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Topic: New sister & looking to the experts.

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

Posted on: Feb 28, 2020 04:07PM

RNShaffer59 wrote:

Hello to my new sisters...so sorry to be part of this family😢. A little about my journey thus far. Routine mammogram Jan. 8th this year with follow up US/spot compression then bx. Got the call on Jan 27th stating “unfortunately you have IDC”. I live in small rural area so opted to be referred to lg. Cancer center in my state. They did all the tests over and I met with a surgical oncologist that same day. He told me (with certainty)that I have triple negative disease, that it was aggressive, that it needed to come out (he recommended lumpectomy) and that the only course of treatment would be chemo followed by radiation. I was quite shocked as I had never heard of TNBC.

I had the lumpectomy and sentinel node surgery on 2/14. Pathology on tumor came back same as bx. er5%(weakly positive), pr-, her2-. So they tested tumor a 3rd time and said er is now 20% positive. That seemed strange to me that it could change from 5% (twice) to now 20%. Path report also changed from IDC to ILC. I am so confused and wondered if any of you have had a similar experience?

I am awaiting results of genetic testing as have a ton of breast cancer in family (I had BRCA 1 & 2 in 2009 which came back with no mutations). I am finally getting to see a MO next week & think we’ll be discussing oncotype test and any other tests needed. To date I have not had MRI, CT, PET or bone density done.

Due to the craziness of the whole TNBC & ever changing er value, I am so worried about being under treated. Am also worried that ILC could be lurking in left breast after reading all your posts. Any advice would be appreciated




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Feb 28, 2020 06:10PM jessie123 wrote:

It's frustrating when you get different results. I'm so sorry for you. If you doubt the diagnosis or want more confirmation you may want to get another opinion form a large cancer hospital --- maybe M.D. Anderson in Houston or one of the other well known cancer centers. Your hospital can send a small part of the tumor to them to analyze. You don't have to travel there. I did that and it made me more confident that my diagnosis was correct. I have a friend who was 25% estrogen positive and progesterone negative. She is NOT considered triple negative. The treatment if different so you really need to be sure about this. Good luck.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Feb 28, 2020 09:34PM Moderators wrote:

Hi RNShaffer59,

We're so sorry you find yourself here, but we want to extend a warm welcome to our community. We know how difficult this can all be, especially if you're getting conflicting information and results. Jessie123 had a great suggestion - confirmation one way or another will give you peace of mind and confidence in your treatment plan, which is so incredibly important. Please keep us posted on how it goes with your MO, we're all here for you!

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