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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Jul 11, 2007 05:11PM karen1956 wrote:

I went for my annual mammo in January 2006. the tech who did the mammo told me that they needed to get another view as they could not see everything. She was so calm and matter of fact I was not the least bit worried. Three days later I got a called back to come in for a spot compression mammo and ultrasound - now I am WORRIED!!! I had several mammos and had never been called back before. I had been for my annual gyn exam the month before and gyn didn't feel anything. Ultrasound found two suspicious spots and I was sent for a biopsy. On 2/3/06 I was told that I had BC - ILC and IDC. Then sent for MRI. MRI light up another spot on the right breast, lymph nodes and something on the left breast so sent for more biopsies. Three places of cancer on right breast plus lymph involvement. Told left was cyst. My journey has begun looking for breast surgeon, plastic surgeon, oncologist and tests and more tests. Bilat mastectomy was recommended by the two surgeons I interviewed, so that is what I decided to do - and thank goodness as the "prohy" side came back atypical lobular hyperplasia. Axillary dissection revealed 8/12 positive lymph nodes. TAC chemo followed mastectomy, then radiation, ooph, AI's (first Arimidex, then Femara) then tried Tamox, and now on Aromasin after a 3 week break from all the meds. Recon (expanders removed and gel implants put in) in March and more recon to fix the radiated side in a couple weeks. I am currently NED. BRCA testing is negative, so thank goodness my girls are not at such a high risk, other than the fact that their mother had BC. 4 more years to go on AI's. First person in my family to have BC!!! I pray that one day, there will be not only a cure, but a prevention so that no other women will have to journey down this road. Karen in Denver

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jul 13, 2007 01:01PM MsMonty wrote:

I have a strong family history of BC..lost my mom, her sister and two first cousins both of them younger than me to this disease. So I have had annual mammo's with my pap smear since I was 35.

In Dec 04 while doing my breast self exam I noticed a thickened area on my upper left breast. I always went to my OBGYN in Jan so decided I would wait until then. I did not have my normal OBGYN because she had a baby. I told the OBGYN that I had concerns about my left breast. She said 'feels like normal breast tissue' but have them mark it when you get your mammo. I did have them mark it and two weeks later got the all clear letter. I wanted so much to stick the letter in my medical file and move on but just could not.

I called my OBGYN again and said I was not satisfied and wanted more. My regular OBGYN was now in and she said she wanted to see me. Again I heard 'feels like normal breast tissue to me' and I said "NO". Given my family history she made the appointment for me to see a breast surgeon for a biopsy. The breast surgeon said "feels like normal breast tissue to me". As I was leaving her office, however, she said "I would not lose any sleep over this BUT I did see some shadows". They said to call the next day after 2 for the results.

I called a little after 2:00pm on March 30, 2005 and heard the news, "you have invasive lobular carcinoma".

My tumor was 6CM and I started neoadjuvant chemo AC/Taxotere on April 14th. I had a bi-lateral mastectomy on Oct 7. I am grateful I had the bi-lateral as I had atypical lobular hyperplasia in my right breast as well.

Here are my stats:
Diagnois 3/30/05 ILC left breast, 6cmx4cm ER+/PR- HER2- grade 2, stage 111a Neoadjuvant chemo 4/14-8/10 DD AC/Taxotere,10/7 bi-lateral mastectomy w/tissue expanders, lymph nodes 0/13, 11/30 implant exchange, rads 12/14/05 - 1/24/06

---------------

All is currently well at a little over two years out. I had revisions on my implants in Feb and while I was at it decided to do something for ME. I had a tummy tuck and am happy as I can be about it I had nipples last month and will have tattoo areola next month.

For you newbies, rest assured life can return to normal.

Sharon
Dx 3/30/2005, ILC, 6cm+, Stage IIIA, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Jul 16, 2007 02:12PM snicklefritz wrote:

Hi- I was diagnosed with invasive pleomorphic lobular carcinoma in December 2003 at age 44. I had no clue there was even a lump because my doctor did not feel it. Had a regular mammogram and was very lucky that it showed up when it did. It was 2.5 cm and long and skinny, like a pencil. The surgeon had a hard time finding it! One positive lymph node, ER and PR positive, her/2 negative. Had dose dense chemo, 4 rounds of the AC and 4 of the Taxol. Now am taking arimidex.

What I find encouraging now is that the Adriamycin might not be given nearly as frequently in the future because some of the research seems to show that Taxotere plus Cytoxan might be just as effective. I sure hope so. The hair loss and the physical sickness caused by the Adriamycin was the worst for me.

Best to all, Mary Jane
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Jul 18, 2007 08:02AM LauraGTO wrote:

Hi Girls -
In November of 2004 I had my annual GYN visit. I mentioned to my GYN (male) that each month when I got my period, both breasts usually became sore and swollen, but that for the past 6 months, the left breast was no longer affected by this and that it was in a way, dormant. I joked and said "I think the left breast died!". He didn't seem to think it was anything to be concerned about, palpated both breasts and said everything seemed fine. (I always had very dense tissue and lots of cysts.) Then 6 mos. later, in May of 2005, I did a bse and found a pea sized lump in the left breast. Instantly, I had a gut feeling it was cancer, it was hard and most of the cysts I'd had were soft. My dh's Mom died from bc - we were both very concerned. The following week the GYN felt the lump. I was due for my 5th annual Mammo (started having Mammos when I turned 40). A week later I noticed a dimple in the spot where I had found the lump. Had the Mammo...the Radiologist said the lump didn't show up, but because it was palpable they did 8 additional views. A "suspicious" area then showed up so I had an US. The US showed 2 "suspicious" areas so I had a core biopsy. During the core biopsy, the Radiologist had a tough time penetrating the larger tumor because it was as hard as a rock, he jabbed it 15 times trying to get a core. The procedure was horrible! During it he looked at me and said, "this is not a cyst - this is really bad". I freaked out, the room started spinning, I was numb! He said I would get a call in 2 days with the results. I could barely walk out to my car. My knees were weak from fear, and a huge Hematoma developed from the biopsy and blood had saturated my blouse, the ice bag they put under my blouse had a leak and a chalky liquid was running down my legs, I was shaking, I could hardly drive...that was the worst day of my entire life. The next morning my dh took me to the ER because the swelling and pain was really bad. They said give it time. Later that night I asked my dh to come home early from work on the day they were scheduled to call with the results, because I didn't want to be alone. Sure enough...We got the call..."I'm so sorry, but you have bc. It's ILC - multi-focal". My dh was instantly, incredibly supportive and sensitive and kind and has been so = ever since. Literally for the next few weeks...we could not look at each other without crying and hugging. Had to wait 2 weeks for the Hematoma to go away (it swelled to the size of an orange) so I could have a Mast. along with a Sentinal Node biopsy. It was at this point that I asked my dh if I was going to die, and he said "not on my watch honey"...Unfortunately my Sentinal Node was positive and they found 2 tumors - 1 was 3.9cm - ILC and one was 1cm - LCIS. Both were er&pr pos. and both were her2 neg. (I had found the smaller tumor - the larger tumor was hiding behind the nipple and behind very dense tissue. I still think my GYN should have felt it during my previous yearly exams, and still wonder how he missed it.) Had an expander put in during the Mast. Because the SN was positive, two weeks later I had an Ax. Node Dis. - 11 of 11 were all neg. but I was having excrutiating pain from the expander so I had it removed during the Ax. Dis. Had 4 AC and 4 Taxol and 28 radiations (the only reason I had the radiation was because they were unable to get clean margins at the chest wall, although just micro, it was a pre-caution). The right breast continued to produce "cysts" and I continued to have US's and Mammos, so I decided this past Dec. to have a Prophylactic Mast. I couldn't live with the fear any longer. The pathology came back neg. for bc but showed that some cells had the potential of becoming cancerous...whew. I have chosen, at least for now, to not have reconstruction. I just don't think I can handle the pain. Don't know why, but I am hyper-sensitive to pain. After my first Mast. I had excruciating pain for 7 months! Tried every pain killer known to man-kind and only got minimum relief. Finally got pain blocking injections and that helped considerably. But...believe it or not...I still have some residual pain! This month marks the 2 year anniversary of my dx. So far...so good...but I worry about mets every day! I'm hoping my fear fades with time. I have been taking Tamoxifen for 1 year and 3 months. The se's are bad, but tolerable. It's great to know that all of you girls are here for support! Thank you so much! (Sorry this is so long!)
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Aug 1, 2007 03:02PM bbmom wrote:

I was 42 when I found a lump in my rt breast in Nov. 05. After a couple of weeks of continuing to check the lump to make sure I really had something there I called my doctor. I went for a mammo, got sent for an ultrasound and a week later I was in a surgeon's office. I had a biopsy 2 days before Thanksgiving and found out I had cancer that Friday. On 12/09 I had a rt mast., expander put in and my port for chemo. Path report came back ILC, ER/PR+, HER2-,14 nodes +. I was told stage IIIC. I had dd A/T/C starting on 12/30. I cried my eyes out New Year's day just thinking about what the new year was going to be like. I spent 8 days in the hospital for a staff infection after my first treatment. I took Neupogin shots every day for 8 days after each treatment and Procrit once a week. I finished chemo 6/15, started rads 2 weeks later and in mid August I started on tamoxifen. After discussing a prophy for the left with my surgeon and onc, both felt like it would be a good thing to do, I decided that's what I would do. On 11/27 I had a lft mast and bilateral DIEP reconstruction. My onc has told me he would change me from tamox to an A1 in a couple of years.

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 10, 2007 08:08AM harvey wrote:

Late 2005, my left breast go hurt by the seat belt when I done an emergency stop. I found a lump, about the size of a large grape, high up on inside of my breast. I thought it was bruising due to the belt cutting into me � I�ve had that before. Any the lump stayed and got a bit bigger fast. About 3 weeks later the same thing � I drive a lot in my job. Anyway, off I went to the docs who referred me to the local breast clinic � just as a per caution.
Two weeks later I had a mammogram �an ultra sound, that was scary I could see the mass in the breast. Then a core biopsy � 20 minutes later the results were back � I had cancer.
I was given the choice of a mastectomy or a WLE with radio therapy. I choice the mastectomy but was persuaded by the cancer nurse to be sensible and have the WLE.
Two weeks later I�m back at the hospital to get more results and a date for surgery � the lump is growing it�s now as big as a small plum and can be seen through my cloths. I was given the first free spot - St Valentines day 2006
Surgery went well � the scars are very light and tidy. Then came the bad bit - a stage 3 so chemo 6xAC � and 15 big shots of rads.
I finished treatment Nov 2006 � should have been on Arimidex but couldn�t take the side effects.
I�m back at work full time � driving just as much. I wish I had had the mastectomy. Less chance of any cancer left in the breast � plus no damage from the rads. I�m in constant pain as the breast tissue has been damaged my consultant says the only thing is a mastectomy after all.
If the glass is only half full - get a smaller glass. Now your glass is full again.
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Aug 12, 2007 03:24PM 1Cathi wrote:

My ILC journey began sometime in February of '06 while showering, there it was, and the only way I can describe the way it felt was it was a feeling as if a tiny pencil point had been placed under my skin and it was trying to work it's way out, left upper outer area. I knew right from the start it was wrong, but I was getting married in May to the most wonderful man I had met 4yr before after a 20+ year violent horrific marriage, I thought it could wait just a bit longer, but for 3 months all I did was feel it & know there was something wrong, the wedding the honeymoon (my 1st cruise) were fantastic, then it was back to work and normal life, my honey kept saying everyday make a doc's app yet? No , i'll do it tomorrow, then finally in June @ work I had such terrible pain in my arm I finally called my GP, he actaully felt another lump in R, that I could not, sent me for mamo & US and scheduled an app w/general surgeon, that was June 6, June 13th I saw surgeon w/reports, Birads4, excisional on both on June 27, told I had ILC, LCIS, ALh on June 29th (L Breast) R was B9 but ALH & A million other things. I fell apart - I had cancer, for sure I was going to die @46. Had lumpectomy, and 33Rad treatments, tried tamoxifen (side effects unbearable), I have had 3 more biopsy's since all on R breast, It has been a ruff hard year, I am finally trying to take control of my life, new doc's , seriously onsidering bilat, to many scares, I can't do that anymore. I used to think that I would live a good long life, now I know that I must live the life I have been given. And that really sucks sometimes. This site has been the most helpful to me these past months I wish I had found it sooner, I thank you all!!!!

Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Aug 17, 2007 05:33PM JeanOneal wrote:

It has been 3 l/2 yrs. since I was dx. with ILC. Appeared to just have a dense breast and nothing otherwise showed up in mammograms or ultra scan. Finally-because of pain under my collar bone, the surgeon did a biopsy and I was dx with a 10 cnt. tumor. Masectomy, adr, Taxol, radiation and then almost two yrs. of trying to find an AI I could tolerate. Meanwhile the cancer has spread to my intestines, stomach, tumor in right lung and in lumbar section of my spine (had radiation for that in July). Now on Faslodex, Zometa and Xeloda (chemo by mouth). Tumor markers went down for 3 mos. and now have started back up so treatment may be changed. Actually feeling quite well for all that is going on and enjoying each day as it comes. Its not over until its over and I intend to find continued answers with God's help.

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Aug 18, 2007 02:23AM NancyNY wrote:

In May 2004 I noticed a crease in my right breast. I didn't feel anything. I insisted on a mammogram, and two weeks later they told me it was cancer. According to the first biopsy they thought it "favored ductal cancer grade 3" However, when they actually looked at the lump it was 2.3 cm. ILC involving the ducts, both classical and pleomorphic. What concerns me is that it had a high proliferation index. I did dose dense ACT rads and am now on arimidex. My oncologist told me that I was very lucky that the cancer grew where it did, so it was visible on a mammogram before it got very big.

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Sep 8, 2007 06:48PM Lynn12 wrote:

bump

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-

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