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Topic: Am I the only ILC Triple Negative Breast Cancer person here

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: May 8, 2016 07:13AM

Numb wrote:

I can't believe how rare my type of breast cancer seems to be.  I have not found one other person on this site with the same diagnosis as me.  

Dx 2/15/2016, ILC, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2-
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May 8, 2016 07:36AM Moderators wrote:

Hi Numb! Yes, it's true that this type of cancer is not common. Do you know CinderellaNC? Looks like she has triple negative ILC too, as you can read in the following topic: Topic: Any triple negative ILC out there?

The Mods

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May 8, 2016 08:24AM Numb wrote:

Thank you Moderators, I will get in touch with Cinderella.

Dx 2/15/2016, ILC, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2-
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Jul 12, 2017 11:03PM lightseeker wrote:

Hi,

I have been diagnosed with ILC (Pleomorphic), triple negative. My tumor is about 4 cm; the care plan includes neoadjuvant chemo (ACT, 4x, followed by 12x Taxol, with possible Carboplatin). I just had the port placed today; the chemo starts next week.

I'm very sad and scared.

Eve

This is some godless, fucking bullshit. PILC TN Chemo: AC, Taxol x12,Carbo x4 , then Rads and Xeloda Dx 6/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/24 nodes, ER-/PR-, HER2-
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Jul 22, 2017 11:15AM MyJourneys wrote:

I have ILC hormone positive on one side, and ILC triple negative on the other. How's that for rare? I always was an overachiever! ;)

Dx 8/26/16 | MX 12/5/16, left w/ ILC, DCIS, LCIS, ER+PR+HER2-, grade 2, stage 2A, 1/2 nodes | Lumpectomy right ILC, ER-PR-HER2-, grade 2, stage 1A, 0/2 nodes | chemo Jan-Mar 2017 | rads June/July 2017 | Femara | MX right 12/12/17
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Oct 6, 2017 05:47PM Nurseinboots wrote:

hey lightseeker... I’m in that boat with you. You never want to be interesting from a medical standpoint, but here we are.

I did neoadjuvant chemo under a phase II clinical trial. AC - T but with Doxil (doxorubicin, but sort of an extended release version, and not as rough) and carboplatin. I had a big palpable mass that resolved nicely on clinical exam during chemo. So everyone was very happy. But the pre op MRI showed a lot of tumor left, and ln involvement, so off I went for the unilateral mx with axillary dissection.

I got disenrolled from the clinical trial because of the disappointing response to chemo - they were looking for PCR. So I got transferred to another oncologist and we rechecked hormone receptor status just to be sure. I’m meeting with her again next week, and depending on HER-2 results, we’ll make a plan for adjuvant chemo. She doesn’t want to do the Taxol, she wants something more aggressive.

I’m also sad and scared at times. I started Wellbutrin, and it has helped. Now, even when I’m low, I see a way forward- I lost that perspective fo a while. Trying to work out getting some therapy as well.

I hope you are doing well.

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Oct 7, 2017 05:21PM lightseeker wrote:

Hi

Nurseinboots - this is definitely a rollercoaster of emotion :( Thanks for your info. I was just told that if I don't get complete response from chemo that I'd be a candidate for xeloda bec I am triple negative.

I just graduated Nursing School (at 50). Passed NCLEX before starting chemo (studied one day) Not sure if and when I will get to work with patients due to immunosuppression - this bums me out too.

Thanks,

Eve

This is some godless, fucking bullshit. PILC TN Chemo: AC, Taxol x12,Carbo x4 , then Rads and Xeloda Dx 6/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/24 nodes, ER-/PR-, HER2-
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Oct 7, 2017 07:03PM Nurseinboots wrote:

Eve, congratulations and welcome to nursing! That’s a great accomplishment.

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Oct 7, 2017 07:33PM Nurseinboots wrote:

MyJourneys, I hope you’re getting excellent care and doing well with your dual citizenship, so to speak!

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