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Topic: Please help ILC

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

Posted on: Feb 15, 2017 07:16PM

Kaylay775 wrote:

Hi Everyone. I am new to this site and had some questions about ILC breast cancer. What is the symptoms of ILC and physical symptom of breast ILC? I cannot seem to find much on it online only that it does not form a lump like typical breast cancer, does not show up on a mammogram or ultrasound, and is pretty difficult to diagnose. Most dr's don't even suggest ILC as it is kind of rare (from what I read) My mother passed away from that when she was 28yrs old and I was 3. I was raised by my maternal grandparents and have asked alot of questions about her and ILC and they can't remember much. They tell me she passed away rather quickly and they do not remember her symptoms of ILC or even much about her diagnosis. Not sure if it's too painful for them or if they really don't remember. If anyone can help me it would be greatly appreciated. Thanks!

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Feb 15, 2017 07:46PM Freya wrote:

Hi Kayla,

Lobular cancer is dxd in about 15 % of women with BC. I have ILC. This page from the main site here has lots of good information.

Lobular cancer grows more as a thickening, rather than making a lump. I had checked my breasts every month since I was a teen and never felt anything different. It has often been called an older woman's cancer, but I was 44 when dxd, and my medical team seemed to think it could have been there for 10 years.

As for symptoms, well there really aren't any, but that is the case for most cancers until you find a lump or it is found by screening. With your family history, perhaps you need to consult a good doctor and start from there. Best wishes.

Dx 2009, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, 14/22 nodes, ER+/PR+, HER2-
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Feb 15, 2017 07:59PM - edited Feb 15, 2017 08:06PM by Kaylay775

I started having mammograms just recently I am 25. I have spoke to my OB/GYN about ILC he said it would show on an ultrasound but I have read in this group and online it does not show up like that, MRI is an excellent tool for diagnosing. It's frustrating for a dr to tell me I'm too young to worry about BC, but I am not. My family history proves otherwise. I was hoping someone on here could help. Thanks for your reply.

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Feb 15, 2017 08:01PM melmcbee wrote:

Hi Kaylay. I was on vacation and notice a pain in my breast. I didnt pay attention at first but i eventually rubbed the area and i felt this strange thickening. I wirk in radiology and when I went back to work I had several mammo techs examining it. They called the breast center and git me an appointment for mammo, us, and biopsy. I went to work two weeks later and printed out my pathology report. ILC. Take care and know what your breast should feel like. I didnt and i had like a 3.5. cm mass that I was also told had probably been growing fir 10 years too

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Targeted Therapy 5/15/2017 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Feb 15, 2017 08:18PM Freya wrote:

Kayla, I wish we could help more. If your doctor is not being helpful or proactive, I would find one that is, you might need to try quite a few until you do.

Dx 2009, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, 14/22 nodes, ER+/PR+, HER2-
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Feb 15, 2017 08:26PM Kaylay775 wrote:

Thank you. I appreciate your reply.

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Feb 15, 2017 09:53PM MinusTwo wrote:

Kaylay - Freya is right. And I would inquire about genetic testing since you know your Mother died of BC. It certainly seems relevant. Good luck. By the way, you probably want to stay away from "dr google". There is old information out there, in addition to incorrect info & plain old scare stories.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 15, 2017 11:42PM toomuch wrote:

Hi Kayley - You are smart to be asking questions and to be proactive for yourself. You'll read a lot that ILC is seen in older women but there are plenty of not so old women on the boards who were diagnosed with ILC. Still, 28 is young to have BC of any kind. Has your doctor spoken with you about genetic testing? If not, I would ask him/her about it, especially BRCA 1 and 2 testing. If I were you, I would look for a doctor at a breast center. You can usually find them at teaching hospitals but at some private hospitals too. If you need help finding one, send me a private message.

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Feb 16, 2017 04:36AM djmammo wrote:

Kaylay

This is a long one so finish your coffee before reading ;-)

In addition to arising from two different breast tissues, IDC and ILC differ in appearance on imaging. The appearance of IDC on a mammogram is the classic focal spiculated mass, something that looks distinctly different from the background tissue pattern and will feel like a hard lump on physical exam. This is in part due to your body's reaction to the tumor.

ILC spreads along the tissue planes within the breast in a random pattern, not forming a discrete mass and not causing a great deal of reaction by the body. Although not as obvious as IDC on a mammogram, it is first detected as a new asymmetric density (a phrase you have all heard many times) in one or both breasts.

For example when comparing new and old mammograms, one might notice that there is now an area of otherwise normal appearing breast tissue density where, on last year's exam, there was an area of fat. This can be very subtle and this is what prompts all those additional views and spot compression images for an assym density everyone has had to endure, and ILC is why. If it spreads out on compression then it is soft normal breast tissue. If it persists and does not change in appearance, we become suspicious and go to US next.

You have all seen the US images of IDC, the little round ball with the jagged edges and dark shadowing behind it. ILC does not have that appearance. Rather than looking for a discrete mass we look for a disturbance in the overall pattern of the breast tissue. An analogy might be looking closely at a piece of silk for imperfections with a magnifying glass when you suddenly run into something that looks like flannel. It can be very subtle but not altogether impossible if you know what you are looking for and have a high enough index of suspicion.

Am I assuming correctly that you currently have no symptoms? MRI is the best method of detecting ILC and it will depend on your insurance company and your state laws regarding breast density whether or not they will reimburse for such a screening exam.

Board Certified Diagnostic Radiologist specializing in Breast Imaging helping members understand their health care provider's reports and recommendations.
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Feb 16, 2017 05:16AM melmcbee wrote:

Kaylay, I forgot to tell you I was 42 at diagnosi

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Targeted Therapy 5/15/2017 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Feb 16, 2017 06:47AM dtad wrote:

Kaylay....so sorry you lost your mother so young. IMO between your age and screening for ILC mammos are useless. Your breasts are too dense. An ultrasound is better but the best screening tool for your age and for ILC is a MRI. The hereditary factor is also important. Make sure you find a doc that is interested in all mentioned. Also would like to mention that being treated at a major university teaching hospital is very important. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 16, 2017 07:36AM MelissaDallas wrote:

Kaylay, you should be working with and being screened through a high risk breast clinic at a major university medical center who can determine exactly a schedule and types of screening for you and at what ages. You should probably have genetic counseling.

Also, even if you have a genetic predisposition to breast cancer, don't get hung up on it just being ILC. Because you have an inherited dispostion doesn't mean you would get the exact same kind of cancer your mom did. You would probably be at least, if not more likely, to develop IDC.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 16, 2017 11:12AM Jkay775 wrote:

Wowzers that was alot. Thank you so much for all the great information? Would you say mammos are useless at my age? And I should just skip right over to Ultrasounds and MRI? I live in California so getting my insurance to cover Ultrasouns and MRI is not easy.

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Feb 16, 2017 11:21AM djmammo wrote:

Jules

Not useless. Even with dense breasts abnormal calcifications can usually be seen which really cannot be seen on any other test and can help direct the ultrasound. Although in general younger women have denser breasts they don't always, and at least one view of each breast should be obtained somewhere along the way in your workup.

Board Certified Diagnostic Radiologist specializing in Breast Imaging helping members understand their health care provider's reports and recommendations.
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Feb 17, 2017 06:03AM dtad wrote:

Hi guys. Would like to clarify that what I meant was mammos are useless if that is the only screening tool. Sorry for the confusion...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 17, 2017 07:14AM claireinaz wrote:

My oncologist claims that about 80% of bc is caught by mammos and 20% by ultra sound. But that's a generalization in terms for bc. I found mine myself after just getting a clear mammo, ack....I felt so protected but who knows how long it was there, hiding? I found it through a breast self-exam, because I was skinny enough to feel it and it was nearly on my ribs, in the tissue under my arm.

As it was I had 5 "clear" mammos before I found it; the last mammo finally reported dense breasts which hide ILC because of the different way it grows. I wish I had known earlier that dense breasts hide bad things. I would have demanded an US or an MRI.

Finally, as for rarity of ILC--it's the second most common form of breast cancer, which kind of flips the rare designation on its head, doesn't it?

Everything the above posters have written is good advice. Genetic testing is the way to go, and then I think you can more easily ask for better screening than a mammo.

Claire

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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Feb 28, 2017 06:37AM Obee wrote:

all very interesting , I'm in NZ . thanks Claire

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Mar 9, 2017 11:25PM - edited Mar 12, 2017 09:32PM by karen1956

Jkay,

My breast cancer was found because of something suspicious which resulted in an ultrasound. Then biopsy and MRI and another biopsy. I had several mammograms in a row before the breast cancer was found. I asked a radiation oncologist about just skipped mammograms and going right to ultrasound or MRI. He told me that ultrasound is much more useful and helpful after a mammogram. He also said that MRIs result in false positives. The new digital mammograms are much improved.

I agree with the others. Find a breast specialist in high risk for breast cancer and potential hereditary breast cancer. Push for genetic testing. There are now many more markers than just BRCA 1 and 2.

Kare

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Mar 10, 2017 12:31AM Lily55 wrote:

Mammograms don´t seem to show ILC very well, if at all (did not in my case despite a diagnosis of Stage 3 ILC cáncer just 6 weeks after a "normal" mammogram) so mammograms are pretty pointless as they are not so accurate on dense Young breasts either!

I agree with others, go to a specialisy high risk centre and insist on regular MRI´s, mine did not show on US either...

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane)

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