New Here and to LCIS

Welcome, Maryellen!  I'm sorry you are faced with these decisions, but this is the only place I know where you can 'meet' other people with LCIS.

I'm so glad that your breast surgeon seems open to whatever you choose. (My breast surgeon's first words to me, upon entering the room, only knowing I had LCIS on a core biopsy, were 'If you want bilateral mastectomies, I'm going to fall down in my chair.'  She repeatedly told me she didn't want to do any further surgery on me after my excision.)  

I'm not saying I would have chosen BPMs, but I would have liked to have all the options open to me.

**If** you do NOT choose BPMs, many (not all) docs suggest a breast excision, because roughly 10-30% of women who are diagnosed with LCIS on core biopsy have 'something worse' - i.e. DCIS or invasive - when they have an excision.  They excise around the area, because LCIS is often found not *at*, but *adjacent to * the lesion that prompted the core biopsy.  (I had maybe 2 tablespoonfulls taken out at my excision.)  

You have plenty of time to examine all of your options and make your decision.  (It took me 3 months to get my initial appointment with an oncologist, so its possible it may take you some time to get all your consults.)

I would encourage you to get all the consults you need, and all the 2nd, 3rd,etc additional opinions you need to make your decision.  

I am glad you seem to have plenty of family support.  Its your body, and everyone should respect that you need to make this decision about your body, no matter what your choice.

So, welcome!  I'm sure there will be others along shortly to provide lots of support no matter what you choose.

maryellen-------As Leaf said, there is no rush to make decisions----since LCIS is non-invasive, you can take whatever time you want or need to research, get 2nd opinions (if you choose to) or just let it all sink in.  I was diagnosed with LCIS 8 years ago and my risk is further elevated by my mom's ILC, but even with that combination of factors, I still haven't had PBMs. It's an extremely personal decision, one which you have to feel really comfortable with, since it is irreversible. I took tamoxifen for the full 5 years and now still take preventative meds (evista); tolerated both meds well with minimal SEs. I alternate mammos and MRIs every 6 months and have breast exams on the opposite 6 months. Not a choice for everyone, but works well for me. It's good you are seeing both an oncologist and a PS, then you can get all the pros and cons to both the surgical and medical approaches. 

Anne 

I second everyone's suggestion to take your time, do your homework, and reflect on the best avenue for you. In my case, I had multiple findings of LCIS in both breasts, and with a seriously bodacious family history (mom, her two sisters, their mother and their material grandmother), well, I just needed to say goodbye to this risk, even though I was found to be BRCA negative. So I did have prophylactic bilateral mastectomy, with d.i.e.p. reconstruction at the same time. Pathology found zero malignancies in the sectioned breast tissue, so to me it's a huge victory that I took care of it before it happened.

 I took several months to research and decide on my reconstruction choice, and during that time --11 weeks-- I worked out like crazy with a personal trainer, aiming at strength, stamina, and a sturdy heart. That paid off in droves in terms of health for the long surgery and especially recovery (I'm 8 weeks out and feel GREAT), which brought minimal pain and surprised everyone, especially me. I am 57 and was a total couch potato when I started, but found fear was a powerful motivator to keep me on track. Now that surgery is over, I'm itchin' to get my surgeon's green light to get back into my fitness routine.  Bottom line:  Do your homework, and unless you're already a triathlete or something, include a serious commitment to fitness in that homework. Then no matter your decision --mastectomy or not -- you'll be a healthier person and kick diagnosis-related stress's butt.  Good luck in your decision process.  --Carol

I agree with Carolwith regard to exercise.  I started exercising after my May lumpectomy which found ADH in addition to LCIS anD ALH found on stereotactic biopsy.  At that point I decided that I needed to do SOMETHING and gettingup every morning and walking and eating healthier was my solution.  Four and half weeks ago I had a hysterectomy and had my ovaries and tubes removed as well and being in better physical condition as well as dropping some weight made my recovery from surgery much easier.

Welcome Maryellen.  You've gotten great advice already here.  I'll only add that I did have this surgery for pleomorphic LCIS earlier this year and am very happy to answer any questions you may have.  Like you, I had a pretty strong feeling early on that I'd go this route but made sure that I was on the right track by meeting with a few plastic surgeons, breast surgeons and oncologists.  I also met with a medical social worker who helped me sort out my feelings which I highly recommend.  All the best,  Kelly

Welcome! I had a pbmx for lcis in May. I knew immediately it was what I wanted, and have not regretted it at all. I have an anxiety disorder and didnt want the constant worrying and waiting for the sword to fall. My breast surgeons (i did go for a second opinion) both told me all the options and supported my decision. My mother did have invasive breast cancer in her 70s and my maternal aunt died of ovarian cancer in her 60s, so there were some other risk factors involved. My surgery went well and i recovered quickly. I did not have any reconstruction. My follow up is to see my gyn. annually, and my breast surgeon annually. Take your time, and the right decision will come to you. We are here for you! Nan

Nan, one of the women here ("Erica"/Barbara) created a website to help women with the question of no reconstruction. It has a section of stories by women who have either chosen not to reconstruct or had their recon fail and find themselves having to deal with no recon anyway. It has pictures of what an unreconstructed chest looks like and how clothes look over it. And it has reviews of breast prostheses and mastectomy bras, camis, lingerie, swimwear, etc. Really comprehensive, and it's been a big help to me in finding products that work for me (bilat mastectomies, no recon, chest and arm lymphedema). It's here:
http://www.BreastFree.org

Hoping you'll find a path that feels just right for you!
Binney

Binney, thanks. I love that website! When I'm done losing weight i will head right there if i decide to get foobs. Nan

Maryellen, you r so welcome. Stick around! I wanna hear when the grandbaby is born! Nan