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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Feb 2, 2009 06:43PM - edited Feb 2, 2009 06:55PM by LauraLC

Well, after long consideration I decided to have breast reduction surgery at age 50! Little did I know that I had probably made a choice that would save my life!  The surgery was 11/13/08.  Mammagram 3 weeks earlier was ok.  Then pathology reports came in stating that I have LCIS, ALH in both breasts tissue.  In the right, 3 foci of ILC .3 cm,, .1cm were found, ER/PR+, her2-, margins unknown.  This is only the 3rd time in 30 years that something like this has happened to my plastic surgeon.

My local, well-respected onc recommended bi-lat. mast. b/c of the risks, the local rad. onc. thought radiation would do the trick depending on amount of scar tissue.  Maybe tamoxifen.

I went to Fayetteville AR to see Dr. Steven Harms (renown breast cancer radiologist) for a breast MRI---a wonderful man who helped develop the Aurora breast MRI.  He found no other ILC and very minimal scar tissue, and thought that radiation and tamoxifen could be an option b/c I could be monitered by MRI. 

I had a SNB on 1/20/09 and it was negative! 

I went to the Kirklin Clinic at UAB for a second opinion Jan. 29.  The team there (De Los Santos, Krontiras, Forero) recommended that I have the bi-lateral mast. b/c of the unknown margins of the foci ---- even with radiation. They are not going to recommend tamoxifen unless more ILC is found. 

I am going back to the Kirklin Clinic 2/3/09 for a consult with Dr. Jobe Fix about DIEP reconstruction.  Sometimes I feel that this is happening to someone else!  I have really learned a lot from this board.....thanks to all.

bi-lat. skin-sparing mast. 3/4/09 with muscle-sparing free TRAM flap recon. Dx 11/21/2008, LCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 6, 2009 06:02PM kickinit wrote:

It was nice to find this thread and read other's experiences and what they have gone through.  ILC can be sooo sneaky!  I had been called back for magnifications on my mammograms for years due to calcifications.  In 1997 I had a biopsy that was benign but since then, every year I worried about what they would find.  Last May they found a new cluster in my left breast so I went back for a magnification.  When the tech came back in the room followed by the radiologist I knew the news was not good.  I met with a breast surgeon who recommended a biopsy.  July 1st I had the biopsy, July 7th she called with the news I had IDC in the left breast.  Three days later while meeting with her I told her that my initial plans were to have a double mastectomy.  As we were talking she was going over my records and decided that she really wanted to biopsy the spot on my right breast that they had questioned the year before.  I spent a friday at the hospital going from test to test including the right biopsy.  On Tuesday she called with the news that I had ILC in the right breast.  Not only did I have ILC but I also had LCIS and all sorts of things going on.  She said my right breast was just busy, busy, busy.  Without a question she was recommending a mastectomy on my right breast.  She told me that the ILC is hard to detect on mammograms and it would have been several years before I would have felt anything.  I was actually lucky that they found the IDC in the left breast on the mammogram; it lead to finding the ILC in the right breast. 

I had a double mastectomy on July 30 (lymph nodes were all clear) and opted to have reconstruction started immediately. After the surgery, using the surgery pathology reports and an oncotype test done on my tissue, my recurrence chances were low enough that my oncologist said I didn't have to have chemo or radiation.  My plastic surgeon used Alloderm as part of my reconstruction and was able to put 250 cc's in at surgery.  I was always on the small side so when I came home I was almost as big as before the surgery.  Everyone was in awe of how I already looked.  I had been dreading how I was going to look after - all I could think of was an old movie I saw where the women was looking in the mirror afterward and had a complete look of horror on her face.  I didn't have any horror - just amazement.  I had two more inflations and then on November 7 I had my final implant surgery. 

I haven't regretted the double mastectomy at all.  I was lucky to have found the cancer early and really no problems with the surgery.  I am having a capsular contraction with my right implant and will have to have a new implant put in, but I can handle dealing with an implant problem over dealing with cancer any day.   Reading and sharing with others on this site is so helpful.  I have been blessed to have a big support group, but there are things that only someone who has gone through this can help with. Thanks to all of you for your help.

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Feb 21, 2009 05:42PM - edited Feb 21, 2009 06:46PM by my560sel

I had a mammogram on Oct 28/08 and they told me that if I didn't hear anything by 2 weeks, then everything was clear. Dec 1 I got a phone call from the Dr at the clinic telling me that I need to go in and get a compression and ultra sound done because he thinks there is something there. I had both done a few days later and again he was suspiscious of what he saw on the ultra sound. He sent me back to my GP who referred me to an oncologist. The oncologist couldn't feel anything in my breast and ordered a biopsy to be done. It being so close to Xmas, everything was backlogged and I finally had both an ultrasound guided biopsy and core needle biopsy done on Jan 5/09. It took the Resident who did the biopsies (it's a teaching hospital) 16-17 tries to get 3 or 4 good samples. I got out of there feeling like a pin cushion. A week later which was two days after my  50th birthday the biopsy result came back ILC and LCIS 1.7cm x .2 x .2 ER+. PR+ HER2-, Grade 1-2. The oncologist (surgeon) said that the tumor was very treatable and I have a scheduled surgery date for a lumpectomy and sentinel node biopsy this Tuesday Feb 24/09. He said I would most likely need radiation afterwards.  I am so confused at this point and not sure what I should do. I have to admit that my doctor and I didn't have much of a discussion and from reading posts from other women, I'm wondering if I'm being aggressive enough in my treatment of this cancer. I'm worried about it reoccurring in my other breast or elsewhere in my body. Is it normal to go through a lumpectomy and then make a decision to have a mastectomy or bi-lateral mastecomy once I know the results of the lumpectomy? I'm reading  that most women don't even go through the lumpectomy and just opt for mastectomy from the start. My doctor never even mentioned this as an option. Am I jumping the gun by maybe thinking mastectomy before I even have the results from the lumpectomy and SNB? I'm also worried as I've read that radiation makes it harder to have reconstructive surgery. Does that mean in effect that I have to make the decision for mastectomy soon after the results of the biopsy are in? I'm feeling pushed for time and all these things going round in my head and a bit of an overload of information at the moment. How will I ever sort all of this out!


DX Jan15/09, ILC, <1cm, Stage I, Grade 2, 0/3 nodes, ER/PR+, HER2-, Oncotype 9
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Feb 22, 2009 03:47PM awb wrote:

Terri--I don't have any easy answers, but I can tell you that my mom had ILC many years ago--lumpectomy, radiation and tamoxifen--and is now a survivor of over 22 years without a recurrence.  She is my inspiration and I hope can be one to others. I have LCIS, just finished my 5 years of tamoxifen and am doing well with high risk surveillance. Praying you do well with your treatents, whatever you choose.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Feb 22, 2009 06:58PM KathyAlex1960 wrote:

Our stories are so similar!!  I had 4 intraductal papillomas removed from my left breast 4 years ago.  I always had scar tissue in that area and it was a little hard.  In November it felt "different".  My husband didn't feel a difference.  I had mammograms/us every 6 months for the past 3 years.  Last mammo was in February 2008, and I was cleared until this February.  Called in December and made an appointment.  The radiologist said his gut feeling was that it was cancer, and scheduled me for MRI and biopsy.  The MRI was NEGATIVE!!!!!  Biopsy showed mixed lobular/ductal.

Surgery December 29th - 3.5 cm lobular. Mastectomy. Initial lymph node biopsy was negative, but then turned out to have 1 positive for micrometasis.  Had nodes removed 1-16-09  and 2 were positive.  Starting chemo on Thursday the 26th.  A/C x 4 for 2 months, avastin clinical study, and then taxol x 1 for 12 weeks.

 Seriously considering removing the other breast - still waiting for genetic test results.  Even if they are negative, I might still remove the other one so I don't have to worry about this damn thing sneaking up again!!

Dx 12/13/2008, ILC, 3cm, Stage IIB, Grade 2, 3/16 nodes, ER+/PR+, HER2-
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Mar 31, 2009 07:35AM LauraLC wrote:

I just wanted to share an update with ya'll.  I had my skin saving bi-lat. mast. with muscle sparing tram flap recon on March 4 at UAB.  Dr. Jobe Fix is my plastic surgeon and Helen Krontiras is my breast surgeon. My surgery went very well, but did last 12 hours.  Dr. Fix was able to do the nipples though (about 50% of the time he is able to do this)  I opted for DIEP reconstruction initally, but ended up with my second choice b/c I just did not have enough large blood vessels for DIEP.  The care I recieved at UAB was exceptional.  We still cannot get over it!  From the drs., and rn's to the housekeeping staff.  I  feel very fortunate to have gone there. 

Tomorrow will be 4 weeks and I'm doing ok.  Only had drains for 1 week!  Still sore and tire easily but am walking at least 30 - 45 min per day. 

Pathology reports were neg. for any more ILC ---- only more LCIS was found.  I won't have to do any radiation or chemo! 

bi-lat. skin-sparing mast. 3/4/09 with muscle-sparing free TRAM flap recon. Dx 11/21/2008, LCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 5, 2009 07:49AM Lynn12 wrote:


Thanks for posting, glad to hear you are recovering well.  Keep up the walking, it will help.  Fabulous news from the path report!

take care,


Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 6, 2009 07:11AM - edited Apr 6, 2009 07:19AM by AussieSheila

Hi Ladies.

I felt a tiny lump like a dried pea, in outer rh breast, during my shower one day in April '94, when I was 48. Went to GP and asked for it to be checked out.  He couldn't feel it!  In Australia, we have a policy of no free mamms before 50 yrs of age.  As we had four teenagers at home then, we could not afford to go to a Dr privately.  Youngest son (13) was running away from home too, which was stressfull enough in itself.  As my bedroom has two (lockless) doored access and with three boys in house, I always got dressed in the bathroom and the vanity mirror in there was too high to see below my nose. One day in April '95, I forgot to take my undies with me and did a half naked flit to my bedroom and noticed the 'orange peel'  effect on my rhs breast.  Two days before this, we received in the mail a sample pack of some sort of medical cards with pictures of diseases/conditions and one of them was a picture of a breast with the 'orange peel' look of a cancerous breast!

I rang my GP immediately to make app't asap.  He was flabbergasted, if not nearly hysterical. When the nurse/receptionist failed to get immediate app't with X-ray clinic, he yelled at her at the reception desk, "You tell them this woman has a 3 inch lump in her breast and I want this done yesterday!"  Well . . . . I nearly collapsed in a heap on the floor  . . . . and yet I didn't really accept that I/my body could actually have something like that lurking within.  I had my first mammo on the Monday, Tuesday was a holiday so I had to wait til Wednesday for the results.  I went out for an hour in the morning, when I came back, DH told me we had to go to the Drs office straight away. 

At that time my DH--a ships master--wanted to sell up everything to buy a yacht and sail off, with four teenage kids, into the wide blue yonder.  One thing I knew for sure, I am not a masochist.  I was resisting this idea with all my might!  The Drs surgery was about 100 metres from the local river where there were boats for sale.  So, I had my suspicions that that was where we were really heading.  Until we drove into the med practice car park--then I got a bit shaky.  

The Dr sat at his desk, in a little cubicle type room and, while staring at a gory poster of some nasty rash, told me that I had Breast Cancer and he had made an app't for Friday with a surgeon at the local hospital.  I knew then that my life was no longer under my control. 

The surgeon did the biopsy that day and I had to wait a week for the results. During this time, I was attending a local adult education college with my daughter, (brain damage from a malignant brain tumour at 10) 3hrs x 3 days a week.  She was 18 and very dependant on me and I had to leave her at the college while I went to the hospital, which freaked her out.  The surgeon was very short and had to stand on a stool to get enough pressure to stab into my breast to get a sample. I can still hear the crunching sound today, this procedure made. This left me quite upset and shaky but I had to get back to the college, before my daughter started panicking.  

Results came back and once again I had to leave DD alone.  The test results were undefined so the Dr had to do another bio with a bigger needle.  My breast was black and blue from the last effort and I got quite frightened this time because I knew what was coming!   Somehow, I got through it and returned to the college but I was feeling quite sick and teary, probably from shock.  I got home and had a little nervous break-down in the shower, without DD knowing.

When I went back the third time the surgeon told me that I had BC for sure, but wouldn't know what type it was, until after the mastectomy three weeks later, then I had to wait two more weeks for pathology report.  It was ILC!  Not that I really knew what that meant for a long time after.  I had a modified mx, with 4 x CT, and then 5 years Tamoxifen.  

I must say here, I found it much easier dealing with my own dx and treatment than my daughters in '88.  At least any decisions I had to make for myself were my choice, but making life and death decisions for a child is a whole other ball game.


Maybe it is life itself that teaches wisdom to its youth. k d lang ILC dxed in RB '95, mod rad mx 2 pos nodes from 32 ax clearance + A/C x 4 + Tamoxifen x 5yrs. Dx 11/4/2008, ILC, Stage IV, 2/32 nodes, mets, ER+, HER2-
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Apr 21, 2009 08:57PM Lunalin wrote:

I had gone 5 yrs without a mammo. I was currently in intensive therapy for Rheumatoid Arthritis and couldn't care about anything but my pain. I guess I noticed a puckering in the skin around my nipple but didn't mention it for months.

I finally felt around, under my nipple, found a big lump. Who thinks to feel under the nipple? I had a 5cm infiltrating tumor. I chose mastectomy and chemo. The chemo greatly helped my RA and it was a blessing.

Dx 8/17/2004, ILC, Right, 5cm, Stage IIB, Grade 1, ER+/PR+, HER2- Dx 9/2014, ILC, Right, 5cm, Stage IIIB, Grade 2, ER+/PR+, HER2- Dx 5/2016, ILC, Right, 5cm, Stage IV, metastasized to lungs, Grade 2, ER+/PR+, HER2-
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Apr 23, 2009 09:31AM pickle wrote:

Lynn12: I have sent you a PM. Your input would be greatly appreciated


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