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 06:49AM - edited Dec 7, 2008 08:49AM by Lynn12

Posted on: Jul 6, 2007 06:49AM - edited Dec 7, 2008 08:49AM 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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Sep 27, 2008 09:09PM lolmarsha wrote:

 Thanks Lynn12, Didn't know about this site. I just notice a lump under my right arm pit. So I went to my Dr. & ask for a manogram. Then call for appiontment at the hostipal in Fl. Two month wait. The  friday  before the test, I got on the computer  typed in breast ridges. (just notice half my right breast had ridges). Sure enought it took me to the breast cancer site.So I had a idea that it was cancer. Monday had the test, the tech said they had to do the pictures over. Next time the door open the rad Dr. & tech were there. He just came out and said you have breast cancer. (No waitting there!!!!!!!!!!!!!!!!!) Also said he didn't see any reason to a bisopey. He called my family Dr. That night my Dr. called said I was to see the surgren on wed. Saw him did a pet scan Oh dx on April 16 2007, then on April 30 I had my mast. 22/37 nodes. No one has mention the other breast. Kind of funny April 30 1999 I had my kidney removed for cancer. 8 years apart. Do you think my next cancer will be removed in April 2015????? LOL 

always marsha Dx 4/16/2007, ILC, 5cm, Stage IV, 22/31 nodes, mets, ER+/PR+
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Sep 27, 2008 09:33PM wishiwere wrote:

Marsha?  What are you talking about when you mention 'ridges'?

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 27, 2008 10:09PM lolmarsha wrote:

They looked like small hives running in a row. They didn't itch!  Only had them on the bottom half of the breast.They felted like the little bumps on a navel orange. Hope this helped

always marsha Dx 4/16/2007, ILC, 5cm, Stage IV, 22/31 nodes, mets, ER+/PR+
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Sep 27, 2008 10:11PM lolmarsha wrote:

Oh!!!!!! they ran from nipple to bottom of B. Looked like rays running out .

always marsha Dx 4/16/2007, ILC, 5cm, Stage IV, 22/31 nodes, mets, ER+/PR+
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Sep 28, 2008 12:26AM sharneu1 wrote:

I found what I will call a thickening in my rt. breast while putting on lotion one day late Sept. 07.  My Dr. sent me for a "diagnostic mammogram".  After about 10 shots of the area the radiologist said he could not see anything abnormal on the films and sent me to have an ultrasound.  The US showed 2 spots so the radiologist ordered a biopsy.  A few agonizing days later I found out that I had ILC.  After a breast MRI (which found a 3rd spot) and consultations with a surgeon and an oncologist I decided to have a double mastectomy.  The surgeon pushed for a  lumpectomy but the onc said double mast. because lobular is "tricky" and has a tendancy to jump to the other breast.  That's all I needed to hear and I have had no regrets!  I ended up having 3 positve  sentinel nodes so a week later had an axillary node dissection where 5/5 nodes were negative. I started my 8 rounds of dose -dense chemo on New Years Eve 2007.  4--adriamycin/taxol and 4 cytoxin. After the 5th round I ended up in intesive care for 9 days with pneumonia.  After recovering from that my remaining 3 chemo txs. were a piece of cake. I finished chemo on April 25, 2008. I started taking tamoxifen in May 2008.

sharneu1 Dx 10/23/2007, ILC, 1cm, Stage IIB, Grade 2, 3/8 nodes, ER+/PR+, HER2-
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Nov 2, 2008 11:49AM - edited Nov 2, 2008 11:49AM by Texas357

I'm looking for some long-term hope here. My story:

July 2007: Near my 50th birthday, I had a hysterectomy due to benign tumor. A CA-125 test was negative.

September 2008: Two months past 51st birthday, had my annual mammogram. There was a thickening on my left side that I attributed to mastitis, which I've had before. It was sore and I've always heard BC tumors didn't hurt. So I wasn't worried even when I got a letter saying to repeat my mammogram. The letter said is was probably nothing.

Hurricane Ike hit and everyone lost power, including the hospitals. When I showed up for the repeat mammogram, the hospital was on generator power. They still felt something was suspicious but again I was told it was probably nothing. Since the hurricane was keeping people home, they could take me immediately for an UltraSound. The radiologist also suggested an immediate core needle biopsy -- he wasn't busy because of so few patients -- and he felt the area was scar tissue from dense breasts.

To everyone's surprise, the biopsy showed ILC and LCIS. The MRI showed additional microcaclifications in the same breast, but no nodal involvement. My surgery was last Tuesday, and I know that at least one node was positive. I should get the path results on the other nodes tomorrow.

Every time I am told not to worry, the results are worse than anticipated. Okay, so I'm only 51 and I have no intention of losing my life to this disease.  But I'm pretty scared right now.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Nov 2, 2008 02:50PM Little-G wrote:

Hi Texas,

I'm sorry about what you are having to go thru.  It does suck and it is scary.  I think everyone of us can agree to that.  When do you go back in again?  Do you have a game plan yet?  Just make sure you understand things as much as you can.  Go with what you feel in your heart.  I don't have any words of wisdom for you, but if you need to talk, I can do that.  There are many women on this board that have been thru alot and are still here!  That's encouraging to all of us! 


Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Nov 2, 2008 08:36PM saint wrote:

Big HUGS Tex!

This IS scary, but it is NOT a death sentence! We all know how you feel........

The best advice I can give:

Don't to let your mind take you to "those places" in the middle of the night! Our imaginations make things far worse than the reality ever does.

Let yourself feel what you feel-you will have good days & bad days-YOU ARE ALLOWED! You will find your way & lots here will help.

Take someone who will act as your adovate & ears at your app'ts--write down your questions & the answers. If you don't understand something they say-MAKE them explain until you do! They are being paid big bucks--so treat them as your employees--they are!

Do really nice things for yourself as often as you can & make a plan for some special reward when you are done facing something you'd rather avoid--we all need those little carrots out there to urge us on! 

Come here & get information, support, a laugh or a kick in the butt---whatever you need will be provided by your bc sisters!

Let us know how you are---or PM me if you like! Hugs--be well & stay strong! 

Life is not about waiting for the storms to end, but learning to dance in the rain! Orig dx Nov '00 stg1 gr3 0/27 pos nodes er/pr+ her2- mets dx apr '04 eyes & bones new dx jan '07 lung Dx ILC, 1cm, Stage IV, Grade 3, 0/27 nodes, mets, ER+/PR+, HER2-
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Nov 2, 2008 08:46PM Gitane wrote:

Hi Texas,  The words of wisdom here are right on.  I'll just add that you can come here for information, understanding, or just to hang out.  I have found that this is a great place to come because the ladies here really understand this experience in ways nobody else can.  Love and hugs.

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Nov 13, 2008 11:23AM IllinoisNancy wrote:

Hi Texas,

I'm an ILC survivor of two years.  I was dx a month before turning 50.  I had a lumpectomy which left a very small scar and an SNB.  I was told I may need chemo and radiation but after my oncotypedx they determined that I didn't need chemo.  I have been reading a lot lately which questions if chemo is effective for ILC.  I know hormone therapy is still real good if you have estrogen + tumors and you must have radiation if you have a lumpectomy.  I also had MRI's on both breasts prior to surgery so the doctor knew exactly what to expect.  I'm happy to say that I feel great and all my tests since the surgery have been good.  I wish you luck and can tell you that this journey gets easier with time.  I think the worst part was in the beginning when I didn't have a clear cut plan. Good luck and take care!


Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin

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