LCIS

Kokoo- Hi and welcome. Not a great reason to meet this way, but the ladies here have all been so wonderful and helpful to me. I too was diagnosed with LCIS and DCIS over 7 yrs ago. They never really told me much about the LCIS, but instead talked about how curable the DCIS was. I had a lumpectomy and radiation and went on with my life never thinking about the LCIS until now unfortunetly. I have recently been diagnosed with invasive cancer on the other side. I really can't say if I would have done anything different at the time. I was so afraid of a mastectomy that I did what they said. I too did not take tamoxifen. I am schedued for another Lumpectomy with mammosite radiation next week. They are now really pushing the tamoxifen, but I am not sure. I have been doing a lot of research on it and I am afraid to take it. I think you have to do what makes you comfortable and can live with.  I am going to have my overies suppressed via meds do to the fact that my estrogen receptor was 90% positive. I am not sure if they can do that test on LCIS. Maybe someone else on this site will know the answer to that. I wish you the best.

Hi Kokoo,  I was 56 when diagnosed with multifocal LCIS in both breasts--found with three biopsies done at the same time, all of which were negative. LCIS is always found while poking around for something else, because it's not visible on any imaging.  That diagnosis was just about a year ago, and I made a near-immediate decision to do the prophy bmx, with immediate reconstruction. Initially I chose implants, but after more research changed plans to do a diep autologous (fat transplant, if you will) reconstruction.

I had the surgery last July and recovery was a bit difficult for about two weeks (the diep part seriously rearranges your body parts!), but the pain factor was no greater than the 2 C-sections I'd had 27-30 years earlier.  To your wish to just live your golden years, I want you to know that I feel stronger than I was before all of this (prospect of the bmx/diep motivated me big time to exercise and lift weights for 3 months to prepare, thinking it would ease my recovery, which it did).  I also feel that I got an 'extended warranty' out of the surgery.  I don't look exactly like my old self, but I'm plenty happy with my diep result and in all ways, I am glad I made the decision I did.  Golden years: bring them on!

Now, my story feels like a very happy ending to me, but my pathway through LCIS is one of so many choices, which you know. PBMX may not be the answer for you.  This LCIS forum is full of very caring women who are incredibly respectful of each others' choices in how to respond to an LCIS diagnosis. I feel confident that within a day or so, you will find many more posts by women who will explain their own decisions, and why.  Check out the older LCIS threads, too, because there are several where women have posted questions similar to yours.

My own decision had another layer to it, because my mom, her sisters, their mother, and their grandmother all had BC, and only my mom survived (she's 82 now!). I'm BRCA negative, but still...the 'family disease' haunted me so much growing up that when I learned I had LCIS, my immediate thought was wow...I'm really the fortunate one in the family, because I got an early warning signal. So I decided to skip 'my turn' at BC by taking the surgical approach.  Of course, I still have risk, because even the most talented breast surgeon cannot remove every single breast cell, but the risk is so small that I feel comfortable looking forward to golden years instead of looking over my shoulder for signs of trouble.

One encouraging part of the LCIS diagnosis is that it's never an emergency.  You have plenty of time to continue to do your research, talk to women who have taken the various paths offered us, and reflect on what you learn before making a decision.

Also, you have time to prepare physically, if your choice leads you to surgery.  Having a mastectomy brings some recovery challenges, and perhaps more if you opt for reconstruction, especially with one of the autologous reconstruction options.  Mastectomy, even with zero lymph nodes removed, brings some risk of lymphedema, especially breast lymphedema, and researchers know for sure that being overweight adds to that risk. So, if you look in the mirror and see more than you would like, and/or if you're not as active as you might wish to be, taking steps toward better fitness and weight control while you're processing your LCIS knowledge---will reduce some surgical risks, make you stronger, and help manage STRESS!  And managing stress is a good strategy no matter what LCIS path you choose.  (If you're already into fitness, I know that I'm speaking to the choir, so to speak--sorry!)

If you would find it helpful to chat with voices instead of electronically, PM me and we can arrange to talk.  I would never lobby for any one way of dealing with LCIS, but perhaps if you talk with a variety of women who have taken different paths, it will help you focus your questions and prepare you for continued discussions with your doctors.

Best wishes as you continue to process all that comes with this crazy diagnosis.

Carol 

Hi Kokoo,

I was just diagnosed with LCIS as well.  Initally I was so happy it was benign but now the reality is setting in.

My Mom had bc young. Not BRCA +. I have had 10 biopsies in 4 years. All atypia now LCIS. I am done.  I told my surgeon as he wheeled me into the OR that if this biopsy comes out anything but totally benign, I want a mastectomy.  

So, the decision was somewhat easy for me.  I have had years to mentally prepare for this possibility.  I am opting for a nipple sparing mastectomy with immediate reconstruction.

I know how hard this is.  It just sucks.  However, I also feel greatful that I am ahead of this disease and I am in control now.

Best of wishes 

I just typed a boatload on this topic on another LCIS thread. It's readily available on the LCIS forum.

In a nutshell, the finding of LCIS will not amount to anything requiring emergency decision making. Take a moment to get over the major discomfort of the word cancer being breathed in a room in which you are the object of the attention. The odds are, no invasive cancer will come of it. So you have time to nose around and figure out a plan that works for not only your breast health but your entire self, your lifestyle and those important loved ones.

Most likely you will be advised that lobular cancer in situ LCIS may not ever progress into an Invasive Lobular Breast cancer, ILC. That while LCIS signals an increased odd of other breast cancers like DCIS or IDC, the odds still are low.

The course of action is perhaps an antihormal and regularly scheduled breast exams alternating every three months with test such as a mammogram at a six month mark MRI's alternating. Insurance, money, proximity to an NCL center and your free time help things move along as you embark on years of testing.

Some women like the odds for trouble decreased to near zero, it's how we like it and would appreciate a yes ma'am, a PBLM is your desire and we're here to help. We chafe at the thought of being tied up with mandated testing and the anxiety that comes with it, especially since it goes on for years and is not what we want. Frequent testing is for those who keep their breast once LCIS is identified. That's everybody. No?

Too many women are matter of factly denied a PBLM and the rationale for forcing otherwise ranges from jaw dropping hutzpah to are you kidding me.

Think your options through, with LCIS you have time to collect your thoughts. Proceed to consider all options then trust your heart. Unfortunately a mastectomy is not always presented as a choice, even when requested. In that case, you can spend a little of your precious time finding a Dr who's values don't preclude yours.

Okay....LCIS is like Pre-cancer.  I had LCIS and my doctor is watching me closely with 6 month mamograms and i decided to go on Tamoxifen just to lesson my chances due to my mom having breast cancer.  Other than that....you do not have cancer.  Your may never get it.  I would however watch out with the oncologists...most just want to remove your breast when that is not needed.  The medical board just stated on TV about 4 weeks ago that they are having to make changes with in the Oncology field because of the unnecessary removal of breasts for things just like LCIS.  I am not removing my breasts because of LCIS.  I had a the area removed and no cancer cells were present.  SO...I and you can live to our golden years.  its your choice if you choose to take a cancer preventative due to being at a high risk.  I did.  everyone's risk of cancer is 12 percent, mine went to 24 percent just from having calcifications and mom.  SO with tamoxifen I am lowering my rish 50 percent so that puts me back at normal range.  I hope this makes you feel better.  You do not have cancer but you are at a higher risk.  I pray this brings you some peace.

hi jean59

how were you diagnosed?  a core biopsy or an excisional? I was just recently diagnosed with lcis as well.  there are alot of ladies on here that have been dealing with lcis for years and i am sure they will chime in with their expertise.  there are several treatment options, as i am sure your doctor discussed with you.  the important thing to know is there time to figure everything out as lcis is not considered an "emergency". so, hang in there and you will find amazing support via this board. best of wishes to you!  

hi jean

what kind of biopsy did you have?  an excisional is a surgery to look at the suspcious area (like a lumpectomy). 

Hi November,

What treatment did you go with?  If a mastectomy...what kind and how was the recovery? I am scheduled all next week with consults for a pbmx with  nipple sparing.  Hoping to make my decision by end of next week and move forward. I'd appreciate any info.

thanks... 

Jean--I was diagnosed with LCIS over 8.5 years ago; my risk is further elevated by family history of bc (mom had ILC). Suspicious microcalcifications led to a stereotactic core biopsy; then LCIS was confirmed by wide excisional lumpectomy. Then generally do that to make sure nothing more serious (DCIS or invasive bc) is in there along with the LCIS. I was given the 3 standard options: close monitoring, tamoxifen, or PBMs. I  still do high risk surveilance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, took tamoxifen for 5 years and now continue with evista for further preventative measures. I tolerated both meds well with minimal SEs, mainly hot flashes. I just had my MRI last week and got another clear scan.  This  works well for me, but it is a very personal choice. feel free to PM me anytime.

Anne

Hi Crescent 5~

I was diagnosed with LCIS a couple weeks ago and have all my consults for pbmx sent up next week.  what kind of surgery did you have?  i am hoping for nipple sparing direct to implant.  also, i see that you were upgraded at final pathology...that is such a fear for me.  do you have any idea how common that is?  i am so confused with this diagnosis.  thanks for any insight. 

hi shabby i had an incisional biopsy.Thank you for the support.