Newly diagnosed LCIS - help!

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tpup
tpup Member Posts: 13

I am so encouraged that there is actually a forum just for this. After several mammograms and a needle biopsy, I was just diagnosed with LCIS. The doctor who did the biopsy recommended surgery, saying "it needs to come out." My ob just referred me to a breast surgeon who cannot see me for another 2 weeks. But she explained that during surgery they may check nodes, etc. - isn't the reason this is "in situ" because it is CONTAINED and not spread? Ugh. I know this is not aggressive or as serious as many other breast issues, but I am obviously worried. What if they missed other areas?

It sounds like my treatment options are: surgery, wait and monitor (prefer to do surgery to get it OUT), Tamoxifen??, other drugs like hormones??

 I have been on the birth control pill for 20 years. (I am 43). Should I stop it NOW? My ob said to talk to the breast surgeon, and didn't think being on it made much of a difference either way. I guess studies are really split 50/50 as to whether BCP contribute to breast cancer.

 And everything I have read confirms that I am not considered very high risk for future breast cancer?? True? Not true? I am overwhelmed. Anyone have advice? Thank you!

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    tpup-------generally after an initial diagnosis of LCIS on core or needle biopsy, they recommend an excisional biopsy---not to remove the LCIS necessarily, but to check for any invasive bc that might be in there along with the LCIS. They do not check nodes with LCIS as it is non-invasive. The 3 standard options are: 1) close monitoring 2) close monitoring with tamoxifen 3) BPMs.    I was diagnosed with LCIS 8 years ago and I also have family history of bc (mom had ILC) which further elevates my risk. I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. I took tamoxifen for 5 years and now take evista (since I'm post menopausal) and tolerate both pretty well with minimal SEs. I think most doctors would say no BCPs with LCIS, but it will be important for you to discuss it with your own doctors. LCIS does confer a higher risk for future invasive bc, about 40 to 50%, but we each have our own individual risk determined by many factors. It would be wise to see an oncologist after you have the pathology report from your exicisonal biopsy; they can help you with your risk and the pros and cons of preventative meds versus surgery. It's an extremely personal decision. Don't let anyone rush you--there is no rush with LCIS since it is non-invasive--so take all the time you need to research, talk with your doctors, or to just let it all sink in.

    Anne 

  • tpup
    tpup Member Posts: 13
    edited October 2011

    Thank you so much Anne. What is a "BPM"?

  • JanetM
    JanetM Member Posts: 336
    edited October 2011

    I was diagnosed with LCIS, ALH and ADH on excisional biopsy after finding LCIS and ALH on stereotactic core biopsy.  Right now I am doing the every 6 month follow up.  After the excisional biopsy we did discuss tamoxifen but for now I have chosen not to use it.  I have my first mammogram after surgery coming up in 2 weeks. 

  • beacon800
    beacon800 Member Posts: 922
    edited October 2011

    During your excision I am quite sure they will not remove any lymph nodes based on what you have so far. It is not called for at this point. From what I understand almost all LCIS has estrogen receptors which means yes, you should stop your bc pills now. Probably right now, as a matter of fact. You need a consult with an oncologist and a copy of your pathology report. If estrogen positive, they will suggest tamoxifen. It's effective in preventing breast cancer in your type of situation but has some side effects. Don't worry about what your ob says as they almost never l iw much about LCIS. It's not a common finding and it's not their specialty. Good luck and hang in there!

  • Irie4now
    Irie4now Member Posts: 16
    edited November 2011

    I was diagnosed with LCIS and ADH just over a year ago after my 2nd excisional biopsy, had 4 masses removed total from left breast..  My Gyn, BS ,( Breast Surgeon) and Oncologist all suggested PBMX (prophylactic bilateral mastectomy) I am just over a week post-op and my BS and I agreed it was the best discision.  They found many areas of LCIS and ALH in my right breast. As my BS said, it is cancer (carcinoma) it is just contained.  It does make your risk higher and tends to be found in both breasts.  Get 2nd opinions, I did.  My first Onco said I had nothing to worry about, U of MN doctors said I needed the surgery (my scans were proving difficult to read)  Nodes do not need to be checked, unless your already getting the mastectomy, they can check just sentinal nodes then.  Ask alot of ?s, and a second opinion.  I'm glad its out and don't have to constantly worry whether its becoming invasive.  Good Luck

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