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Topic: new diagnosis of ILC

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

Posted on: May 25, 2019 01:31PM

Chrissyk4321 wrote:

Scared and concerned, early stage, please share any info you may have to ease some anxiety.

Thanks, ChrissyK

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May 25, 2019 04:30PM Moderators wrote:

Dear Chrissyk4321,

Welcome to the BCO community. We are sorry about your diagnosis and the anxiety it brings. We are glad that you reached out to our members and we are hopeful that some will reach back to you with support. In the meantime here is a link to some information on our main site about ILC treatment. If you go to settings on the blue tool bar and make your profile information public, it will appear in your signature line in subsequent posts and will let everyone know your diagnosis and treatment details. It can help with information sharing among members. If there is someone in particular who you are trying to reach out to here. you can send a private message and perhaps get a quicker response. Let us know if there is anything we can do to help you to navigate your way around.

The Mods

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May 25, 2019 04:54PM Mavericksmom wrote:

Chrissy, having breast cancer, no matter the type, is frightening and concerning. People will tell you not to worry, but if you find a way to do that please let me know, it never worked for me!

I had IDC in 2003, small tumor, treated with a lumpectomy, removal of fat pad with 24 lymph nodes because my sentinel node biopsy failed, a re-excision for clean margins, chemotherapy and radiation.  I tried the Tamoxifen as I was pre-menopausal at the time, but didn't like it so I stopped it, but still continued follow up visits with my medical oncologist.  Everyone told me I would most likely never get cancer again.

The day before my surgery in 2003, my elderly mother was diagnosed with IDC. A year to the day I had my biopsy my sister was diagnosed with IDC and lymphoma at the same time.  About two months after my surgery this year my other sister was diagnosed with IDC, yet I am not positive for BRCA 1 or 2. 

As each year passed I was sure I would never get breast cancer again. Then 15 1/2 years later I went for a diagnostic mammogram because I had pain in the breast I had cancer in.  My mammogram was fine, but they did an ultrasound because of my pain and that is when they saw something suspicious and told me I needed a biopsy.  I literally went into shock when I got the call that I had ILC.

I was treated with a mastectomy and now I am on Letrozole.

I feel like I should be an expert after all I have been through, but the truth is, I am the same as you, looking for answers to so many questions and feeling helpless and worried.

I am not sure of your age but ILC does seems to respond well to Aromatase Inhibitors.  I assume you have a breast surgeon and hopefully have seen or will see him/her soon. The breast surgeon is the starting point as surgery is always part of treatment. He or she will tell you what you need next. 

If you go on the Main Site of this website you will find a lot of information on lnvasive lobular carcinoma.  Also, the women on this message board are amazing and I have learned so much from them.

My advice is to take one step at a time, one day at a time.  It isn't easy, I know as I have to remind myself of that too. If you are afraid you are going to die, don't be. People don't die of breast cancer, they die from it spreading to other places in the body and even then, most women live many, many,  years with the help of new treatments. The fact that yours is in an early stage is very good news! 

Hopefully you will get a lot of responses here.  Have you see a breast surgeon? ((((cyber hug))))  I think the worst part both times I had breast cancer was waiting for a diagnoses. Once you see your doctor at least you will have a treatment plan.  Breast cancer is full of waiting, having a test, waiting, getting result, waiting..... It does get easier to relax in between tests and appointments. Hope this was helpful.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 25, 2019 08:17PM jessie123 wrote:

Chrissy --- I'm also kind of new --- diagnosed 6 months ago. The absolute worst part of this ordeal has been my own anxiety -- and I'm not kidding. The second hardest part for me was deciding between a mastectomy or Lumpectomy. I think that took me two months. I went with the lumpectomy . The worst part of that was having to be at the hospital at 5:00 a.m. --- I was home by 11:30 a.m. and had no pain -- never even took a pain pill. Then the next thing you have to do after a lumpectomy is radiation. The worst part of that was having to be somewhere everyday for 3 to 6 weeks ---- my skin never blistered or had any significant side effects. Now it's over and I still have residual anxiety. Your diagnosis is early stage so you will probably be given the same choices as I was given. The members of this site have been lifesavers for me and you can ask any or as many questions as you want and they will respond.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 26, 2019 09:17AM claireinaz wrote:

So sorry you have to join us, but you'll get lots of help here! So--

ILC has a higher tendency to be multi-focal, so get good scans of both breasts early on, and you may have to get fierce about that. I went ahead and had an BMX because I didn't want to worry about the other "good" breast getting something that wasn't caught on scans. (see next point)

ILC tends to hide from scans like mammos because it grows in flat "sheet" like patterns, and so often ILC tumors aren't found till they are big and more dangerous. I had 5 "clear" mammos that didn't reveal anything which gave me a false sense of security. The US that I had done after I found the lump through a random self-exam sent me to a surgeon immediately, and so the US was a better tool to use than a mammo. Breast MRIS are the best, if you can get one, and have them do both breasts.

ILC is a bit less likely to respond to chemo, but if you have + nodes, your oncologist may recommend it anyway. I did it--it was doable--and I'm glad I did it because even if it increased my chances of survival by a percentage point or two, I wanted it.

The good news is that ILC tends to be less aggressive and slower-growing, and usually responds well to an anti-hormonal pill that you take once a day. Often chemo isn't even recommended for ILCs, and after surgery and perhaps radiation (also doable) you'd just take that medication.

Others will weigh in--it's all I can think of for now--

except to say you're going to be just fine! Deep breath and we are here to help or just listen.



9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Aug 18, 2019 04:28PM purple-flower wrote:


I am in same boat as you were a few montha ago. what have you done so far and how is it going??



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Aug 18, 2019 04:30PM purple-flower wrote:


glad to hear you are doing well. how are you handing followup since you had lumpectomy? that path seems so much more doable for me, but I am a worryer and dread have another surgery or 2 after the first one. thoughts?


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Sep 13, 2019 03:06AM - edited Sep 13, 2019 03:06AM by hlya

Hi, ChrissyK,

It's normal to be scared and concerned, but there are lots of women here on this site who could help you with going through this . Lots of women helped me when I was dx years ago, you will just be fine.

Bless you,

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Sep 13, 2019 09:40AM Live_love_laugh wrote:

Just recently diagnosed stage 1A ILC and stressed about taking treatments and longterm recurrence..Clair what treatments have you done?

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Sep 13, 2019 09:45AM Live_love_laugh wrote:

Just recently diagnosed stage 1A ILC and stressed about taking treatments and longterm recurrence..Clair what treatments have you done?

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