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Topic: Scared for my sister

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jan 15, 2019 03:40AM

geocachelinda wrote:

I was diagnosed with ILC stage 3C in 2011.  It took a long time to get diagnosed because of negative mammo and ultrasound readings.  Now it's happening to my sister.  She is older than me but had developed two lumps and some signs of breast cancer.  Her mammo and ultrasound just came back negative.  I told her that she really needs to ask for and get an MRI.  That's how mine was found.  I don't want her to go through what I did!  

ILC Stage 3C ER+/PR+ 6.5cm tumor Her2 neg 10/19 pos lymph nodes Dx 1/5/2011, ILC, 6cm+, Stage IIIC, 10/19 nodes, ER+/PR+, HER2- Chemotherapy 4/11/2011 AC + T (Taxol) Radiation Therapy 9/14/2011 3DCRT: Breast, Lymph nodes Hormonal Therapy 4/14/2012 Arimidex (anastrozole) Surgery 6/3/2013 Mastectomy: Left; Prophylactic mastectomy: Right
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Jan 15, 2019 02:54PM vlnrph wrote:

Yes, do be a good advocate for your big sis! Especially in dense tissue, ILC can be difficult to detect.

If her insurance doesn’t want to OK an MRI for some reason, she should pursue an appeal. I had a denial on one of my initial follow-ups but then won when I presented my case before their committee. Sometimes I think they say no at first and figure most people will just quit. After all, one way they make money is to not pay benefits...

With another possible diagnosis in the family, has anyone suggested genetic counseling?

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 31, 2019 02:47AM beth1965 wrote:

oh this is scary for you for sure I think some how some way i agree she needs further testing especially if there are any symptoms. I had mammogram and ultrasound for 10 years as I had a pain nothing showed I found mine by the fast growing lump literally popping out of chest and even then regular tests showed nothing. Sneaky ILC as you already know likes to hide and you having breast cancer should be enough reasons to recheck or do other tests MRI I think just to be sure. Hopefully there is some way to get the MRI or even a very highly qualified ultrasound tech whom can take lots of extra extra time. Hopefully you can find a way

Dx 1/18/2012, ILC, 6cm+, Stage IIIC, Grade 3, 17/25 nodes, ER+/PR+, HER2- Surgery 2/2/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012 Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 11/8/2013 Aromasin (exemestane)
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Jan 31, 2019 03:05AM Jenkins00 wrote:

I didn't have a lump and I had dense breast tissue. The only reason mine was detected is I had a 3D mammogram. Ultrasound didn't pick up anything. ILC is very sneaky. I do hope she is able to get further testing. Good luck.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/27/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/14/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/24/2019 Femara (letrozole) Surgery 7/24/2019 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 31, 2019 06:54AM Denise-G wrote:

I understand your pain about your sister. My sister was diagnosed 3 years after me (with our mom's diagnosis in between).

My sister had very dense breast tissue. The ONLY reason they did a biopsy (mammo and ultrasound came back negative) was because of family history. I thank God for that radiologist every day. My sister was diagnosed at Stage 3C. Thankfully, she is 4 years out and doing well.

I hope your sister takes your advice!!

And as for genetic counseling, I was first one diagnosed with no previous family history. Then my mom. She had what they call "old lady cancer" and they had no reason to believe ours was connected and it wasn't. But when my sister came along, we all had genetic testing. My sister and I have a Chek 2 mutation which came from our dad's side of family. Our mom was the luck of the draw.

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)

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