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Topic: Pleomorphic LCIS

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jan 23, 2009 08:37AM

KRB67 wrote:

Was recently (12/30) given diagnosis of rare type of LCIS, called pleomorphic LCIS.  Docs are searching for standard of care.  I have a second opinion scheduled 2/6 and am considering a third.  Has anyone else been given this diagnosis?  I have had a biopsy and lumpectomy, to remove calcifications.  Unclear on the next step of treatment, but the docs are starting to lean toward bilateral mastectomy.  I hope to find someone with this diagnosis.

KRB Dx 12/4/2008, , 5cm, Grade 3, 0/0 nodes, ER+/PR+
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Aug 28, 2009 04:16AM Minnesota wrote:

Hi Omaha Girl!

As I recall, you have your next appointment with Dr. King on Monday, so I want to be sure to try to butt in on it again! I did send her an e-mail offering up my body for any study!

I do have a follow-up question, if you have a chance, and that is regarding the risk for contralateral cancer. I believe she quoted you a stat for risk, given IDS. My question is about risk, given PLCIS, and given that there are no studies, and that it seems to be a more aggressive cancer.

Also, I noticed that she gave a talk at the Cornell/MSKCC oncology seminar last November on prophylactic mastectomy. I'm wondering if the content of her talk is available anywhere for us to read, since that is the course some of us are considering.

Thanks again Linda! I sure hope you appointment goes well. Is your biopsy this Monday, or will that be at another date?

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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Aug 28, 2009 06:56AM nanannlan wrote:

omaha girl

i want to thank you for the two articles you mentioned on living better with breast cancer.  i found them most informative.  this is the first place anyone has suggested a possible link between plcis and a particular breast cancer.  good luck with dr. king.

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Aug 28, 2009 07:01AM Gitane wrote:

This is a copy of the Practice Guidelines in Oncology for 2009. misc.medscape.com/images/586/4...  

It addresses some of the issues that have come up in this thread.  I'll quote some of it, but there is more in the guidelines, so you may want to look at it yourselves.  The levels of evidence and bibliographies are helpful, too.

In terms of having the other breast removed it says this.  "The risk of an invasive breast cancer after a diagnosis of LCIS is equal in both breasts.  (approximately 21% over 15 years)  If mastectomy is considered as a risk reduction strategy,  then a bilateral procedure is required to optimally minimize risk."

In terms of PLCIS it says this.  "There is evidence to support the existence of histologically aggressive variants of LCIS (eg, "pleomorphic" LCIS) which have a greater potential than classic LCIS to develop into invasive lobular carcinoma.  However,  outcome data regarding treatment of patients with pleomorphic LCIS are lacking, due, in part, to a paucity of histologic categorization of variants of LCIS.  Therefore,  recommendations on the treatment of pleomorphic LCIS as a distinct entity of LCIS have not been made by the Panel."  (the boldface typing is my addition)

In terms of the use of tamoxifen to lower risk it says this.  "Women with LCIS, whether they undergo observation only or are treated with bilateral mastectomy, have an excellent prognosis.  Recent data from the NSABP Breast Cancer PRevention Trial show that tamoxifen given for 5 years is associated with an approximately 46% reduction (hazard ratio 0.54; 95% CI 0.27-1.02) in the risk of developing invasive breast cancer among women with LCIS." 

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Aug 28, 2009 11:23AM OG56 wrote:

Thanks Minnesota, and I will ask that question too, I would like to give her my boobs but she doesn't want them....rejection (lol) 

I will be having the bilateral excisional biopsies on Friday the 4th I am so looking forward to more torture.

Nana I am glad you found the articles educational.

Gitane, is your name French? it is so pretty. Thanks for the additional information.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Aug 28, 2009 11:30AM awb wrote:

Linda---if you get a chance to ask Dr. King, I  would be very interested in her thoughts on close monitoring and tamoxifen when LCIS is in combination with close family history of bc (mother). Thanks----Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 28, 2009 11:34AM OG56 wrote:

Anne I have it in my note book to ask, because she did not answer that last time.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Aug 31, 2009 01:28PM OG56 wrote:

Okay I left the house at 7 a.m. and arrived home at 7:30 p.m. I am tired!  Anne I still did not get her to answer your ? because she was 2 hours behind and I only got to hear the pre-op shpiel, but I will get your ? answered, I am sorry.

Interesting that Cornell saw pleomorphic but Sloan did not..hmmm I am confused and today I am scared all over again, I don't want cancer again damnit so it had better be B9 in both breasts or I am going to kick someone's butt, I just don't know who's.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Aug 31, 2009 02:29PM nash wrote:

LOL, Linda, I agree--it'd better be benign, danm it! Thanks for checking in--get some rest!

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/18/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/14/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Chest wall Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Zoladex (goserelin)
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Aug 31, 2009 05:02PM Minnesota wrote:

Linda,

Glad you got yourself thru yet another day of this crap! Rest, rest. Get back to us only if, and after, you feel up to it. We're all sending positive vibes your way. Hope you get good news!

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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Sep 1, 2009 04:56AM , edited Sep 1, 2009 04:58AM by OG56

Thanks I always appreciate you being in my corner when I have to come out "fighting like a girl".

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 5, 2009 02:10PM , edited Nov 7, 2009 03:09PM by OG56

Well yesterday I had my bilateral biopsy's. I feel like I basically had 2 more lumpectomy's and I really hurt today and thank god BS isn't stingy with pain meds. Funny thing happened in the waiting room though, a woman waiting for surgery (lumpectomy) came over sat by me and we began to talk and due to last years experience I was able to give her words of encouragement and I told her to look us up here when she felt better. I won't know anything for another week, but thanks for all the support over the last few months.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 5, 2009 09:45PM , edited Sep 6, 2009 07:29AM by leaf

I am so glad your BS isn't stingy with pain meds.  The anxiety is quite enough to deal with I'm sure.

Thinking of you as you wait.  Best wishes, of course, for Boringly Benign.  Let us know how it goes, OK?

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/23/2006 Lumpectomy: Left Hormonal Therapy 7/14/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 6, 2009 05:45PM Minnesota wrote:

So glad you have this behind you now!

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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Sep 7, 2009 01:03PM , edited Sep 7, 2009 01:04PM by OG56

I was just re-reading this thread and I remembered something from talking with my BS.

My husband asked how long I had, had LCIS and she said probably since my breasts first developed. So, it took from then (about 11 yrs old) till I was 54 for BC to show up. If it takes that long again I won't have to worry Smile Hope everyone had fun this weekend!

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 14, 2009 02:00PM , edited Sep 17, 2009 07:31AM by OG56

This Post was deleted by OG56.
(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 14, 2009 04:28PM nanannlan wrote:

omahagirl.  OMG this is why we didn't go to medical school.  i will sift through my pathology reports to see where we may overlap.  do you feel comfortable with your breast surgeon and your oncologist?  get a good night's sleep - we are with you.  nanannlan

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Sep 14, 2009 04:43PM Minnesota wrote:

Omaha Girl,

Sorry your report is so full of pathobabble! (Did I just coin a new term?!) I can't help you at all because you know I'm worried about having all the stuff in the other breast than the one they found the first bad stuff in, and that's even after my recent digital mammo was declared clear... I just feel like if they would do some excisions, they'd find more of that crap. And my new onc does not even recommend breast MRI's in my situation, just yearly mammo's, eventho I know some of the gals in my position out there do get 6 mo follow-up and with MRI's. I just don't get any of this!

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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Sep 14, 2009 07:28PM cleomoon wrote:

Linda,

So glad all the junk is benign and hope further path shows only benign changes too. I found this info helpful in helping explain my benign stuff in my breasts.

http://www.health.am/cr/more/benign-breast-diseases-classification-diagnosis/P2/

(((Hugs)))

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Sep 15, 2009 03:35AM OG56 wrote:

Thanks everyone, I know that is some serious pathobabble LOL. Eve this is all to worrisome and I guess our surgeons think the same the + thing might be that this stuff has been there forever and maybe with luck on our side it won't develop into anything ever again. I don't have an oncologist, but I am about to be given one as soon as this is settled.  Thanks Cleomoon for the site I will read and see if I can further educate myself. Do I wish I didn't even know all this junk is in there??? maybe.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 15, 2009 05:22AM nanannlan wrote:

do you want some suggestions for an oncologist in new york city?  whom does your breast surgeon suggest?  i know you're in the middle of all this undefinable crap right now, but try to destress - it is benign.  all the best.  nanannlan

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Sep 15, 2009 02:50PM OG56 wrote:

Thanks nanannlan, my dr. is going to hook me up with an oncologist at Sloan.  I am feeling better today and just being quiet and thankfull that for now all is well.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Nov 7, 2009 07:06AM formykids wrote:

Hi

Not sure if there is even many who have this diagnosis, but I thought I would give this a try. I have recently been diagnosed with PLCIS as a result of MRI guided biopsy on Oct 16. My treatment options have been lumpectomy to remove PLCIS requiring clean margins, otherwise try again and then do radiation OR mastectomy. My question is, the area of concern was first seen on a MRI in July with measurements then of 5 x 2 x 1cm.The next MRI I had was Sept 28 which had it measured at 5.4 x 3.9 x .01cm. Now the pathology report from MRI and biopsy that was done on Oct 16 has the measurement at 5.4 x 3.9 x 2.9cm.  I am wondering if this would be consistent with what is thought of the nature of PLCIS that because it is so aggressive, it would be growing this quickly? 

Has anyone had this large of an amount removed and then went on to have radiation? I have read and understand PLCIS is to be treated like high grade DCIS.  It actually even indicates on the pathology report suspicious for DCIS. But I have also read where you don't treat PLCIS with radiation, just like you would not for LCIS. I am scheduled for lumpectomy on Friday Nov 13, but almost feel like I may not end up with a choice in this and end up having to have mastectomies. How likely to get clear margins on something this large on a small breast to begin with?

Thanks Cathy

"Serenity", "Courage", "Wisdom" Nov 2009 Pleomorphic Invasive Lobular Carcinoma Jan 2010 BMX May 11,2010 DIEP Dx 11/30/2009, ILC, <1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Nov 11, 2009 07:20PM Minnesota wrote:

formykids,

I don't think they really know that PLCIS would necessarily be fast growing. I think the aggressiveness description is more because of what they know about PLC and their theorizing that the PLCIS might lead to PLC, which is more aggressive. I don't think there have been enough studies of this for them to have drawn any conclusions about PLCIS itself being fast growing or not. Also, I don't know how accurately they can measure your area of PLCIS just from the biopsy and MRI's. The different numbers you quote could be due to measurement error rather than that the actual area has changed over that amount of time. I know that the estimated size of my DCIS/LCIS/PLCIS, based on the needle biopsy and then the breast MRI, was different than what it ended up being once they got in there. My cancer ended up being about 4.5 centimeters. I have small breasts, and the lumpectomy was not adequate to get clear margins, so I ended up needing a mastectomy. I had an excellent delayed unilateral breast reconstruction in New Orleans and really do not feel as tho I had a mastectomy at all. I am presently considering prophylactic surgery on the other side - no one told me at the time of my lumpectomy and mastectomy 3 years ago that my cancer risk in the other breast was elevated due to the LCIS, and no one knows yet if PLCIS could similarly indicate increased risk in the other breast. Good luck with your surgery on Friday. The important thing is that, at this point, it seems as tho your cancer is not invasive, which is very good. Also, know that if mastectomy becomes necessary, you have many reconstruction options, just be sure to do plenty of research about those options and about the surgeons offering them. There's a great group of ladies posting on the reconstruction portion of bc.org. Hope this helps!

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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Nov 12, 2009 09:44AM nanannlan wrote:

hello, formykids

best of luck friday.  i'm not quite sure how the doctors know the size of your plcis as it cannot be "seen."  we are all with you - think positive.

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Nov 12, 2009 09:52AM covertanjou wrote:

Cathy, I am thinking of you.  I hope everything goes well tomorrow.

“I distrust those people who know so well what God wants them to do because I notice it always coincides with their own desires.” - Susan B. Anthony Dx LCIS, Stage 0
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Nov 12, 2009 02:34PM OG56 wrote:

Cathy, just want to wish you well and I will keep you in my thoughts,  don't worry too much about the measurments from MRI's mine kept changing too.

I had a lot of tissue removed, I have had 3 lumpectomies now and these last two my "good" breast had the PLCIS and the surgeon was able to get clean margins tissue removed was 5.5x5.3x1.4 no invasive components even though it too was highly suspicious for DCIS, but there wasn't. I did not receive radiation for the PLCIS.

Just want you to feel confident going into this and know that even though I had 2 lumpectomies in one day, I was not that uncomfortable, had surgery on Friday and went back to work on Tuesday ( I think that might have been slightly ambitious) but I did not have any sick time left.

Gentle Hugs

Linda K.

(5-09 Bilateral Pleomorphic LCIS) Dx 5/30/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Nov 12, 2009 03:28PM macksix6 wrote:

Cathy good luck tomorrow. Hope everything works out for you.

PLCIS - Bilateral Stacked Diep 9/24/09
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Nov 15, 2009 03:35AM formykids wrote:

Thanks to everyone for your well wishes, it really does help.

I am back from my 5th trip to Toronto since Sept. 21. It is so hard to be away from my kids this much, not to mention how I hate having to impose on people to help with childcare arrangements. But we all have had to to what we have to do, right.

I had the surgery on Friday, which was a really long day. I was told to be at hospital at 7:30am, where I was to have a mammogram wire localization. This didn't make sense to me since they were only able to see this on MRI. As it was, once I got there I was told they would be doing a MRI guided wire localization, but not until 9:30 am with surgey at 1:45. I was in and out of the MRI for approx. 2 hours as they tried to properly place the wire.  It was very, very difficult trying to lay perfectly still for that lenght of time, but they finally did get it.

I ended up getting into surgery a little early as they were ahead of schedule, and apparently it took approx. 1 1/2 hours. Of course I don't remember any of it, but this is what I was told. They gave me a percocette as soon as I woke up, but I haven't taken anything since then.  It is a little sore, but bearable.  I don't really like the way I feel on the pain meds.  Now I just wish there was some way to speed up the waiting for the results.  The pain I can handle, the waiting is more difficult. They told me it could be up to 3 weeks to get the results, which seems absolutely ridiculous to me, I know they can be done as quickly as a few days.  They obvisously have no idea, how excructiatingly painfull the waiting is.  Also they said I will have to come back to get the results, they will not give them over the phone. So it looks as though I will be making yet another trip in the very near future.

Thanks again for all the support, I don't know what I would do without the support from here.

Take Care

Cathy

"Serenity", "Courage", "Wisdom" Nov 2009 Pleomorphic Invasive Lobular Carcinoma Jan 2010 BMX May 11,2010 DIEP Dx 11/30/2009, ILC, <1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Nov 15, 2009 04:22AM macksix6 wrote:

Cathy

Sorry you had such a long day. They do the wire localization to get as close to the area from the original biopsy. I know the wait can be difficult so we are here for you. Is there any way possible that you can have your results sent to your primary doctor at home to eliminate yet another trip. Again I am praying that things work out for you.

PLCIS - Bilateral Stacked Diep 9/24/09
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Nov 15, 2009 05:46AM Minnesota wrote:

Cathy,

I'm so glad you've gotten this surgery behind you. I second what macksix6 said - if you need to do any venting, you can do so here. We've all been there, done that! 

(Pleomorphic LCIS) Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-

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