LCIS on biopsy - just had MRI, have questions

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beacon800
beacon800 Member Posts: 922

I was dx with LCIS (with note that it might be PLCIS in places) July 24.  I just had an MRI yesterday.

My radiologist looked at the MRI and said she sees areas in the same breast that have absorbed the contrast dye, but does not appear to her to be indicative of invasive disease.  She says the areas that absorbed the dye could me more LCIS, DCIS or fibrocystic changes.

That breast is always having cysts and always feels terrible and lumpy. 

My question is: How realiable is MRI for determining if you have invasive disease?  Naturally I am very concerned.  Thanks so much. 

Comments

  • nash
    nash Member Posts: 2,600
    edited July 2009

    Beacon, MRI is very sensitive for picking up invasive disease. It's so sensitive that some oncs don't like to use it b/c of the high false positive rate. It's not 100% fool proof, of course, but it's more likely to pick up something benign than it is to miss something malignant.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Beacon--I think MRI is supposedly 97 to 98% accurate for detecting invasive bc. If it is more LCIS or just fibrocystic tissue, then your treatment doesn't change; however if it is DCIS, the plan could be very different. So it will be important for them to figure out if there is any DCIS involved.

    Anne

  • beacon800
    beacon800 Member Posts: 922
    edited July 2009

    awb and nash, bless you both for answering my post.  I feel so much better from reading your information.

    I am at the "catastrophizing" stage where everything scares me and I have trouble trusting things.  I am glad you told me these details.  I love women helping women.  When I get better I will help people too.  Thank you so much. 

  • nash
    nash Member Posts: 2,600
    edited July 2009

    You're welcome, beacon. Keep us posted.

  • trishm01254
    trishm01254 Member Posts: 9
    edited August 2009

    I was dx after papilloma excision.  Next appt with bs is 9/30.  I wish he would have scheduled me for mri for other side now that plcis found in rt.  Seems like a long wait until next appt.  He was going to bring dx to board for discussion.  Most likely will have the 3 options:  careful monitoring, tamoxifen, or bmx.  I'm not crazy about going on tamoxifen.

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    My MRI in June did not show conclusively if I had cancer. Stereotactic needle biopsy revealed LCIS. The MRI show "lighted up" enhancements, which they said looked indicative of DCIS but they said they couldn't tell until going in. For me, mammo and MRI don't reveal what's going on because I'm very dense and have lots of cysts. Long story short, I had a lumpectomy on July 9. It took the pathologist extra long to do lots of slides and staining ... but he found DCIS all mixed in with the LCIS (and some PLCIS) and even a tiny invasive. He wrote "complicated case" on my pathology report.  I'm very glad to have had docs who wanted to keep pursuing ... and now I know and am moving forward.

    Lee

  • beacon800
    beacon800 Member Posts: 922
    edited August 2009

    Lee, I feel our cases are similar.  I am going through the scary time of not having a clear dx and find it stressful. 

    How did all of you wonderful ladies manage your stress during the phases when you just didn't know what was going on?  I am having a hard time at that.

    Lee I am glad you found the answers in your case.  I will check your posts to see what you did next.  Bless you all.

    Mary 

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    Definitely being "in limbo" is the hardest part ... waiting...waiting. I've been there for various reasons at other times in my life, and it's hard not to just sit around an obsess about yourself. I try to find something else to focus on and get excited about -- a new project or making a gift for someone or taking a road trip to visit a friend.

    Mary, are they looking/biopsying to see if you have anything other than LCIS? You may not. If you've had an MRI and something suspicious or an area of "enhancement" is there, then you might want to ask a surgeon about doing a lumpectomy to see if any cancer cells show up under the microscope.

    I've decided on BMX and I'm now talking with plastic surgeons about what kind of reconstruction I want. I think my surgery will be in Sept.

    Lee

  • beacon800
    beacon800 Member Posts: 922
    edited August 2009

    Lee, from what I can understand, there is an area of tissue, surrounding the orignal biopsy site, which is absorbing the contrast dye.  They tell me the appearance of the MRI abnormality is not classically indicative for cancer.  However we would not be sure about it til we have pathology.  I think there are numerous punctate absorbtions of the dye.

    I am troubled by this as how can they do an "exploratory" biopsy and hope to get any clean margins, and won't they miss some spots too?

    The surgeon's best guess is that the other abnormal areas are LCIS and we are looking at BMX down the road.  I concur w/ BMX if there is a whole bunch of  LCIS.  

    I am sort of confused by how accurate this biopsy will be.  Did you have wire localization of the MRI abnormal areas for your biopsy? Very much appreciate any information on this.

    Does it sound like my Doctors are doing the right thing?

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    Mary -- I know it's very confusing. Pcitures/MRI only tell one part of the story -- they know they "see" something, but they won't know what it is until they actually go in there and get some to look under the microscope. I had wire localization for the lumpectomy/excisional biopsy. They put in 2 wires at either end of the 5 cm area (like goal posts). My doc did not try to get clear margins on the lumpectomy (he knew he wouldn't be able to) -- that's what he said. His intent was to get a good portion of the area and get a pathology report. After 4 days, the prelim report was only LCIS, but this very much surprised the pathologist (because he'd never seen so much LCIS without any DCIS), so he told my surgeon he wanted to do more slides and stains. Thank goodness he did -- a week later we got the report that said extensively mixed LCIS/PLCIS and DCIS (and he discovered a very tiny, 4mm, invasive that had broked out of the duct). My surgeon said the DCIS went to the edges of what he got in multiple places. We know there is more DCIS and LCIS in there. How much? Won't know until he goes back in. But I am a barely-B cup, so we know he can't go in and get it all out without really doing a mastectomy. The other side? Probably some LCIS or atypia hyperplasia (abnormal cells). That's why I'm going for BMX. I'm convinced by breasts are just filled with cysts and abnormal cells and lots of pre- and cancerous stuff.

    I think a lumpectomy might be a smart thing to do now for you. It's not like your surgeon is getting out a "lump" and trying to get clean margins. Consider it really an excisional biopsy to take tissue to look under the microscope. But if both of you are already convinced BMX is the way to go to get ride of all abnormal cells, then talk with him about going straight there. I think I've read a lot of posts by women who've done that.  

    Lee

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    With LCIS and nothing worse, the goal of an excisional biopsy/lumpectomy after a core biopsy/fine needle biopsy shows LCIS (and nothing worse) is NOT to remove all the LCIS.

    The goal of an excisional biopsy/lumpectomy after a core/fine needle biopsy shows LCIS is to help make sure there isn't something worse going on in the area.

    The goal of an excisional biopsy is NOT to remove all of the LCIS for several reasons.  It is not possible for a surgeon to remove all the LCIS without doing a mastectomy. The reason: LCIS usually does NOT show up in mammo or ultrasound, and it does not reliably show up in MRI.  The surgeon doesn't know what to excise.  So they would not be able to remove all the LCIS unless they biopsied every part of your breast, which would be a mastectomy.

    Its also not a goal to remove all the LCIS (for patients with LCIS and nothing worse).  In patients that have LCIS and nothing worse, and subsequently get breast cancer later, the breast cancer often occurs not at the site of LCIS, but in normal-appearing tissue.  The risk from LCIS is bilateral, so, unless other information becomes available, they usually recommend bilateral treatments (if any.)  LCIS and nothing worse confers an increased risk of breast cancer to BOTH breasts.

    LCIS is a weird disease.  They don't understand why.

    LCIS (and nothing worse) is different than DCIS, and is treated differently.

  • beacon800
    beacon800 Member Posts: 922
    edited August 2009

    Leaf and Lee,

    Your information is extremely helpful.  Lee, we sound like twins.  The surgeon drew a circle on my breast where she would cut.  Two inches long, one inch wide.  I am also small breasted, it is also my left, they are dense, I am 47.  

    So that two inches sounds like your 5 cm.  Very similar.

    How did they do your the wire localization?  MRI guided? Stereotactic?

    Question:  you have your dx, how long is is safe for you to wait for your masectomy?  I am not afraid to have masectomy, but want to make sure that it comes quickly before anything can "grow" more.  So, how long do you have to be safe?

    Thanks a million!

    Mary 

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    Well, it depends on your comfortable zone of risk.  You may be at somewhat higher risk in the year or so after your excisional biopsy for LCIS because it is possible they could have missed something more severe going on.

    While this thread gives you some idea how poorly we understand the risk of breast cancer, even for 'the average woman' who has never had breast cancer http://community.breastcancer.org/forum/47/topic/692321?page=1#idx_8

    Based on the findings of this study, 10 years after an LCIS diagnosis, about 7% of women will be diagnosed with invasive breast cancer. http://www.breastcancer.org/research_genetics_111005.html
    and in this paper about 1.2%/yr http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum 

    You can never be completely safe.  We don't know when we will be killed by a meteor.  We could have the sun not come up tomorrow morning, though that would be extremely unlikely, but possible.

    <2% per year, even if it is a rough estimate, is a fairly low risk in my book.  Most surgeons want you to really be comfortable with a decision for PBMs, because it is permanent, of course.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Mary--I sent you a PM.  My wire localization was very similar to my stereotactic core biopsy, sitting up instead of flat on stomach, alot of pressure but not painful. It was done about an hour before I went to the OR for my lumpectomy. I could see the wires (peeked under the gauze), but I couldn't feel them at all since I was so numb. As far as how long you can safely wait with LCIS to make a decision about PBMs---there is no set time limit-----it's been 6 years for me and I'm still not ready to go that route. I finished my 5 years of tamoxfen last fall, I continue with my high risk monitoring, and now I take Evista for further preventative measures. If I were ever to have something more serious found (DCIS or invasive bc), then I probably would go for it, but not now, but that's just me. We all have to choose the path that is right for our own situation. You will make the right decision for you.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    I had mammo-guided wire insertions (because I had 'suspicious calcifications'.)  I don't want to scare you, but I had a rotten time with the wire insertion.  However, you must take into consideration that I had PTSD at the time (and didn't know it) from multiple traumas and a dysfunctional family starting shortly after birth.

    I did a survey here after my excision to find out how people fared with regard to pain.  I asked people to grade their pain on a scale of 1-10, 10 being the worst pain imaginable. These were my survey results (in mid-2006).  (I think that most of the time the 'injectable anesthesia is the injection a local anesthetic into the breast, not an IV pain killer.  I was told after that they can't give injectable IV analgesic at my facility for wire insertions because they don't have an RN available to monitor you.  I don't know how it goes at other facilities.)

    Injectable anesthesia before wire insertion and pain score <=4/10: 19 people (50%)

    Injectable anesthesia before wire insertion and pain score >4/10: 7 (18%)

    No injectable anesthesia before wire insertion and pain score <=4/10: 3 (8%)

    No injectable anesthesia before wire insertion and pain score >4/10: 9 (24%).

    In my case, I knew if I would have told him I was in pain, I would have cried, and if I cried I would have moved.  (I was instructed to 'not move a muscle' throughout the wire insertion and check of the wire placement.  I don't know how long this lasted, but it felt like about 1.5 hours.)

    If I have to have another one, I will take some nonverbal instrument, such as bells, to ring in case I have pain.  I will tell the radiologist shortly before the procedure starts. That is my psychology.  Many people told me I should have just told him I was in pain.  But I couldn't do that without moving my chest. We all have different psychologies.  Differences need to be respected.

    So most people do OK with wire insertions.  No one should have a painful procedure, even if it happens once in a million times.  They should ask you if you are having pain.

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    Mary -- Before the lumpectomy, I had to go over to radiology/breast center that morning to get the two wires put in. They did a mammo, and then the radiologist used what he saw on the films to insert the wires. I was sitting in a chair -- they numbed it with novicaine first and then inserted the wires using a needle. I only felt pressure. Then they put a styrofoam cup over the wires and I went back over to out-patient surgery with my shorts on and a surgical gown on top (covering the cup/wires). It was the Madonna look!

    Mary, with the DCIS and IDC diagnosis (not just LCIS), my surgeon said I could take some time and research BMX and reconstruction options. He said a couple of months was fine. (Personally, I want to get it all done before the end of the year for insurance reasons). I will be scheduling my surgery next week ... and probably am looking at mid- to late-Sept.  I don't really want to wait much longer, because I have some fluid now in the cavity from the lumpectomy and it aches. Plus, I don't like the idea of wondering what else lurks in there, since he didn't get clear margins. He's assuming a bit more DCIS, but who knows if there might also be another tiny invasive spot.

    Hope this helps. Please keep me posted!

    Lee

  • taraleec
    taraleec Member Posts: 236
    edited August 2009

    beacon800 and LeeMcC : I've had alot of similar experiences/results as you two (and many others probably).  My area of LCIS was large too (5 cm) along with Radial Scar, Sclerosing Adenosis, Columnar Cell Change & Apocrine Metaplasia and Dr's have been surprised at the amount of LCIS WITHOUT something INVASIVE in addition.  For which I was RECOMMENDED by my ONCOLOGIST to have radiation, so I did.  My slides were re-read too & they also found Atypical Ductal Hyperplasia, Atypical Lobular Hyperplasia.  I've also had 2 separate lumps come about in my right breast and have had two lumpectomies in it, one at 3 o'clock which also came back with Columnar Cell change and Apocrine Metaplasia and one at 1 o'clock. I also have dense breasts (and now lots of Scar Tissue which makes them hard to 'read), and I'm Small Breasted not even a B so now after two lumps removed there's hardly a breast at all.  I've also been told the LCIS and/or something Invasive will occur in the right breast as well.  1 Dr. even said I'm playing Russian Roulette!  And that he doesn't even see 1 case of LCIS per Year.  So I have 3 Dr's recommending bi-lateral mastectomy.  (I've had one Grandmother with Uterine Cancer, one Grandfather die of Lung Cancer and one of Bone Cancer)  I've also had Severe Cervical Dysplasia for which I had a Leep and D&C (and 3 weeks ago had a Hysterectomy with a 'Complication' a CUT Bladder).  I'm pretty scared about Not having a mastectomy, but have many issues happening currently and struggle with the decision.  I wish everyone good health and wellness. 

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    taraleec -- You look young and healthy, despite those bad boobs an the recent surgery. Once you recover and get in a positive place, I'd say Go For It! Get the disease-filled worrisome ones off and get yourself a new set ... and then be set for the rest of your life without looking back!

    I'll be making my decision about what kind by Thursday. I had a really good consult today in Charleston about DIEP, and then I have a consult locally on Wed about implants. I'm leaning toward the DIEP, since it's my own tissue and will last a lifetime.

    Lee

  • taraleec
    taraleec Member Posts: 236
    edited August 2009

    LeeMcC :  Thank you.  I'm gonna be 40 in 5 days.  I have a 3 year old tho' that I'm so fearful of what will happen in the near future.    When I met with the Plastic surgeon discussing mastectomy, he also said I'd have to do the DIEP at least for the left side which was radiated.  And could do tissue expanders on the right side.  (But then I wonder how 'Similar' will they appear afterwards?  But they're not the same now anyhow after 5cm being taken out of the left and it's lopsided, and two 3 cm areas out of the right there's not much of a 'boob' there anyhow.)  I wish I could be as confident to make my decision.  Good luck to you. You will be in my prayers.

  • kdebartelo
    kdebartelo Member Posts: 11
    edited August 2009

    Hi Lee My name is kolette>  I was diagnosed with LCIS in March 2009 after a reduction . I had a BMX on July 28th 2009 and with no regrets.   Right now I have expanders in and  two remaining JP drains two were taken out today.  I will then get silicone implants at some point.  I wish you the best of luck with your decision on BMX and reconstruction. Thank the lord for this site it has got me through some very hard months. 

  • LeeMcC
    LeeMcC Member Posts: 152
    edited August 2009

    Hi Kolette  --- Did the BMX pathology report say there was anything there besides LCIS? Even though I'm confident in my decision to have bilateral and reconstruction, I'm so interested to see what actually is found (more LCIS? more cancer?). So glad to hear you are healing well and looking to move forward.  I've decided on DIEP, and I'm getting it scheduled tomorrow -- hopefully for mid-September.

    Lee

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