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Topic: Hello. I'm new, and thank you.

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

Posted on: Jun 19, 2018 01:15AM - edited Jun 20, 2018 11:08PM by macmomma

macmomma wrote:

The background to this is that I am 57 years old--very, very healthy otherwise-- and my husband was diagnosed in March 2017 with multiple myeloma. Because of myeloma support forums, we found a curative therapy for his cancer. We went through two rounds of VDT-PACE chem followed by two stem cell transplants and three years of immunotherapy ongoing. Now, 15 months later, I'm diagnosed with ILC. I am a physician, and I am a strong advocate. I know I have a very bad family history of cancer. At this point, the enhanced mammograms show only a 4-5 mm "abnormality," but because I insisted on a biopsy (a thread for another day--the worst experience of my life), they found the cancer. Waiting the MRI and genetics. Can't get the MRI because of the extensive trauma from the biopsy. (My hypothesis is that the ILC cause hypervascularization of the region which caused significant bleeding and trauma). Can't do the mastectomy for another 4 weeks because of the trauma. I am determined to have a bilateral mastectomy. Partly because my husband is under the Sword of Damocles, I don't want another over me. The other part is because I know I have a lousy family history. My breast surgeon is very supportive of this.

Here is my question--when my husband was diagnosed, the first information we received was sort of "just be content with palliative therapy and maybe we can keep him alive for 10 years." I'm kind of aggressive, and so would not accept that, and found a curative protocol with Bart Barlogie, MD at Mount Sinai. I'm wondering if there is a "super aggressive cure doctor" for ILC, and if so, who that is.

The best I can tell, ILC can very reasonably be treated locally--there is no reason to go to a specialized center. But, if I'm wrong, I'd like to have information from you all about that. I live in San Antonio, Texas. There is a very good cancer center here, and there's an MD Anderson satellite clinic as well, but I'm willing to go anywhere.


Finally--what should I tell my early 20s children--two boys and a 20-year-old girl. Especially the girl--about screening.

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Jun 20, 2018 11:00PM vlnrph wrote:

Good for you, getting out there to find the optimal therapy for your hubby!

Depending where you are in your treatment, perhaps the meeting in Boston next month would fit into your agenda, especially the Saturday session devoted to lobular disease. Scroll around on this topic to find the info - when you register as a patient/advocate, the fee is much less than for doctors...

Your genetic counselor can be an excellent resource for family members, particularly if a deleterious mutation is found. My 23 yr old was just starting grad school as I began chemo and is aware of our medical history but does not require anything except normal screening. I'm more concerned about my sister's girls whose other grandma died of ovarian cancer - as you probably know, there is no good method for early detection of that monster.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jun 20, 2018 11:10PM macmomma wrote:

Thank you--and as I looked back, I realized I made a mistake. The lesion on mammo was 4-5 mm--not cm.

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Jun 20, 2018 11:31PM Meow13 wrote:

That is very small, what is your hormone status? Her2?

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Jun 20, 2018 11:39PM macmomma wrote:

Thanks for replying! Don't know the hormone status yet. I was only diagnosed 6/18/18. Hopefully in a few days. The 4-5mm was on mammogram, so it might be much bigger in real life--if I understand ILC.


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Jun 20, 2018 11:42PM Meow13 wrote:

True, good luck.

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Jun 21, 2018 04:18AM ShetlandPony wrote:

Take a look at the Lobular Breast Cancer Alliance. Some very smart patients, researchers, clinical oncologists, etc. have teamed up to address this understudied subtype of bc. Also, there is a yearly ILC symposium (actually that's where LBCA was conceived, at the first one in Pittsburgh). I don't know about a super aggressive cure doctor, but there are important considerations. I don't know where to start, especially without knowing more about your path report. Have you browsed the ILC forum here yet?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 21, 2018 08:09AM macmomma wrote:

Will do. I don't know much from the path report except the Nottingham score was 6. Don't have the receptors or HER2 back yet. No MRI yet since the breast was so traumatized. Thank you!

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Jun 21, 2018 07:21PM dakrock wrote:

I too was diagnosed with ILC.  I went in for my yearly mammogram in December and they found a suspicious area and suggested a biopsy.  I had that done and the biopsy showed that it was cancer and while in the beginning they thought I would need just a lumpectomy after the full results from the biopsy were completed it was found that it was invasive lobular carcinoma.  I then had to have a mastectomy and have been on Letrozole since December.  I had my surgery on February 23, 2018.  I only know that the levels have decreased since taking the letrozole but after a  Dexa bone scan they found I have osteoporosis in my femur bone that goes into my hip.  Now the oncologist thinks I should get treatments every six months of Zometa.   I am nervous about that and my primary care doctor suggested I see an Endocrinologist .   I am doing as much research as I can.  I say find someone who you really trust and go from there.   I trust my surgeon who found the cancer so his advice is to definitely take the Zometa because Letrozole depletes the bone also.    I wish you good luck with your diagnosis and also with your husband.  I can only say I now know that Cancer changes everything.    



Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jun 21, 2018 10:01PM - edited Jun 21, 2018 10:01PM by ShetlandPony

Hi again, macmomma. It is typical for ILC to come out intermediate grade, as seen in your score of 6. Classic ILC is ER+ PR+ Her2 negative, and requires anti-estrogen therapy. If it turns out otherwise, there is more to discuss. They will order Oncotype after the surgery to help with the chemo decision (unless there are a lot of involved nodes). ILC often comes out with an intermediate score, in which case I would want Mammaprint to determine luminal A vs. luminal B. I searched in vain for an ILC expert, and ended up having to become my own. I have done tons of reading on ILC so feel free to ask me questions as you go through the diagnosis and treatment process. What genetics are you waiting for?


2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 24, 2018 08:46PM macmomma wrote:

Thanks, Shetland Pony. I did get the markers back: ER 85%

PR 69%

HER2 1+ ( neg )

Ki67 12%

So, it looks like it's behaving as expected so far. Medical oncologist tomorrow, awaiting genetic test results and for this one to heal.

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Jun 24, 2018 09:45PM Meow13 wrote:

Well, if it turns out to be that small , you are seating pretty for having BC.

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Jun 24, 2018 11:40PM macmomma wrote:

Absolutely. Of course, almost no one's is as small as originally estimated, so we'll see. Praying, though.

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Jul 20, 2018 04:26AM Nick87 wrote:

sister has been diagnosed with stage 2 ilc had masectomy meet with the oncology team and they ordered a liver ultrasound wondering if this is a routine procedure beforw the chemo struts or if this is something to worry about?she has a bone scan chest x-ray and mri already

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Jul 20, 2018 08:27AM farmerlucy wrote:

The whole screening thing for our girls is so tricky. I started early because of early onset on my mom (27). That was an onerous and expensive near twenty year trail. Did very little good since it was the preventive mx that found the 1.1 cm IDC. I'm holding my breath that DD has her dad's genes re: breast cancer. So far she has done no screening. She is 28. I so hate to saddle her with the anxiety high risk screening brings. Just hoping for advances in the next few years.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jul 29, 2018 07:46AM - edited Jul 30, 2018 12:22PM by dakrock

This Post was deleted by dakrock.
Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 07:52AM dakrock wrote:

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A few seconds ago dakrock wrote:



I don't really understand what all these numbers mean.  Can someone help me please.  I have ILC and surgery on February, 24, 2018.  Mastectomy right breast with immediate nipple sparing reconstruction.   NO node involvement but here were my numbers before surgery

Focal asymmetry is identified, Architectural distortion entire dimension measures 2.9 cm

ER+PR >90%/variable, focally >90%

HER2/Negative

KI-67 25-35% 

Does this seem like a cancer that will spread?

Thanks, I need all the help I can get.


Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 08:10AM - edited Jul 29, 2018 09:24AM by Georgia1

Hi Dakrok. Sounds like those are pre-surgery biopsy stats. Do you have the post-surgery pathology report? That is more definitive.

[Editing to say that I am responding more fully on Dakrok's other thread instead to avoid cross-posting.]

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 29, 2018 09:46AM dakrock wrote:

No I do not have the post surgery report.  I see my surgeon in November and I will ask for them.  I saw him 6 weeks after surgery and he said the

25-35% was now <5%  low stage low grade  and I have to have a mammogram on left breast in 6 months and a Dexa scan and see medical oncologist which I did.   She did the DEXA scan and found out I have osteoporosis in my femur bone that goes into my hip and wants to start me on Zometa in September.  I'm nervous about the Zometa.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 11:04AM HersheyKiss wrote:

Nick87, I did not have an abdominal ultrasound prior to chemo. My doctor ordered a bone scan, chest & abdominal CT, and a heart scan. The bone scan and CT were necessary because of my positive nodes. Wishing all goes well for your sister.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-

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