New - and Newly diagnosed.

This is a forum for people with LCIS. You're certainly welcome here, though of course you can post there too.  Several years ago, they created this LCIS forum, after many of us LCIS women asked the moderators.  I appreciated it because I think LCIS is unique.  Many other women post in the High risk forum.  They have everything from ALH or ADH to BRCA positive.  I know there are no hard and fast numbers, but **ROUGHLY**, population wise, ALH or ADH has a 15-25% lifetime risk of getting breast cancer, LCIS about a 30-40% lifetime risk of getting breast cancer, and BRCA women have something like a 60-90% lifetime chance of getting breast cancer.

The pool of women with LCIS is quite small, so we don't have good data on which LCIS women may be at higher risk of getting breast cancer.  Many speculate that women with PLCIS are at higher risk than classic LCIS women.

This is a lifetime chance of getting breast cancer, not the risk of dying of breast cancer.  Because LCIS women are followed more closely, the chance of a previously diagnosed woman with LCIS and nothing worse getting advanced breast cancer is less than that of the average woman.  Remember, even for the average woman, in the USA, about 65% of women who get breast cancer die of something ELSE.

I have classic LCIS, and have anxiety issues.  My breast surgeon refused to do any further surgery on me.  This was her first sentence to me, even before she knew about my weak family history (2 maternal aunts and 1 paternal grandmother.)  I was given a 30-40% lifetime chance of getting breast cancer.

I had 2 more breast biopsies 1 year after my LCIS diagnosis, and have had no other breast issues in the 5.5 years since I was diagnosed.  I chose tamoxifen, since I didn't like the watchful waiting option, and the PBM option was not open to me.  I developed other medical issues.  

I see a counselor for my anxiety and stress issues. I had a 2nd opinion at a major institution that I didn't like either. 

Everyone has different circumstances, and everyone has different feelings about prophylactic mastectomies.  Its important that other people give you the ROOM in order to make your own choice.  Its not their body, its your life and body.  I found it offensive to get advice about PBMs unless I specifically asked a person for it.  Its a very private choice.

I would just encourage you to examine all the pros and cons of each option before you decide.  This includes how you feel about each option.

When you are first diagnosed, you don't know how this diagnosis will change your life.  Will you be the worst case scenario?  The majority (probably over half) of LCIS (at least those without a deleterious BRCA mutation, or those without a significant family history) women NEVER go on to get breast cancer in their entire life.   (These numbers may not fit for PLCIS women, because that is such a new diagnosis.)

Welcome to our forum.  Its perfectly reasonable to be totally stressed and afraid.  Almost everything about LCIS is controversial - so that means there is no wrong answer as to treatment choice. 

Dear Tuff,

So sorry you find yourself in this spot.  I had nipple and skin sparing bilateral mastecomy surgery in January.  That is my first recommendation, if you do decide to go the surgical route, is to inquire as to whether you are a candidate for this (there is an entire thread on this site regarding this type of surgery).  At the time of mastectomy surgery I had tissue expanders put in place and the expanders partially filled.  About 2 months later I had them the rest of the way filled, an office procedure that took just a few minutes.  In June I had exchange surgery, swapping the tissue expanders for silicone implants. 

I will tell you honestly that I have been surprised by two things:  1. I was surprised at how very hard it was for me in the first few months.  I had assumed that since I was youngish (42), fit, in good health, etc. that it would be easier than it was.  I did have pain in the first weeks and discomfort in the first few months.  Additionally, emotionally it was harder than I thought it would be- both at losing my original breasts and at adjusting to a new me.  2. I'm so surprised at how great I feel now, only three months from exchange surgery and only 8 months after mastectomy surgery.  The constant stress is gone and I have no pain at all and my only discomfort is during some exercise and I still cannot sleep comfortably on my stomach.  I think I look great too.

Others have had a longer process (more fills, complications, etc.) and still others have been candidates for a one-step surgical process.  There are still doctor appointments for me- still seeing the plastic surgeon every three months for now and the breast surgeon every year- but for me, it has been worth it.

Please feel free to ask me anything and best of luck to you.

Kelly 

Tuff, you'll find the Nipple Skin Sparing Mastectomy thread under the Surgery section.  I don't work but stay home with my kids who are now 8, 6, 4 and 2 so it's a pretty active lifestyle.  I had someone home with me for the first two weeks, mainly to watch the kids and take care of the household stuff.  By week three I was home alone with the kids but still didn't do things like lug laundry up the stairs and do the grocery shopping until about 5 weeks out.  After the exchange surgery my husband stayed home for 4 days and after that I was back to my regular duties.  Rest easy tonight!

Kelly