I have LCIS, anyone else?

Posted by Langold @rarelybees2889, Sep 19, 2019

I have LCIS, anyone else here? The information on it is contradictory..Just started going to Mayo for this.

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@nbrooks

I was just diagnosed with LCIS. I couldn’t get in with a surgeon until Sept. 19th. I have read a lot about this condition and treatment options. Can anyone share what treatment options that worked? Has anyone gone to see a specialist that specifically treats LSIC?

Thank you,
Nancy Brooks

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I am currently 67 years old. When I was 49 I was diagnosed with LCIS. I was treated with tamoxifen for 5 years. At age 63 I was diagnosed with ILC. So, I wish I was a successful story, however, that treatment did not work for me. I hope this information will be helpful in your journey. Best of life to you.

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@nbrooks

I was just diagnosed with LCIS. I couldn’t get in with a surgeon until Sept. 19th. I have read a lot about this condition and treatment options. Can anyone share what treatment options that worked? Has anyone gone to see a specialist that specifically treats LSIC?

Thank you,
Nancy Brooks

Jump to this post

I'd like to extend a warm welcome to the group and express my deep empathy regarding your recent diagnosis of LCIS. I personally was diagnosed with LCIS in February 2023 and subsequently underwent a stereotactic biopsy of my right breast. I had a nurse present in the room to help ease my anxiety, and the doctor showed great compassion throughout the procedure. Following the biopsy results, the doctor informed me that I needed to proceed to phase 2 of the process, which involved a lumpectomy with wiring. I understand that this can be an intimidating process. I received the results of the lumpectomy on July 31, and thankfully, the condition did not progress to DCIS. While Tamoxifen was recommended, the doctor decided to monitor me first before prescribing it.

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@jkh

I am currently 67 years old. When I was 49 I was diagnosed with LCIS. I was treated with tamoxifen for 5 years. At age 63 I was diagnosed with ILC. So, I wish I was a successful story, however, that treatment did not work for me. I hope this information will be helpful in your journey. Best of life to you.

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What are the side effects of tamoxifen? Were there ever times that you needed to take a break from the medication?

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@isaish53n5

What are the side effects of tamoxifen? Were there ever times that you needed to take a break from the medication?

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I had no noticeable side effects for years. Year 4 my uterus grew quite rapidly. I had it removed along with my ovaries. Which put me into full blown menopause. Not so fun, but…it totally stopped any bladder leakage! Yeah!!!

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@isaish53n5

I'd like to extend a warm welcome to the group and express my deep empathy regarding your recent diagnosis of LCIS. I personally was diagnosed with LCIS in February 2023 and subsequently underwent a stereotactic biopsy of my right breast. I had a nurse present in the room to help ease my anxiety, and the doctor showed great compassion throughout the procedure. Following the biopsy results, the doctor informed me that I needed to proceed to phase 2 of the process, which involved a lumpectomy with wiring. I understand that this can be an intimidating process. I received the results of the lumpectomy on July 31, and thankfully, the condition did not progress to DCIS. While Tamoxifen was recommended, the doctor decided to monitor me first before prescribing it.

Jump to this post

Thank you for responding to me. I go see the surgeon on Sept 19th. I have so many questions. Did you see a doctor that specializes in LCIS? My biopsy was both breast and it was found in both.

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Would you recommend seeing a doctor that specializes in LCIS? Although I know this is not cancer, I don’t take it lightly. I want to be proactive with my treatment plan.

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I had multiple breast biopsy samples show LCIS. But, I also had odd shaped lymph node that showed lobular carcinoma and I had sclerotic bone lesions (30% can be malignant) and mine showed carcinoma breast origin. I'm doing well. But I think you want to be sure EVERYTHING is checked, and yes, see lobular specialist. Things came together for me when I finally saw the lobular specialist and my scans are negative, bone lesions are healing and I'm feeling good.

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Please keep us updated! Many of us with ILC are always willing to share once you get a treatment plan! At 57 yrs, I had lumpectomy and finished radiation in Jan 2023 - currently on Letrozole, AI as I'm post menopausal. Hang in - xoxo

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Yes, I have LCIS, I underwent a lumpectomy July 6, 2023. They also wanted to explore other signs of ADH, FEA which are precursors of DCIS. The surgeon removed the LCIS (no upgrade). My doctor wanted to monitor me versus prescribed me with tamoxifen. I’m praying for a great outcome. I hope this helps a little

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I have LCIS and ADH. Was recommended low dose of tamoxifen - I have not started taking it yet because I want to find out first how others are tolerating the low dose.

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