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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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lesliesl | @lesliesl | Jun 17, 2025
In reply to @lc1sp123 "I am confused by what you say ... that PLCIS accounts for 5% of lobular cancers...." + (show)
Profile picture for lc1sp123 @lc1sp123

I am confused by what you say ... that PLCIS accounts for 5% of lobular cancers. PLCIS is not cancer. My breast surgeon said they still don't know if it's a direct pre-cursor of invasive breast cancer (if left alone). There is, however, a pleomorphic version of invasive lobular cancer. Is that what you are referring to? If so, that is different from PLCIS (a rare variant of the more classic LCIS) and is considered a risk factor for invasive lobular or invasive ductal cancer within one's lifetime (maybe more so ILC).

I hope you are doing well.

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I am just so so confused!

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lesliesl | @lesliesl | Jun 17, 2025
In reply to @tessspike "I'm wondering if genetic testing would help you decide. And are you pre- or post-menopausal? Personally,..." + (show)
Profile picture for tessspike @tessspike

I'm wondering if genetic testing would help you decide. And are you pre- or post-menopausal? Personally, I would go for the bilateral mastectomy to avoid the meds, MRIs, and constant wondering! I've always been glad I did.

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I am post menopausal and have been on hormone therapy for approximately 2 years. Although that is now coming to an end. Waiting on the genetic testing.

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lc1sp123 | @lc1sp123 | Jun 18, 2025
In reply to @lesliesl "They haven’t given me any name for a particular form of LCIS. They just say LCIS." + (show)
Profile picture for lesliesl @lesliesl

They haven’t given me any name for a particular form of LCIS. They just say LCIS.

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Then more than likely it's the classic version of LCIS (CLCIS) - more common.
However your pathology report would be key here.

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lesliesl | @lesliesl | Jun 18, 2025

What did Mayo recommend? I have an appointment next thursday

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jkh | @jkh | Jun 18, 2025
In reply to @lesliesl "I am new to this and just saw this. Do you mind me asking what option..." + (show)
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I am new to this and just saw this. Do you mind me asking what option you settled with? I am having to make the decision now and I am so lost I don’t know what to decide.

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I think it is best to listen to the advice and trust your gut when making decisions going forward. There is no perfect answer because each case is different. Whatever you decide know that is perfect for you.

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lesliesl | @lesliesl | Jun 18, 2025
In reply to @jkh "I think it is best to listen to the advice and trust your gut when making..." + (show)
Profile picture for jkh @jkh

I think it is best to listen to the advice and trust your gut when making decisions going forward. There is no perfect answer because each case is different. Whatever you decide know that is perfect for you.

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Thank you. I am 54 already done menopause have a strong family history of cancer just not breast. I don’t think I will be able to handle the stress every 6 months. I think I have decided on the mastectomy.

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jkh | @jkh | Jun 19, 2025
In reply to @lesliesl "Thank you. I am 54 already done menopause have a strong family history of cancer just..." + (show)
Profile picture for lesliesl @lesliesl

Thank you. I am 54 already done menopause have a strong family history of cancer just not breast. I don’t think I will be able to handle the stress every 6 months. I think I have decided on the mastectomy.

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Then that is a perfect choice with intelligent reasoning! Take care.

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anatomary | @anatomary | Jun 20, 2025

I have a diagnosis of multifocal LCIS...that means that there are two growths within the lobule BUT they originated from one site. So many types... if you get to look at your actual test results you should be able to see exactly what type (basically descriptions of what the tissue looks like) you have. If there is only LCIS, then I would imagine it is the classical presentation - linear cells.

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becks1126 | @becks1126 | Sep 4, 2025
In reply to @mayo101 "Hello, I have just been diagnosed with LCIS. I am considering taking Tamoxifen but is terrified..." + (show)
Profile picture for mayo101 @mayo101

Hello, I have just been diagnosed with LCIS. I am considering taking Tamoxifen but is terrified of the side effects. I read that a low dose tamoxifen of 5mg/day for 3 years is just as effective as 20mg/day in lowering my risk of breast cancer. Does anyone have any experience with low dose tamoxifen?

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I was diagnosed with LCIS in 2024, they recommended me to take 20mg/day of Tamoxifen, but I started with 5mg/day because i was nervous about the side effects. I didn't have any side effects to that, but due to the fact that I had to cut the 10mg pill in half, I was concerned about losing the "dust" that happened when it was cut, so I am now takin 10mg/day for 5 years and have had no side effects. it has been a little over 5 months. Hope that helps.

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mayo101 | @mayo101 | Sep 4, 2025

I am thinking of doing ultrasound screenings following my preventative double mastectomy for LCIS. It has been 2 years since the mastectomy and I have told to just do periodic palpating of the chest wall and underarms as a way to monitor for abnormalities. Does anyone have any experience or inputs as to whether ultrasound can detect anything cancer related for someone like me with mastectomy without reconstruction?

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