Topic: What's your ILC story?

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

Posted on: Jul 6, 2007 07:49AM - edited Dec 7, 2008 09:49AM by Lynn12

Posted on: Jul 6, 2007 07:49AM - edited Dec 7, 2008 09:49AM by Lynn12

Lynn12 wrote:

When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories.

I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past year. He checked for lumps but didn't find anything. Got my mammo in Oct. 06. They called me back for a 2nd because they noticed the right breast was smaller when comparing to my previous mammo in 2003. They still saw nothing but did an ultrasound where they did find enhancements. They did the core biopsy right then and 4 days later on 11/7/06, I was diagnosed with ILC. Surgeon sent me for a MRI which showed a small enhancement area in upper outer quadrant of right breast. Dr. wanted to do lumpectomy, I insisted on mastectomy.

Right breast mastectomy on 12/4/06. Diagnosed with stage IIB. 7.5cm multi-focal, ER+/PR+ her2-. the cancer was found in all four quandrants of my breast. They say it's rare for breast cancer to cause your breast to shrink. There was never a lump, but felt more like a thickening.

6 rounds of TC (taxotere,cytoxan) from Jan - May 07.
30 rads from Jun - Jul 07.
Started tamoxifen May 07
Prophylatic lb mastectomy with bilateral DIEP - Dec. 10, 2007

Switched to Arimidex - Sept. 08

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Oct 2, 2007 07:18PM - edited Oct 2, 2007 10:59PM by neeinil

Noticed a pulling in my right breast and a dimpleing when I raised my arm. Mammo on March 31 2007 showed a thickening. It was too dense for ultrasound to tell what it was. It's funny, I noticed quite a few coments about how there was a thickening instead of a lump. Diagnosed April 10 with ILC by needle biopsy.Breast MRI in April 24 - no involvement of left breast. Right mastectomy with reconstruction [latussimus dorsi with silicone implant] on May 17. Finished 1st roungd of chemo [Adrymicien + Cytoxin] 4X and am now on second round [Taxol] 12X.

[Tumor 3 cm Nodes negative ER+ PR+ HER-]

Dx 4/10/2007, ILC, 3cm, Stage II, 0/1 nodes, ER+/PR+, HER2- Surgery 5/17/2007 Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Chemotherapy 6/25/2007 AC + T (Taxol) Hormonal Therapy 1/15/2008 Aromasin (exemestane)
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Oct 30, 2007 06:13PM - edited Feb 28, 2008 08:25PM by trigeek


Started having annual mammos at age 40. The reports always showed cysts with extremely dense tissue - red flag.

Had a needle biopsy on Left breast in 2005- everything was cool.

Always insisted on ultrasound with the mammo every year to be extra cautious.

2007:Age 45 ( it seems like a majority of the ILC gals that have posted are in their 40's interesting )

Oh I am happy, maybe all the weight lifting I am doing is perking up my breasts. My right one looks really good. I am doing my self exams monthly it is just one perky boob, well the left one is also kind of perky although not as much..

01/07 annual ob-gyn exam, told him that sometimes there was a slight puckering on the right side, he examined and said everything seemed normal.

03/07 - there is a thickening on my right boob let me feel how my left one feels.. oh well the same thickening is also there (although a lot less ) so it must be the structure of my breasts.

07/07 - annual mammo with ultrasound showed the beast in right breast like a snowstorm on radar.

Was offered lumpectomy, opted for bilateral mastectomy with SNB.

Surgery result : multiple nodes of ILC in the right breast, left breast was 'collateral damage'

2/6 SNB positive for cancer. (.2 mm and 2 mms)

Stage 2b, grade 2.


Tumor: 2.5 cm.

Currently on AC then will go on to Taxol.

Do not know what I am supposed to do next, since one group wants me to have more lymph nodes removed, the other says no surgery just rads.

Looking for 2nd 3rd opinions.

Agghhh !

Aylin - totally frustrated

Bilateral MX with Recon, DD AC/Taxol Rads,Tamoxifen, oopherectomy, femara, zometa "Live Deliberately !" Surgery 9/1/2007 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/7/2007 AC + T (Taxol) Hormonal Therapy 1/4/2008 Femara (letrozole) Radiation Therapy 6/11/2008 Whole breast: Breast
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Nov 18, 2007 12:27PM - edited Dec 7, 2007 07:38PM by golfer779

I noticed a puckering of the skin as I raised my right arm.  Went for physical (had already done regular scheduled mamo in Jan 07) my doc sent me the next day for another mamo, u/s and biopsy that was Oct 3 07.  Not a good day!!!  Diagnosed with ILC 3-4 cm ER+/PR+ and HER2-.  Had a mast. Nov 8th.  Still waiting for final pathology report.  S/node biopsy was negative.  Pre onco. appt recommended CMF lite and tamoxifan there after.  Will know more this coming week. 

Got final path report, ugh 1 of 2 nodes positive, having full node dis. on 13 Nov, also they did not get clean margins at the chest wall, I guess radiation will be in my future too.  

Just found this website, its unbelievable!!!

Carol ... Currently taking Femara and had a DIEP Jan 2010 Dx 10/3/2007, ILC, 3cm, Stage IIB, Grade 1, 3/34 nodes, ER+/PR+, HER2-
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Nov 25, 2007 03:53PM NFlood wrote:

At age 30 I started with annual mammograms after a benign biopsy.  I have very dense breasts and was constantly having needle aspirations.  At age 49 in early 2007 I went to my ob/gyn for annual check up and problems with menstral bleeding and pain.  At that time I had a mammogram with US (as I have always had with my mammograms).  My GYN did not want to do a hysterectomy and suggested D&C, which I was not in favor of as the majority of the time doesn't work.  My GYN also said that she thought I should have an MRI of the breast as I had very dense and suspicious breasts.  I had the MRI and was advised to have a needle guided biopsy. We moved across the country so I followed up with a new OB/GYN who gave me a script for the biopsy.  I went for the biopsy and neither the rad tech or the radiologist could identify anything and said they would get my records from previous hospital and contact me.  In the meantime I had a TAH with removal of ovaries.  Went back to work and felt good.  After about 5 months I decided I should follow up again with the breast thing and went back to my original doctor from my home town.  She immediately sent me for another mammogram as she indicated she felt something.  I went the same day and the radiologist insisted a needle biopsy was necessary.  He said I could go back to my home and have it done, but I insisted it be done before I left as the radiologist never followed up with me after the last attempt.  That was October 8th 2007, I had a bilateral mastectomy with reconstruction and node biopsy on Oct 31st.  I did all of this with the doctors in my home town. 

The scary part is that the radiology department in my new state never contacted me.  When I inquired with them about the reports from my home state, they said they got them and that I was to receive a call to come in for a needle guided biopsy.  When I asked why I never received a call or letter, I was told it must have gotten overlooked.  All I can say is that I am so happy I had the instinct to check it out on my own.  My surgeon said that most likely the cancer grew as I started hormones after the hysterectomy.  She said if I would have waited until my next annual visit I would have a very different situation in dealing with my ILC.

Now I am struggling with hormone therapy after mastectomy.  I don't like the side effects and I thinking I do NOT want to take them at all.  Any suggestions?  I am just confused these days.

NFlood Dx 10/9/2007, LCIS, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 4, 2007 12:51PM carstell wrote:

  10/23/07 first mammo ever(turned 40).was told i needed to return due to abnormality. area showed up in left breast went straight to ultrasound and was told I was going to need a biopsy.

  11/9/07 biopsy was done. Got the call on 11/12. grade 1 1.8cm ilc. surgeon wanted a MRI because he was unable to feel the tumor. MRI showed another ares onder the left nipple.

  11/27 next ultrasound,11/30 next biopsy.12/3/07 next phone call from Dr,another grade 1 ILC 8mm.

  I have an appointment with my surgeon on 12/6 to discuss surgery options.i have no family history of bc and felt no lump.

  I thank God that whoever read my mammogram was paying attention!!!!

CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Dec 5, 2007 07:06AM - edited Dec 5, 2007 07:07AM by israel



Did you get the mri report????

My wife has ILC ,  40 YEARS OLD

She is after surgery Before the radiation she did mri'  (because it ILC) they found there unknown focus. She going to make biopsy guided MRI' -  they cant see it in US. ask your doctors about the mri.


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Dec 10, 2007 07:46PM Chgogirl wrote:

I faithfully went for a mammogram every year - never missed one.  I have very dense breast tissue and have always had lumpy breasts.  In April 2006, I had a physical.  My doctor did the breast exam and didn't like the fact that I had a thickening in the outer quadrant of my right breast.  As I had just injured myself by walking into a door jamb in the middle of the night, the doctor thought the thickening might be a hematoma and told me to come back in two weeks.  I did and the area was the same so he scheduled me for a breast biopsy.  It turns out I had a 10.2 cm tumor and my treatment was very aggressive based on the diagnosis.  I had everything - on May 30, 2006 I underwent a radical mastectomy and all lymph nodes were removed as cancer was in 16 of 30 nodes.  The cancer did not penetrate the chest wall so my stage was IIIA.  After 4 treatments of Adriamyacin/Cytoxan followed by weekly Taxol/Herceptin treatments for three months and a year of Herceptin with 33 treatments of radiation thrown in, I am done.  However, I want to know if anyone else has experienced a burning/itching sensation on their arms.  I have little bumps starting at the shoulders (both arms) and each of those bumps is like being stuck with a million pins.  The burning is intense.  I can physically see the skin turning red (similar to blushing) and sometimes the skin itches so much I feel like someone has put itching powder on my arms.  I have been to a dermatologist three times.  Her advice is "don't scratch".  This itching/burning started during chemo.  It has not subsided and no topical ointments work - whether over-the-counter or prescription.  Ice is the only thing that relieves it temporarily.

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Dec 11, 2007 11:36AM conniehar wrote:

Chgogirl - I also had a 10 cm ILC tumor that didn't show up on mamm.  I am also stage IIIa.  I was in an aggressive clinical trial and had chemo for 6 months - no herceptin though.  I am currently halfway through rads.  Glad to hear you are done, but sorry you are experiencing the burning.  You might want to post that question in several areas of this board and hopefully you might find someone in similar circumstances.  The "don't scratch" advice is classic.  I'm sure you wanted to just slap the Dr. that said that.

I'm just interpreting from your screenname, but are you from Chicago?  We have a great Illinois thread going on in the "Help Me Through Treatment" section.  If you are, come on over and join us.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Dec 11, 2007 11:56AM LauraGTO wrote:

ChgoGirl - I had alot of burning, scratchy pain from my Ax Node dissection. Due to the fact that you have external irritation, have you tried Hydrocortisone? The rash and redness seems strange though...I've never heard of that. I would keep going to different Drs until one of them comes up with a solution or a dx. Best wishes to've been through alot! Feel free to join our Illinois thread, as Connie had suggested. Hang in there.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jan 15, 2008 12:09AM Linda-L wrote:

Like the first posting here, my story starts with my husband asking, "What's this?"  It was a lump the size of a BB at the very top of my right armpit--almost my upper arm.  This was in May 2007. Went to internist, referred for mammogram/ultrasound.  Had had annual mamms faithfully for about 20 years (I'm almost 60).  Ultrasound showed small lumps in upper & lower armpit.  In the middle of all this, my mom (95) died and I had to spend 10 days dealing with that, clearing out her ap't and so on with my sisters. 

Then came home to meet with my surgeon (Dr. Gorey, what a great name for a surgeon!) for a biopsy.  She had already seen the films and knew what was up.  She said, this is highly suspicious and I see no need to put you through a biopsy. What are you doing tomorrow morning?  Uh--having surgery?  Yes.  She had already scheduled me in. 

Lumpectomy (June 15) showed 12 tumors in fatty tissue, 1 to 7 mm.  She took 21 lymph nodes, 4 were positive.  (Pretty much have to take lymph nodes when you have lumps under your arm.)  No clean margins (gulp).  ILC, stage IIB, ER+,PR+,HER-, so that was all good news.  I was scheduled for chemo but first had an MRI (radiologist told me to insist on one, but ins. co. approved it right away).  MRI showed a tumor in each breast, 1.5 and 2 cm.  These did not change my stage because they were small.  They were biopsied and were also ILC.  Neither one showed up on mammograms or ultrasound--tell your friends.  Also a lot of my friends had never heard to check underarms for lumps.  

July through Oct. had chemo: 4 AC, 4 T, dose-dense.  My oncologist, a great young doctor (you can tell she's young when I tell you her name is Tiffany) says ILC is mirror-image disease about 1/3 of the time.  She also told me that ILC is usually not seen with mammograms or ultrasound until it is 5 cm or larger (2 inches!).  So I was lucky to get the lumps in the armpit.  ILC is sneaky; it usually grows along the tissues in the breast and doesn't make a lump.

Dec. 4, bilateral mastectomy with tissue expanders.  Best news: path report showed that cancer was completely gone, even in the armpit that had no clean margins before!  Sentinel node biopsy on left side was negative. That was about a month and ten days ago.  I am off pain meds, starting to feel like I'm getting better, but the expanders are really uncomfortable and I'm reconsidering the whole reconstruction issue. 

One thing about surgery recovery--there were a couple of times in the first few weeks when I felt really good and went out and did too much, and then it took a week or 10 days to get back to feeling that good again.  Don't push it.  Rest.  Read good books and listen to soothing music and take your time.  Best wishes to all of you!

Dx 6/14/2007, ILC, 1cm, Stage IIB, Grade 2, 4/21 nodes, ER+/PR+, HER2-

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