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 08:49AM - edited Dec 7, 2008 10:49AM by Lynn12

Posted on: Jul 6, 2007 08:49AM - edited Dec 7, 2008 10:49AM 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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Jul 7, 2007 11:04AM LizM wrote:

My story starts in 2004 although I wasn't diagnosed until 2005. In Oct 2004, mammo showed some calcifications. Had steriotactic biopsy which showed atypical ductal hyperplasia (ADH), then had surgical biopsy which showed atypical lobular hyperplasia (ALH). Fast forward to Sep 2005. Had diagnostic mammo and ultrasound requested by breast surgeon due to ADH/ALH. Mammo was clear but ultrasound showed suspicious mass. Ultrasound guided biopsy showed invasive ductal (IDC), grade 2. IDC was thought to be multi-focal at 1.4 cm and 3 mm. Opted for bi-lateral mastectomy with immediate reconstruction due to dense breasts and mammo missing cancer. Bi-lateral mastectomy in Oct 2005, left breast: 2.1 cm insitu and infiltrating mammary carcinoma with ductal and lobular features (IDLC), grade 1 with one pos node out of 8. Strongly ER/PR pos and her2 neg. Right breast: ALH so noncancer breast would have probably cooked up the same thing down the road. Had dose dense chemo AC/T and radiation to chest wall, auxilla and supraclavicle nodes. Was 49 and premenopausal at diagnosis. Chemo put me in chemopause. Started Tamoxifen in Apr 06 before rads and after rads had an oophorectomy and started Arimidex. Have been on Arimidex for a year. My sister was diagnosed with breast cancer a year and a half before me, also stage II with one positive node and the same size tumor, which we both think is weird. I had genetic testing done and tested negative for brac 1&2.

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Jul 7, 2007 04:17PM dawnjs5k wrote:

It seems as if my journey has been going on forever, but it has only been since April. My mom was diagnosed with stage IV IDC on March 26, 2007. She had been hiding it from the family for over 2 years. We all knew something was going on, but she denied it. After her first appointment with the oncologist, I had an urge to go for my first mammogram. I was scheduled for April 10. At 37, I went for my baseline mammo. I was told at that point that I had 4 areas of suspicion on the mammo. I was all by myself. I was scared out of my mind. On April 16, I went for biopsies on all 4 areas. I was supposed to get my results back on the 18th, but they were delayed for more testing. On the 20th, I went in to find that one of the areas was consistent with an ILC. I met with the surgeon on the 24th and she asked that everything be sent for a second opinion. They sent the suspicious biopsy to Mayo clinic and it came back on 4/27 as confirmed ILC. I went for surgery the next week. I was to have a wide excisional lumpectomy with a SNB. They missed the malignant area at that time. The SNB came back 0/3. I went back in for surgery on 5/23. At this time they removed the correct area. It turns out that my ILC was in a Fibroadenoma. The tumor was .8 cm total, but the inner .3 cm was the ILC component. It really scares me because the other 3 areas were diagnosed from the biopsy as fibroadenomas. I finally met with the oncologist last week and she wants the SNB and the other tissues sent for a second opinion before beginning any other treatment. At this time the suggestion for treatment is radiation and Tamoxifen. I had the BRAC testing done and it came back negative. The wierdest thing about this is that my mom has had issues with "fibrocysts" since her early 20's in her right breast. I found my first area when I was 21 and was always told it was a "fibrocyst" also on the the right side which is the side with the ILC. My sister also just a large area removed and the called hers a fibroadenoma. It was also on the right side. It is just amazing how this all works. I am so hopeful that the second opinion on the other tissues will come back fine. I just don't know if I can handle another surgery this quick. Thanks for sharing your stories. It seems that we all have weird things that happen.
Dawn
Stage I ILC ER/PR +. Rads completed 9/13/07 and soon to start Tamoxifen. Dx 4/27/2007, ILC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 7, 2007 05:51PM scarednancy wrote:

Hi,
I went for a routine mammogram in October of 06 by myself. I had been examined by my OB/GYN two weeks prior to this with a good pap test and breast exam. They did the mammogram and then came back and said they needed another picture of my left side. So they did another one and I waited 20 minutes for the tech to come back and say the doctor doesn't like one spot and wants an ultrasound. So I moved to another room and the nurse couldn't find anything on the ultrasound. About that time a young doctor came in and immeditately found the spot and told me he wanted to biopsy it right then. Remember I was by myself and by this time crying uncontrollably. He performed the biopsy and the nurse was comforting me by telling me 80% of them are nothing. He turned and looked at me with his cold blue eyes and said, "I think yours is cancer". That was on a Friday and I had to wait until Monday to get my results. I meet with my OB/GYN and she said I have IDC and need to see a surgeon. I completely fell apart and didn't work for 2 weeks which was the amount of time it took to get into the breast surgeon. She told me that her lab ran the biopsy again and I have ILC. She told me she wanted me to have blood tests, chest xrays and MRI's on both breasts prior to surgery. Since they didn't find any additional problems with the MRI and tests she did a lumpectomy and SNB. My tumor was 1.1 cm, ER++, PR-, clear margins and nodes. They sent my tumor in for the OncotypeDX test and I scored a 9 so the oncologist said not to get chemo. I have had 34 radiation treatments and been on Tamoxifen since February. I will see my oncologist for the first time since starting Tamoxifen on Tuesday. I drive myself crazy trying to feel for lumps. I really don't think anyone could have found the last one without mammograms. I was 49 when dx in October and turned 50 the week of surgery. All I want is 20 more years to see my kids marry and have grandkids. Is that too much to ask?
Nancy
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Jul 7, 2007 10:25PM halika wrote:

I was diagnosed in May 2005 at the age of 47. I have had clean mammos since the age of 35 ( a benign biopsy at 35). My last clean mammo was January 2005. I had breast reduction surgery in May 2005. This is when my ILC was discoverd. My PS told me the news during my follow up visit.

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Jul 7, 2007 10:33PM halika wrote:

I forgot to the add the specifics to my original post. The tumor was .9cm, stage 1, neg nodes.. ER 100%, PR - and HER-2 - . No Chemo or radiation since I opted for the mastectomy. Currently on Tamoxifen. I am just now getting my permanent implant on July 17th, 2007. I have to get the expander removed so I can have a MRI.

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Jul 8, 2007 12:29PM Ihopeg wrote:

I was diagnosed on November 10, 2006. I had felt a lump in my rt breast a few weeks earlier. (I had clean mammograms in March). My gyn sent me for new mammos, and while I waited for the results, a women came in to me and had a name tag that said oncology navigator. At that point I knew something was wrong. I was then taken for an ultrasound. After the tech was done, she sent in a radiologist to also do both breasts. He told me that there were three tumors located in different parts. The navigator then took me to a room to make an appt with the surgeon. Three days later, after the surgeons appt, they took me to have ultrasound-guided needle biopsies. The surgeons office was supposed to call on a Friday, but of course did not. I was at work when I got a call from my gyn saying that "I guess you got the news from the surgeon". I said, no, but I guess you are the bearer of the bad news. I had four tumors and had to have a mastectomy, chemo and then rads. After the surgery and SNB which the surgeon thought would be negative, The path report said that the tumors were all bigger than 2 cm and were ILC. The SNB said that 17 of 18 nodes were positive!! I wish the surgeon would have atleast given me the option of having a bilateral, but did not. After that, I had what seemed like 20 tests that all came back with something wrong. I had a hot spot on the PET scan in my thyroid so I had to have biopsies there, that were worse that anything else I have had to endure.(Luckily they were not cancer) I had 6 treatments of TAC, then 22 rads. Now, the onc wants me to have my ovaries removed because I am ER/PR++, HER2-. She said that way I can go on a post-menopausal hormone instead of Tamoxifen because she doesn't know if I am in menopause yet. (I am 46). I did have the genetic testing done and am waiting for the results.

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Jul 9, 2007 07:35PM Ihopeg wrote:

I just wanted to add that I got the results of the BRCA1 and 2 and I am negative!!! It is great because I have a 17 y.o. daughter, and now I don't have to worry about her gettinig BC from me.

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Jul 10, 2007 12:00AM FrannyK wrote:

Gals, In january of 06 i noticed a dent in my right boob. I thought it was weird but couldn't feel any lumps or anything...attributed it to turning 50..gettin saggy?? My hubby said get it checked but i kept postponing my annual checkup (in back o my mind i was scared)..finally made appt for july 27. Doc ordered a diagnostic mammo for the following week..and again..the mammo shows nothing..but they follow with u/s and there it shows up. They thought it was 2 lesions around 1.5 cm..MRI shows it's a big tumor 6 cm + a 1.5 cm. I had mastectomy..one node positive...ILC er/pr+, IIIA, her 2- Had TAC chemo x 6, 33 rads..now on Aromasin. Finished rads April 4. Had PET/CT and bone scans and all's looking good!!!! Looking forward to Sept 10 DIEP surgery..gotta get this iron boob expander out..i'm sick of it.
I see things differently now~Fran dx 8/06 ILC stage IIIa 1/11 nodes Mast/Chemo/Rads/DIEP
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Jul 10, 2007 10:49AM tmn58 wrote:

Hi,
I had a thickening in my left breast that would come and go for a long time. I was told if it came and went - not to worry. Wrong!
I went for a 'routine' annual with my Ob-gyn in January '06. He was very concerned when he felt it. He ordered a mammogram, u/s and biopsy. The mammogram came back clean - the technician told me "it couldn't be cancer - it's soft". The ultra-sound found it right away. They told me right then it was cancer. Had the biopsy the next day. ILC, 3B, er/pr+, her2-. Big tumor. Had the mastectomy on March 7th. 15 out of 17 nodes were positive, tumor was 8cm. Had bone, CT scans and all were clean! Just finished chemo: 4 AC followed by 3 Taxol (couldn't do the last one due to allergic reaction). Radiation will start in a few weeks followed by Tamoxifen.
I thank God for my OB-GYN and God's assurances that I will be fine!
I was told that a bilat was not necessary as there was less than 1% it would spread there. They also said that a bilat would not prevent it from going there. Has anyone heard differently?
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Jul 10, 2007 12:53PM conniehar wrote:

That's interesting that they said 1%, because the number floating around on these boards is 30%. I think the difference is that there is a 1% chance of it "spreading" there, but there is a 30% chance that it will "mirror" itself in the other breast at some point. I'm not sure where the 30% number came from.

I had a single mastectomy - my tumor was larger than yours (10cm) but I didn't have lymph node spread. My surgeon didn't want me to have a bi-lat because he wanted to get me into chemo as soon as possible and didn't want to worry about any healing issues with the other breast. I am probably going to go back and have the other breast removed when this is all said and done.

I don't know about the statement about a bi-lat not preventing anything - that sounds strange.
Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-

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