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-
Log in to post a reply

Page 6 of 37 (368 results)

Log in to post a reply

Feb 18, 2008 12:25PM Lynn12 wrote:


Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Feb 28, 2008 07:23PM BELLA44 wrote:

Hi There,

My name is carol and I live in New Zealand, I found a lump in my right breast in october 2006, so went to my DR who referred me to Breastcare where I had a mamogram done and an ultrasound, They were a bit worried so I had this test done with these tiny needles and it came back neg. My son and I went on holiday to Austraila and when I got back, I noticed the lump had got bigger so I went and saw my Dr who then put me under the hospital, I had a core biopsy done and it came back positive, the cancer was growing underneath, I ended up having  a full mastectomy of my right breast in feb 2007  By the time this had finally happened my lump was 4cm by 4cm, GRADE 3 and 8 lymph nodes involved. I had 10 rounds of chemo and 16 rounds of radiation. The hardest thing I struggled with was losing my hair and the loss of my breast, I liked my boobs. I have'nt had a reconstruction yet as I am on a waiting list, still waiting to hear from the plastic surgeon. I had my last radiation on Xmas eve. I am now on tamoxifen for the next five years. I was so blown away when I found out it was cancer,  I was really angry with the breastcare centre, they should have sent me away for a core biopsy in the  first place and maybe it might have not got as far as it did, but 1 year on and I am over it now, I'm feeling great. I now have a full head of hair, mind you I had to dye it as it came back grey and white and I am only 44, which I consider still young.....eyebrows and eyelashes, I never realised how much I missed my eyebrows and eyelashes I am back at work full time and just enjoying my life.... I have starting walking home from work and also have joined a gym. I want to get my fitness level up and try to lose some weight as after the chemo and going on tamoxifen I have put on 10 kilos. My family has been wonderful and my husband has been fantastic. We are off on holiday in the next few weeks, just him and I. It will be grt , It was such a crappy year last year but we are on track now and I think of nothing more than beating this cancer...I have to much to live for. I have meet so many wonderful people thru this ordeal and made some grt friends, and hopefully I will be in touch with them all my life. This website is grt and its nice to realise you are not alone.

Dx 2/15/2007, ILC, 4cm, Stage IIIA, Grade 3, 8/24 nodes, ER+/PR-, HER2-
Log in to post a reply

Apr 7, 2008 08:20PM mediamaid wrote:

Hi all,
I haven't posted a lot here but spend a lot of time lurking. Thought I'd add my story.
I noticed a lump in May of '04. Had just turned 40 so no mammogram at that point. We were going on vacation for six weeks. When I got back I asked ob/gyn about it. She said it was on both sides (it wasn't) so it probably wasn't cancer. Had mammo in August. Told it was "calcification" but come back in six months. Six months later I went to a different facility for my mammo. Just didn't feel happy about the first place. They thought their might be something there so stayed after hours to do an ultrasound for me. Biopsy recommended. Back the next week for biopsy. Told only about 30% chance of cancer and if it was it was about the size of a thumbnail. Got the dreaded call - "I'm afraid it's cancer."
Next week scheduled for lumpectomy. The morning of the surgery they did an ultrasound to put the pin in so the surgeon could find the lump. Couldn't find anything to put pin in. Of course, now I know that is not surprising with ILC. Surgeon (who is wonderful) does lumpectomy and comes out after several hours to tell my husband that tumor was the size of a fist and he can't get clear margins but I've been in surgery too long so he'll have to go in again in two weeks. Two weeks later I had a mastectomy. Stats below. Always referred to as a "nasty" cancer.
Eventually did DD A/C (4 doses) and on dose of Taxol then developed chemically induced pneumonia. Very scary. In the hospital for 10 days with eventually blood transfusion. I had been taking Neulasta and my white count was always really high - off the chart.
Survived pneumonia and did 8 doses of Taxotere. 29 rads.
Less than a year later I did the Avon walk in New York City. Walked 39 miles in two days and raised $3300 for breast cancer research.
I have decided to have a prophylactic mastectomy on the other side and then finally reconstruction. Really tired of the whole prothesis thing.
I'm going to New York again in October to walk again for breast cancer. If you live nearby come out and cheer me on:-)

Dx 3/1/2005, ILC, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 18, 2008 09:21PM Lynn12 wrote:

bumping for new ILC girls

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 20, 2008 12:33PM judy60 wrote:

My  ILC story started in March of 08 I was removing my bra to shower and noticed a lump. Primary dr sent for mamo it took until May 07/2008 to find out I had ILC stage 2  2.6cm.  Went thru many test and am scheduled to have my surgery June 24.2008. Right mastectomy with Diep.  I am 48 no bc history

Dx 5/7/2008, ILC, Stage IIA, ER+/PR+, HER2-
Log in to post a reply

Jun 20, 2008 12:44PM Little-G wrote:


I'm sorry.  You have a very up and down road ahead of you.  I found my lump too, I had a rash under my arm pit and was itching it and there it was.  That was about 2 1/2 years ago.  I'm glad you found this site.  There are so many women on here and a great support group.  Keep posting and letting us know how you are doing.  And throw out any questions or concerns you have.  Someone will come along to help you.  You'll be in my thoughts for next week.  Stay strong!


Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 21, 2008 10:19PM Gitane wrote:

judy60, Your surgery is just around the corner. We'll be thinking of you.

Log in to post a reply

Jun 21, 2008 10:25PM Lynn12 wrote:


Best of luck with your surgery! Send positive thoughts!


Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 23, 2008 12:19AM - edited Jun 23, 2008 12:58AM by jane59

MY story started on Sunday Jan 13th. at 5am when I was woken up by severe pain in my left breast. 1/2 an hour later I went back to sleep. The rest of the day my breast felt a bit tender and by the evening the pain was coming back I also thought my breast felt swollen got hubby to check and he thought it was too.
Decided to make an appointment to see my doctor. While lying in bed that night it suddenly occured to me that it actually felt like mastitis.

Monday 14th got an appointment for Wed Jan 16th(my 49th birthday) wasn't concerned because it was starting to settle down although as the swelling went down I thought I felt a lump. There is no history of cancer in my family.

Fri Feb 1st had a mammogram & ultrasound. They recommended a core biopsy and I was lucky there was an appointment available 1/2 an hour after I'd finished my tests.

I had made an appointment to see my doctor on Wed 6th of Feb but at 8-30am on the Tuesday they rang me to say doctor would like to see me ASAP. I knew then that it wasn't good.

When I saw her she said "I'm sorry to say it's cancer. I had a 2.6cm lobular invasive carcinoma. She tried to ring the breast surgeon from her office to get me in ASAP but he was out on rounds and would have to get back to me. That afternoon the surgeons office rang with an 8.20am appointment for the next day. 

Both my GP and the breast surgeon had trouble finding the lump it was easier to feel standing up.If I hadn't had the pain I don't know if I would have found it because when I did remember to self examine it was usually lying down in bed.

I had surgery (lumpectomy) on Tuesday 12th Feb and all went well. I was lucky that the surgeon was able to do the SNB from the original incision so even though I still have the soreness from where the nodes (3) were taken I haven't had to worry about the second cut and was able to come home without any drains. Margins were clear.

In main pathology report nodes are classed as clear but there is an additional paragraph from where they had looked more in depth which showed some rare scattered cells in 2 nodes. My onc says it's more than likely they were disturbed during surgery but because of that he changed my chemo from 4 x FEC to 6 (last one tomorrow YAY)  Also because of that I will be having rads to the axilla, due to start July 15th

Dx 2/5/2008, ILC, Left, 2cm, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- Dx 12/6/2018, ILC, Other, 3cm, Stage IV, metastasized to bone
Log in to post a reply

Jun 25, 2008 10:51PM - edited Jun 26, 2008 12:04AM by SammieKay

Hi fellow "lobs",

This is the first time I have posted here.  I was diagnosed in Nov.06.  I finished chemo last July  07.  I opted out of radiation as I had bilateral mastectomies and there were no breast cancer cells in any of the tissue removed.  Couldn't see what good radiation would do.  I have an oncologist at MD Anderson in Houston and one here in Victoria,TX.  The onc at MD ordered my chemo and the onc here in town administered it.

The onc. at MD told me he didn't do any post testing because it "would just drive me crazy".  He said they show a lot of false positives and you go through a lot of biopsies and tests that are unnecessary.  He also told me if I had a recurrence, I was incurable and would be on aromatase inhibitors.  I take Arimidex everyday.  I am 68, post menopausal and feeling great.  The Arimidex side effects seem to have lessened.  I have been on it for 10 months.

I was originally diagnosed with ductal and said to be small, not requiring chemo or radiation.  Just Arimidex.  But after the lumpectomy, the diagnosis was changed to lobular, 4.5cm with a microscopic drop of the dye in the sentinal node.  Actually there were 2 microscopic bits in one sn and one in another.  The doc at MD said they don't call that positive, but they don't call it negative either.  He said they didn't really know what it means.  So, being on the border for needing chemo due to the size, I opted to take chemo.  I wasn't too well informed at that time and didn't know that the chemo really doesn't do much for lobular bc.  Oh well, I felt like I was doing something.  I was, poisoning my body.LOL 

My mom died from ovarian cancer.  She lived 7 years past her diagnosis.  Pretty amazing.  Many of those were good quality.  The CA-125 is quite accurate to diagnose ovarian cancer.  My understanding is there isn't such a marker for breast cancer,  If someone knows of a good one let me know.  I will certainly ask for it.

I lost a 37 y/o niece to breast cancer in Jan.  She was diagnosed at age 32.  She had 3 young children.  She fought it with any and every clinical trial MD Anderson had to offer her.  She wanted to live until her children were older.  She saw one graduate from High School and one a senior and  the other one a sophmore.  Bless her heart.

I see the onc every 6 months.  He doesn't draw blood.  I do see my Internist every 3 months for blood work because I am on a statin.  She checks all my things that need to be checked for bc, so I feel good about that.

I am going through reconstruction, but it is not that great.  My breasts were D and now the implants don't have very good projection.  One is better than the other.  I have Mentor "gummy bears".  He also got one nipple to far toward my armpit.  The other is in a good place, but that is the implant that looks much smaller than the other.  I am scheduled for a revision in Sept.  He is going to change out the "flat" implant for a larger one.  They just don't look like real breasts to me.  I am resigned to the fact that man cannot make what God makes.  I was not a candidate for a tramflap and I just didn't want to go through a long operation for a latismus flap or a DIEP.  So I opted for expanders followed by implants. I am thinking maybe I have too much skin left from the mastecomies and that allows the implants to "ooze" out and flatten out.  They aren't very pretty.  But, I am glad to be alive and I am really feeling good these days.  So, Hallelujah and Praise the Lord.

Well, I think I covered everything, even though I think I jumped around  a lot.. 

I am glad to find this thread and will keep in touch.  I loved reading posts from the longtime survivors.  That is always encouraging.

Hugs to all, Sammie Kay

Dx 10/5/2006, ILC, 4cm, Stage IIb, 3/17 nodes, ER+/PR+, HER2- [Edit] [Delete] SammieKay
Joined: Sep 2007
Posts: 148 37 minutes ago SammieKay wrote:

P.S.  The pig avatars are a sign of solidarity for one of our girls on Feb.ChemoCruisers who has had a recurrence.  Cute aren't they?  Check out "Anyone starting chemo in Feb?"  You will see a bunch of "flying pigs".  : )  Sammie Kay

Dx 10/5/2006, ILC, 4cm, Stage IIb, 3/17 nodes, ER+/PR+, HER2- [Edit] [Delete]

Back to Top

Post a Reply: blood tests by oncologist Note: Your reply will appear at the bottom of this topic, below the last post. Bold (Ctrl+B)Italic (Ctrl+I)IndentOutdentUnordered listOrdered listPaste as Plain TextInsert/edit linkUnlinkInsert/edit imageEmotionsUndo (Ctrl+Z)Redo (Ctrl+Y)
 Attach signature
This topic is already a favorite.

© 2008 All rights reserved.

"Every journey has its end, but in the end it is the journey that counts." Unknown Dx 10/5/2006, ILC, 4cm, Stage IIB, 3/17 nodes, ER+/PR+, HER2-

Page 6 of 37 (368 results)

Scroll to top button