1. < Breast Cancer

LCIS: What treatment(s) did you choose?

Posted by mayo101 @mayo101, Sep 23, 2022

Hello, I have been given the diagnosis of LCIS a few months ago, not invasive yet. After reading posts about invasive lobular carcinoma and that it is more difficult to treat than invasive duct carcinoma, I am now seriously considering pushing for a double mastectomy rather than taking tamoxifen, which will just lower the risk by 50%. Is there any LCIS patient whose doctor advise against this aggressive route? My doc isn’t totally against it given my age of 52. Any thoughts?

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southgawalker | @southgawalker | Nov 10, 2022

Lobular Carcinoma in Situ
Would anyone discuss this diagnosis and the options you chose based on post menopausal woman?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 10, 2022
In reply to @southgawalker "Lobular Carcinoma in Situ Would anyone discuss this diagnosis and the options you chose based on..." + (show)
@southgawalker

Lobular Carcinoma in Situ
Would anyone discuss this diagnosis and the options you chose based on post menopausal woman?

Jump to this post

@southgawalker, to help you connect with fellow members who have face LCIS treatment choices like @lisakinpa @michelleah @delormv @mayo101 @bfly1 @kel6022 @bgs1961 @slmremy, I moved your message to this existing discussion:

- LCIS: What treatment(s) did you choose? https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/

You may also be interested in this related discussion:
- LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/

What treatment are you considering?

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1 reply
southgawalker | @southgawalker | Nov 10, 2022
In reply to @colleenyoung "@southgawalker, to help you connect with fellow members who have face LCIS treatment choices like @lisakinpa..." + (show)
@colleenyoung

@southgawalker, to help you connect with fellow members who have face LCIS treatment choices like @lisakinpa @michelleah @delormv @mayo101 @bfly1 @kel6022 @bgs1961 @slmremy, I moved your message to this existing discussion:

- LCIS: What treatment(s) did you choose? https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/

You may also be interested in this related discussion:
- LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/

What treatment are you considering?

Jump to this post

Thanks. Just processing now.

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southgawalker | @southgawalker | Nov 11, 2022
In reply to @bgs1961 "Hi! I was offered the same when I was first diagnosed with LCIS in both breasts..." + (show)
@bgs1961

Hi!
I was offered the same when I was first diagnosed with LCIS in both breasts in the mid 1980's.
I was afraid of the Tamoxofin as I always seem to develop reactions to meds. So I chose 'watchful waiting' until 2008 when diagnosed with DCIS...I finally did not feel I could do 'watchful waiting' any more...felt like I had been 'lucky' & didn't want to risk it anymore. So in 2008 I had a bilateral mastectomy...I am going to be 80 this week & I feel I did the right thing...but most of my BC friends had implants. I did not & so far content with this decision. When going anywhere I use mastectomy bra...surprisingly comfortable.

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Do you mind sharing where you found your dr that deals only with breasts?

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Susan Manship Remy | @slmremy | Nov 11, 2022
In reply to @lisakinpa "Many discussions center around LCIS, which can be a precursor to breast cancer (any type and..." + (show)
@lisakinpa

Many discussions center around LCIS, which can be a precursor to breast cancer (any type and not just lobular) but not cancer itself.

Most LCIS is never found on its own through scanning opportunities but usually through a biopsy for another reason.

My pathology report shows LCIS which didn’t concern my surgeon but they did find ILC.

Not sure if this will help. Perhaps it’s best to gather more opinions. ♥️

Jump to this post

In 2013 I had bil Mx based in large part on decisions I made after MRI showed many more tumors. My bx showed ILC

I did not take tamoxifen because of the side effects and the stats did not show >17%

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mayo101 | @mayo101 | Nov 11, 2022
In reply to @slmremy "I too had LCIS stage one. I was “lumpy” for years. After annual mammograms for years..." + (show)
@slmremy

I too had LCIS stage one. I was “lumpy” for years. After annual mammograms for years 50-61. Talk over the results with my internist started things rolling - I had a second opinion who wanted me to wait - Onco/surgeon. I went to talk to an oncologist who asked to an mri - which was went the extensive nature of my tumor “field” was found. I had more than a few Tumors in each breast, one side invasive. That was found after the Bil Mx. So I appreciate that it is very difficult to visualize these tumors. That was when I decided having the bil mastectomy made the most sense of all the choices and I am glad I did it.

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Hello, May I ask what follow up screenings do you do after bilateral mastectomy. Since mammograms won’t be possible, how do you screen for breast cancer going forward because mastectomy doesn’t completely remove all the breast tissue.

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lisakinpa | @lisakinpa | Nov 12, 2022

My initial pathology report indicated that I had LCIS (which unlike DCIS, is not cancer). I’m told LCIS cannot be see on any imaging but rather usually found by chance through a biopsy or surgery and subsequently through a pathology report.

I was diagnosed with stage 1 invasive lobular cancer along with LCIS. My breast surgeon wasn’t concerned with the LCIS.

I had a lumpectomy and almost four years later, doing very well. I’m now 64.

Hope this might help. ♥️

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terrim27 | @terrim27 | Dec 2, 2022

I was diagnosed with LCIS and hyperplasia 4 years ago. It was found incidentally with a pet scan and missed by mammogram and u/s. I know it's harmless although I did have a lumpectomy and I go for annual mammogram and ultrasound. There is a lump that they biopsied 2 years ago and it's harmless scar tissue. I couldn't feel the lump personally.
My question is if LCIS doesn't show up why do we do follow ups? Also I have lost Approximately 7 kg in last 6 months for no reason. With that I can now see the lump that was biopsied and can also feel a hard lump under the nipple.
Am I right to assume it's more scar tissue as you wouldn't feel LCIS?
Also did anyone grow a hard lump after lumpectomy?

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1 reply
southgawalker | @southgawalker | Dec 3, 2022
In reply to @terrim27 "I was diagnosed with LCIS and hyperplasia 4 years ago. It was found incidentally with a..." + (show)
@terrim27

I was diagnosed with LCIS and hyperplasia 4 years ago. It was found incidentally with a pet scan and missed by mammogram and u/s. I know it's harmless although I did have a lumpectomy and I go for annual mammogram and ultrasound. There is a lump that they biopsied 2 years ago and it's harmless scar tissue. I couldn't feel the lump personally.
My question is if LCIS doesn't show up why do we do follow ups? Also I have lost Approximately 7 kg in last 6 months for no reason. With that I can now see the lump that was biopsied and can also feel a hard lump under the nipple.
Am I right to assume it's more scar tissue as you wouldn't feel LCIS?
Also did anyone grow a hard lump after lumpectomy?

Jump to this post

My understanding is that LCIS is only diagnosed through a biopsy. You can’t detect it on your own.

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1 reply
terrim27 | @terrim27 | Dec 3, 2022

That's what I thought. It must be scar tissue from the lumpectomy. Thank you

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