LCIS - help me make it make sense

Hopefully this Mayo Clinic article can clear things up for you.
https://www.mayoclinic.org/diseases-conditions/lobular-carcinoma-in-situ/symptoms-causes/syc-20374529
If you search LCIS on connect, you will find that many of the members with this diagnosis are making treatment decisions.
Watch and wait isn’t what I would call the active treatment of radiation and hormone blockers. Watch and wait usually refers to increased monitoring only. Maybe these were the choices you had? Could it be watch and wait, or active treatment?

@ladylorelei, I can see why you're confused, scared and mad. It sounds like you have more questions than answers at this point. I'm tagging fellow members like @hobo @annie291 @meg55 have experience with LCIS and ALH and may be able to share some insights.

I can understand your reaction of just wanting to remove your breasts. And that may be a prophylactic option for you. I would start by asking more questions to have confidence in your care. Here's some of the questions I would ask:
- Is prophylactic mastectomy a recommended option for me? Why or why not?
- What are the risk factors of developing breast cancer with and without treatment like radiation or hormone therapy?
- How does treatment reduce my risk factors?
- If I chose watch and wait, what indicators should I watch for? When might I need treatment?

@ladylorelei, do you have a follow up appointment soon to ask more questions?

Same here. My first doctor recommended mastectomy. Second option doctor said hormone therapy and watch and wait. After 2 weeks I decided I had watched and waited long enough. I am scheduled for surgery the 30th . I have cancer everywhere in my immediate family. I have taken care of so many of them. I do not want the worry of putting my family through that.

I was diagnosed with LCIS in 2023 and my first reaction was “cut them off”, but the surgeon strongly discouraged and instead meds (Raloxifene) and monitoring MRI/Mammo every 6 months. Then in January 2024 diagnosed with DCIS right side, had lumpectomy and 15 days radiation and new med (Anastrozole). Then January 2025 diagnosed with IDC left side, same treatment as DCIS lumpectomy, 15 days radiation and new Med (Letrozole). In retrospect, I do agree with my Dr. as the last 2 years while not fun, were much less invasive than bilateral mastectomy. The plan is still to monitor every 6 months, but if anything new pops up net year, I’m going back to my original thought of mastectomy. You can ask about Oncotype Score which further helps to assess your risk. I hope this helps

Did you have a
0-E Cadherin diagnosis on your pathology test?

0-E Cadherin wasn't discussed, but I have now reached out to my Oncologist to ask.

I would be very interested to know what you oncologist had to say.
All the best

Greetings all,
Just adding my experience here. Diagnosed with ILC in August 2023 in right breast, and LCIS in left. Two highly respected cancer breast surgeons here in NYC had different opinions — both recommended lumpectomy of invasive ILC in my right breast, but one said LCIS should absolutely be removed— and the other surgeon (one of the most experienced at Memorial Sloan Kettering) said “it’s not cancer and shouldn’t be removed. That will leave you with scar tissue that will complicate further monitoring.” So — I trusted her and only had lumpectomy (& radiation) on the invasive one. Now on Letrozole for 5 years, which is proving challenging, but hopefully decreasing recurrence risk 🤞🏼.
Hope my story is helpful!

What I don’t understand is that when performing colonoscopy doctors always remove polyps and if they’re precancerous you’d go back for screening in 3 years. Correct me if I’m wrong, both LCIS and AHP are precursors for cancer. Why wait for them to become cancer. They might not, but once they become cancer you can’t be sure to get rid of it forever. Cancer cells can metastasize through blood stream or lymphatic system. Even with negative sentinel lymph node, metastasis can happen. So why watch and wait? Local recurrence is usually detected early, but metastasis is often not easily detected.

I echo your sentiments; if it's pre-cancer, why not treat it before it becomes cancer? From my understanding it really depends on your lifetime risk level to develop BC is; if your risk level is high, aggressive treatment, such as lumpectomy or prophylactic mastectomy are options - but if your risk level is low, you're less likely to develop breast cancer and this is why they like to monitor rather than be more invasive/damage more tissue/etc.

Plus the "C word" makes some people very anxious, and of course they would want to rid themselves of the risk, but it might not be the best option for them... so I looked to our doctors or genetic counselors, etc. to help us make sense of our individual conditions and what is the best path forward.

I am sure there are really great physicians with differing opinions out there based on how they interpret the data or the outcomes that they have seen. This isn't discussed often (differences in opinion) in research literature, or openly in public forums - I would imagine surgeons do openly challenge one another at research conferences, etc. once again, it boils down to us educating ourselves further thinking about what our physicians, or team, are telling us - and Us going with their recommendation or seeking more advice.