LCIS and Prophylactic Mastectomy

MrsGreen: Have been on multiple threads and lost track, LOL. Is your surgery scheduled? I met with a plastic surgeon yesterday who explained tissue expander option, and I am considering it. My husband is supportive whatever I decide. Glad it's Friday...I am stressed out! Let's stay in touch. Hugs to you.

Hello Girl53 and Mrs.GreenJeans,

I'm sorry you are having to deal with this. I haven't posted on these forums in a while but felt I wanted to reach out. I remember feeling frustrated/scared/confused when I was first diagnosed with LCIS in early 2014. Many wonderful ladies reached out to me at the time and really helped me. I have posted several times in these forums about my experience. When I was first diagnosed I kept being told the same thing, PBM is too aggressive. Then I was upgraded to having pleomorphic LCIS (if you think they don't know what to do with LCIS, they sure don't know what to do with a PLCIS dx). I even got a second opinion at an NCI designated cancer center and left there even more confused. Through out the whole time though, deep in my gut I knew I wanted a PBM. Well I struggled with the decision for about 8 months. I even had a clear mammogram 2 months prior to my surgery, but by then I was 100% convinced I wanted to go through with the surgery. I had my surgery in December of 2014. Well after my surgery pathology showed I had a small invasive cancer. I'm not posting my experience to scare you. There are many women with LCIS who don't ever go on to develop invasive cancer and I suspect there are many women walking around with LCIS and don't even know it. I'm just saying follow your instinct, do what you feel is right for YOU. What I did at the time was make a pro/con list of both options then asked myself what can I live with? PBM is not an easy process either, but I don't regret my decision one bit. If you have any questions I would be happy to answer if I can.

Caligirl and Mrs.Green: How are you? Haven't been on site for several days and just saw above. It is so helpful to hear others' perspectives, and to know I'm not alone in making a decision for surgery. I, too, have been struggling with this for months.

Among doctors I've consulted with (breast surgeons and oncologists, my internist, and one or two others), a couple thought lumpectomy/radiation/endocrine therapy/frequent monitoring were the way to go, and others felt that double mastectomy was wisest decision for LCIS woman with ILC, dense tissue, and a scary family history. Have gone back and forth in my mind and with my husband, but all along I felt I wanted to reduce my risk as much as possible. Surgery process won't be easy, but for me it will be preferable to the ongoing high stress of constant uncertainty and screening. Fortunately, nearly everyone I've talked to in person about the surgery says they and other women they know have come through it just fine.

Is it normal, even after having made a decision and scheduled surgery, to just feel sad and afraid? Was okay yesterday but today am struggling with the whole thing. On one hand, it's all happened so fast, and "out of the blue," and on the other, it feels like forever! I am so glad to be here in good company. Let's do this together!

just wanted to reach out and say follow your.gut. all my tests pre surgery (and there were many) only showed dcis in one breast. My gut.told me to do a bilateral mastectomy even though my BS was.not in agreement. My final path showed dcis and lcis in both breasts. while it certainly has not been an easy road I do not regret my decision one bit and am thrilled with my perky "girls."

I think the worst was the emotional roller coaster that never.seems to end as your going through each phase which no one tells u about. Just know this is all normal n will pass.

U will all get thru this just as many of our sisters b4 us. God bless!!

HI, I am new here to the boards.

Last year (2014) after a pesky papilloma made its presence known (nipple discharge) and resulted in further evaluation, I was dx with LCIS (May 2015). Treated w a lumpectomy and removal of the papilloma. My BS reviewed the usual three options. The MO and BS are agreement that my family history of stroke renders tamoxifen as too risky. Thus I am left w high risk screening or BMx. Repeat MRI continues to have such wide spread enhancement that the BS said she is not comfortable w observation alone and suggested proceeding w BMx. After getting two further identical reccomendations from other BS in my region, I have decided to proceed w BMx w reconstruction. Having met additionally with a few plastic surgeons, I have settled on the best combination of BS/PS for me. Now while this all sounds settled and certain, of course I still have some reservations and apprehensions. One BS said if you are 80-90% sure, then you are there... I understand this.

My surgery is in March. My BS is comfortable with that time frame, stating only if I wait longer then I will need my 6 month mammogram/ US.

I wonder how others who have made this decision have decided who to tell and when. Due to scheduling concerns I have already notified my employers and have received wonderful support. However I have not discussed this with any co-workers. How do you deal with others opinions, even if perhaps well intentioned?

I am alone in feeling lost in an ill-defined zone of "not breast cancer" and breast cancer? BRCA gene not tested, and have met w counselor. Decision w BS and MO and genetics that result wouldn't change their current recommendation, only open Pandora's box for children. However, think it may be easier to tell workers I have BRCA as I am aware they have all heard of BRCA and PBMx. But this would lead to questions about why I was checked for the gene.... so wold wind up venturing down a rabbit hole I didn't intend...

Apologies for some randomness in thoughts above, but that is where I am.

Hi PieDay-

We want to welcome you to our community here at BCO. We're sorry for the circumstances that have brought you here, but you've come to the right place for support. You mention feeling alone and lost, and those are two things you will never be here! Who you decide to tell and when is a very personal decision, and you'll get a variety of responses from the community. Whatever your reasoning for telling or not telling people, it's your decision, and you should be supported for it!

The Mods

Thank you all for your replies.

I am a medical practitioner, where breast cancer is not a prime issue.

I dread a specific co-practitioner's response. Years of working with her have given me premonitions of her interrogation and disagreement with my choice. Fortunately she is not a partner, only an employed practitioner so I have no requirement to inform her of anything. I work with a generally wonderful group of women who would likely be very supportive, but fear that look of pity, comments of how are you really feeling... Having the BMx 3 months aways, I am not going to tell anyone further in my office, however once the schedule for March arrives next month in everyone's office mailbox, there will be questions. Scheduling staff will be looking for when my patients can see me next, the three practitioner's who work with me will ask why their schedules are changed, realize I am off the rotations and then ask.

I am going to ask the partner in charge of scheduling to let me know before he distributes the schedule to the other practitioners so I can be ready to respond. I trust the informed partners to only state personal leave or medical leave without further disclosure...

Has any one simply responded to why are you taking leave with , it is personal? I foresee the barrage of twenty questions: are you ok, are you going to be ok, Its not cancer or anything serous, right....

If I say anything, explaining why I am not getting it done tomorrow seems to be the hardest to explain with out taking time and energy to educate, and give details. I'll admit some guilt in not sharing as well, as spending so much time with my staff we all know a lot of each other's trials and tribulations. Will they wonder why I listen to them, but don't share equally?

thank you again for just being a place to vent

and the link of things people will say... can't believe the thread is 53 pages long, but only under a year old. wow. reading that list made me realize things I may have said in the past and how differently it feels from this side of the aisle. But again, LCIS is walking down the center of the aisle as well.

one partner did ask if he can see them before they get chopped off. my hubby that this was a "ballsy" response, but from that partner it was the perfect response. It is exactly the response from him a friend of 20 years that I needed, and expected. My teen daughter was laughing in tears.

thank you

BTW pie day 3.14, day of scheduled surgery...

I totally agree with anne, its your personal business. After my incident at work (I wrote an incident report), many other department members did not say why they went out on medical leave when they went out on medical leave. But one colleague who had prostate cancer said that he's telling everyone in the department about his condition 'because they deserve to know that.' Of course, I totally respect everyone's different choice in this matter.

I read some of the posts by women who wear sleeves for lymphedema here, and, inspired, tried to use humor when I dealt with a nurse, not completely successfully. (To questions about her sleeve, one wrote that she replies 'You should have seen the other guy.')

I have several unusual conditions, one of which causes spots on my face. Its happened over the last 7 years or so. Its not contagious. Its not pretty, and I'm definitely not beautiful for my age, but its not like I have a 3rd eye in the middle of my forehead, or look like Quasimodo.

She was picking up her prescription. (Its filled by another pharmacy, so for privacy reasons, I try hard to avoid looking at the name of the medication I am dispensing.) The conversation went thusly:

Her: What happened to your face?

Me: Gee, I don't know, I guess I must have been born on Mars.

Her: No, really, what happened to your face?

Me: Here's your prescription.

(I'm probably overly sensitive, but to me it felt like she was asking why I was so ugly.)

I have a procedure I'll have at the beginning of next year. Some of my closest friends know, but they are quite trustworthy. I asked that the 'untrustworthy' people to not be scheduled that morning. To some of my other colleagues who I trust less, I am just saying I'm having a medical procedure. I've tried to relate the story of the ?geologist above to get them to understand that revealing medical information can affect the health insurance, and thus the treatment, of potentially life threatening conditions.

You are certainly not alone. Some people are much more grown up than other people. There are many, many threads about stupid comments that are longer, such as this one. https://community.breastcancer.org/forum/102/topics/744439?page=307#post_4507942 It is heartbreaking to hear what some women were asked or told.

Pie,

I struggled with who/how to tell at work also. Initially I just said I was going on medical leave and people were very respectful of my privacy. At a certain point I decided to share more and simply said, "I am having (had) a mastectomy." That tended to shut people up. Very few people have heard of LCIS so I simply didn't go there. Exception was very close friends (3 or 4) and my immediate family. I actually opened up with those I'm closest with because I wanted their input.

Exception at work was with my immediate boss. We are a close team and I wanted to be open with him. Also I discovered that at a member of my team has been battling breast cancer for 13 years and is stage 4. I had no idea. She was and has been very helpful. She's so knowledgeable and understands the issues---though frankly hers are so much more challenging.

The hardest part at work frankly is that I've needed a few surgeries for reconstruction and I'm not done yet. I think my boss thought it would be simpler. He's trying very hard to be patient (I can tell!) but I also sense a tad bit of irritation at times (as if he's thinking "you need to go out again"). Haven't taken any real vacation time for that reason. Sometimes it's hard to get away from the guilt of being away from work (and others needing to cover for you) or from needing extra help at home. I am very lucky in that my DH has been an incredible source of support. Takes me to all my doc and PT appointments. My children are older (16 and 21). They know everything but also are comforted by the fact that I'm going to be fine in the long fun.

I wish you the best in adjusting to this "new normal." It's definitely a journey.

Happy Thanksgiving to all. Certainly have a lot to be grateful for. Ok and some to be not so grateful for....

I like your sense of humor! That goes a long way.

Once you tell someone, it cannot be undone. You can be sure your co-workers will remember. You can always change your mind at any point and tell who you wish.

I am so glad that DD is supportive. It helps so much to not go through a journey alone.

I had my LCIS lump removed September 25, 2015. Then genetic testing was done and came back negative. I am due for my next MRI in January. The BS was very confident that BMX was not necessary. I am still not sure I agree with that. Having extremely dense breast, atypical hyperplasia and LCIS certainly raises my risk significantly enough for me that I am not sure I am ready to ride another medical roller coaster. As is, I have lengthy medical history which already involves Pre Cancer. I am extremely allergic to common everyday personal care items as well as environmental stuff. Since my surgery back in September my right nipple has been painfully sensitive. Not sure I am ready for PBMX, and it's not looking like any of my doctors will recommend it (so that insurance will cover it). Tamoxifin is not an option for me with my medical history. Would love some input, ideas, suggestions and support.

butterfly, I am in a very similar situation as you. Dense breasts, LCIS, multiple biopsies, but in addition I have family history with a sister having breast cancer at age 43. I am awaiting the results of genetic testing (previously tested negative for BRCA 1 & 2). The results are somewhat irrelevant to the course of action I have decided to take.

My BS does not feel that I am at high enough risk for getting BC, but said she would do the PBMX if I chose it. I do, and my surgery is scheduled for this coming Wednesday, 12/2.

I know that my insurance company will cover it because of the LCIS. I would think that yours probably would too. I did not need a recommendation from the doctor, although it did require prior authorization due to the overnight stay. If she had refused to do the surgery I would have found another that would. That's how sure I am that this is the right thing for me.

I hope you come to a decision that you are comfortable with, and wish you the best.

I understand your anxiety about dense breast, LCIS, atypical hyperplasia. I was diagnosed in May with ILC triple negative. It was caught early which is lucky with sneaky ILC. I had a lumpectomy in June and subsequently a course of four treatments of Chemo TC over twelve weeks. I was given the choice of radiation or a mastectomy. I knew I would never really have peace of mind just doing the radiation, worrying about the long term SE's of that and keeping my breast. I would always worry about another breast cancer popping up in that breast or my left breast. I decided to have PBMX on November10th and have never regretted my decision. The path report was clear in the left breast but even after chemo some foci of LCIS and some atypical hyperplasia was found in my right breast. My surgeon said that probably made me feel even better about choosing the PBMX over radiation. It does. I do kind of wonder if it is unusual or of some concern to have found the LCIS and atypical hyperplasia in that breast after chemo. I will ask my oncologist about that when I have my follow up appt. with her on Thursday. Just curious has something like this happened to anyone else out there after having aBMX after chemo?

Butterflywarrior: I know this condition can cause a lot of anxiety. I support whatever decision you choose to handle your situation (except maybe to ignore it altogether and never see a doctor again, which I would hope no one with LCIS would do.)

I have classic LCIS, ALH, and 'moderately dense' breasts.

I just wanted to make a comment about 'dense breast' as a risk factor. This paper looked at 'average women'. The modified Gail model automatically excludes anyone with a personal history of invasive breast cancer, DCIS, or LCIS, so you can't use it. That being said, in my oft cited paper http://jnci.oxfordjournals.org/content/98/23/1673...., they compared the modified Gail model with the 'Italian model', which is the modified Gail model but includes more risk factors (including breast density.) In this paper, they said for individuals, the accuracy of both the modified Gail model and the Italian model were 'essentially the same'. If the model predicts 'essentially the same', then to me that suggest that in this study breast density did not significantly increase the breast cancer risk.

I realize that this model has only been validated for women who have NOT had breast cancer or DCIS or LCIS. We don't have any solid information on the effect of breast density on LCIS. But in this study, breast density did NOT seem to significantly improve the prediction of breast cancer for the 'average woman' (in this case in Florence, Italy.)

Of course, we don't have the hard data, and I would support your treatment decision whether it be PBMs or surveillance or surveillance with antihormonals, but breast density may be a smaller risk factor than you think for individuals, such as yourself.

caligirl3, I am very curious as to whether you had an MRI at any time prior to your surgery and did it show anything? My last MRI in July was clean but there is a nodule that needs to be checked on next month as well as some skin changes in the right breast. My doctors keep telling me not to worry because of the clean MRI. I am just not convinced the MRI picks up all lobular issues