LCIS: What treatment(s) did you choose?

I know these are all the most difficult decisions, and finding all the right answers to our questions, well, that just never seems easy. We can’t tell you what to do, and I don’t have lobular cancer, but I can tell you there is a very broad discussion about mastectomies and reconstruction, where you can ask your question about that and connect with others who have asked the same.
- Mastectomy and breast reconstruction pros and cons? https://connect.mayoclinic.org/discussion/mastectomy-1/
For my part, I asked and was turned down for a mastectomy, and still wish I had gotten one. That page also deals with questions of reconstruction.
Have you discussed this with family at all?

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. ♥️

I am 56 and I was diagnosed with LCIS a year and a half ago. I have been gathering information about LCIS since then. I am on the "every 6 month plan". I get a mammogram and a visit with my breast surgeon and 6 months later a get an MRI to watch the area and any other area that may turn up in either breast. Last year I had genetic testing done to test for a genetic link because my grandmother had breast cancer. None was found. I took Anastrozole for 6 months and I had side effects that were not tolerable for me. I read on this site that many women did not have side effects taking the estrogen suppressing drugs so I thought it was worth trying. It didn't work for me. I will never miss either 6 month appointment and if anything changes on the mammogram or MRI then I will reaccess. I am also committed to a healthy lifestyle with exercise and a good diet. I feel comfortable with this plan and have moved on with my life.

Hello @lisakinpa ,

I have been diagnosed with atypical lobular hyperplasia (ALH), which I know is only a marker for cancer, but I am getting a second opinion about whether it should be removed. I understand that you have been diagnosed with LCIS and was wondering if you had any treatment for it. It is written that your surgeon wasn't concerned, so what was recommended? I'm just trying to find out more information that would support the "wait and see if cancer pops up" approach, or if I should get it removed since cancer is at times found when ALH is removed. Thank you! @delormv

Hello. Through my biopsy, I was diagnosed with invasive lobular carcinoma.

I had a lumpectomy with clean margins but my surgical pathology report noted a small amount of LCIS near the margins.

My breast surgeon indicated that LCIS is not cancer but can sometimes be a precursor although it’s quite common and usually only found when having a biopsy for another reason.

Therefore, she wasn’t worried at all and made no indications or suggestions to remove it.

Perhaps it’s because I was just diagnosed with breast cancer? I’m actually not sure. It’s been over three years and I’m doing great.

Nothing else has ever showed up during my annual mammogram.

I went on to have radiation and chemo because I’m also Her2+.

Not sure if this will help. Perhaps ask your doctor if LCIS can be found in more than one place within your breast tissue. ♥️

I had lobular also...stage 1.
I went for bilateral mastectomy myself and 5 yrs of tamoxifen.
I was 58 at the time. Happy I went that route

I was diagnosed with LCIS. An abnormal mammogram led to a stereotactic biopsy. They found the LCIS. Hearing this, I was determined that a bilateral was the answer bc every woman on my mother’s side ( grandmother, mother, 4 aunts and a cousin) had breast cancer. The general surgeon sent out a genetic test for me.
While this happened, I went to an oncology breast doctor who only deals with the breast. Her whole team, from radiologist to mammo/MRI technicians and nurses deal only with breast. Even with my family history, Dr. R. Put me on a 6 month rotation of Mammo and MRI appointments where I would meet with the professional at every 6 month exam. At any change, we will re access the plan. I feel very comfortable with this plan. I encourage everyone to see an oncologist and get the genetic testing that looks for more that the Bracca1/2 gene.

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.

My doctor enlisted me into a breast cancer group. I have a mammogram and discuss with radiologist immediately. Six months later, I have an MRI, and again, immediately talk with radiologist. This team of doctors only deal with breast cancer. Come to find out, this “suspicious “ group of cells that warranted a biopsy, has been there since 2019. No radiologist had suggested it needed any kind of attention. Needless to say, I was shocked.
Because my doctor is a breast oncologist, I’m trusting her suggestion of wait and see. If any changes occur, I will be going for a bilateral.

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.