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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Does BRCA relate to ILC??

Topic: Does BRCA relate to ILC??

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

Posted on: Mar 21, 2008 02:53PM

PeggyDixon wrote:

Hi all - I'm copying this post which I originally put in the HIgh Risk thread....Does anyone know if the BRCA relates to all breast cancers or to IDC specifically? I have ILC and assume it would be worthwhile to have the test for my daughter's sake. What about BRCA and inflammatory? Paget's??

Thanks everyone. Happy Easter to you all.

Peggy xoxoxoxoxxo

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Mar 21, 2008 03:01PM wallycat wrote:

I thought...but am not sure....BRCA carriers have more ER-/PR- tumors, but no idea about ILC/IDC.

I will say they tested me for BRCA mutations.  I don't have any and I am an ILC gal.

As an aside, my DH and I took a motorcycle trip through your country a few years ago and I fell in love with it!  I could see myself living there without any question!!!

...and I ADORE cod tongues...wish we could get them here!! 

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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Mar 21, 2008 05:55PM nash wrote:

Like wallycat said, I've heard BRCA bc tends to be triple neg, but don't know about IDC/ILC. If you were post-menopausal at diagnosis and there isn't a strong family history of bc, they may not recommend testing. It's worth a chat with a genetic counselor, though.

Happy Easter! 

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18 Dx 6/7/2007, ILC, Left, 2cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 07/19/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) Radiation Therapy Whole-breast radiation Chemotherapy CAF: Cytoxan, Adriamycin, and fluorouracil (different doses than FAC) Hormonal Therapy Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM))
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Mar 21, 2008 06:47PM PeggyDixon wrote:

Thanks Wallycat and Nash. I will ask about it although I think you are right that it probably doesn't apply.  Wallycat, that's so funny that you like cod tongues....I love them too!! And I love living here, after having lived in many places....too bad I didn't know about you when you came through because we certainly could have gotten together. I showed my kids your message re cod tongues and they wanted to know where you are from so we looked up your profile. We are the same age and both of us have cats and like cod tongues...and we have ILC. Pretty amazing!! lol.

Peggy Dx 1/19/2006, ILC, Stage IIIc, ER+/PR+, HER2-
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Mar 22, 2008 08:09AM , edited Mar 22, 2008 08:19AM by wallycat

I tried to update my profile this morning...we'll see if it takes :)

I'm living in Wisconsin! I've lived in a few places as well and did some travel....adore food...sometimes too much Frown  ...

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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Mar 27, 2008 04:41PM , edited Mar 27, 2008 04:43PM by texas94


I was told "not usually but they cannot rule it out yet."  And so it goes in the world of bc genetics...  Since you've already been diagnosed with cancer, I say if you can pay for it or if your insurance will cover it, have the test and get the info for your family.  It has been very helpful in my family that we've all been able to start sharing various genetic testing results. My research onc tested me after my ILC diagnosis and I was negative.  But then, others in my family are negative for it also, and we have IDC that runs rampant in our family tree.  I was the first to have the honor of getting ILC :)

Good Luck!


ILC 10/2007 age 36 (BMX, 410 gummies, 3 ½yrs Tamox, Oncotype 19). ILC recurrence 6/2014 age 43 (6mos Taxol & FAC chemo, ALND, LUMP, biopatch left sac to keep implant in place, 33 Rads, Oophorectomy & 10yrs Femara). I also had Thyroid Cancer in 2004! Dx 10/19/2007, ILC, 1cm, Stage Ib, 0/1 nodes, ER+/PR+, HER2- Dx 6/19/2014, ILC, 1cm, Stage IIIc, 11/19 nodes, ER+/PR+, HER2-
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Jul 23, 2008 10:36PM hbn74 wrote:

I posted this info in another thread but I thought I would post here as well.

I am being tested for a mutation in the e-cadherin (cdh1) gene. This mutation has been found in my family. My father had already passed away when we were tested for the gene, so I don't know if he had it or not. If he did I have a 50% chance of having the gene. So really, with the information that we have... my chances are only 25%... which is actually a comfort.

risks for women are greater than for men, the main worry is diffuse gastric cancer.

83%- diffuse gastric cancer

39%- lobular breast cancer

If I am found to carry the gene I will recieve regular 6 month mri's for lobular breast cancer and have to decide at what point, or if at all to proceed with a gastrectomy (which is what they are advising for women found to carry the gene). I am 34 yrs old, no one on my fathers side has lived to see retirement.... I am hoping that with the knowledge we now have that can change for my remaining aunts and uncles, my cousins, my brother and our children.

In my family we have a very high incidence of diffuse gastric cancer, esophageal cancer and breast cancer.. which is why they approached us with the possiblity that this gene could exist in my family. My father did not have breast or diffuse gastric cancer... he had lung cancer, and had previously battled squamous cell carcinoma in a lymph node. The genetic counsellor I saw informed me that this could very well be related to the gene, I'm certainly hoping she was wrong.

Anyway, I hope my information can help someone.


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Sep 16, 2008 04:53PM ValerieF wrote:

My oncologist is doing a study on the CDH1 gene and lobular breast cancer.  The preliminary study is currently closed--they are waiting for results---but I'll let you know if/when they reopen it and what the findings were.

 BTW, I have a friend with very atypical ILC--dx at age 28, ER/PR- and Her2+

Valerie, age 41, dx with ILC 7/06 Dx 6/17/2006, ILC, 4cm, Stage IIb, Grade 2, 3/11 nodes, ER+/PR+, HER2-