictly by tumor markers. This has been told to me by THREE Oncologists. I would make darn sure that there is an important reason to start removing my body parts. Is there anything to be gained by doing this?

My Oncologists have even told me that I don't need any further mammograms since I'm on treatments to kill the cancer cells. I  don't understand the rational for additional surgery. If you know the reason, please enlighten me.

I know what you mean by facing the unknown. It's scary and I've lost a lot of time and sleep  dwelling on it. Not good. So try to divert your attention to something else.

After reading the many posts here and on other sites, I've come to see that we Stage 4 women have a "chronic' condition. We need to be watched carefully, but there are countless numbers of women who are living with Stage 4 for many many years, even over 20 years!

With new medicines coming out all the time, there's room to be optimistic. We can be managed much like a diabetic is.

So, please be strong. Stay positive. Pray. Have others pray for you. I find this reassuring and hopeful. I also attend Healing Services at my church and other churches. Believing that there's a Higher Power, God, looking after us, is important. Just remember "With God ALL things are possible." 

I'm doing my best not to dwell on this BC. Worry is useless. I'm just starting to let go of this and start living more. I wish you the same. Keep us posted!      Kats2


Posts: 199
Joined: Mar 2017

God Bless..Prayers going up and up for All of us!!!

beepositive!Smile Im busy Living!! please join in!!!

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