Anyone with LCIS, tamox, and then cancer?

I was diagnoses with LCIS, ALH and ADH after 3 years of every 6 month diagnostic mammos and sonograms.  After my lumpectomy in May my BS suggested starting Tamoxifen and I decided not to because I was already having issues with large fibroids and bleeding every month and I didn't want to deal with those issues and tamoxifen.  I ultimately had a hysterectomy and ovaries removed 2 months later so I am dealing with surgical menopause which is no picnic.  I have recently found a lump in the same breast that had the lumpectomy and it doesn't show up on either the mammo or sonogram so tomorrow I am going back to the BS to see what she thinks.  Not sure where this will take me, if it's another lumpectomy I am not sure that I can keep doing this watch and wait deal.  I don't think that there are any guarantees with this disease, it does what it wants, when it wants.  We can certainly try to weigh the options but ultimately the decision of what do is ours.

marie-----I was diagnosed with LCIS 8 years ago and my risk is further elevated by family history of bc (mom had ILC).   After wieghing all the pros and cons, I decided to go on tamoxifen and take the very low risk of serious SEs (less than 1% for blood clots or endometrial cancer)  to help decrease my high risk of invasive bc (doctor guessed mine to be 36.6%, but stated it could be higher, he really wasn't sure). I took it for the full 5 years and tolerated it well. I now take evista and tolerate that well too. I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. (so essentially I'm "seen" by some method every 3 months, which gives me more peace of mind that I'm watched so closely). I haven't needed any further biopsies in the past 8 years, so for me the meds are working well. I'm not ready to go the route of PBMs. There are definitely pros and cons to both choices and the decisions are so difficult and personal. But no one can say what is right for you and your particular situation. If you do decide on taking tamox, be sure to talk with your doctor about having a yearly transvaginal US to monitor both the uterine lining and the ovaries. (and about taking a daily baby aspirin (81 mg) to prevent blood clots).

Anne 

donna------the LCIS might have been there all along, (and not detected), there's no way to tell. But by taking tamoxifen the past 3.5 years, it may have prevented you from developing an invasive bc.

I was diagnosed with LCIS 8 years ago---I took tamox for 5 years, now I take evista for further preventative measures, and I continue with high risk surveillance of alternating mammos and MRIs every 6 months. My risk is further elevated due to my mom's history of ILC.

 You were actually already considered high risk due to your DCIS.  The main thing with LCIS is that it is a bilateral disease, so both breasts are at risk. Praying you have  no more DCIS found or any invasive bc.

Anne