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.

treatment:
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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Apr 23, 2009 10:42AM Texas357 wrote:

Hi ladies,

I haven't been back on this thread since I was first diagnosed in November and scared. I've gone through chemo, and am about to start 33 rounds of radiation. Chemo was so incredibly hard on me that I've decided to go back and get a prophylactic mastectomy on the other side later this year, and time it so that I can finish reconstruction on both breasts at the same time. My husband is all for my decision. 

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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May 24, 2009 11:27AM Lynn12 wrote:

bump

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 24, 2009 02:00PM JillIorio wrote:

Diagnosed 5/21/09.  Had first screening mammogram at age 35 only because my paternal grandmother had breast cancer in her mid 70's. Started annual mammograms age 40 in 2004. Had been having regular mammograms every 6 months on left breast and annual on right breast since 2005.  I had a biopsy on my left breast for a lump that turned out to benign.  The radiolgist started watching an area of calcifications on the same breast so I kept going back every 6 months. No calcifications in right breast as of April 20. In April, the radiologist said the calcifications had started to change and warranted a biopsy.  Biopsy done 5/13/09.  Met with surgeon 5/21/09 and learned they found a 0.1cm area of ILC with 0.4cm clean margin.  Will need to go back to met with radiation oncologist 5/28/09 and then have a bilateral MRI to se if there are any other areas of concern.  Will go back for sentinel node biopsy in a few weeks and then if all goes well, will look to start MammoSite Radiation.

Surgery 5/12/2009 Lumpectomy: Left Dx 5/22/2009, LCIS Dx 5/22/2009, ILC, <1cm, Stage I Radiation Therapy 8/7/2009 Breast Hormonal Therapy 9/18/2009
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May 24, 2009 05:52PM amlg1 wrote:

DX 4/22/09.I go everyyear for mammo,went 2/23/09 few days later I have to go for another view and US.The radiologist says my breast looks fine but there is a density but my lymph nodes are enlarged,does a fna in march on nodes, comes back atypical cells.Was then told to get MRI.something shows up, then had MRI biopsey and diagonosis came back ILC 2.5 cm also in 2 nodes.5/21 had a lump and BS said she took out alot of nodes.I have an appt.6/1 with BS so I guess thats when I'll find out what stage it is .Before lump she said it is between 2&3.I have a feeling it's 3.I am so scared about the chem.but I hear all of your stories and I know I have to do whatever it takes.

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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May 24, 2009 10:38PM hlya wrote:

I did mammogramm only once since I turned to 40, then missed the 2nd year's mammo 'cause the clinic doctor told me I only need mammo every 2 years,  (but I think even I did it last year it won't show up anything though),  now it's the 3rd year and I found the lump by myself accidentally at lower outer area (very few people got this area) - the clinic doctor said it was probably just hyperplasia 'cause it's movable and was only around 0.5cm ( I doubt that as I felt it to be bigger than that),  and he asked me to wait for a month and see whether it would shrink or dissapear, but of course it was still there, then he sent me to ultrasound directly, the 1st radiologist told me it's solid lump around 1.1cm and I need to do U/S guided biopsy as it's very suspicious,  but as I missed last year mammogram, they asked me to do both at the same time.  Mammogram didn't show anything even the lump could be felt by finger obviously,  Ultrasound biopsy doctor told me to be prepared for BC (mentally).   Then core biopsy confirmed it's ILC.  After the surgery I was told to have both ILC and LCIS in one breast,  and the lump is 1cm,  but it's weird 'cause it's close to surface and I could feel by my finger and I felt it's larger than that size........I went though worring, confusing, crying, sad, couldn't think straight (even till now), etc. like lots of other BC women....

Anyway, I read on web saying there will be more and more women to be dx at younger age (40s)  than before(earlier generation at 60's) ,  due to worse lifestyle,  environment (incl. unhealthy food), more competition/pressure, etc............ Also, it's hard to get more stats/info. about ILC as much fewer women got it.   Would love to get any updated info. about ILC. 

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Jun 9, 2009 02:27PM - edited Jun 10, 2009 10:27AM by cd1234

I am glad I found this thread. I am 37, and found a thick area in my left breast. Had a weird dream that made me go to the doctor. After a surgical biopsy, I was diagnosed with ILC on 1/15/09. I had a bi-lateral mastectomy on 2/5/09. Started 6 months of chemo on 3/6/09. I had 4 rounds of AC. Nothing fun about that, and now I am getting ready for my third round of Taxol (12 totaI) I push myself everyday. I have continued to run, work, raise my son and be strong for my husband. I can hardly wait to be done with chemo. I hate being bald and boobless.

Dx 1/15/2009, ILC, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jun 9, 2009 06:22PM tabby wrote:

I was diagnosed in January 09 with LCIS after a biopsy (I had to push for it as they were wanting me to just watch it for six month--no thanks) for calcifications.  I had had calcifications in left breast and fibroadnoma in the right two years prior, so I knew something was up.  The BS had to do a larger biopsy and decided to do the MRI first just to see if anything else showed up.  It showed a fibroadnoma in the same approximate area as where she would have to get more tissue so I asked her to remove the fibroadnoma at the same time.  Long story short, the ILC (tiny) was found within the tissue of the fibroadnoma (the pathologist couldn't believe what he'd found).  I decided to have bilateral masectomies and it was done on May 7.  Not for the faint of heart, but I believe these darn tissue expanders are worse sometimes!!  Anyway--celebrating the cancer is gone (as well as most of the breeding ground) and trying to move forward.  Don't have to have chemo (not worth it) but will have to make a decision on the tamoxifin (which I don't like).  My BS says to take out the ovaries as I had a lot of LCIS in the left breast.  Anyone know why?

Dx 3/4/2009, ILC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 12, 2009 03:13PM cd1234 wrote:

My surgeon also told me to take out the ovaries because ILC tends to spread to them. My oncologist said no way unless I come back positive for BRAC 1or 2 positive.

Dx 1/15/2009, ILC, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jun 23, 2009 10:35AM - edited Jun 23, 2009 10:38AM by kyra

This Post was deleted by kyra.
jan t Dx 12/12/2007, ILC, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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Jun 23, 2009 10:44AM - edited Jun 23, 2009 11:18AM by kyra

help, could someone tell me what to expect l have already had one mastectomy in january 09 l had ILC and DCIS then chemo FEC 6  and radiation 16MV  and hormone treatment,now l have seen PS and he is prepared to do bilateral and deip reconstruction, how bad is it, and how long does it take, l do want this so badly but it is down to my heamotologist as l am under anticoaglant taking warfrin,

l would be gratefull if someone could give me some advice,

jan t Dx 12/12/2007, ILC, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2-

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