Anyone with just LCIS going in to PBX have invasive cancer?

I was given a 20% chance of developing invasive, and with such a low number, PBM was such an agonizing decision. I even asked my BS to bump that percentage up a bit lol. I had a PBM 4 months ago, & invasive was discovered in spite of a clear MRI 3 months before. ILC is very hard to find. My advice is that the numbers don't matter as much as your instincts.

Best of luck.

I don't know how the ILC ladies would receive the question, but it would be a good group of ladies to ask. I imagine they would be most helpful.



I've wondered how often ILC ladies were told LCIS is not so bad, really, so whatever, we'll catch it early and most early stage breast cancer is treatable anyway!



We've all experienced this tone on the LCIS forum, it's the dominate note.

Melissa----while it certainly  can happen that more serious stuff is found during PBMs for LCIS,  I don't think it is considered to be "pretty common". Studies I've read have stats of between 15 and 30% of more serious being found (meaning DCIS or invasive bc) during excisional biopsies after LCIS seen on core biopsies. I would venture a guess the stats are similar after PBMs. What they are watching for during the close monitoring is any DCIS or invasive bc (IDC or ILC).  While  things can be missed on mammo or MRI, the mammo is better at picking up LCIS and DCIS, and the MRI is better at detecting invasive bc's. My risk is estimated at 36.6%, but even the oncologist stated that is a "guesstimate", he really didn't know for sure. I also have family history of bc; my mom had ILC, so that further elevates my overall risk. The choice between dealing with this with close monitoring/preventative meds or PBMs is a very personal one to make. I didn't want to go the PBM route. I took tamoxifen for 5 years, now take evista, and do high risk surveilance of alternating mammos and MRIs. Do I ever question my choice? Sure, sometimes.  I don't think there is a person alive who doesn't sometimes 2nd guess themselves about their choices in life. But for the most part, I know that is has been the right choice for me and my life. I haven't had to have any more biopsies or lumpectomies in all these 9 years. If something more serious were to show up, will I have regrets? Maybe, but I  will know that I made the best choices I could with the info that I had at the time. PM me anytime if you want to talk.

Anne 

Hi Beacon800, This topic is of interest to me because I am scheduled for a mx for lcis in august.  When you talk about upstaging for FEA is that after an excisional or a mx?  I had FEA on stereotactic which lead to an excisional which is when lcis was found.  I know it is what it is, but I kind of want an idea of risk of upgrading after mx.

Yes.  25 years ago I had a fibro?? cyst removed. Starting in 2000: mammograms, followed consistently by ultrasounds (because of the number of cysts and the density), followed by cysts aspirations (none as effective as the very first aspiration). Found a different feeling lump in Oct 2011, prompted us to finally get a family doctor. He ordered mammogram and ultrasound. Nothing abnormal detected on report, but I got referral to breast surgeon. She did exam and aspirated 3 cysts immediately. She ordered core biopsy. Did that, took an unusually long time for the pathologists to get results; they said it was highly prolific abnormal rapid growth but it was not invasive cancer. BS recommended excision as soon as my schedule would allow (turned out almost 25 years to the day since last lumpectomy AND it was in nearly the exact same spot). Pathology of that lump = LCIS.

Didn't want to do tamoxifen for 5 years. Strongly considered "heightened surveillence." Husband and I decided that "hs" was too stressful (and we wanted to get off the stress bandwagon) and that we'd had enough of my abnormal breasts (BS assured us that menopause wouldn't make my breast magically become normal - I'd been hoping for YEARS that it would). So, time for PBMX with sentinel node removal and immediate TE AND hysteroscopy and endometrial ablation added on for other reasons.

Had PBMX etc on May 29th. On June 6th at surgical follow-up with BS, ICL 3mm found in same region as LCIS. Sentinel node clean. Other breast contained a lovely mix of everything short of invasive cancer and no discernible normal breast tissue.

At present, I've had 4 fills (350 cc each + the 50 cc I started with after surgery). No solid idea when we'll be done with the fills and PS will schedule exchange as soon as fills are done.

So, yes, I went in for PBMX due to LCIS and a 3mm ICL was discovered. 

Oh yeah, and I start tamoxifen on Saturday evening. 

Actually, recent scientific studies published by the Mayo Clinic say that LCIS is very difficult to diagnose with mammography since the lobular cells do not form a "lump" but instead line the wall of the lobules of the breast.  LCIS is typically an "incidental" finding through biopsies of any area of interest.  That is why most BS suggest having alternate MRI w/contrast and mammo alternating every six months.  The MRI is more likely to "light up" an area with high vascularization ( more blood vessels-a typical physical configuration of most cancers).  But these also could be misleading since chemical changes during a woman's monthy cycle, especially if she is pre or peri-menopausal, can result in false positives.

My LCIS diagnosis resulted from the discovery of 3 different lumps (all cancer free), and one false positive MRI.  However, all four biopsies turned out positive for ALH, and the last one bumped me up to LCIS.

As for the incidence of finding ILC or IDC in PBMX, there are not enough statistics out there right now.  I am still researching as much as I can to find the most current and reliable research.  The best scientific approach is to not believe everything you read.