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Topic: Great Article on ILC and LBCA!!

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

Posted on: Feb 16, 2018 07:41AM

Huffpuff wrote:

https://www.fredhutch.org/en/news/center-news/2018/02/lobular-breast-cancer-comes-into-the-research-spotlight.html

and for those of you who do not know about LBCA please visit the very informative website!

https://lobularbreastcancer.org

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Feb 18, 2018 05:56AM Hipline wrote:

Well written, thanks for posting! We need to spread the word about lobular and get it front and center. Thank you!

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Feb 18, 2018 11:03AM Georgia1 wrote:

Thank you for sharing! Great article on lobular breast cancer. This is particularly useful:

Lobular's metastatic spread is also unconventional. While ductal spreads to the liver, lungs, bones and brain, lobular tends to go to the bones and ovaries or enmesh itself in the gastrointestinal tract, the abdominal lining or the tissue around the kidneys and ureters. But lobular survivors aren't always aware of this oddball spread pattern. Nor is it common knowledge among the primary care physicians who care for them years after treatment. This is especially problematic because lobular leans towards late recurrence.

"Several women in our [ILC] group had mets to the GI tract and the ovaries and never knew it was possible to spread there," said Pate. "Lobular patients often have terrible problems getting diagnosed because imaging can't see the mets or their doctors misdiagnose their symptoms. Patients need to understand their disease so that if they're having persistent issues with their ovaries or abdomen, they can advocate for themselves."

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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Feb 20, 2018 03:05PM claireinaz wrote:

Georgia1, that caught my eye as well. I wonder, other than pain, what the symptoms of a recurrence to ovaries and/or GI tract would be??/ Inquiring minds...

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 20, 2018 04:34PM Georgia1 wrote:

Claireinaz, the symptoms of stomach cancer seem to be the usual: frequent heartburn, nausea, feeling full, pain. And then for ovarian cancer, the leading symptom is bloody discharge or irregular periods. Sigh. I guess it's a good reminder to be proactive about our health, but sadly also a long list of things designed to increase our anxietylevels too.

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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Feb 20, 2018 06:16PM EastcoastTS wrote:

I think I mentioned on another post with this same article. I sent it to my gyno (who orders yearly vaginal US) and to my PCP. They know zip about ILC. My MO has it down.

I asked them to place in my file. ;) I'm sure they love me. But when I ask for things, I want them to know why.

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 20, 2018 07:29PM Meow13 wrote:

I have what feels like s strained muscle in the groin area for at least 6 months. My mo was not at all concerned. I see my GP in April maybe I should push for an ultrasound or something. When I hurt my back last year they sent me right to the MRI machine. Thank God no cancer.

Have a friend that was diagnosed ilc same time as I was and not 6 months later it was in her hip.

My tumor markers never fluctuate, so I think that is how they are keeping track of cancer growth but is it enough?

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Feb 21, 2018 05:04AM claireinaz wrote:

Meow13, not sure....(if it's enough). My oncologist doesn't check tumor markers/CTCs; she claims they are notoriously unreliable and instead looks for markers (like liver enzymes, calcium, etc. ) in my labs.

And I agree we can be, and have a right to be, hyper-anxious over little aches and pains. Right now I'm suffering vertigo--I think it's BPPV--because I've had it before, but of course I always think it's gone to my brain.

At least I'm getting Prolia shots every six months from my MO to hopefully protect against recurrence there. I have mild osteopenia, probably from the AI and a bit of age, so insurance covers it, but my MO likes the idea that there is an added benefit from it too.

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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May 9, 2018 07:36PM OTY wrote:

Invasive lobular and ductal breast carcinoma differ in immune response, protein translation efficiency and metabolism


Terrific article in nature magazine on ILC . Potential for immunotherapy ?

ER+/PR+/HER2- ,T1NOM0 , Grade1 ILC , 0/4 nodes , lumpectomy March 2018 , Radiation Therapy April 2018
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Nov 5, 2018 07:37AM claireinaz wrote:

Could you provide the live link? That would be helpful, thank you!

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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Nov 5, 2018 10:35AM Huffpuff wrote:

https://www.fredhutch.org/en/news/center-news/2018/02/lobular-breast-cancer-comes-into-the-research-spotlight.html

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