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 07:49AM by Lynn12

Posted on: Jul 6, 2007 04:49AM - edited Dec 7, 2008 07:49AM 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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Nov 13, 2008 10:30AM awb wrote:

Texas357-----my mom had ILC many years ago--lumpectomy, radiation, tamoxifen--and is now a survivor of 22 years without a recurrence--so there's definitely long term hope!!!!!  I have LCIS, had lumpectomy and just finished my 5 years of tamoxifen, and am on high risk surveillance of mammos alternating every 6 months with MRI and frequent breast exams. My mom's story gives me hope, I hope it will be inspiring to you as well.

Anne

"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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Nov 26, 2008 04:59PM sue_blue wrote:

Does anyone have enlarged lymph nodes on the lymph node dissection side? I have two I can feel under the arm and at least one above the clavicle. We are "watching" them. I would feel better if I knew others had this also.

Susan
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Nov 28, 2008 08:23PM frannieann1 wrote:

Hi Bella,  I have just discovered this website and found it great too.  I live in Australia and got diagnosed with Invsive lobular cancer in June this year.  I though I had caught it early too, but it had spread to 6/21 lymoh nodes.  Have just completed my 6 rounds of chemo and am due to have radio in January, but am really scared of side effects, particularly lymphoedema having had so axillary clearance - did you have any problems with that.  I am also thinking of having my right breast removed after all this is over and a bilateral reconstruction, but know I will have to wait a while.  Will also have to have hormone treatment and am not sure whether to go for Arimidex or Tamoxifen.  Any advice you have will be gratefully accepted.

Fran B

Dx 6/5/2008, ILC, 3cm, Stage II, Grade 2, 6/21 nodes, ER+/PR-, HER2-
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Nov 29, 2008 09:18PM Gitane wrote:

Sue,  I don't have the enlarged nodes, but I do understand how waiting causes anxiety to rise.  I am glad you are being tested and watched closely.  Have the nodes been biopsied?  That might give some answers.  Hoping for the best for you.  Let us know.

frannieann1,  Hello and welcome to our ILC group.  I didn't have an axilliary clearance, but many here have had it without problem.  I had my right breast removed after the dust settled, and I never have regretted it.  I'm PR-, too.   Since you are postmenopausal, Arimidex might be more effective, at least the studies seem to be showing that.  I hope you are recovering from the effects of the chemo.  I am glad you found our site and hope you will come back.

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Dec 3, 2008 06:20PM MRSROCKYTOP55 wrote:

Hi, I am a recently diagnosed ILC.  Five weeks ago I discovered an indentation and mass in my right breast.  I was visiting the U.S. and as soon as I returned to Costa Rica where we are missionaries, I saw my family physician who sent me for an ultrasound.  That doctor said I needed a biopsy.  We have the government insurance so the wait is quite long for appointments.  We chose to see a private physician and I had a lumpectomy on the left on November 15.  I had two tumors, one was IDC and one was ILC.  I also have another tumor on the right but it is very small.  I am scheduled for a mastectomy on the left and a biopsy on the right December 10th at the government hospital.  This should be quite interesting since my spanish is limited and I can not have any with me.  My husband will drop me off at six am and can't come back until  4:00pm to visit. I am trying not to think about it and keep busy. We are taking a little trip this weekend and I am totally ready for Christmas.  We have a little Costa Rican girl who lives with us and she is really afraid.  We are trying to assure her that things will be fine.  I am so glad to find this site to vent.  Thanks for listening.  Kathy

Dx 11/17/2008, ILC, 1cm, Stage IIB, Grade 3, 1/6 nodes, ER-/PR-, HER2+ Dx 9/24/2013, ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+ Dx ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+
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Dec 3, 2008 06:42PM MRSROCKYTOP55 wrote:

Sorry need to correct, the side that was recently biopsied was the left.  The mastectomy is scheduled for the left and biopsy on the right.  Sorry, this is all new to me and I am a bit rattled.  Kathy

Dx 11/17/2008, ILC, 1cm, Stage IIB, Grade 3, 1/6 nodes, ER-/PR-, HER2+ Dx 9/24/2013, ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+ Dx ILC, 1cm, Stage IV, Grade 3, 1/6 nodes, mets, ER-/PR-, HER2+
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Dec 4, 2008 11:25AM rayhope wrote:

In December of 2007. I went to gyn for retracted nipple.  He was suspicious of breast cancer and sent me to surgeon for mammogram and ultrasound.  Neither showed anything and radiologist said to repeat in 6 months.  In six months, neither showed anything but radiologist ordered mri.  mri didn't show cancer but was to be repeated in 6 months (Dec 2008).  In the meantime, I noticed a palpable mass mid-October.  At this time, surgeon decided to remove mass; pathology report showed DCIS, high grade, multifocal.  I opted for bilateral mastectomy on Nov. 24, 2008since diagnosis had taken so long.  Breast oncologist surgeon called two nights ago and said pathology report showed a big surprise; instead of DCIS, I have infiltrating lobular carcinoma, 4 cm tumor, lymph nodes negative, estrogen, progesterone and her2 positive.  I'm just recovering from the shock of the changed diagnosis.  I have an appt next week with medical oncologist for further evaluation and treatment plan.  BS thinks I will most likely have chemo. 

Began TCH 12/18/08 Dx 12/2/2008, ILC, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Dec 4, 2008 09:39PM Gitane wrote:

rayhope, Without a doubt, you win for the sneekiest.  What a shock for you.  I was struck by the statement that the MRI did not pick it up.  I wonder if it was because of its position in your breast, or if the contrast just didn't light it up?  Are you going to get an Oncotype DX test?  We are here if you think of questions or just want to talk.  Negative nodes is good.  HUGS.

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Dec 4, 2008 10:39PM Lory wrote:

your mom gives me hope also

Be the Best that you can Be Dx 10/21/2008, ILC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 5, 2008 11:31AM rayhope wrote:

Thanks, Gitane.  I suppose it just didn't light up on the mri.  Evidently, about 10% of this type cancer just doesn't show up on any of the diagnostic tests.  Even with the inverted nipple, surgeons and radiologists kept saying there was nothing to biopsy.  Now I wonder if there should have been some type of biopsy earlier anyway.  My only reason for finding out would be to warn other women.  I can't really look back; just have to move ahead.  I don't know about the oncotype dx yet.  I guess I'll find out next Thursday when I meet the medical oncologist.

Began TCH 12/18/08 Dx 12/2/2008, ILC, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+

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