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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Jun 25, 2008 11:02PM SammieKay wrote:

As I was reading some of your stories, I found it ironic how many of us had some type of injury to bring the ILC into view.  I had rushed through my garage the summer of 06 and slammed my right breast with the side mirror on my Yukon.  In Oct., one day I noticed a thickening of the top of the right breast.  Had a doc look at it, he said probably nothing, but get mammo and ultrsound.  I had had a mammogram every year since I was 35 because I had fibrocystic breast and dense breasts.  It never showed up.  On this one there was a small suspicious place on right breast.  Ultrsound was negative.  I was advised to have a Sentimammogram.  It is done with injection to the blood stream of a radioactive isotope and it is 85% accurate for diagnosing cancer.  Mine was very positive, so I knew that I had an 85% chance of having cancer.  I was sent to Houston to the Baylor Breast Center and had a core needle biopsy done with ultrasound guidance.  The radiologist doing the biopsy told me that he thought I had ILC.  This was from looking at the tissue samples.  The pathologist said it was Ductal Carcinoma.  The surgeon said lumpectomy with Tamoxifen.  A week later they called and changed the diagnosis...4.5  cm ILC requiring mastectomy, chemo and radiation.  YIKES.  I have already posted the rest of the story.

It is so strange how similar some of these stories are.  They told me that Ductal and Lobular have similar characteristics.  I guess it not a black and white deal.  Gray areas.  Sammie Kay

"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-
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Jul 9, 2008 01:05PM PeggyU wrote:

I am newly diagnosed with ILC.  Here is my story.  I am 59 years old and in February of 2008 I had my annual mammogram.  My Gyn called me back in 2 weeks and told me there were some swollen lymph nodes and he wanted me to see a breast specialist.  I went to the breast specialist on 2/29/08 and she told me there was nothing wrong after reviewing my films.  But I told her I felt a lump on my left breast.  I did not know that the lump was in my lymph node.  So she examined my breast laying down and of course she did not feel the lump because it was under my armpit.  She sent me home.  In 3 weeks I saw an oncologist.  He said I needed to have that lymph node removed with a byopsy.  During surgery the surgeon determined that it was cancer and assumed it was lymphoma because my mammogram was "clear" .  When the pathology report came back in 8 days with breast cancer I had to go through a whole round of tests, PET scan, Breast MRI, Brain Scan.  It turned out that I had tumors in both breasts and swollen lymph nodes on both sides.  I had a bi-lateral mastectomy and all of my Axilla lymph nodes removed on both sides.  When the pathology came back it showed I had stage III ILC.  I had 13 nodes involved on the left side and 2 nodes involved on the right side.  I am currently in my first go around of treatment.  I am having my treatment at Fox Chase Cancer Center in Philadelphia.  I am currently in a clinical trial involving Avastan, it is a double blind study, so I don't know if I am getting a placebo.  I am also getting doxorubicin and cytoxan every three weeks.  I have 2 more of these cycles and then I am on Taxol for once a week for 12 weeks.  Once I am done with chemo, I will have 5 weeks once a day of radiation and then on to hormone treatment.  It is very overwhelming.

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Jul 9, 2008 01:16PM collector wrote:

Peggy, it IS overwhelming!  You have come to a group of people who can help you weather all the different steps in this process.  My ILC came as a complete surprise and I am not handling it well.  This board helps me to get information and see what questions I need to ask.  Mine was discovered on a routine Mammogram but they told me it has probably been there for 8-10 years.  I have always been very careful to get my yearly mammogram on time.  I really don't know how they found it this time.  I had Ultrasound and a different mammogram and then MRI and finally opted for lumpectomy knowing that I will probably be facing this again down the road.  I was 59 and have since turned 60.  I'm 7 and a half weeks into my chemo (T/C) and have been told that I'll need 33 radiation treatments and then 5 years of Femara.  Keep coming back to this thread and others on the Board.  I have learned a lot!  Good luck to you.
Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 9, 2008 03:55PM nash wrote:

Wow, Peggy, that's a little disconcerting that the breast specialist declared you fit as a fiddle when in actuality you had Stage III ILC. Just go to show how much one has to be one's own advocate and push when one knows things just are not right. Of course it's overwhelming, but you've come to the right place for support.

Hugs to you, collector--I bet you're handling this better than you think. Being in treatment is really hard. It will get better--I promise. I finished chemo in December and rads in March, and lost my mom to bc in February, and it all kind of sucked. But I'm happy to say that some days I feel pretty good, both physically and emotionally, and I bet you will too. There is a light at the end of the tunnel--just some days it seems just a tad dim!  

Stage IV Pleomorphic ILC, initially diagnosed at age 38. Mets to brain, cranial nerves, bone and breast Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 7/19/2007 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (Left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Hormonal Therapy 7/1/2018 Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy 7/3/2018 External Local Metastases 7/3/2018 Brain Radiation Therapy 7/27/2020 External Local Metastases 7/27/2020 Brain Radiation Therapy 2/23/2021 External Local Metastases 2/23/2021 Brain Chemotherapy 3/1/2022 Other Dx ILC, Other, Stage IV Radiation Therapy Other part
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Jul 9, 2008 04:53PM collector wrote:

Thanks, Nash!  You sure had a run of bad stuff with losing your mom to BC, too.  I think one of my problems is the relatively few people with ILC.  Makes me more nervous.  I STILL remember the onco nurse giving me my biopsy results on the phone and cheerily saying that ILC is the second most common breast cancer, like it was really not that big a deal.  But I found out quickly that there are many particular pitfalls for us.  I;ll keep looking for that light....

Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 9, 2008 08:13PM awb wrote:

SammieKay---when  they found a large mass on my left ovary and suspected ovarian cancer, my gyn did a CA-125 bloodtest and a transvaginal ultrasound. Actually, he told me the CA-125 blood test is fairly unreliable especially in premenopausal women, but it's the only test they have for now (in addition to the TVUS). I ended up with a total abdominal hysterectomy, but fortunately everything was benign.


"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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Jul 9, 2008 09:33PM sarahsewer wrote:

My story is similar. I am 47 with 10 and 14 year old girls. I  found a BB size lump May 10. I saw the GP May 20 and was scheduled for a mammo and US May 23. I was sent for an MRI June 11 and met with the BS June 16 for biopsy. Dx came June 18- ILC. When I asked if I should schedule time in September to get this "taken care of" (what a bone head I was), the BS said my cancer "terrifies" her. She wasn't being dramatic, just pounding into my thick skull that this is serious. Met with the onc the next week and started TAC June 26. I'll have 4 chemos, mastectomy, then radiation after. In my perfect world I should be well on my way to good health my January 1. Just in time for Girl Scout cookie sales!

So far after one treatment, my only se is a nasty rash on my hands.  Well, my hair is falling out too. I am now shedding faster than my labrador.


Dx 6/19/2008, ILC, 6cm+, Stage IIIA, Grade 2, 1/3 nodes, ER+/PR+, HER2-
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Jul 13, 2008 01:04PM donspink wrote:

Hi everyone, you all sound so interestingl, I am new to all of this, as only was dx 02 June 08, 20th June 08 had RB Mast, and 3 Sentinel Nodes removed, all positive, Pathology is (perhaps a little different in Australia??) ER - PR pos 100%  HER 2 neg, I have 2 Indian Files do you know what that means, it is common with this diagnosis apparently, Spec says they don't like to be too radical with surgery, as they know little about this type, and only 5% in the world get this type, waiting for Surgery 1st August to have LB Mast, and Right side Bulk Dissection of Lymph Nodes, then Chemo, have not seen the Onco yet, I guess awaiting the Path from next Op. I feel apsolutely fantastic, I have a wonderful partner and family and everyone except me is in shock mode.  Anyone out there who has something similar please respond. I would welcome any feedback. donspink

Dx 6/2/2008, ILC, 4cm, Stage IIIA, Grade 3, ER+/PR+, HER2-
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Jul 13, 2008 04:24PM Gitane wrote:

Hi PeggyU,  I am a bit behind on reading posts and I just read yours today.  I wanted to say big ((((HUGS)))) and welcome to our little ILC group.  You are going to Fox Chase which I hear is an outstanding place to receive treatment.  The Avastin trial is really great.  When I was diagnosed I asked for Avastin.  I was told it was only being used in very advanced metastastic bc cases and wasn't really available to me.  I've heard it can help, so if you have been randomized to receive it that might be a very good thing.  The AC you are getting was very effective for me.  I had it before my mastectomy so was able to see what it did to the cancer in my breast.  It is very hard on your body, by now you are probably well aware of that.  Take very good care of yourself.  Yes, it is overwhelming.  Come talk to us if you feel up to it.  I'll be thinking of you.  

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Jul 16, 2008 07:28AM PeggyU wrote:


Thanks for the Hug.  Tomorrow is my third treatment of AC.  I won't know if I am receiving Avastin until the first of November when they reveal what arm I'm in.  20% get a placebo.  I hope I'm getting it, but if not, I will get it first after the trial closes. This trial is only available to stage III patients because of our high risk of recurrence.  Keep your fingers crossed for me that I am receiving this very promising drug.  I am very lucky that so far my only side effect is fatigue.  Each day I push through.  Working full time has been very therapudic for me and has forced me to get up and MOVE. 

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