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 04:49AM - edited Dec 7, 2008 06:49AM by Lynn12

Posted on: Jul 6, 2007 04:49AM - edited Dec 7, 2008 06:49AM 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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Dec 6, 2008 01:29PM bibi wrote:

I live in South Africa and also had a typical sneaky ILC experience!   Had normal(?) mammogram in December 2005, we were planning a holiday in Germany in December 2006 and as I didn't feel like going for a mammogram during the month we were leaving, I thus went for my annual mammogram 2 months before it was due ie after 10 months and with no breast related complaints at all.   They performed the mammogram and followed it up with a sonar as usual.   On the sonar and on the mammogram a 1cm perfectly formed soft encapsuled round fibro adenoma clearly showed, corresponding in only one way to the 7 positive signs for breast cancer.  Against all odds the radiologist however decided to perform a biopsy on this lump but even as the needle passed through the tumour easily and smoothly he felt he had just confirmed the fibro adenoma diagnosis.   He said that a breast cancer felt like an unripe pear during biopsy and not like butter!   We were all stunned when the results came back which indicated Grade 1 IDC.   A lumpectomy was scheduled for 3 days later and the frozen section in theatre confirmed IDC.   When the whole tumour was analyzed it showed Grade2 ILC though!   Suddenly the whole treatment plan changed as my surgeon who accidently is my employer as well! feels that the follow up on ILC in the other breast is hugely compromised by the fact that in 40% of mammograms a false negative is reported on ILC (as we had firsthandly experienced) and also that ILC tends to be multicentric and to recurr on the other side.   Ten days after my lumpectomy a bilateral mastectomy was performed.   My lymphnodes were clean and we immediately realised that the ILC had been missed 10 months earlier as a 1cm lump takes longer than 10 months to develop, with hindsight it was clearly visible on the previous tests, again disguised as a fibro adenoma.   When the final results came I also had a LCIS in the other breast which didn't show up on any test.   I didn't need chemo or radiation and I am on Arimidex now as the tumour was ER+, PR+ and HER neu-.   This was really a narrow escape and after 2 years and 2 months of perfect health I am very grateful!

Dx 10/4/2006, ILC, 1cm, Stage I, Grade 2, 0/13 nodes, ER+/PR+, HER2-
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Dec 10, 2008 01:11AM Lory wrote:

I started 1 of 4 TC today. They gave me Happy Hour First and I wasn't freightened at all with the infusion. Just wondering why I CAN"T Sleep NOW!!!!!!

I feel fine but I am ready! thanks for all you support. Just reading positive survival stories gives it to me.

Be the Best that you can Be Dx 10/21/2008, ILC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 10, 2008 03:06AM mattscot wrote:


 I was supposed to start Friday TCH -- there was a scheduling issue... (I am trying to work full time through all this...) they scheduled me for Friday at 8 am -- and could not get me in later... they are light staffed because of the I rescheduled for next week.  sheesh... it reminds me of trying to get the  optimal time for a haircut...

I also admit that I have a huge dread factor... and am not convinced that chemo is necessary in my case-- 

Dx 9/22/2008, ILC, 2cm, Stage IIA, Grade 2, 0/6 nodes, ER+/PR+, HER2+
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Dec 30, 2008 08:08AM Survivor07 wrote:


I, too, had swollen lymph nodes when diagnosed with ILC.  However, after 3 bouts of chemo, my Oncologost cannot feel the swollen lymph nodes anymore. And the mass has reduced in size. Yeah for me!


Dx 2008, ILC, 6cm+, Stage IV, Grade 3, 3/10 nodes, mets, ER+/PR+, HER2+
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Jan 1, 2009 06:59PM yrawleigh wrote:

Hi...I'm 46 years old. Just had bilateral mastectomy, axillary's taken out. DX...ILC, 6.7 cm so far 2 out of 3 nodes positive, waiting for axillary results. doc wants to do dose dense chemo a/c 4 rounds every other week than t for 4 rounds every other week. Radiation 5x week for 5 weeks....anyone experience this type of chemo? They call is AC/T dense dose....but I keep hearing about TAC, every three weeks....any comments or advice?

Dx 11/11/2008, ILC, 6cm+, Stage IIIA, Grade 1, 2/3 nodes, ER+/PR+, HER2-
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Jan 1, 2009 07:17PM JudyO wrote:

Hi...My mets should show. I have ILC. I had breast removed...then did AC/T dense dose...finished it near the end of November. I am just completing radiation..25 of these. I started arimidex about a month ago. I know there is some discussion on the internet sites about how  effective chemo is for lobular and what type is best. Your oncologist should give you the best answer to this. I know I was willing to do anything so I may stop recurrence.

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Jan 1, 2009 08:15PM Gitane wrote:

Hi Yvonne,  

Welcome to this site and our ILC thread.  I hope you are doing well post-surgery.  My doctors recommended the same treatment your doctors are recommending only it was before the surgery.  They decided against the radiation, though it was a close call.  I ended up not having the T and had two more round of AC after my surgery. I had a good response to therapy.

I think the TAC is a bit harder on your system,  I'm not sure if AC then T in sequence is better but seems to me I read in several places that it is more effective.  Hopefully others who know more about this will chime in.  

I hope to hear more from you.  This is a rough road, but it helps to share. HUGS. 

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Jan 20, 2009 04:38AM sandogger wrote:

I also have a very large tumour - 7.9 cm and it sneaked up on me.  I was diagnosed in Nov. 08 and am currently going through neoadjunct chemo.

I would like to know more about your experience and how you are doing. 

Dx 11/25/2008, ILC, 6cm+, Stage IV, Grade 3, 12/34 nodes, mets, ER+/PR+, HER2-
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Jan 20, 2009 05:03PM MaryEV wrote:

I had a mammogram as part of my annual checkup in September 2007. I awaited the results nonchalantly as I usually do. When the report came in and had no findings I filed it away in my medical file. 2008 rolled around and as the year prgressed I realized I was experiencing full-blown menopausal symptoms. The last period I had was in June and around that same time I noticed a thickening area in the top left quadrant of my left breast. I looked on the interenet to see if breast changes was a menopausal symptom and found that it was. Recommendations were basically to monitor and see if the breast changed further.  By the fall, it was time to schedule my annual checkup. The thickening in my breast had not really changed that I could tell, but it was still there. I scheduled an appointment with my GP for September, but she was out sick on the day of my appointment so it was rescheduled for early October. At my October appointment, my physician examined me, including my breasts, and was not overly concerened. She normally schedules my mammogram during my annual checkup but our local hospital has downsized and no longer has a radiology department. Instead, the nurse contacted a branch of the hospital 20 miles away to make an appointment for me. They had closed for the day but she promised she would make one the next day.

A week or more passed and I had not heard from my physican so I contacted them. The nurse had dropped the ball and not made my appointment. She said she would right then and called me back shortly with an appointment in early November. I had my first mammogram on November 11, 2008.

I turned 50 and my darling husband took me to Las Vegas for a long weekend to party and celebrate. Upon my return was a letter from the hospital containing my mammogram results. There were suspicious areas on both breasts and another mammogram and ultrasound was recommended. I called the hospital the next day and scheduled a followup mammogram for November 26.

The news came in early December that I needed a surgical consultation for two lesions located in my left breast, exactly where the thickening was. I visisted with my GP again and she made an appointment with a breast surgeon for December 17th. At that visit, he referred me to the imaging center there for more mammos and ultrasounds. I had a core needle biopsy of two lesions in my left breast, one 5 mm and one 1.6 cm. They determined the right breast just had a cyst.

I had to call to get my results which were delayed my the holidays. After leaving three messages on December 30th, I finally got a call back from the nurse at the imaging center. Both lesions in the left breast had come back positive for cancer.

The surgeon's nurse called me the next day. She told me that my options would be a lumptectomy with radiation or a mastectomy. I already had a follow up visit with them scheduled for January 12th, which was good since I was heading to Orlando for a vacation on January 3rd. She said to go on the vacation, not worry about anything, and they would see me on the 12th.

Hubby and I saw the surgeon on the 12th. At that time he informed me that I had the less common type of breast cancer called Invasive Lobular Carcenoma. That type of cancer was harder to detect on mammograms and ultrasounds. Since there were two areas of cancer, and since it is hard to detect if there is more, a mastectomy was recommended. I had already decided on a bilateral mastectomy. I thought about immediate reconstruction for about a week. After researching the different options and weighing the pros and cons I decided to forego reconstruction. My bilateral mastectomy is scheduled for January 28th.


Dx 12/30/2008, ILC, 4cm, Stage IIB, Grade 2, 3/13 nodes, ER+/PR+, HER2-
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Jan 30, 2009 01:36PM - edited Jan 30, 2009 01:37PM by cat08

For the last 3.5 years I thought I had breast cancer. I also thought perhaps I was crazy for thinking this. I began having dry skin on my nipples, was tired in a way I had not experienced before, and started having drier skin than normal on my arms and legs. Then I began having little pains in my left ovary and my left breast. I went to doctors telling them my concern. Mammography was used and also ultrasound to view the ovaries and cervix and breast tissue. Nothing was found. Last year I mentioned my concerns again to another set of doctors as I had relocated to California from NYC. The OB/GYN did the same type of exam as had been done in NYC, but during the mammography they found calcifications and wanted to do an ultrasound. In the ultrasound they noticed something and a thickening of the tissue. They suggested a stereotactic biopsy on one of the two sets of microcalcifications that were found in the same place where I had experienced pain. The stereotactic biopsy showed that it was benign. The surgical oncologist however suggested having a lumpectomy to remove the calcifications as they may be dangerous in years to come. She mentioned that there was a .0009% chance that any cancer would be found, but it was a safe thing to do. On 1/7/2009 they performed the lumpectomy. The following week I had a consultation with the surgical oncologist and she was in disbelief as ILC was discovered in the surrounding tissue near the calcifications exactly where I had pointed to. I go in for an MRI next week followed by a lymphnode biopsy. I will then find out whether it has spread to other areas. I worry very much about the left ovary as the pain was similar there. I also worry that this cancer is so sneaky and undetectable and marvel how the sequence of steps led to the discovery of it. What they found from the tissue of the lumpectomy was .5 cm in size and they say the margins are clear. I want to go on a big cruise for awhile after all of this is over with, but also fear that my instincts may lead to investigations of the ovary, or that other ILC will be discovered in my body. It is a difficult time mostly because it is very hard to trust one's "gut," but I am very glad that I did.

cat Dx 1/17/2009, ILC, <1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2-

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