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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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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nbrooks | @nbrooks | Nov 23, 2023
In reply to @isaish53n5 "I'd like to extend a warm welcome to the group and express my deep empathy regarding..." + (show)
Profile picture for isaish53n5 @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.

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I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.

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5 replies
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kflinn | @kflinn | Nov 24, 2023
In reply to @nbrooks "I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a..." + (show)
Profile picture for nbrooks @nbrooks

I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.

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I was diagnosed in April 2023. I had surgery in May and Thank God was all clear. I am 60 and in Menopause so they recommended Raloxifene . I was on Bonita years ago and came off it because the side effects were awful. I have decided not to take Raloxifene. I am on schedule probably for the rest of my life MRI-6 months later Mammography and Ultra Sound. This was not an easy decision but for me it is the decision I am comfortable with. I have made a few minor life changes to hopefully help. Almost every article I read says a very few percentage 1-3 % of women who are diagnosed with LCIS ever come down with Breast Cancer. my doctor was supportive in my decision. If I continue to get diagnosed with LCIS I will have a double Mastectomy. I had the gene test and was all negative. I pray everyday and I will pray for you and your decision.

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Colleen Young, Connect Director | @colleenyoung | Nov 26, 2023
In reply to @nbrooks "I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a..." + (show)
Profile picture for nbrooks @nbrooks

I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.

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@nbrooks, keep in mind that not everyone experiences side effects or severe side effects from tamoxifen. One can get a distorted impression from discussions on a forum such as this one. It is the people who experience side effects who seek support to help them through treatment. The women who don't suffer side effects go on with life. You can always start treatment to see how you tolerate it.

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1 reply
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nbrooks | @nbrooks | Nov 28, 2023
In reply to @colleenyoung "@nbrooks, keep in mind that not everyone experiences side effects or severe side effects from tamoxifen...." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@nbrooks, keep in mind that not everyone experiences side effects or severe side effects from tamoxifen. One can get a distorted impression from discussions on a forum such as this one. It is the people who experience side effects who seek support to help them through treatment. The women who don't suffer side effects go on with life. You can always start treatment to see how you tolerate it.

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My other concern with taking this medication is I have Lupus. I have spoken with my Rheumatologist. This medication plus Lupus increases my chances of getting Uterine Cancer; which is harder to diagnose. What is your opinion on this part of the situation I am in?

Thanks,
Nancy

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1 reply
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kflinn | @kflinn | Nov 29, 2023

I believe everyone’s decision is personnel. There were many factors in my decision. Keep communication open with your doctors and find s decision that is comforting to you. Keep up on your doctor visits every 6months it’s important. Like my doc said live your best life , make healthy choices that are right for you. Praying for you.

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gardenfairy | @gardenfairy | Nov 29, 2023
In reply to @nbrooks "I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a..." + (show)
Profile picture for nbrooks @nbrooks

I have LCIS in both breast. And Atypical ductal hyperplasia in my right. I had a lumpectomy in both and thankfully it all came back clear. I haven’t seen an oncologist and no one has recommended that to me. They are wanting me to start Tamoxifen in March. I am concerned with all the side affects. I will be having a mammogram and MRI once a year. I feel lost as to what I should do.

Jump to this post

Back in 2006 or 2010 when I started to get a lot of atypical ductal hyperplasia my surgeon brought up the option of Tamoxifen. I chose not to because of the risk of blood clots. I've so far been managed okay with every 3 yr MRI, annual mammo and every 6 months ultrasound for 2-3 years. I had lumpectomies in 2006, 2010, and 2018 for papilloma, ADH, sclerosing scar. But I'm now in my 2nd year of abnormal MRI and mammo results on both breasts heading to two biopsies. I've done A LOT of research the last week. Do you know if you have the pleomorphic type of LCIS? That carries a higher risk for development of cancer.

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1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 2, 2023
In reply to @nbrooks "My other concern with taking this medication is I have Lupus. I have spoken with my..." + (show)
Profile picture for nbrooks @nbrooks

My other concern with taking this medication is I have Lupus. I have spoken with my Rheumatologist. This medication plus Lupus increases my chances of getting Uterine Cancer; which is harder to diagnose. What is your opinion on this part of the situation I am in?

Thanks,
Nancy

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@nbrooks, oh that is also a very important factor to consider - other conditions - in your case lupus. I know the decision is hard. But you're doing a great job at gathering all the information you can to make the decision with your doctors that is right for you.

I would ask the oncologist and rheumatologist to give information about the risks and benefits of your options. Hopefully there is enough population data together with your personal medical history to answer questions like:
- What is my risk of breast cancer with and without taking tamoxifen?
- What is my risk of uterine cancer with and without taking tamoxifen?
- How might this medication effect lupus?

They won't be able to give definte answers or guarantees, but hopefully they can give you guidance.

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noodle | @noodle | Dec 19, 2023
In reply to @jmh22 "I had multiple breast biopsy samples show LCIS. But, I also had odd shaped lymph node..." + (show)
Profile picture for jmh22 @jmh22

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 share who was the lobular specialist that you saw?? Thank you

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christylv | @christylv | Feb 25, 2024
In reply to @nbrooks "Would you recommend seeing a doctor that specializes in LCIS? Although I know this is not..." + (show)
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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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Hi! How are you doing with your resent diagnosis? I was diagnosed with AHD in December. Just had a lumpectomy this past week to remove the two sites they found on a biopsy that were present with ADH. Did you go see a breast surgeon yet?

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christylv | @christylv | Feb 26, 2024
In reply to @isaish53n5 "I'd like to extend a warm welcome to the group and express my deep empathy regarding..." + (show)
Profile picture for isaish53n5 @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

How are you doing ? Did you end up starting the tamoxifen?

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