LCIS...what was your choice of treatment?
Hi, Just diagnosed so new to this.
I would love to hear what others have decided to do for their LCIS.... especially those of you who went with a Masectomy (please tell me what kind of masectomy/reconstruction) and if you are happy with the choice.
Trying to gather as much info so I could move forward.
God Bless...
Comments
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Classic LCIS here - tamoxifen (just finished 5 years) + twice a year clinical exams + yearly mammogram. I have had no breast issues since my 2 biopsies 1 year after my excision. (My excision was in Jan 2006.) My breast surgeon, from the beginning, said 'I don't want to do anymore surgery on you.' (i.e. she was adamant about not doing BPMs, so I didn't have that choice.) I'm not exactly thrilled that she did not give me that option, just from a philosophical point, even if the option was 'to eat green cheese from the moon'. If I do have more breast issues, I hope a) my breast surgeon will have retired and b) will be strongly considering BPMs, though I have several complicating factors, such as carpal tunnel surgery, thus may be at higher risk for lymphedema.
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Hi Shabby,
It was discovered, after multiple biopsies, that my breasts were full of LCIS and ALH. My choice of treatment was either multiple lumpectomies of both breasts (between 5-7 of right, 1-2 of left), followed by 5 years of tamoxifen, which I really didn't want to take, nor did I want to go for testing every 6 months just waiting for the shoe to drop, or a bilateral mastectomy. I opted for the mastectomy with no recon.
My surgery was 12/29/11 and now, almost 3 months out, I'm feeling great. I love going braless (althou I wear scarves) but I think in the summer months where I can't camo my chest area, I may use some poofy foobs.
I am extremely happy with my choices...I don't feel like I have to look over my shoulder waiting for BC to catch up to me, and I'm done with any surgery. My recovery from the BM was harder and took longer than I expected, which makes me happy that I didn't do recon which (in my mind) would have made recovery that much harder/longer.
Best of luck to you. Feel free to PM anytime.
hugs,
Cats
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shabby----I was diagnosed with LCIS over 8.5 years ago (had suspicious microcalcifications on mammo; LCIS found on stereotactic core biopsy and confirmed during lumpectomy) and my overall risk is further elevated by family history of bc (mom had ILC). I do high risk surviellance--alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months; I also do preventative meds---I took tamoxifen for 5 years and now I have been taking evista for nearly 3 years. I think it's important that you hear from women that have chosen this path, as well as from those that have chosen PBMs. There are pros and cons of each choice. It is definitely a very personal choice and very individual to each person's situation. There is no right or wrong choice, just be sure to make your decisions out of knowledge and not fear.
Anne
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Thanks for posting this. I was diagnosed just last week and am meeting with the breast surgeon this Wednesday. I'm very confused about what it is that I actually have. Is it cancer, or not cancer? Do I need treatment or monitoring? etc. etc. etc. It's nice to have a way to talk to other women going through the same thing. I was diagnosed through a stereotactic biopsy, and I've been told to expect the surgeon will want to do an excisional biopsy to confirm. I want to make sure to know what questions to ask wihen I see the Dr. on Wednesday.
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I was diagnosed with LCIS and ALH with a stereotactiv biopsy and then had a lumpectomy which also found ADH. I was offered Tamoxifen but have chosen not to take it. I am continuing every 6 month mammos and ultrasounds and clinical exams. Sometimes it does seem like I am waiting for the other shoe to drop. I go back in June and we'll see what happens then.
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Lorio------technically and pathologically, LCIS is a stage 0, in-situ, non-invasive bc. But since it is non-invasive, it is not considered a "true" cancer to some in the medical community (there is still a great deal of controversy about it even among physicians); rather a marker for high risk of invasive bc in the future. There are some studies that say it is an actual precursor to bc; but most studies feel the LCIS itself will not turn into invasive bc, but invasive bc is sometimes found along with the LCIS during biopsies or excisions (lumpectomies or mastectomies). It's very difficult to know what to do when even the experts can't agree! (my old oncologist stated emphatically it was bc, just non-invasive; my new one in the same office feels it is more of a high risk marker). With a diagnosis of LCIS you definitely need closer monitoring; "treatment" is not actually needed (no chemo as it is non-invasive, and no radiation as it is thought to be a multifocal and bilateral disease), but prevention is a good idea if you want to be proactive. Prevention is by 2 methods (neither of which is 100%)----either by medications (tamoxifen or evista) or by bilateral mastectomies (PBMs). There are pros and cons of both choices, but both can help to decrease your overall risk significantly.. Feel free to PM me if you'd like.
Anne
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Anne is right there is no definitive answer/treatment when it comes to LCIS. It is frustrating to deal with. Never sure what to do about it.
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Hi Shabby and welcome to the LCIS board. I can assure you it is a place where you can gather lots of information, get lots of support and a place to come to where everyone knows where you are "coming from). I was diagnosed with LCIS last July when calcifications appeared on my yearly mammogram and I had a core biopsy followed by a lumpectomy. My first reaction was to do a PBMX....fearing that that was a knee jerk reaction, I took some time, researched all the options, spoke with a plastic surgeon, spoke with an oncologist, spoke with my breast surgeon, my family and my dearest friends. In the end I went with my first reaction and I had a PBMX on 02/28/12. I recently got my pathology report back that said all my pathology was clean with no traces of malignancy. When I told my daughter that she asked me if in hindsight I regret my decision...NOPE...it was, is and will always be the right very personal decision for me.
I would encourage you to read, talk to health care professionals, talk to those closest to you and if you are so inclined spend some time in prayer. I do believe that we all find the paths that arre right for us.
Good luck with what ever you choose and we will always be right here when you need us!
Maryellen
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I had LCIS in all 3 spots biopsied. Biopsies were negative, but likelihood of pretty dispersed LCIS in both breasts, PLUS three generations of BC propelled me to prophy bmx. Without the family history, I would have struggled with my choices. My bmx pathology was clear, so I am much relieved that I took care of the risk and was able to skip 'my turn' with the family disease. I am BRCA negative, but the familial tendancy was too strong for me to ignore. Had immediate diep recon; still have nipples and tatoos to go but I am very happy with results and looking forward to a lifetime of not getting biopsies, mri, and looking over my shoulder. Again, it was the family history that spoke so loudly to me.
Carol -
I was diagnosed wtih LCIS after excisional biopsy late December, 2011. My pathology showed several spots of LCIS, a small amt. of ADH and ALH throughout. . . . I was NOT considering the PBMX route, just had planned to do all the MRIs, diagnostic mammos and doc visits to be vigilant; however, my br. surgeon told me I need to go ahead with the PBMX about a month ago. I gather he doesn't usually make such a recommendation. I'm getting used to the idea and learning all I can to prepare, meeting with plastic surgeons and getting second opinion from another breast surgeon. Off to meet with the 2nd opinion doc in the next few minutes! This is definitely a confusing diagnosis, and this site has been so helpful to hear from other women who have dealt with the same thing.
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annievan - my diagnosis is the same as yours, just wondering why your surgeon recommended the PBMX? Right now I am doing the diligent every 6 month follow up.
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I met with the surgeon this morning and she is going to do a excisional biopsy in a couple of weeks. She said I had "extensive LCIS". She was shocked that it was LCIS because based on the mammogram and the formation of calcifications, she suspected DCIS. She said that might still show up on the surgical biopsy. She ran through options with me and seemed to be leaning towards either dilligent monitoring (MRIs, examinations & mammograms) or the PBMX. She didn't seem to be a big fan of prescribing Tamoxifin. Of course, if DCIS shows up in the next biopsy, I guess that's a game changer anyway. I'm just trying to absorb everything and not panic. I don't have to make a decision today. This forum is so great for me! Thanks for all of the help.
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LCIS is an exactly what the abrievation means. Lobular Cancer In Situ. In addition, unlike any other preinvasive condition, or cancer, LCIS in one breast is a marker or heads-up for increased chances of other cancers in either breast. That's a one-two punch to consider. It's important to know that the odds are favored LCIS will never be a problem in a woman's lifetime.
An argument could be made that not only is a preventive bilateral mastectomy unnecessary but the expensive & frequent monitoring & time commitment universally recommended following the diagnosis of LCIS is overkill. The odds are still favorable for no advancement of disease but they've narrowed.
A woman diagnosed with LCIS, who has the great good fortune of insurance, funds and access, is often told she must submit to a lifetime of monitoring the problem breast that may not be such a problem after all.
Catching LCIS gone bad will be revealed early with all that monitoring, so say the odds. But if the odds fail, as they did when you get LCIS in the first place, and LCIS goes invasive, you've caught it early and that's way better than catching it later.
So it's caught later but it's early, not as bad as it could have been. The testing was successful and the medical community now decides it's time to beat the odds. Doing so when LCIS was the biggest concern isn't important, because after all, they're all over this now and it's early in the game. Maybe it's just a microinvasion. That's better than catching it later still because if breast cancer is treated sooner while local, you are more likely to avoid metastatic disease. Serious intervention is now necessary while watching and waiting at a whole 'nother level, but you still beat the odd of a higher staged cancer more likely to result in metastatic issues. You're grateful and happy, right?
Choosing a mastectomy to take the odds of invasive breast cancer to the low single digits when at the LCIS level seems like a good idea for women who don't like chance so much and chose to go against the odds and have a PREVENTATIVE surgical option, when the outcome for failure is less catastrophic. That we're told finding invasive disease early is the only game is town is nuts.
Every woman should be provided the choice for the lowest odds possible and the opportunity to disengage from a commitment that may not be in her best interest. This must be every woman's decision. Offered only a lifetime of medical testing unless or until invasive cancer reveals itself is breathingly radical, barbaric and cruel.
It's incredible sad women must doctor shop to be offered fair treatment. -
Hi JanetM -
I'm sorry I've taken so long to reply to your question re: why my doc recommended PBMX. . . . Honestly, I can't really figure out why he made that recommendation, except he said he looks at each patient's situation individually and makes preventive treatment decisions. I've been in detective-mode trying to understand just what weighed in his thoughts. . . I know he felt like I have a lot going on in my breasts and seems to think they (radiologists) will continue to see things, and I'll be continuously going for biopsies, basically chopping away at the breasts bit by bit and could anticipate all the anxiety that goes with with waiting for answers each time. I know that one of his LCIS patients had just been diagnosed with with Invasive BC and it's already in her lymph nodes, so the careful "watch and wait"-get-iit-super-early-approach didn't quite pan out in her case, and she was miffed. Maybe that recent finding swayed his decision in my case a bit, I know he seemed concerned and truly seemed to be trying to save me from having to deal with chemo and all the fear, but also, it seemed like he was drawing from his years of practice experience and recent findings to look at my situation and make a "gut" decision. Do docs make "gut" decisions? I do respect his knowledge and certainly appreciate him looking at me as an individual to make recommendations. It's just soooo confusing. Everything I am learning about LCIS (and I am burning up the internet and have talked with all the doctors I know), shows me how little they do know about LCIS definitively - - is it a precurser, precancer or marker? When LCIS patients have Invasive . . . is it due to a progression from one to another, or is it a correlation that one exists alongside the other? I do think some medical professionals seem to think it will help our feelings to say it's "NOT BREAST CANCER", but if it's cancer-like cells within a confined zone, and it signifies a very high bi-lateral risk of BC, enough so that having double masectomies is either advised or considered, . . . .hey - might as well just tell me I have BC! I'm surely not trying to minimize how lucky we are to not be dealing with the chemo, radiation, fears of where/how much it's spread, etc. . . . I know in the scheme of things, we're a lucky lot. I'm just very confused about what to do.
Went to 2nd opinion doc on Monday, and her initial rec. was more along the "fine to just wait and see", approach. She's not a big fan of tamoxifen, so that was helpful to hear in my case since I've had reservations about it as well. She did say I have "very busy breasts", and she didn't say the PBMX was a dumb idea, and even said it would be a reasonable alternative, but obviously that wasn't her initial thought.
Yesterday, I met with a plastic surgeon to learn first-hand about things. That was rather a blow, as I had counted on (if I do the PBMX) having nipple-sparing, with incisions underneath, and I think she doesn't think I'll be a candidate for that, so this is a new, sadder revelation. . . not quite as bearable as it was before.
I realize I'm not being helpful to anyone new on here, airing my confusion and decision-making process in public! The wonderful thing for me is. . . that there is this forum here where you're at least talking to people who understand exactly what you're talking about, and either have wrestled with the same things or are doing so at present!
Thinking of all of you who are just now learning about atypical hyperplasia, LCIS ,etc. for the first time (I feel like a veteran with my 4 month knowledge
). It's a definite in-limbo feeling, isn't it? Hold on to all the positives you're hearing, arm yourself with knowledge, so you'll better understand each step and lean on those close to you who are willing/able to be leaned on! Thanks to the veterans out there who know about this and who so willingly offer to share their experiences! So kind, and I appreciate it very much.
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msippiqueen-You just summed up so many of my thoughts exactly! You are a veteran to me-I'm only a week into this LCIS thing. Thanks for sharing your thoughts.
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Hi Loriio, I too am seeking PBMX as the more sure shot. I think the way msippi does, she sums it up well IMHO. Dx in Nov, scheduled for April, just had b9 MRI following wide excision, so hopefully surgery and that's it! Your thoughts on your plans/
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I was diagnosed with LCIS in the fall after having a lump removed. I've been to two surgeons since and both "do not recommend" a bilateral mastectomy. That is the route I want to go ( I think) but am afraid to go against the surgeons' recommendations. Do they know best? I don't want to take Tamoxifen, and am afraid of living with the risk. I am afraid of finding out one day that I have breast cancer and that I will regret not taking care of this before. Does anyone have any advice????
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I am also wondering about reconstructive surgery. It seems, from reading this, that it is sometimes more grueling than the actual pbmx. I was thinking about not having recon. Is that an option????
Thanks in advance for any response. It's hard to discuss with friends and family, just because they aren't in my shoes like you all are.
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Hi Coco,
Yes, the three options are all valid and the choice is personal. You can keep looking for a more open surgeon, it is your choice, not theirs. Remember, you hire the surgeon, so you need to find one you can work with.
Yes the reconstruction, from what I hear is the hard part. My friend had a BMX for stage one and she did not do reconstruction. Surgery for her was no big deal.
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Coco, not having reconstruction is definitely an option. We have busy, friendly communities who have made both choices, and who may be able to help you see the ups and downs of each:
Living Without Reconstruction After a Mastectomy
The Mods
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I hope you ladies undergoing testing last month or so are doing well.
As an aside, I appreciate the thanks, plymouthpeople and loriio. For a long time there was only the breast conservation viewpoint advocated on the LCIS forum. I saw others who favored PBLM's run off (Misty J comes to mind) and decided to hang around to offer the counter view of PBLM as the viable and reasonable option it is. -
Hi coco
I felt the same way you do about taking meds and monitoring; that's why I had PBMX in 02/12. I din't have recconstruction and I am ok with that. I wear prosthesis at times and go flat at times. I am fine either way. The most important thing is that you make the decision that you can live with
Good luck to you
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My surgeon told me that pbmx is considered a choice for standard of care, so he fully supported that route as one I might consider. My extensive family BC history made it an easy decision for me. LCIS was found immediately adjacent to each nipple, so I did skin-sparing but not nipple-sparing bmx, with immediate diep recon. The surgery was long, frightening to think about, but I took advantage of the non-crisis nature of LCIS and got my butt moving in the gym for 11 weeks pre-surgery. I was 57 at surgery, so no spring chicken, but I have to say that the recovery was longer, but no more painful than my two C-sections more than 25 years ago, and within six weeks I was back to (very moderate) cardio exercise. Surgery was last July, and I am fit, healthy, very glad I did the surgery, and have nipple recon scheduled for this week. I work out nearly every day, lift weights, hike, and will begin paddle sports when it gets a bit warmer where I live. The cosmetic result is very good, but imperfect, and I am ok with that.
Certainly the choice is a personal one, and my experience is well...my experience--everyone is different in anxiety, tolerance for pain, and appetite for the big life disruption that comes with recovery from a big surgical event. The good news is we have the choice--and I hope if anyone is considering pmx but your surgeon does not support the approach, please sit down and discuss all your reasons with that surgeon. Surgeons need to treat the whole you, not just one or two body parts.
Best wishes to all who are wrestling with this decision, and big thanks to Leaf and others who present a very balanced and evidence-based view of the non-bmx approach. A well informed choice leaves us less likely to second guess ourselves later!
Carol
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Couldn't agree more. Doctors don't want to discuss the high..HIGH... chance of missing detecting cancers before they are invasive! You can be screened and screened and opps your stage 2..3..4.
LCIS is a pretty strong sign that cancer is headed your way..
Thank god this forum is availalbe to inform people....the medicial profession doesn't care about maximially reducing chances of BC. WE DO.
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I met with an MO today and was surprised to hear him recommend the PBMX. I read on one of these forums the belief that surgeons recommend surgery and MO recommend medication. (Makes sense, so that' what I expected.) I have already had 2 breast surgeons recommend PBMX. The MO was kind and clearly expressed the reason why he thought that the best option for me. His reasoning was the same as the other 2 doctors. I don't feel pressured to make a decision but I am realizing that if my goal is to take care of this and move on, there is a "best option", even if it's a drastic step. At least I have some peace about it since I have done the research, and talked to different doctors. I also made a point to ask about doctors who tend to be conservative. I guess my breasts are just a mess.
The best thing I've done is gone to the breast center at my local hospital and met with a nurse navigator. She was wonderful and walked me through all of the options with no prejudice or preconceived notions. Her advice was helpful, but just to have someone to talk to face-to-face was invaluable.
The next step for me is meeting with a PS next week about possible reconstruction. I'm pretty sure I want reconstruction so I'm very interested in understanding more fully that process.
I wish everyone else on this journey best wishes!
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I am confused, you state two opinions, LCIS will never be a problem in a woman's lifetime and LCIS may at some time change. I would be happy for claification , perhaps I have misunderstood
your post? -
TantaM-I sent you a PM on LCIS.
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I am very new at this, what is a PM
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At the top of the screen on the right you will see Private message. I should say you have 1. Just click on it.
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