1. < Breast Cancer

LCIS multiple biopsies in 1 1/2 years.

Posted by rlcoleman @rlcoleman, Jun 7, 2023

I was diagnosed with LCIS October 2021. I was 50 years old. Strong maternal family history of breast cancer but no genetic markers found. I did not have a lumpectomy just tamoxiphen prescription. Since then, I have had 5 biopsies, including lymph nodes. I have a total of 7 clips in my left breast. All biopsies came back fine since the inital diagnoses biopsy. (Thank God). Every 6 months I do MRIs, mamos, ultrasound, and it always leads to biopsy.
I have tried tamoxiphen twice and was super nauseous from it. Tied lower dose same effect. Tried Anastrozole. Still sick. So I am not on anything at the moment. Not being able to take the meds worries me. I feel like I am waiting for the ball to drop.
My questions are this. Has anyone else gone through so many biposy? Also, has anyone considered or did mastectomy for prevention after LCIS diagnosis and many biopsies?

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 7, 2023

@rlcoleman I am just spinning thinking of how crazy making that would be. Waiting on biopsy results over and over let alone worrying about if they will catch it if it does come, when they keep looking and don’t find it. It sounds like a crazy upside down version of the boy who cried wolf.
To address your question about hormone therapy. There are a bunch of different drugs to try and sometimes it is just finding the right one. I will tell you I had some nausea with anastrozole for a couple months then it stopped. I was on it for years with some side effects related to the hormones, like hot flashes. Tamoxifen was a lot more difficult for me.
Have you talked to your doctor about a mastectomy?

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1 reply
rlcoleman | @rlcoleman | Jun 7, 2023
In reply to @auntieoakley "@rlcoleman I am just spinning thinking of how crazy making that would be. Waiting on biopsy..." + (show)
@auntieoakley

@rlcoleman I am just spinning thinking of how crazy making that would be. Waiting on biopsy results over and over let alone worrying about if they will catch it if it does come, when they keep looking and don’t find it. It sounds like a crazy upside down version of the boy who cried wolf.
To address your question about hormone therapy. There are a bunch of different drugs to try and sometimes it is just finding the right one. I will tell you I had some nausea with anastrozole for a couple months then it stopped. I was on it for years with some side effects related to the hormones, like hot flashes. Tamoxifen was a lot more difficult for me.
Have you talked to your doctor about a mastectomy?

Jump to this post

Hi. Thank you for your response. I actually had a consult today with the plastic surgeon and a conversation with my doctor right afterwards. She is very supportive in my decision, whatever it will be. The waiting is nerve-racking and stressful. Every time I have my MRI and mamo there is something suspicious that needs to be biopsied.
I am looking for opinions from others. Am I being too proactive and paranoid?

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beachysol | @beachysol | Jun 8, 2023

Lobular does grow in a linear, spiderweb-like fashion, and very hard to see especially in dense breasts. While monitoring does allow them to find it “early”, it’s still cancer when they do finally find it.

I’ve had LCIS since 2008. All in left breast. Never taken tamoxifen. Well, I tried it in 2011 for a month and couldn’t handle it. I’ve had 4 needle bx and 3 excisional bx. In 2020, at age 50, they found pleomorphic LCIS (PLCIS) and extensive LCIS (my 3rd excisional bx). Pleomorphic, and florid, are two subtypes of LCIS and are more advanced and considered aggressive. And, considered an actual precursor not just high risk.

Genetic testing clean. No family history. Last year they moved me to MRIs every 6 months, apparently both breasts are very busy (and dense). I can no longer take the waiting and monitoring. I’m going for a prophylactic double mastectomy (PDMX) in July 6.

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2 replies
timely | @timely | Jun 9, 2023

I had clean genetic testing too.
Now, an article(Pub Med.?) came out in Nov. 2022 showing a link to LICS and LIC if one has stomach cancer, ovarian cancer, and intestine cancer in your family which I do.
I had lumpectomy in Nov. 2022.

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rlcoleman | @rlcoleman | Jun 9, 2023
In reply to @beachysol "Lobular does grow in a linear, spiderweb-like fashion, and very hard to see especially in dense..." + (show)
@beachysol

Lobular does grow in a linear, spiderweb-like fashion, and very hard to see especially in dense breasts. While monitoring does allow them to find it “early”, it’s still cancer when they do finally find it.

I’ve had LCIS since 2008. All in left breast. Never taken tamoxifen. Well, I tried it in 2011 for a month and couldn’t handle it. I’ve had 4 needle bx and 3 excisional bx. In 2020, at age 50, they found pleomorphic LCIS (PLCIS) and extensive LCIS (my 3rd excisional bx). Pleomorphic, and florid, are two subtypes of LCIS and are more advanced and considered aggressive. And, considered an actual precursor not just high risk.

Genetic testing clean. No family history. Last year they moved me to MRIs every 6 months, apparently both breasts are very busy (and dense). I can no longer take the waiting and monitoring. I’m going for a prophylactic double mastectomy (PDMX) in July 6.

Jump to this post

Thank you for your response. I get the anxiety. This is why I posted on here because I thought it was just me being over anxious. It is grueling the waiting, testing, the biopsies, waiting again.
Hugs to you for your upcoming surgery. I am 95% sure I will be going ahead with it in the fall.
Good luck!

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1 reply
ssmab | @ssmab | Jun 10, 2023
In reply to @rlcoleman "Thank you for your response. I get the anxiety. This is why I posted on here..." + (show)
@rlcoleman

Thank you for your response. I get the anxiety. This is why I posted on here because I thought it was just me being over anxious. It is grueling the waiting, testing, the biopsies, waiting again.
Hugs to you for your upcoming surgery. I am 95% sure I will be going ahead with it in the fall.
Good luck!

Jump to this post

I had LCIS for 20 years with 2 previous biopsies, a nipple removal due to a Papilloma in 2021 showing LCIS and ADH, considered a double mastectomy but decided against it since it was a marker for breast cancer but not really cancer. Then in late 2022 a breast MRI showed ILC in L breast and IDC in right breast. Had a bilateral mastectomy. I wish I had the bilateral mastectomy in 2021. So I think you are making a wise decision. Bet wishes to you.

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dlst | @dlst | Mar 10 6:41pm
In reply to @beachysol "Lobular does grow in a linear, spiderweb-like fashion, and very hard to see especially in dense..." + (show)
@beachysol

Lobular does grow in a linear, spiderweb-like fashion, and very hard to see especially in dense breasts. While monitoring does allow them to find it “early”, it’s still cancer when they do finally find it.

I’ve had LCIS since 2008. All in left breast. Never taken tamoxifen. Well, I tried it in 2011 for a month and couldn’t handle it. I’ve had 4 needle bx and 3 excisional bx. In 2020, at age 50, they found pleomorphic LCIS (PLCIS) and extensive LCIS (my 3rd excisional bx). Pleomorphic, and florid, are two subtypes of LCIS and are more advanced and considered aggressive. And, considered an actual precursor not just high risk.

Genetic testing clean. No family history. Last year they moved me to MRIs every 6 months, apparently both breasts are very busy (and dense). I can no longer take the waiting and monitoring. I’m going for a prophylactic double mastectomy (PDMX) in July 6.

Jump to this post

Hi Beachysol! This information is helpful. How are you feeling about the PDMX? Thank you! - DLST

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