LCIS and Prophylactic Mastectomy

LeeAnn, best of luck to you! And if you do end up having the sentinel node biopsy, there are some steps you can take to reduce your lymphedema risk.  I compiled some suggestions based on research and information from lymphedema experts, and if you (or anyone else) would like to have a copy, PM me and we can arrange to email it to you.  I did get lymphedema--fortunately it's a mild case--likely because my SNB ended up requiring 5 nodes to be taken, plus one node went with the breast tissue on the SNB side. That's not so unusual (I learned after the fact), so thinking in advance about lymphedema risks and precautions is a very good idea.  I wrote the document for friends with BC diagnoses, but the precautions are appropriate for prophy surgery, too.  The risk with SNB is low, but it's there nonetheless, as I found out first hand.

Carol

I made my final decision to have my surgery back in US on December 10.   Not going to be easy on my family in the short term but I do believe it's the right one long term.   I am going to ask about the clips.  Thank you for sharing that with me, Horsemom.  If it cannot be done, then I will have the snb and hope the odds are with me to avoid lymphadema.   I am so petrified of getting it.  I watched two of my sisters suffer miserably from it.  

Hoping you're feeling good and prayers that they don't need to get that sentinel node.

Thank you so much for posting. You are such an encouragement to me! I love your attitude and hope I can learn from you to see the positive side of this. It is a scary place to be in and having support from all of you ladies is so very helpful.

Hello ladies and thank you to all who post here. I am new to this site and just joined yesterday. I have very dense breasts with all kinds of problems such as LDIS, atopic hyperplasia , cysts etc. on and on. In addition to that my family history is poor. My mother died of breast cancer at age 45, her mother also had breast cancer but did not die from that. My sister had breast cancer at age 50 and also a paternal great aunt died of this awful disease. I feel frazzled after multiple biopsies, MRIS, ultrasounds, and bad pathology reports. I am 50 years old and pre menopausal. These past 4 months of testing have been awful as you all know. I am trying to come to terms with doing a bilateral mastectomy. It may be the best decision since my breasts are so dense and fibrocystic. I just want to have some peace with this. I am in a constant state of fear and stress over the upcoming surgery either way. I have to chose either the lumpectomy with follow up or the mastectomy. I would dearly love some more great advice from women like you who have made this decision and feel happy about it. I do fear the surgery but my biggest fear is that I may fall into feeling depressed afterwards. I am planning to do some reconstruction but I don't believe it would be immediate. I think they said I would have to wait. Any words of wisdom would be greatly appreciated!

Hello,

I am asking a question for my mother, I hope this is alright. She is not computer savvy. My mother had a prophylactic bilateral mastectomy due to LCIS in her left breast, she chose the surgery due to family history, I had IDC in 2011 and my aunt, her sister, also had IDC at the same time my mom was diagnosed with LCIS. Her surgery was just a few weeks ago.

She's doing really well, healing fine and in good spirits. But, she tells me that her mastectomy scars have what she describes as flaps. She asked her surgeon about them at her follow up and he said that he left them there because it wasn't breast tissue but fatty tissue. She assumed that she would have flat scars, not flaps, or dog ears and she feels very self conscious about this. I haven't seen this myself, I had a lumpectomy/radiation so I have no experience with mastectomy to guide her.

She opted not to have reconstruction. Is she just stuck with these flaps, is this normal for a mastectomy to be left with this fatty tissue just hanging there or should we be looking to have some sort of, I don't know, surgery to remove that tissue so at least the surgical area is flatter. She had gastric bypass some years ago so she does have some sagging skin issues, but I would hope the surgeon wouldn't be so crass as to just add to her problems.

She lives 3 hours away from me in a small town, so I don't get to see her as often, but I am more than willing to advocate for her and get her to see someone in the bigger city where I live.

Thanks so much!

Jan

Squeak, your surely should not feel responsible; that 'honor' goes to the breast surgeon who didn't talk with your mom about the surgical options to prevent dog ears. I can't comment on whether there's any lingering risk, i.e. is this really just fat, or is it indeed breast tissue. But I do believe that the women's health care act that mandates reconstruction coverage for insurers that cover mastectomy applies here, even if your mom's recon choice is simply to have the dog ears removed. Seems like a consult with a plastic surgeon might be helpful.

Hi Guys! I don't know if anyone is still here but it's worth a try. I was diagnosed with LCIS in 2011 and have been on Tamxifen since Feb 2012. Mammos/MRI every 6 months with only one surgery in 2012 to biopsy and it was normal. This July, my mammo showed microcalc cluster and biopsy showed LCIS again, in the same spot. I'm likely having a PBM. Sugery consult tomorrow. I hope it remains only LCIS after this and I can put most of the worry behind me. I'm glad to read that some of you have had good experiences with PBM. I have 3 young daughters and need to be around to watch them grow up. I also just graduated nursing school AND passed my boards so need to move on with my life and my new career!

Hi NewRN, welcome to Breastcancer.org. We are sorry that you are here, but glad you found our community.

Let us know how your appointment goes tomorrow. Here is an article on Prophylactic Mastectomy from our main site that may help you understand the factors to consider when deciding on a risk-reduction strategy.

Hope this helps!

The Mods

Ladies - I haven't been on this forum or on this site very much lately, but I can tell you a little of my experience. I also had very dense breasts and LCIS dx'd after my second bx in so many years. My first oncologist said wait and see, we will keep bx'ing. My second oncologist said are you crazy, why wait and see? He totally supported my risk reduction decision and I have NEVER been sorry. I am past nursing children. My husband and family were supportive and I finally decided to go with it. My path's from the BMX indicated very extensive hyperplasia throughout one breast and the startings of the same thing in the second breast. All this was in 2008. Here it is so many years later and I have had absolutely no issues. I am so relieved to be beyond all the bx'ing, waiting and worrying. I am not sure if this helps but thought I would put in my two cents. I wish you the best with your decisions! - Jean

Ms Dense, you are facing a really tough decision. One I also went through this year. I had PBMX for LCIS that was diagnosed on one side. It was found on both sides after my surgery but I was fortunately free of any other issues. I had tissue expanders placed at the time of surgery and my exchange surgery is scheduled for August 24 (about 3 months after the PBMX). I tried to move things along quickly in the fill process and was able to get to about 500cc with 3 fills (I came out of surgery already filled to about 300 so that helped a lot). Started the fill process one month after surgery and went about 3 weeks between fills. The process for me (and this is very personal) has not been comfortable. My first and last fill were the worst---especially the last one since I went up to 100cc (my decision). I worked throughout the fill process but always did them on a Friday so I had the weekend to recover (and I needed pain meds and muscle relaxers). Most of the time I found I needed a sick day on both the Friday of my fill and the following Monday. Again, that's me and some women sail through their fills. I am very excited for my exchange as I know my comfort level will significantly increase and I'll finally be able to side sleep! That being said, I am very happy I made the decision I did and my BS agreed fully after seeing how much LCIS i had. I have peace of mind and the reconstruction process is, relatively speaking, a blip of time. I expect to be fully back to normal by mid to late September and I think that 4-month period is fairly common for most women who have this type of reconstruction (assuming no complications).

All the best with your decision.

Panthrah: Could you tell us what your full high-risk checklist is? For example, are you BRCA-positive, and/or have a significant family history? Dense tissue? Microcalcs? Previous benign breast problems? Maybe you already posted this and I missed it...I am LCIS newly diagnosed and pretty nervous. Awaiting meeting with BS Aug. 24 for consultation/to schedule excisional biopsy. Thanks a lot.

Panthrah: How are you? Missed this when you posted it. Thanks for very good info. Awaiting meeting with BS Monday to discuss pathology results of excisional biopsy for LCIS. Am so nervous and upset with this while trying to get used to LCIS dx.

Am eager to get on with comprehensive risk assessment they do at my breast care center; I want to know my risk percentage. I don't have children, but I have a twin sister and a niece. And a significant family history.

I am wondering what many LCIS women consider a "high" risk percentage? Do lots of women with a lifetime risk of 40 percent and over consider a PBM?

Just want to chime in here on the risk level. As you are probably learning, there are many paths with these issues and still a lot they don't know about LCIS.

I have LCIS and ALH. I was diagnosed last year at age 40. I have just one cousin on my mother's side who has had BC, no other family history. My risk factors include period starting at age 12, dense breasts, no children,being young, etc.

My BS calculated my lifetime risk for invasive BC at 67%. But right now it's at about 12%, and increases a little each year.

Even with an estimate risk of 67%, my BS felt PBM would be too extreme and unnecessary for me at this point. She strongly pushed me to the 6 month screenings and tamoxifen - both of which I'm doing. I just had my mammo last week and thankfully all is clear for now.

I've learned that while this is scary, there is no one path for everyone. So many factors play in and it's best to gather all the info you can and decide what's best for you. Everyone is different.

Hang in there!

Posting here today in addition to newly diagnosed area. Am feeling very unsettled after BC dx yesterday. My BS said that PBM wouldn't be an unreasonable option for me, vs. radiation and Tamoxifen. Spoke today with genetics counselor and will have appointment with her soon. I feel my risk is high even if I'm BRCA-negative. I think the genetics counselor detected this!

Would an ILC dx -- with "background" LCIS and a strong family history -- be enough for some here to do the PBM? I feel as though I've read a lot about the drastic nature of PBM, and I know it would have challenges. But with my medical profile and personal history of caring for loved ones with cancer, I just don't want to face the risk of a recurrence or a contralateral occurrence.

Have heard people say, but you could get hit by a bus in three years. Or you could turn up with some other kind of cancer. And you will have gone through the PBM "for nothing." Nothing? What about the peace of mind it would likely bring me between now and my demise of something other than BC?

This feels stressful. I guess I want someone to tell me it's okay to go with my gut, and eliminate the risk.

Panthrah: Thank you!! I needed someone to say that. Have been in a real state since Monday dx, trying to focus on things and having trouble. Last night, I decided that, before choosing the PBM, I'm going to get opinions from two breast surgeons other than mine...show them my films and path reports, tell them about my family and personal history, and try to understand LCIS risk conferred in contralateral breast. My bias favors conservative management, but I want to make sure I'm making a conscious, informed choice, and not just reacting out of stark fear.

I'm going to tell my boss today a little about my dx, and my sisters in law about dx and possible treatment options. I want that loving support and connection but also need to be prepared to receive opinions and unsolicited advice!

How did you find out you had LCIS in both breasts? Was left side discovered incidentally, and then something else showed up on other side that prompted a biopsy there? You have already been through a lot.