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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 07:49AM - edited Dec 7, 2008 09:49AM 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 6, 2007 10:26AM notready wrote:

My husband found something in my right breast and said "what's this?". That's how it began with those two little words. It was not a lump, but a thickening. This was near the end of August, 2005. I saw my GYN doctor in September and she felt it and ordered a mammogram & ultrasound. I had these done and was told by the tech (after the radiologist looked at the films), that it was just a cyst. I went on vacation and when I came back, there were messages from my GYN doctor to call her. She did not like the report and wanted me to see a breast surgeon. I went to one (that I knew) & took my films, and he said you can't see anything on the films, but he didn't like what he felt (in the meantime I got a letter from radiology about the mammogram and ultrasound, stating that it was probably a cyst, but to have another one in six months). The surgeon put a needle in the area in the office, and got a little piece of tissue and sent it to pathology. That came back negative but he was pushing me to have it taken out. I didn't really want to and argued with him about it, but he talked me into it. I had the biopsy and it came back lobular ca. (ER+,PR+), and he hadn't cleared the margins. It was very small and they didn't feel it had spread so they were only talking about radiation at this point. Had the lumpectomy end of November and sentinal node biopsy. One out of three nodes was positive. They wanted to go in again and take out more nodes but I said no, because it wasn't going to change the recommended treatment at all, and I didn't want to increase my risk for lymphadema. I started chemo in Jan, 06 (6 cycles of TAC), and then radiation to breast and axillary area for 34 treatments. So far, so good. Needless to say, if it weren't for my wonderful GYN doctor and breast surgeon, it could have been a very different story.

Dx 11/11/2007, ILC, 2cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2-
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Jul 6, 2007 11:58AM wallycat wrote:

My mammos have been clear since I was 40.
I was having very vivid breast dreams for 3 nights and finally rolled over and thought maybe it was an omen to do BSE (which I don't like doing because I was very fibrocystic).
When my hand went over my right breast, I got an odd feeling. There really wasn't anything to detect, but my gut said dig and find out why you are feeling these "gut" instincts.
I went for my annual mammo (2 months late) and they said it was perfectly normal.
I told them there was an area of concern for me so they gladly did an ultrasound. The radiologist said there was a tiny shadow too small to biopsy so they would send me for a breast MRI. The MRI located a different area from the ultrasound, 9mm. I was asked to go back and have the new area ultrasounded. Nothing.
Back to the breast MRI for a needle guided biopsy.
Lobular cancer. The image showed 9mm but it turned out to be 1.8cm.
My breast surgeon said there was NO WAY the human hand could have felt that tumor---size, location, lobular and with a perfectly clear mammo, he would have been comfortable sending me home. He has NO IDEA what made me dig for this. Frankly, neither do I...just a gut/dream "feeling" about the whole thing.
Even the radiologist doing the biopsy said that looking at the MRI, she doubted it was cancer...3% chance were her words. She cried when she phoned me with the news.
I had a lumpectomy and SNB. My surgeon thought bilaterals were too drastic. After all was said and done, he said if it was what I wanted, he would do it....22 days out today.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 6, 2007 01:09PM conniehar wrote:

I had had 3 clean mammos, but discovered a "thickening" one day in Dec 06. Went in for another mamm - normal. Then went for ultrasound - this was also normal, but the techs had the radiologist come in and she felt my breast. She agreed that she could feel something and suggested a biopsy. I then went to a breast surgeon who sent me for an MRI. The sneaky lobular finally showed up there. I had a core biopsy and was told it was ILC on 3/8/07.

Had left breast mast. on 3/21. Tumor was 10 cm (my breast also shrunk,Lynn). Had 1 sentinel node with micromets - all other 11 nodes negative. Had port inserted on 4/16. Started chemo on 4/20. I am in a clinical trial - 15 weekly doses of AC, then I move to 6 bi-weekly taxol treatment. Then on to rads.

I am currently considering removing my right breast when all this is over.

Thanks for starting this thread!
Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jul 6, 2007 04:48PM nash wrote:

I am recently diagnosed, so I don't have a full picture of everything yet, but I'll share what I know so far.

I just turned 39 years old, have two young children, and my mom has Stage IV IDC HER+++. So I've been well educated on her type of bc, but had never heard of lobular until now. I had a baseline mammo at age 37, which they read as normal (ha!). This past May, I decided to do a BSE, which I hadn't done in a few months, and my hand went straight to a hard lump in my left breast. I knew right away it was malignant.

I called my OB/GYN, and the idiot girl at the front desk told me it would be six weeks before doc could see me. I pushed, and his nurse ended up calling in an US for me w/o me having to go in. The US lead to the core biopsy in the beginning of June, which came back ILC, ER+ PR+ HER2 neg.

So I've been spending the past month getting scanned in an assortment of ways. So far, there are four estimates of the size of the tumor--the US said 1.2cm, the surgeon (by feel) says 2.5 cm, the CT says 3 to 4cm, and the MRI says 4.8cm (and includes the observation by the radiologist that there are no clean margin between the tumor and the chest wall).

This size discrepancy has lead to much disagreement between the oncologist and the surgeon, and agonizing on my part, on whether to do neoadjuvant or adjuvant chemo. I've finally settled on adjuvant, and am tentatively scheduled for surgery July 19th. I decided to put my faith in the surgeon's assessment of the tumor, and I'm optimistically going in for a lumpectomy. I figure they can always take more off if necessary--they can't put it back on, though!

I'm also waiting on the results of my BRCA testing. If it's positive, the docs want me to also have my ovaries out b/c of the 50% chance of ovarian cancer. This suggestion has also caused much agonizing on my part, and I really can't say I'm comfortable with surgical menopause at age 39. If the BRCA is positive, I plan on meeting with a gynecological oncologist to discuss other means of ovarian cancer risk management.

The plan for after surgery is radiation, then TAC.
Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel 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) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jul 6, 2007 04:59PM gracejon wrote:

I went for a routine mammogram. The year before I went closer to home at a outpost of the same health system and decided I would never do that again since it was the fastest and least compressed one I had ever done. I went back to the main facility. I hadn't heard any report and got nosy (work in that health system and pulled up results). It said I needed return for additional views. When a few more weeks went by and I still had not been notified, I called the imaging center for results. They looked it up while I was on the phone and said "Umm, someone will call you back" A nurse called back and said I needed to schedule more views. It took another week or so to schedule. At that test the radiologist said I would like to ultrasound this spot. At the u/s she said I needed a biopsy and could I come back in an hour. I had a core needle biopsy that day and a week later radiologist phoned and said you have breast cancer. I had symptoms of pain but had previously been told not to worry about breast pain. I also had noted that the breast appeared to have gotten larger. I had a bilateral mastectomy with LCIS, ADH and ALH in non cancer breast along with LCIS and ILC in other. I had chemo course and no radiation. BTW, I then received a postcard in the mail to call to come in for more views. About another 4 weeks went by and I received another postcard saying the second mammogram was normal and come back in a year for a routine screening mammogram.

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Jul 6, 2007 05:53PM jpsgirl96 wrote:

Great idea. I went for a routine mammogram in December 2005 and they found some calcifications, left breast. After consultation with a breast surgeon, had a stereotactic needle biopsy in January 06, found DCIS with micro invasion of ductal cancer. Because I have large, dense breasts, breast surgeon sent me for an MRI. MRI found more suspicious stuff in left breast AND some suspicious stuff right. Ultrasound also showed the stuff on the right, so had multiple biopsies mid-January 2006. All clear EXCEPT one place - ILC in the right breast. Bilateral lumpectomy and entinel node biopsies early February 06 - no node involvement left, sentinel node positive right. Axillary node dissection in early March - 5/15 additional positive nodes. Chemotherapy (TAC x6) March to July, bilateral radiation (about 17 'tatoos') August-September 06 (30 plus 3 boosts). Tamoxifen since October 1, mammograms and MRI in January 07, all clear - next mammogram and onc and surgeon visits this month. Feeling well, hair is finally losing its post-chemo curl, though still salt-and-pepper.
I'll be 51 August 20 - no biological children, not much family history (maternal aunt had post-menopausal IDC), feel that the DCIS was a blessing since without it, the ILC would have been found much much later - too late, probably. Thank my guardian angel every day that my breast surgeon ordered that MRI.
Leigh
Dx 1/15/2006, ILC, Stage IIIA, 6/16 nodes, ER+/PR+, HER2- Surgery 3/1/2006 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel, Underarm/Axillary Chemotherapy 3/23/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/1/2006 Breast
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Jul 6, 2007 08:02PM suzie14 wrote:

I discovered my lump when I rolled over in bed at 2:30 a.m. Thursday, May 19,05. Twelve hours later I was in the clinic scheduled to see an NP. Before I got seated, the tech came out and said since I found a lump they set me up to see a GYN doc instead (my usual GYN was off that day).

The GYN I saw said she thot it was just a cyst but wanted me to get a diagnostic mammo and u/s anyway.

I couldn't get in until that next Monday. The radiologist wanted to do a biopsy right away but because I was taking Vit E she wanted me off that for a few days. That Thursday (the Thursday before Memorial Day week-end) I had my biopsy. ON MEMORIAL DAY the radiologist called me at home and told me I had cancer....ductile! (For some reason there was a major typo or major error in declaring it ductile. I found out at my 1st appt with my onc that it was lobular. Some mistake, eh?)

On June 27, 05 I had a left mastectomy, scheduled for 11:30 a.m. One node had micromets. Total size of my tumor was >5cm (3 of the 4 quadrants in the left breast had ILC....glad I decided to go with the mast!) Twelve hours later I had to have emergency surgery because I was bleeding internally. My surgeon is the best and without her quick arrival at the hospital I would more than likely be in much worse shape than I am today.

I started TAC in August '05, finished in November and began a series of 28 rads in December. Took my 1st dose of Arimidex at the end of January, '06.

If I knew then what I know now I would have had a double mast because of the sneakiness of lobular. I won't sign up for a prophylactic mast, though!!

There is NO history of BC in my family. Weird, isn't it?

Thank you for this thread,
suzie
Dx 5/30/2005, ILC, 5cm, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 8/3/2005 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/8/2005 Breast, Lymph nodes Hormonal Therapy 1/31/2006 Arimidex (anastrozole)
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Jul 7, 2007 04:52AM shrink wrote:

ILC was one of 4 cancers in my right breast detected in my pathology report. I asked the doctor how it was possible to have so many in one relatively small breast. He said it wasn't all that unusual and the treatment for all is the same. ACx4 and Tx4 followed by mast, maybe more chemo and radiation followed by I forget what. I'm Stage III since my tumor is 6 cm and the possibility of IBC exists, this is being treated agressively. No spread to major organs but 3 nodes look "suspicious". Looks like I'm in for the long hawl. But the tumor shrank quite a bit after my first treatment and side effects have been minimal.

Dx 5/23/2007, IBC, 6cm+, Stage IIIC, Grade 3, 21/21 nodes, ER+/PR-, HER2-
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Jul 7, 2007 05:07AM Lisa9753 wrote:

Wow susie, that's all I can say.

I thought what I had was quite weird. I had a 3.5 cm tumor, and everyone thought what I was feeling was a cyst too. Turns out we were all feeling the tip of one of the invasive parts of my tumor. So ultrasound picked it up, the mamo didn't even see it. I did six months of chemo to shrink the tumor, Adriamyacin, Cytoxin and Taxotere(allergic to it) so switched to Taxol. It killed off my tumor, by surgery all that was left was a pile of dead cancer cells. But after surgery, I found out a separate quadrant of my breast, away from where the tumor was, was full of LCIS. Boy am I glad I had not only the mastectomy, but a prophylactic mastectomy on the other breast. I reconstructed afterwards, had latissimus dorsi reconstruction, and have experimental devices as implants -the Cohesive Gel Silicone, or nicknamed gummy bears. I love my reconstruction and am glad to have reduced my chances of recurrance from 20%+ down to 1%
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Jul 7, 2007 07:34AM qhlisa wrote:

In November 2006, I underwent bilateral breast reduction. I had been suffering from thoracic outlet syndrome for years. Annual mammograms since age 35, with no abnormalities (other than very dense, large breasts). The pathology from the reduction came back showing a .7 cm ILC, and LCIS, pleomorphic type on the surgical margin from an unknown location in my left breast. Due to the reduction, I was not a candidate for diagnostic imaging, and I underwent bilateral mastectomy with SNB on left side. I was very fortunate that the SNB was possible, and that my breast surgeon was willing to try it. Due to the reduction, my doctors thought it was very unlikely that the lymphatic pathways would be intact. The SNB was negative, and after I healed from my surgeries (a whole 'nother story), I began tamoxifen. (My tumor was highly ER/PR positive, HER negative), and ended up being less than 1cm.

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Jul 7, 2007 10:04AM 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 03:17PM 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 04:51PM 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 09:25PM 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 09:33PM 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 11:29AM 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 06:35PM 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 9, 2007 11:00PM 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 09:49AM 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 11:53AM 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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Jul 10, 2007 01:26PM nash wrote:

I've read in many sources that with any mastectomy there is something like a 5% chance that the cancer can come back either in the chest wall or any stray breast tissue that was left. Here's a link to a great website about cancer risk management that discusses the issue:

http://www.facingourrisk.org/risk_management/mastectomy.html
Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel 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) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jul 10, 2007 01:36PM marshakb wrote:

Connie, this shows 20-29% chance of mirroring. I have read the 30% many places also. 30% is alot!! Marsha

http://breast-cancer-research.com/content/6/3/R149
I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 10, 2007 01:55PM awb wrote:

If bc has invaded the lymph nodes, it has the potential for distant metastases; usually to 4 areas--bone, lung, liver and brain; it doesn't usually "spread" to the other breast. But lobular bc is often found to be bilateral, I've also read about 30%, so many women choose bilat. mast. to decrease their risk of having it happen in the other breast.

"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 10, 2007 04:53PM sandyb1938 wrote:

I was recently diagnosed with a 3rd Breast Cancer. The first one in 1995 was treated with Lumpectomy, radiation and Tamoxifen (Left Breast). Second diagnosis (Right breast) was Lobular cancer in 2001 - Lumpectomy & radiation and Arimidex. Third is a recurrence of Lobular Cancer (right Breast). I can't be radiated again in any breast now. My surgeon didn't think it was cancer so he didn't take enough out during the lumpectomy 3 wks. ago. He ordered an MRI to see if he removed all of the cancer (which he didn't) and suggested Mastectomy as the standard procedure. But he said I am a candidate for another operation to remove more of the cancer (which was there after the MRI), Herceptin and Chemo, plus remove some or all of the lymph nodes. I am 68 yrs. of age andd I really need some advice from someone who has gone thru this. If I decide to have the mastecomy will I have to have chemo also and have some or all of my lymph nodes removed?

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Jul 10, 2007 06:46PM wallycat wrote:

Hi and welcome.
I'm curious if your first BC (left breast) was lobular as well.
Herceptin use implies that your tumor is Her2 positive and if you were on tamoxifen the first time out, it means you were ER + but you didn't mention any chemo so am assuming not HER2 + .
Chemo is based on many things---size of tumor, lymph involvement, age of patient (usually the younger the more apt to use chemo). Lobular tends to respond better to tamoxifen but you said you were on tamox and it still came back, so not sure if they would have you on hormone therapy.
There is a new test called the OncotypeDX which tests your tumor and its genetic markers to see how receptive your cancer would be to chemo--your oncologist can order this for you to help in your decision making (unless your tumor is so large and there is node involvement).
Best to you...
I am very sorry you had to deal with this 3 times.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 11, 2007 09:14AM sandyb1938 wrote:

Thanks so much for your reply. The first cancer (left breast) was not lobular - it was something with ductal in the name, sorry can't remember. I was on tamoxifen for 5 yrs. Then about 2 yrs later after stopping the tamoxifen, I was diagnosed with Lobular on the right breast which was next to the nipple. Now this one which is about 5 or 6 yrs. from 2nd surgery and being on Arimidex for 5 yrs. My surgeon told me to stop taking the Arimidex since this last diagnosis. I am scheduled for another lumpectomy on 7/25 since he didn't get all the cancer 3 wks. ago. I wish someone can advise me the best treatment. I really don't want them to take all my lymph nodes - he is planning to try for the centinel node and said if he can't find one, he will take them all. Any time I had my nodes taken, there were none positive. Being 68 yrs. old and not doing anything radical, what would my life expectancy be? I am not doing well with this.
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Jul 11, 2007 12:50PM wallycat wrote:

Ask your doctor to run www.adjuvantonline.com for you (or you can sign in as a professional and do this yourself.) You plug in some of your statistics, though not all of them, and it will calculate for either recurrence or mortality (which ever you pick). There is a second database attached to it for the Genome portion which you can use if you get the OncotypeDX and have a score...plug in your score along with the stats and you should get more refined statistics.
Your doctor has access to all of this and can assist you.

I opted for bilateral mastectomy because I didn't want rads. My onco score was a 20. I would get 2% benefit from chemo. I am 50. I opted out of chemo and because of mastectomy, no rads.
I'm on my 3rd day of tamoxifen and no side effects yet...maybe I am the 1 in 8 who doesn't process it well. I was nervous to take the med so that was another reason I opted for the mastectomy--incase i chickened out of further treatments.
Do you have family or someone close you can lean on during this time. It is so stressful, I know. I was a basket-case when I first came on this BB and there were some wonderful "virtual hand-holders" that got me through the worst of it.
I still worry about recurrence, but I am able to sleep at night and my recovery from bilaterals is coming along well.

If you are not comfortable with your doctor and his recommendation, you know you are allowed to seek a second opinion; sometimes even a third. Finding doctors you can count on and trust is an important part of this journey as well.
Best to you! We are all here, sisters in the fold, ready to help if we can.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 11, 2007 04:00PM sandyb1938 wrote:

Thank you. Do you think I should consider bilateral mastectomy? I really do not want chemo or herceptin. Also, if I decide on mastectomy, how long is the healing process. I am scheduled to go on a cruise to Alaska on 9/8/07. I don't want to reschedule the cruise.

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Jul 11, 2007 05:59PM conniehar wrote:

You will be fine by September. I had a left breast mastectomy and took 3 weeks off of work. I was ready to go back in two weeks. I was surprised how quickly I felt better. The worst part is the drains - once those were out I felt a lot less pain.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jul 11, 2007 07:55PM wallycat wrote:

Herceptin is used if you are HER2 Positive. The reading I have done here seems to imply that HER2 positive is a more aggressive cancer. If you are not ER+ then running the adjuvantonline won't help because it is geared towards ER+ tumors. I would discuss strongly with your oncologist. Did you have positive nodes?

I had my bilaterals and am about 3-1/2 weeks out. I went to work 2 weeks afterward. I think at 4 weeks, you will hardly remember what it is like to have had boobs .
My doc was a bit confused and upset that I did not need or want pain meds after surgery. I only had a few days into week 2 that things started to feel tight and raw and noticeable, but not excruciating by any means. I could have taken a pain pill then if I had thought of it, but the pain didn't last long...came in waves sort of and I thought the pain meds the Rx me were overkill. Finally decided to take one ibuprofin to take the edge off and that was fine.

The hardest thing for me is these cords/string-like things that developed, especially on the side that had the initial lumpectomy/SNB. My surgeon said this is common and usually from disturbing the lymph nodes. My left arm doesn't have much of anything to complain about.
If you schedule in July, by september, you will be at 95-100% your old self.
I personally--and we are all different---would discuss the herceptin issue with your onco.
Find out the full pathology and report back

If you are nervous about surgery, you can talk to your surgeon if timing after your cruise would be better...i hate summer so I wanted mine done when I didn't care if I ended up sitting inside at home for a few days (or even weeks!).

Best to you!!
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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