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Topic: how "sneaky" is ILC

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

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Posted on: Aug 24, 2018 02:55PM

Dani444 wrote:

So here I am in the club nobody wants to join, and I am terrified right now. So my question is just how "sneaky" is this type of cancer? I am just recently diagnosed and met with my breast surgeon a couple days ago, honestly it feels like this week has lasted FOREVER. She went over my pathology report in detail and I tried to write it all down and understand it all. She said she is sending me for breast MRI (I go monday) because this cancer can be "sneaky" she didn't give me a grade but said the ultrasound measured it at 2cm, but the mammo measured it at 4. That seems like a big difference. So will this MRI be able to see the area better? Would it show other spots that mammo did not. Looks like from what I have read is it can hide in a mammo. She is so far recommending lumpectomy with whole breast radiation then hormone blockers. She did say depending on my genetic testing and MRI that could change. I was glad to finally get an answer but now I fear something could be missed. Thanks for listening!

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 24, 2018 06:23PM momand2kids wrote:

Hi there--

sorry you find yourself here-- but it is a good community. The "sneaky" part of ILC is that it often does not show up on a mammogram--many of us were having regular mammograms when all of a sudden (seemingly) a lump shows up-- but in ILC in many cases it has been there for a long time, just not detectable by mammograms. An MRI will be very helpful-- it can give you more specifics about the size of the lump. A biopsy of course is the final word on this.... for many of us, due to our ILC dx, regular MRI's are often part of the follow up protocol (I have one every 2 years along with annual mammograms).. Some people say ILC also is more likely to occur in the other breast--my onc at Dana Farber disputes that-- but just so you know, it is out there. ILC does seem to grow more slowly-- my onc said it was probably in my breast for 10 years...and it was discovered in a clinical breast exam with my regular doctor.

People here can help you, the hospital websites are helpful- we always recommend that you don't google anything-- lots of old and incorrect stuff on the internet. I should say my ultrasound suggested that my tumor was 1.8cm, it ended up being 2.5... others have had the exact opposite happen.

This is the hardest time-- as you are testing and gathering information--once you have it all together you and your doctor can make a plan. You will feel much better then. hang in there.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Aug 24, 2018 06:59PM Runrcrb wrote:

Dani444,

Next time you meet with your surgeon (or any other doctor on this journey for that matter) try to bring a friend who can take notes. Even better is one who will type them up afterwards ;) It's hard to ask the questions, process the answers and write it down. My explanation when talking to people not experiencing cancer or other significant health issues was always this: Doctors speak in their own language just as lawyers do, corporate folks like me do, etc. Even with me trying to state back what I've heard, I only understand half of what is said and due to the stress of the situation anyway, I only heard half. So best case, I walk away with 25% of the info.

As to ILC - my oncologist called it sneaky too because it often doesn't show as a lump that one feels. It can be more web-like. The lump I found was in my duct (IDC). My breast surgeon ordered an MRI so that we could look thoroughly before doing any surgery "I don't want to have to go back in with a second surgery." He also prepared me that MRIs often result in more biopsies, many of which are benign. It just has a likelihood to find more things that need to be investigated. I was super glad to have the MRI as that's how we found the two spots of ILC. And my left breast was totally clean. (I've never read that ILC is more likely to show up later in the second breast.)

All the best to you for a great outcome.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Aug 24, 2018 07:56PM ck55 wrote:

Hi!

ILC is pretty sneaky! I had mammograms religiously from the age of 33 (my Mother had BC). Always clear, although very dense. When I was 51 they saw a small spot that looked like microcalcifrications. Assumed it was DCIS. Had the biopsy done and there was DCIS, along with ILC. Had an MRI and they could see the tumor and guesstimated about 4CM. Had mastectomy and it turned out to be 9 CM!!!!!

So, yes, it is pretty sneaky. Threw everything at it. Here I am almost 12 years out doing well and enjoying life.

Hang in there. All is not lost.

Cyn


DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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Aug 24, 2018 08:10PM - edited Aug 24, 2018 08:11PM by MoonGirlJess

Dani—

My ILC felt rubbery and it ran across my breast. It distorted the breast. I showed it to my gynecologist and he said it was 'just you'. So it sat for months and months. Also had 2 negative mammograms (last was 3D). Sneaky? Well, my gyn couldn't distinguish it. Finally, I went to my plastic surgeon and she didn't blow me off. Got my implants out and the whole left breast had multifocal lobular CA. My breast surgeon said ILC likes to go to both breasts.

Sorry you're here but you will find awealth of information on these boards and comfort when you need it. Please take care.

Jess

Pleomorphic Dx 6/6/2018, ILC, Left, Stage IIB, Grade 2, 3/9 nodes, ER+/PR+, HER2- Surgery 6/21/2018 Chemotherapy 7/29/2018 AC + T (Taxol) Radiation Therapy 1/21/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/19/2020 Prophylactic ovary removal
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Aug 25, 2018 12:20AM Icietla wrote:

Welcome, Dani444. I am so sorry about your diagnosis and the difficult time you are in. You have come to the best place on the Internet for information, understanding, and support about breast cancer concerns.

Typing is generally rather slow, difficult, and painful for me, and I do not usually have so much waking time anyway, so I tend to recycle here on BCO by linking some posts I expect may be particularly helpful. I am going to leave here for you some links to some other BCO discussion threads. As to these linked BCO discussions, please read through them entirely. Where they have links to other content, please also read through that other linked content entirely too. I believe the material will answer some questions for you. It may raise some questions you did not know you had. If you find the linked content helpful, or if you think it may be helpful to others, please do similar recycling by linking previously posted content to help other BCO members and readers in the future.

We will support you in whatever your treatment decisions -- and your treatment decisions should be yours.

>>So my question is just how "sneaky" is this type of cancer?<<

Very sneaky. I cannot tell you how sneaky. Words cannot tell you how sneaky.

>>So will this MRI be able to see the area better?<<

Not necessarily.

>>Would it show other spots that mammo did not.<<

Not necessarily.

>>Looks like from what I have read is it can hide in a mammo.<<

ILC has been known to be capable of evading detection by mammography, by ultrasound imaging, and even by MRIs.

>>She did say depending on my genetic testing and MRI that could change.<<

Your treatment decisions should be yours.


https://community.breastcancer.org/forum/71/topics/862161?page=1#top

https://community.breastcancer.org/forum/71/topics/864529?page=1#top


https://community.breastcancer.org/forum/78/topics/854403?page=1

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Aug 25, 2018 06:08AM TwinkleCat wrote:

HI Dani444 -- mine was also not visible on mammogram. I had several years of clear mammograms, and then noticed that my breast was unusually firm this past June. Diagnostic mammogram showed new calcifications, and ultrasound showed a small <2cm mass.... after the biopsy showed mixed IDC/ILC, I had an MRI, which showed extensive disease throughout the breast. My MO said its likely it has been there for several years! So yes... VERY sneaky.

Mom to 5 cats, runner, choir nerd Dx 7/23/2018, ILC/IDC, Right, 2cm, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- Hormonal Therapy 8/16/2018 Faslodex (fulvestrant) Radiation Therapy 8/21/2018 External: Brain Targeted Therapy 9/25/2018 Ibrance (palbociclib)
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Aug 25, 2018 10:15AM - edited Aug 25, 2018 05:39PM by wallycat

I also agree, sneaky....hard to detect. I've posted this before but the only reason I even pursued my scans was because of disturbing dreams and "gut voice" feeling something wasn't right. I am sure my cancer was there for many years before it was "official." My mammograms, even with the cancer, were perfect. Ultrasound showed a tiny dot that "they" said was nothing. I would not let it go. I got the MRI and it lit up the area I thought would have the cancer. Went back for ultrasound to get the biopsy...nothing. I was there for over 1/2 an hour and nope, nothing. The (male) radiologist poo-pooed me and gave the not everything is cancer spiel. So back to MRI for biopsy. Yup. Cancer. And even though my breast surgeon said MRIs are 99.9% accurate, he agreed that nothing about my findings was traditional...and sure enough the 7mm MRI indicator turned out to be 1.8cm actual tumor. ILC tends to grow flat and long so rope-like or thickening is more of what gals find ...but having lumpy, bumpy boobs my whole life...felt JUST like the other one, which had no cancer.

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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Aug 25, 2018 10:48AM Meow13 wrote:

My ILC was a distinct tumor very similar to my IDC tumor.

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Aug 25, 2018 11:30AM Dani444 wrote:

Thank you all so much for sharing your knowledge with me. This helps me so much. I just think it is so scary that this cancer can hide so easily. I am compiling questions so I can call my nurse navigator on monday. I just have this nagging worry now that a lumpectomy could very well leave cancer behind. I am praying for good imaging, and kinda glad I am busy with work this weekend. I will be looking at the links that were given to me.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 25, 2018 03:05PM - edited Aug 25, 2018 03:06PM by Meow13

Dani444, at the time my tumor board said mastectomy for me. I really wanted a lumpectomy but you know I did what they said because there was also a suspicious area. I was not excited about reconstruction big DIEP surgery. When they got the detailed pathology report I actually was happy. It confirmed I could of had 2 lumpectomies but we really wouldn't know for sure. Having the mastectomy confirmed the only evidence of cancer was the 2 distinct 1cm tumors. The suspicious area was normal. And no radiation needed. In retrospect I am glad I had mastectomy even though the reconstruction surgery was a huge surgery. The only way my ilc and idc tumors were classified was from e cadherin sp? testing. The appearance apparently was not typical to ilc.

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Aug 25, 2018 03:29PM Meow13 wrote:

I found this to be very interesting, ilc vs idc, ai vs tamoxifen and chemo effectivity.

https://www.sciencedirect.com/science/article/pii/...

I also wondered about my high oncodx score of 34 when I had a grade 1 and barely 2 on my 2 tumors. Both had mitotic scores of 1. Chemo not as effective for mitotic score 1 as I originally believed. Convinced it was the lack of pr receptors and 95% er receptors that drove the result to 34.

I've seen the curve fitting equations used for oncodx scoring but like anything proprietary you don't see everything. I have seen doctors and patients cling to oncodx results forgetting it is a statistical tool not a cast in stone outcome predictor.

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Aug 25, 2018 08:23PM beach2beach wrote:

sorry you are but welcome. Always clean mammos. always something on my sonos but always benign. Last year, routine mammo/sono. Sono picked up on something small 7mm. Radioligist did not think much of it, she thought it was just my breast tissue, it wasn't solid like a lump. Long story short biopsy showed IDC. I opted for a double mastectomy. Final pathology showed it to be ILC. Also had DCIS and LCIS all in the same tumor.

Glad you are keeping busy..you will get through this. :)

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2018 03:56AM Lily55 wrote:

Sneaky also goes with slow........I had a mammogram that was clear and six weeks later had mastectomy for 5cm plus ILC! But ILC is usually slow growing so I focus on that and the fact I have time to get myself healthy on all fronts....not doing well on food at moment but I am six years out now from Stage 3 grade 2 diagnosis and I refused to have chemo.

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Aug 28, 2018 09:00AM claireinaz wrote:

Hi Dani,

Sneaky because it often (but not always, see below) grows "flat" (it's the nature of ILC cells) and doesn't form a palpable lump as often as other types of BC.

I had 5 "clear" mammos for five years, and found my problem through a random breast exam a few months after the last mammo. I did feel a pea-sized lump that was nearly under my armpit, high on my ribcage, but away from my breast. Turned out to be ILC. I have been grateful for my skinniness--I don't think I would have found it had I had some extra fat there.

Because ILC has a higher tendency to both hide from mammos and also to be multi-focal, I decided a year after tx ended to have a bilateral mastectomy. I just didn't trust scans anymore. However, my oncologist said that mammos catch about 80% and ultra sounds catch the other 20% (not sure where her stats came from), so if you didn't want surgery I'd at least insist on an US of both breasts regularly.

When I found the problem, I went to my GP--twice--and both times she couldn't find it in her own exam. She offered to send me for an US, and that revealed what I had felt. A week later I was waking up from a lumpectomy and told that it was cancer.

Post mastectomy, the pathology revealed I had some abnormal, dysplasic cells in my "good" breast, so I was glad to get all that threatening tissue out of me as best I, and my surgeon, could.

Hope that helps. As Lily55 noted, I took heart that even though I had + nodes, ILC tends to grow more slowly, and my PET scan was clear (done before I began chemo) so I can only hope that the surgeries I had, the chemo I had, the rads I had got rid of any lingering problems and that the anti-hormonal that I'm taking is keeping problems away.

It's a daily struggle not to let that disease run my life, but the worry is always there.

Hugs,

Claire in AZ

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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