LCIS worried

lisamarie68

Hi everyone , My name is Lisa . I was just diagnosed with LCIS in situ .. the BS said this is NOT CANCER !!!! ... just a very strong marker .. it is in my right breast, I had a MRI yesterday. I am not worrying until they call with results ... How long is the wait they said 24 hours ...then DR says I must have surgery it has to come out .. so if it's NOT CANCER .. why does it need to come out .. this is so crazy .. I cant sleep , eat , or function ...DR also explains after surgery there are 3 options , 1. Tamoxifen 2. Radiation. 3. bi lateral mastectomy .. Hmmm I see a lot of the women on here opt for Mastectomy and makes me think that is the smart way to go . I just wished I knew how serious all this really is ... if its that serious at all ... I have small breast and dense . I have no family history of BC ... any help , or suggestions would greatly be appreciated . thank you all for listening 

Anonymous

LisaMarie------even having lived with LCIS for over 8 years now, is is still so difficult to answer some of your questions, since there is still so much controversy surrounding the whole diagnosis, even among the medical professionals. It's so frustrating when even the doctors can't agree. My old oncologist stated emphatically that LCIS is cancer, just a non-invasive type (which technically it is pathologically); but my new oncologist (who is even in the same office) feels it is more a very strong marker for high risk in the future. I had a wide excisional lumpectomy---the reason is not to try and "get it all out" (that would require bilateral mastectomies as LCIS is thought to be a diffuse disease, not localized to one spot); it is to make sure nothing more serious (DCIS or invasive bc) is in there along with the LCIS. The 3 standard options are : 1) close monitoring alone 2) tamoxifen along with #1  or  3) BPMs .  (radiation is not given for LCIS).  I took tamox for the full 5 years (and now continue with evista); I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. I haven't had to have any further biopsies during this last 8 years.  My MRI results usually take 3 to 5 days. My risk is further increased due to my mom's ILC.  The decision on how to manage LCIS is so very personal and it has to be one which you can live with, no one can tell you which route to take or which route is "better" Feel free to PM me if you'd like. Praying you get good results from the MRI and from your excisional surgery with nothing more serious found.

anne 

november

Hi Lisa

I was diagnosed with LCIS after breast reduction surgery in November. In February I will have PBMX even though I don't have a family history. I chose to go that route because I didn't want to have to worry about if and/or/when I will have an invasive BC. Like awb says, treatment is contreversial; you have to make a decision that you can live with or rather easier to live with. The " good thing " is with LCIS there is no rush to do something. Making the decision is not easy, so take time to research and do what feels right to you.This board has help me a lot. Good luck to you

Cats134

Hi LisaMarie,

I started on the breast cancer diagnosis train 7 months ago.  After 6 biopsies (stereotactic and MRI guided) and the path reports reading LCIS, LCIS, LCIS, ALH, radial scarring) making a decision to have a PBMX was still difficult to make.  My options were: 5-7 lumpectomies in my right breast, 1-2 in my left, followed by 5 years of tamoxifen and screening every 6 months, or a double mastectomy. 

I have my PBMX almost 5 weeks ago.  I'm so happy that my path report showed no invasive cancer, so now all I have to do is heal. 

If I had once instance of LCIS, I may have done things differently.  I can't imagine what my breast would have looked like after 5-7 lumpectomies.  But then again, I really didn't want to go on tamoxifen and I didn't want to feel like I was looking over my shoulder every 6 months waiting for results.

As others have said before me, this decision is a very personal one.  Research, get all the info you can.  This site has so much info and gives so much support.  Just remember to breathe!

gentle hugs,

Cats

carol57

Hi LisaMarie,

My LCIS was in both breasts, multiple spots found incidental to biopsy for a variety of lesions that turned out to be benign. My family history is crazy, so my decision to do prophlyactic bilateral mx was an easy one. BUT...everyone's risks and their comfort level with living with risk are different.

Think about this:  The silver lining in your diagnosis is that you have an opportunity to take steps to minimize your future risk. Whether you go the pbmx route, frequent monitoring, or a combination of tamoxifen and monitoring with mammo and MRI, you can lower the risk that you get BC or that any BC diagnosis is discovered beyond the earliest, most treatable stage. 

I feel truly fortunate that I got an early warning that gave me options to choose from.  Options can narrow considerably if you discover you have a well developed BC.  You have a chance to kick this thing in the butt before it has a chance to kick your unprotected flank.  Even opting for simple frequent monitoring gives you a take-charge advantage.

No one ever wants to hear they have anything even remotely suggesting BC, but of the whole range of what you might have been diagnosed with, LCIS gives you real options to interrupt what otherwise might have been.

This is still hard, of course.  But good for you to be asking questions! Continue to do your research, and then get your strategy brain going and work with your medical team to craft a path of action you are comfortable with. 

So many women here truly care...

Carol 

leaf

Hi there!  Welcome to the LCIS forums, though I certainly wouldn't wish LCIS on anyone.

I agree with awb and the other posters above: there is little about LCIS that is NOT controversial.  

But from reading your post, I would like to invite you to gently explore some of your ideas further.I think its good to know when you are making a decision when someone throws some numbers at you that you know how solid those numbers are.  Particularly in the case of LCIS, they're not very solid.

1) The adjective of 'high risk' is controversial, and it is important to ask ' Its high risk in comparison to what?'.  In other words, how high is high?  In this paper about MRI screening (not diagnosis), the authors do NOT describe LCIS as 'high risk'. http://onlinelibrary.wiley.com/doi/10.3322/canjclin.57.2.75/full  and quote the lifetime risk of breast cancer of LCIS patients to be about 10-20%. Women with certain BRCA mutations can have about a 60% lifetime risk of breast cancer http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA, so it is good to put things into perspective.  Some authors consider ALH or ADH 'high risk', even though most people think these lesions have about half of the risk of LCIS.

Family history may play a major role - undoubtedly there are breast cancer risk genes that have not been discovered.

The 'science' of breast cancer risk is in its infancy, even for the average American woman who has never had a biopsy.     Perhaps the best long-term paper on  LCIS breast cancer risk is this Chuba paper, which gave an incidence of at least 7% after 10 years.  Since LCIS is unusual, its hard to get a lot of good data, particularly the risk of breast cancer after many decades.  

Bilateral Risk for Subsequent Breast Cancer After Lobular ...

university.asco.org/dgtfiles/ClassicReferences/Breast./1..pdf

 

2)  The population here of LCIS patients are probably not representative of the whole population of LCIS patients.    Since it takes some time and effort to post on a support group, if you count the number of posters here who choose option X in preference to option Y or Z, you are not getting a representative sample here.  Its well known, for example, that people who are having problems with their computer post on websites (such as Product X is a bunch of junk), but very few who are happy with Product X post that they are happy with Product X. Why should they take the time to hunt out such a website and post they have no problems with it? 

I'm not trying to say what choice you should make, just know here you may see a skewed population sample.

I was very scared after diagnosis.  It took me several years to find out what this diagnosis of LCIS meant to me. I had genetic counseling (not testing) at a major institution because I had a paternal grandmother with bc who had no sons.  I also had 2 maternal aunts with bc.  It ended up being all these cases were postmenopausal, and I was considered to be at 'low risk' for a BRCA mutation.

If you have a weak family history, then your lifetime risk of breast cancer is probably <50%, possibly much less.  I was given quotes of 30 or 40% lifetime chance from my genetics counselor and oncologist (without tamoxifen), and a '10-60% chance, but probably closer to 10-20% lifetime chance' by a 2nd opinion at an NCI certified major center. My breast surgeon 'did not want to do any further surgery on me'.  I felt robbed of that option, even if I may not have chosen it.  I chose tamoxifen.

I was very scared after my diagnosis in 2005, convinced I was going to get the 'worst case scenario'.  I have a history of psychological trauma, so I tend to go to the 'worst case scenario' anyway.

I am so glad we have our community of LCIS here.  LCIS is unusual enough that I knew I would never find any in-person support groups.  It makes me feel like I am not alone, and neither are you.

Stonebrook108

I've sent you a private message

JanetM

I was diagnosed with LCIS and ALH via stereotactic biopsy after 3 years of every 6 month mammos and ultrasounds.  I had a lumpectomy to remove this and the pathology confirmed the LCIS and ALH but also found ADH.  At my follow-up appointment my surgeon said that my breast had a lot going on and she was keeping me on the every 6 month schedule for the forseeable future.  We talked about tamoxifen but I opted not to go in that direction.  As things turned out I needed a complete hysterectomy about 8 weeks after the lumpectomy.  Not sure how much longer I can deal with the feeling that I am waiting for the other shoe to drop with this diagnosis.

lisamarie68

My Doctor at the breast center seems so insensative .. all she keeps saying is LCIS is NOT CANCER ! I am a person who worries a lot and the worry and the wait is just BS !!! im sorry to be this way . I will not take tamox too many cons im reading about ... just waiting for this pre op test jan 31 and surgical biopsy Feb 7th is enough to drive me insane... been on the couch sleeping on and off not wanting to do anything .. wondering after biopsy what results will be .. can this now become ICS or DCIS ... OMG im going CRAZY !!!!! sorry Janet my prayers are with u . I had the cervical issue 1 year ago .. surgical cold knife procedure .. wanted hysterectomy and surgeon said i was too young at 42 .. whatever .. I had my kids and no more in the future .. anyway .. I have been worrying so long now .. LOST  

leaf

Most (not all) oncologists do feel that LCIS is not cancer.

Your chances of an 'upgrade' from LCIS to 'something worse' are about 20% - in other words, about the same chance you had of getting a benign diagnosis from your core biopsy.  That means that you have about an 80% chance of 'holding the line' at LCIS and nothing worse.

In MOST (not all, but most) cases, they do not think that LCIS becomes ILC or breast cancer.  They don't understand how LCIS puts your breasts at risk.

Are you open to considering calling your doc (even your internist or GP) for an anti-anxiety med?  After I went through the LCIS diagnostic process, I went to a therapist, and got diagnosed with a PTSD-like condition for long standing trauma issues. Speaking for myself, I would have felt better had I done this earlier.

If therapy or anti-anxiety meds are not for you, then it may be helpful to explore other avenues, such as meditation, exercise, religion (if you are into anything like that) etc.  so you can do something and not feel so 'out of control'. 

I wish I could wave a magic wand and take away your anxiety.

beacon800

LisaMarie, I get it!! The doctors can be insensitive to us because from their point of view, not so much is wrong with us and they see patients with very serious invasive cancer on a daily basis.  So to them, we are not much of a problem, lucky really compared to some others.

But to US, we are upset and we are very concerned not just about right now, but about the future.  I was so afraid of my breasts after a while, I really, really hated it.  I felt like they wanted to kill me and would do so, given half a chance.  My mom and her Aunts died of breast cancer so I was even more disturbed. 

I did mastectomy and that was the best thing for me as I had multiple risk factors and didn't mind the idea of surgery much at all.  I figured having all these  biopsies was going to add up to the same  thing but stress me til I died along the way!

Anyhow, the dust has settled for me and looking back, I feel worry is not a wrong emotion but total fear is not needed as the diagnosis is what it is and will not kill you as it stands.  I didn't want to take Tamoxifen either, so I understand.  It's mainly the ball in  your court, making a decision how to manage the problem, stressful, but you do have options.  Take it easy as you can.

lisamarie68

Thanks for the info , I know I am  a lot .. yes maybe need to fins out if I can get some anti anxiety meds .. I just cannot belive I keep sitting here on my couch ..not wanting to eat or move .. and cannot sleep ... as far as family HX i dont know .. my moms side there arent any bc .. but I dont know who my father is or what his side of family has , so that also keeps my mind wondering . anyway thanks girls gonna try to make a grilled cheese and then go babysit my granddaughter ..

carol57

Grilled cheese followed by time with a granddaughter sounds like some pretty good therapy to me!  Best of luck working through all the concerns you have; they are all very valid.

tabby

lisamarie68:  My heart goes out to you.  I too lived with this same diagnosis, then later, ILC.  I had already decided to have the bilaterals when diagnosed with the LCIS.  It just made sense to me to remove them before anything developed so I would not to do more extensive things, aka chemo, etc.  Once diagnosed with the invasive, it was a no brainer for me but that's for me only.  This is your decision and the good thing is you have some time to research and explore your own feelings about what is best for you.  I FEEL your frustration and it is warranted!  The information lack is frustrating and when the ones who are supposed to guide you through this differ in their opinion of things it's MADDENING.  You will make a good decision for you and all of us will be here for you.  My best to you as you try to learn and sort all of this out.  (I decided not to do tamoxifin after bilaterals with reconstruction but did remove ovaries).

lisamarie68

Today is pre op testing .. yeah fun day ! then exisional wire guieded biopsy scheduled for Feb 7th ... hope everyone is having a grreat day 

leaf

Please know we are all thinking of you and hope all goes well.

lisamarie68

well i had the excisional biopsy .. who the hell knows the results and when thye will call.. I had operation on Tuesday the 7th .. on wednesday the 8th i was back at hospital in er due to post op infection .. more iv and antibiotics and pain meds .. my Dr is totally cold and I got an appointment with another in a few weeks .. I am just devistated and fed up ... this waiting sucks more than anything ... on oral antibiotics for 10 days ... ugh !!!!

carol57

Waiting does stink, and the icing on the cake was that return trip to deal with the infection. Ugh is right. Hang in there. Sounds like it's time for some chocolate distraction.  Or something!

JanetM

The waiting does stink.  A return trip to the ER is never fun.  Thinking good thoughts for you.  We don't live all that far from each other.

dmarie71

lisamarie,

I feel your pain.  I waited 13 days for my results after my first biospy and I had to call for my results.  I was told everything was fine.  Then I developed a large painful hematoma.  In the meantime, I transferred to a reputable breast care center for a second opinion about receiving a breast MRI in the future due to fibrocystic disease and very dense breasts.  When I met the new BS, she shocked me with the news, "I am sorry to tell you this but we reviewed your pathology slides and you have ALH."  I then had a partial mastectomy and they upgraded me to LCIS.  I then had my slides sent to Johns Hopkins and Vanderbilt and they both said it was ALH.  I started tamoxifen on Christmas Day...Merry Christmas to me!  I continue to develop very large cysts in my breasts and am constantly going back for ultrasounds to make sure they are ok. I'm having a golfball-sized one aspirated next Friday.  My freaky cells were discovered in a complex cyst, so I freak out every time I find a new cyst.  I can't think about anything else but this crazy breast situation.  It has impacted every part of my life.  I cry a lot and wish someone would just tell me what to do.  I really think I can't live with the constant stress.  I just want to put it all behind me and move on.  I want to do a PBMX in May...I just have to gain the courage to commit to it.  I'm sorry you're dealing with all of this too and an infection on top of it!  Take care!

lisamarie68

I know how you feel dmarie , I too was told this is nothing just LCIS and a strong marker for cancer and all that needs to be done is to take it out . well they never told me after surgery anything . I have no idea what they removed , what size or anything .. then my poor little boob looked so deflated and lifeless I was devistated , now post op 6 days and it seems to have come back to life . I feel these needle like pricks at the incision site . I am guessing that is normal . I cannot eat again nor sleep.. waiting is killing me slowly. I am single and live alone so there isnt anyone to really talk to but my daughter on the phone and my mom via phone calls . I am scheduled to fly out to Vegas on the 18th to see my mom and have some much needed laughs .. I also cannot stand the thought of tamoxifen and or radiation and close monitoring .. I am a big worrier and the stress alone will kill me ... so I also want to do PBMX and was thinking April but may have to wait ass I need to save money .. this month with all dr appointments and surgery has made me loose a lot of work .. anyway I am just rambling but I do understand as I am right herre with you .. Hugs xoxo

tpup

Lisa - I feel your worry and pain. I went through the exact same thing last Fall, and just posted about the cancer vs. non-cancer issue. I also felt my BC surgeon was a bit insensitive. When I asked a question about what the hormonal impacts were on BC in the waiting room before my surgery, she about scolded me and said "YOU DO NOT HAVE CANCER". I ended up with clean pathology (besides the LCIS)...area around it was fine post-surgery. I did meet with an onco yesterday. I will tell you that he is TOPS in his field. He said it IS cancer, but just not invasive BC. He said carcinoma is CANCER. It is not normal and had to come out. Luckily mine was contained but he said I will have to watch and monitor very, very carefully. (I chose the monitoring route, no Tamox due to the risks and side effects). I know exactly what you mean...however I also can't imagine the stress of these BC docs who deal with much more serious cases on a daily basis - women who are in stage 3/4, facing life decisions on a daily basis. Still no excuse for the insensitivity but could be understood if she was having a bad day.

PM me anytime. I understand how you feel. I was there, still worry and pray you get a good pathology report. Hopefully you have heard by now? Keep us updated. I will say on a positive note, it has been a gift to me in many ways and has changed my life, my outlook, how I spend my time and my compassion in general for others and whatever they may be going through on a daily basis, cancer or not. Best wishes.

leaf

It is really, really tough when you have a BC surgeon who is insensitive, when you are going through a very vulnerable period of just being diagnosed with LCIS (or any kind of abnormality.)  You don't know 'How will this impact my life?'

Surgeons in general have a reputation of being uncaring.  I'm sure its tough 'taking someone apart and putting them together again' AND caring about them.  Usually medical people have a better bedside manner.  However, I have had some surgeons who DID have a good bedside manner; that I think is unusual though.

I read a psycho-oncology book that advised that one go to a medical (non-surgical) doctor for 'warm and fuzzies'.  This is not a guarantee of course, but its one of the reasons why I go to an oncologist for my care and not a breast surgeon.  But an oncologist is not going to do surgery, and, at least at first, you're dealing with radiologists and/or breast surgeons.

Since LCIS is usually an incidental finding on a breast biopsy, it cannot be reliably seen on imaging.  So we don't know how much LCIS one has.  This makes it difficult in predicting what to do with LCIS because we don't know how many women with LCIS are walking around with it and don't know it.  

Most LCIS is multifocal (meaning it occurs in several different spots in one breast), and is often bilateral.  They know this because they used to routinely do bilateral mastectomies on LCIS patients (before about 1990), and they could examine the mastectomy specimens.  

So, it is not possible to 'remove all of the LCIS'.  ( You can't tell  what portions of the breast to remove if you can only tell where it is AFTER you've removed a sample.) Even if you had bilateral mastectomies, there are still breast cells that remain.)  Plus, it is probably not an effective strategy to 'remove all the LCIS' even if you could somehow detect all the LCIS in both breasts.  Many breast cancers that subsequently occur in LCIS patients occur NOT at the site of the known LCIS, but in places in the breast that looked normal on imaging.  Yes, LCIS is weird and we don't know a lot about it.

But, the majority of LCIS patients (at least those without a strong family history) do NOT go on to get breast cancer in their lives. http://jco.ascopubs.org/content/23/24/5534.long

lisamarie68

I got my pathology report and it reads as follows ,Lobular Carcinoma in situ,extensive,with pagetoid extension into the ducts.Atypical proliferative fibrocystic change with Atypical ductal hyperplasia and flat epithelial atypia focal,extensive columnar cell hyperplaysia with papillary hyperplaysia, usual duct cell hyperplasia focally florid.. the BS was a little more compassionate this time around ..maybe because I had a man with me , I dont know ... she also said it is probably in the other breast as well . I am just glad to say that this part of my life is over ! I am now going to Vegas to visit my mom and try to relax and not think anymore about this ... thank you ladies for helping me out ..

farmerlucy

Hi everyone. I can so relate to the agony of the high risk screening. I figured they can either take my breasts off one piece at a time, or I can opt for the Pbmx route. My surgery is Tues. Praying there is nothing worse hiding in the dense breast tissue. I have ALH, ADH, and high risk family. I will let everyone know the final path report. Fingers crossed!

lisamarie68

Best of luck and best wishes to you farmerlucydaisy , I am also going the pbmx route ... I gotta get rid of all these abnormal cells and be free of my mind ! I am doing immediate recon as the bs said i am an excellent candidate . anyway mine wont be till april at least .. sending u hugs and prayers xoxoxo, also I know for me I cannot keep getting biopsy after biopsy and the wait is killer for path results .. again my thoughts are with u 

carol57

Lucy and Lisa, Prophy bmx is not for everyone, and clearly you came to the right decision for you, after lots of deliberation. I came to the same conclusion after widespread LCIS findings, coupled with extensive family history. My surgery was last July, with immediate diep recon.

I cannot describe the immense feeling of relief the moment I received the post-bmx path report telling me that I had zero malignant findings in all that tissue...to me, after waiting for all my adult life --nearly 40 years-- for 'my turn' to get the family disease--this was the ultimate triumph. I felt like I smacked down cancer before it had a chance to get me.

And, despite not being exactly a spring chicken at age 56, I can tell you that recovery from the bmx/recon was entirely do-able.  I think you might fairly ask yourselves at some point just after surgery 'what on earth did I do,' but this will pass quickly as you progress through recovery.

Just my experience--and I wish you both well. As I also wish only the best outcome for everyone who deals with LCIS and chooses surveillance or another strategy instead of pmx.  I feel blessed that we have choices in how to deal with it, and there are some amazingly intellingent and helpful posts here that help all of us inform ourselves so we can choose the path that is right for us (thank you, Leaf and others).

Carol 

mistie

Hi November

 The same thing just happened to me after my breast reduction and I'm leaning towards a bilateral mastectomy which was recommended due to my family history. The one thing I'm worried about is that I'm only 30 and it seems like a radical approach. How long did you wait before making a decision post breast reduction?

november

mistie-sorry you are going thru this. My reduction was on oct 31, 2011. My PBMX was on 2/1/12. I don't have a family hx but I don't like the wait and see approach and too many side effects from tamoxifen. Yes it is a radical approach, however, I don't regret my decision but i am 13 years older than you are. It is a hard decision to make so do a lot of research and be confortable with whatever you decide. Good luck to you

Crescent5

I'm going to be doom & gloom girl. My case is rare, but I think anyone with LCIS should be aware of this possibility. I never researched what type of invasive that LCIS could portend. But it seems logicical that it would be lobular. What they don't always tell you is that lobular cancer is not easily detected, often going years undected. Go over to the ILC board and look at the size of the tumors that were unseen for years.

My ILC tumors, discovered post PBM, were tiny in comparison. However, be aware that I had an MRI 3 months before, and these tumors were not spotted.

I was so nervous about this surgery and how I would look and feel afterward. I was lucky to have NSS. I'm 5 weeks out and feeling better every day. I don't look fabulous as I still have the TEs. Honestly, I probably would have been bummed with what I did to my body had ILC not been found. But that's because I wanted everything to remain as perfect as I thought it was (perfect in the sense that I was real).

Having heard those words none of us wanted to hear, I can tell you, the imperfect results mean nothing, This crap is nothing to fool around with. Everyone must make their own choice based on what they can live with.

carol57

Crescent, I don't think your story is doom & gloom so much as a reality based telling of another angle of this crazy LCIS story.  Everyone correctly says over and again that it's a personal decision, and hearing so many different stories and understanding the 'why' of so many choices can add a bucket load of information to help inform each decision. I did pbmx because my LCIS, found in both breasts, was coupled with an outrageous family history. My post bmx path was totally clear, and yet still I feel relief and gratitude for the opportunity to do a pre-emptive strike. Thank you for sharing your story. Everyone who shares here, gives a priceless gift to others.

Carol