LCIS and Prophylactic Mastectomy

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  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited September 2015

    Girl53, I have LCIS and strong family history, no known invasive at this point. For my own peace of mind, I will be having the PBMX. There are no doubts in my mind that this is the right decision for me. I am not comfortable with the 6 month monitoring option, and the tamoxifen is simply not appealing to me at all. My husband is completely supportive of this plan. Poor thing, he stresses out about my many years of breast issues much more than I do. This is as much for him as it is for me.

    I hope you find the support you need to make the right decision for you. I am very fortunate in that respect.

    Best of luck to you.

  • Girl53
    Girl53 Member Posts: 225
    edited October 2015

    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.

  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited October 2015

    Hi Girl, hope you are hanging in there. I met with the BS this Tuesday. Unfortunately, I left there confused and unsure whether I was making the right decision. She felt that the small amount of LCIS found was not significant enough to warrant PBMX. Of course we all know that LCIS is quite often multi focal and bilateral, so I'm not sure that I would agree with her on that.

    She thought that it might be better for me to get genetic testing first, and then go from there. I am considering it, but I don't know whether I would change my mind if the results were negative. I have been dealing with this since June, with one delay after another. I had hoped to get the initial surgery done before the end of the year as I have met my deductible. Genetic testing would push me back at least another month I would think.

    Ugh, this is very frustrating. I've been on this biopsy train for 30 years, and I know I want to get off. I just hate that little doubt that she put in my mind.

  • caligirl3
    caligirl3 Member Posts: 86
    edited October 2015

    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.

  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited October 2015

    Caligirl3, thanks so much for sharing your experience. Sounds like you went through almost exactly what I am. My instinct from the very beginning has been to do PBMX. In addition to LCIS, my sister had BC at age 43, and I also have those dreaded dense breasts.

    I spend a tremendous amount of time thinking all of this through. My visit with the BS really threw me for a loop, but I am feeling better about it now. My husband and I talked it out this morning, and together decided that I will go ahead with the surgery. On Monday I will call the BS to get started on setting a date.

    It is so helpful to hear other's stories. We are part of this unique little club, and the support we get from one another makes such a difference.

    Best wishes to you, and to everyone else here as well.

    Jean

  • Girl53
    Girl53 Member Posts: 225
    edited October 2015

    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!

  • MsVeryDenseBreasts
    MsVeryDenseBreasts Member Posts: 100
    edited October 2015

    Girl53, I too was emotional and teary a month before my surgery. I had lots of decisions to make and several things weighing heavily on my mind in addition to this surgery. I'm now two weeks out from surgery and have been strangely calm all along. Not once have I felt teary. Just take it day by day and work through your feelings.. Having these strong ladies to talk to (I think) also helps all of us tremendously.

  • mjh1
    mjh1 Member Posts: 445
    edited October 2015

    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!!

  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited October 2015

    Thanks, mjh1, that is just what I needed to hear. My gut instinct all along has been to have PBMX. I am feeling better about it, and now have a surgery date. Your input is much appreciated, and I am happy for you that your decision worked out so well. Best wishes to you.

    Girl53, I get where you are coming from with the ups and downs of this whole process. It does seem to take a long time to work through it all. I will be thinking of you and praying for you.

  • Asante314
    Asante314 Member Posts: 54
    edited November 2015

    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.


  • MsVeryDenseBreasts
    MsVeryDenseBreasts Member Posts: 100
    edited November 2015

    Hi PieDay. I told very very few people. I had my BMX on 10/1. I could count on one hand the number of people I told. That's just me, but I was so emotionally exhausted from the long ordeal and many decisions that I did not feel like having to explain myself to anyone. I had been dealing with LCIS for years so if someone probed I'd just say that the net of it is that I was having surgery to address a high risk condition I had been dealing with for a very long time. No one asked further questions. The truth is, beyond immediate family, no one is really interested in the details unless they too are wrestling with something like this where they could maybe benefit from your experience. Best of luck.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    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

  • leaf
    leaf Member Posts: 8,188
    edited November 2015

    Yes, some people choose to tell everyone, and some people don't.

    Some people who have told everyone have said they were very gratified with the support they received.

    Some people don't. When I was going through the diagnosis process (I work in a hospital pharmacy), whenever I saw that someone was admitted for breast cancer I broke into tears because I didn't know if I would be in their shoes in a little while. (I didn't know the big picture either, how unlikely it was that I would be diagnosed with late stage breast cancer.) When I cry, I look very ugly; my eyes turn red and I totally eyelids totally puff up and I have a runny nose. Its very obvious. So I told my colleagues about it so they would know that they were not causing my distress.

    The night before my excision, I got told by a co-worker that the Xray tech (a man) who had received my mammograms 'Wished me well on my surgery, and recommended that I have bilateral mastectomies because he had a co-worker who had LCIS and that's what she did.' I knew, of course, that bilateral mastectomies were not standard treatment at the time (in 2006). But I felt very hurt that a man who was not my doctor and who didn't know me - essentially a stranger - had recommended I remove my breasts the night before my excision. I'm sure you wouldn't like it if in the middle of work a male stranger came up to you and told you that you needed to have bilateral mastectomies. It didn't help that my wire placement for my excision was one of the most painful experiences I had in my life.

    Months later, I heard from other people in my department about my breast problems that I had not told. So once you tell someone, it can spread like wildfire. Some people handle this very responsibly, and others are very immature.

    I know this is extreme, but years ago, I read here a poster who was diagnosed with invasive breast cancer, and, within a few days, had bilateral mastectomies. Understandably, she was very, very upset. She was single, and a geologist, if I remember correctly, and got health insurance through her employer. Goodness knows how this happened (because this is totally against HIPAA), but her breast surgeon told her employer that she was suicidal. So, after her surgical recovery, her employer did not re-hire her, which left her without health insurance. Her invasive breast cancer required chemo, so I think she didn't get that, or certainly didn't get it in the optimal time frame. Of course she didn't have any money since she was unemployed, so she couldn't bring suit against anyone. So this breach of confidentiality could have potentially affected her life.

    I've heard of other cases where people here have posted that after their breast cancer diagnosis, their employer decided to downsize, so they were left without a job and without health insurance. The employer can claim they weren't discriminating against the employee because they were downsizing, but I bet their health insurance premiums went down.

    So some people tell everyone; some people tell some and not others; some people tell no one. Its good to weigh your alternatives. I certainly didn't imagine the consequences of my telling people at work. I thought I was just thinking of them. Some people don't understand the consequences of telling other people what course of treatment they should take, especially when they don't know your whole situation, and are not current on the treatments.

    But I've said some very hurtful and stupid things to vulnerable people too. I liked the comment that someone made that sometimes I think no matter what you say to a vulnerable person, it will probably be wrong. You can't read the person's mind on what they need to hear.

    There are many posts here on the stupid things that people tell to or look at breast cancer patients, such as in this thread. https://community.breastcancer.org/forum/96/topics... Since probably some immature people will hear about it, its good to be prepared for painful or awkward moments. I liked Ariom's comment 'I call it opening their mouth to change feet!'


  • Asante314
    Asante314 Member Posts: 54
    edited November 2015

    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...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2015

    PieDay---it's your personal business, so you're really not "required" to tell anyone at work, except perhaps your immediate supervisor. (due to time off, medical leave, etc). You could just say "I have to be off for awhile in March for some surgery" and just leave it at that. Only tell more details to those you feel really comfortable with (and tell them to keep it confidential). It's hard to know how even our closest family, friends, and coworkers will respond; hopefully, people will respect your decision and not challenge it.

    anne

  • leaf
    leaf Member Posts: 8,188
    edited November 2015

    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.




  • Asante314
    Asante314 Member Posts: 54
    edited November 2015

    thank you ladies. I thought Iwas crazy not to just tell everyone. Started thinking if I have doubts telling others, perhaps it reflects some doubts of my chosen path. Again I know I will always have some doubt. Very few things in life are absolute.

    The one friend I told 2 weeks ago asked how am I feeling. Well just fine thank you as I haven't had the surgery yet. But perhaps she was just asking how am I, on a different level.

    Other than SIL I think I am done sharing my story for now. As the time gets closer and the schedule is released I may tell a coworker but have to debate the ability of her privacy limits.

    Unfortunately however with no family I wonder am I being selfish in not sharing because so much will fall on the shoulders of DH and DD. Sharing might result in some help from others, but even that well intended help may not be helpful.


    Thank you again.

  • marketingmama
    marketingmama Member Posts: 161
    edited November 2015

    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.


  • Asante314
    Asante314 Member Posts: 54
    edited November 2015

    marketingmama leaf aw msverydense

    Thank you this new normal is exhausting, draining

    I am grateful for the women here who understand. Trying to explain to others is energy that doesn't seem to have any positive at this point

    One of my coworkers will ask a patients parent for details on their diagnoses- how found etc Now I have a new altered understand of how this questioning can be draining

    I am happy your boss has been supportive. I find at times I ignore the risks of complications in my vision of the procedure, but am aware. I am sorry you are dealing with multiple procedures and hope they are going well. But certainly each procedure with its time off is not a vacation, I hope you get one soon

    I am planning my BMX for early spring in hope that the season will afford some comfort to emotions that I am sure will be all over the place/ but it won't be a vacation

    DD is supportive. We were just talking last night about preop appt. she is going to go with me. Certainly not the best mother daughter day, but will try to follow it up with something.... Fortunately/ unfortunately as she can drive she will likely wind up taking me to some appointments post op as I hear variable 2-4 weeks of no driving.

    So over this journey and have only been on the ride for 16 months. I know I am not going to be off the main attraction for about a year, fingers crossed. I never liked rides. I hold the bags at the amusement parks.


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


  • leaf
    leaf Member Posts: 8,188
    edited November 2015

    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.


  • Asante314
    Asante314 Member Posts: 54
    edited November 2015

    DH is supportive as well but likely to have hard time being available. Love the guy but more factual then hand holding. He is talking about hiring a babysitter for me when he is at work. Mixed feelings in that but prob not a bad idea. Unfortunately he works random shifts so may be home but sleeping during day. DD still in high school, senior. Just want to be able to help her get ready for prom. Fingers crossed I may be up to looking at colleges for final selection if need be the following month. But then again not sure my heart v brain battle will let her go away anyway. And now to battle the supermarket the afternoon before thanksgiving- should be easier than this reality.


  • Abutterfly
    Abutterfly Member Posts: 6
    edited November 2015

    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.

  • 614
    614 Member Posts: 851
    edited November 2015

    Good luck to everyone on this thread.  I wish you the best.

    Dear Butterfly:

    Talk to your doctor and ask many questions.  Get all of the information that you can. Go over options with your MO.  Your MO should be able to give you recommendations. Sometimes, going through your history and your fears/anxiety/stress with your MO will enable your MO to understand why you want to have the bmx.  That may be all that is necessary for approval from your doctor.  I did not have a bmx so I do not have insight for you.  Good luck and I wish you the best.

    The only thing that I can tell you is that my insurance company called my reconstruction to my right breast, "elective cosmetic surgery" because my bc was in my left breast.  I needed to have surgery done to my right breast so that I would not be disfigured.  I had extensive surgery to my left breast.  I had a double lumpectomy and approximately 12 cm of tissue was removed from my left breast.  The lumps were not next to each other but both lumps were in my left breast.  It is against the law to disfigure someone with surgery but my insurance company did not want to pay for the reconstruction to my right breast.  Eventually, my insurance company paid the bill, although I still have some outstanding balances that are being fought.  It was difficult to fight bc and my insurance company at the same time.

    I just got a message from my insurance company in my email, that my insurance company is not approving something.  I had a mammogram, a sonogram, a chest x-ray, an MRI, and an ultra sound guided core needle biopsy on Monday.  I have a feeling that my insurance company does not want to pay for all of those tests.  I cannot look to see what they are denying because I have my password at work.  I will check tomorrow.  I do not have the results of my biopsy yet but I am sure that it is benign.  I am not worried about it.  However, I am worried about my insurance company and the bill that I am going to get.

    I would advise you to make sure that the insurance company will pay for the bmx before you make any decisions or plans.  You do not want to have to fight an insurance company and you do not want to have to pay for the surgery out of pocket.

    I wish you the best with your bc journey.  I wish that I could give you some advice but I do not know what to tell  you.  Sorry. 

    I can send hugs to everyone here though.

  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited November 2015

    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.

  • MsVeryDenseBreasts
    MsVeryDenseBreasts Member Posts: 100
    edited November 2015

    Butterfly, I also have a similar situation to yours. If you search on my username you will see the posts I have put up that describe the journey I've been through (so far) and how I ended up going with PBMX. I have not been through the reconstruction "exchange" process yet but so far, so good. I've been dealing with LCIS for nearly 8 years. No lifestyle or family history risk factors whatsoever. Re: insurance......PBMX is one of the (only) 3 recommended standards of care for LCIS. My surgeon said insurance can't refuse....although I'm sure some try. I was in the hospital overnight but it was not considered in patient because it was less than 24 hrs....so no pre-auth required. Evidently this is a common practice. Weird. Talk about dealing in semantics!

    Also, as a reminder to those who are pursuing surgery to restore symmetry to the non-cancerous breast (to match the reconstructed one)....insurance HAS to cover it...it's the law since 1998. I believe breastcancer.org has the full text of the law posted. Patients may need to wave it in front of the insurer's nose from time to time. They sure don't make it easy and to some extent, dealing with insurance is one of the most stressing parts of the whole process. Best of luck to all here.

  • CinderellaNC
    CinderellaNC Member Posts: 36
    edited November 2015

    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?

  • Abutterfly
    Abutterfly Member Posts: 6
    edited December 2015

    Wow, Thank you to everyone that has shared their experience here.

    I am so grateful to have found these links. Thank you for your responses to me.

  • leaf
    leaf Member Posts: 8,188
    edited December 2015

    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.

  • MrsGreenJeans
    MrsGreenJeans Member Posts: 95
    edited December 2015

    I was diagnosed in June of this year with LCIS. Over the years I have had multiple biopsies. All turned out to be fibroadenomas, with the most recent one also containing the LCIS. I had very dense breasts, and also family history with my sis having IDC/DCIS at age 43. There is also a lot of other cancer in my family history, including my grandmother dying of ovarian cancer.

    My initial reaction was to have PBMX. I have always felt strongly about not wanting to continue with the multiple biopsies, and now would have had to switch to more frequent surveillance. I was not comfortable with taking Tamoxifen, so really felt that the MX was the way to go. My gut feeling was that I was going to get breast cancer sooner or later.

    My BS felt that the PBMX was not warranted unless I had genetic testing showing positive results. She agreed to do it anyway, but was not pleased.

    As it turned out, they found DCIS in the contralateral breast. It did not show up on any of the imaging I had, including MRI. BS was very surprised, and said that I had made the right choice after all. Happily they got it all and there was no sign of invasion, so I don't require further treatment.

    Unfortunately, there is no perfect solution to this. I feel lucky that we found my cancer early, before it had a chance to turn invasive. I am much happier having had MX now than I would have been if I'd had to go through chemo or radiation, or the worry of mets.

  • InStitches
    InStitches Member Posts: 80
    edited December 2015

    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

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