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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 11:37AM

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.

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Jan 23, 2009 02:37PM nash wrote:

I have PLCIS and PILC, so my situation is a little different than yours in that I had invasive disease. The PILC was removed via lumpectomy, and after sugery it was determined that I had extensive PLCIS left in the breast. At first my surgeon and the tumor board at the university hospital  where I had sugery recommended bilat mast. This recommendation was due in large part to the fact that my surgeon trained at MD Anderson, and their standard of care for PLCIS is bilat mast. They are one of the few institutions that I know of to come out with a clear path of treatment for PLCIS.

The bilat mast was presented to me as optional, but recommended. My case ended up going to tumor board four times, though, and in the end they decided I was more at risk for chest wall recurrence of the PILC and distant mets than a new primary due to the PLCIS, and that if I wanted to stick with the lumpectomy, that was fine.

My first oncologist had also recommended bilat mast, but she had a personal bias in that she was (in her words) terrified of getting breast cancer, and so that's what she would do. I recently switched my followup care to a different oncologist, who dismissed the PLCIS as a non-issue.

So, as you can see and as you've already figured out in your own situation, there is no consensus of how to handle PLCIS. If you google it, you also get conflicting research studies on how best to treat it.

I suspect that my PILC arose directly from my PLCIS, and if I do end up with a new primary or a local recurrence, I will go with a bilat mast. Right now I'm personally OK with annual MRIs and mammos to monitor the situation. But that's just me--other women would probably not be comfortable with that decision.

I honestly don't know what I'd do in your shoes. You don't have invasive disease. It may or may not progress into invasive disease. Bilat mast/reconstruction is major surgery that can't be reversed and doesn't give you a 100% guarantee that you won't get bc (my surgeon told me I'd have a 95% reduction in local recurrence with bilat mast).  But if the surgery would ease your mind, then it's the right choice for you.

Basically you're just going to have to go with your gut instinct on what is best for you, b/c there is really no standard of care for PLCIS. Each doc I've run into has had his/her own opinion on what to do. It sucks to be stuck in these grey areas--believe me, I know.

You said you had a lumpectomy--I assume they did not get clean margins around the PLCIS?

Hopefully someone else will come along and weigh in on this. You may want to also post over on the ILC board, b/c some of the other PILC girls may also have PLCIS.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Jan 23, 2009 03:56PM PSK07 wrote:

The whole LCIS thing is very confusing. Most doctors won't re-excise for clear margins because there may well not be clear margins with LCIS, pleomorphic or not.  Since it's an incidental finding and it doesn't show up on a mammogram (unless its in an existing lump or lesion), without removing the entire breast they won't know if they got it all or not. Even then, it is usually found in the other breast as well. 

Pleomorphic LCIS might mean that it is more likely to result in an invasive cancer in the future, but they don't really know. 

Bi-lat mastectomy is one treatment as is watching (MRI and mammograms) and taking a drug like Tamoxifen for 5 years.  I have 'ordinary' LCIS and ALH and will be watching & taking Tamoxifen.

Hope that the docs are able to give you some info on your risk levels.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jan 23, 2009 06:46PM awb wrote:

KRB67-----as Pam said, everything with LCIS is confusing. The literature says that pleomorphic LCIS is "slightly" more serious than "classic" LCIS, but they really don't know the actual risk level with either one. (My oncologist quoted me a lifetime risk of  37%, but he came up with that #  plugging ADH into the Gail model, which apparently doesn't work with LCIS--he admitted he didn't really know and was just estimating.) LCIS has double the risk of ADH which is around 20 to 25%; so LCIS is likely in the 40 to 50% range. Since LCIS is generally found to be multifocal, multicentric and bilateral (spread throughout the breast and often both breasts), there is no need to try and get clear margins. In theory, to make sure you had "removed it all", you would have to have bilateral mastectomies. But since it is non-invasive, you do not need to "remove it all". Having a small amount of LCIS or a large amount does not change your overall risk level.   I was diagnosed 5 years ago and I am closely monitored with digital mammos alternating every 6 months with MRI, US as needed, and breast exams. I just finished up my full 5 years of tamoxifen 3 months ago, fotunately with relatively minot SEs, mainly hot flashes. I think the "standard of care" for PLCIS is pretty much the same as for classic LCIS--  the basic 3 options: 1) close monitoring  2) close monitoring and tamoxifen or raloxifene  3) BPMs    All my docs felt BPMs too drastic for my situation, even with family history of ILC (my mom). Feel free to PM me if you'd like.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jan 24, 2009 12:37AM, edited Jan 24, 2009 12:43AM by leaf

The bc.org site now says this about LCIS (I assume the classical kind, but I don't know. Likely there are lots of unknowns, as nash says):

How greatly does having LCIS increase breast cancer risk? One estimate is that the lifetime risk of developing an invasive breast cancer is 30-40% for women with LCIS, versus a lifetime risk of 12.5% for the average woman. Another estimate suggests that an LCIS diagnosis increases breast cancer risk to 21% over the next 15 years.

If a woman with LCIS develops an invasive breast cancer, it doesn’t typically happen within a few years. Rather, it is more likely to happen over the long-term — in 10, 15, or 20 years or even beyond that. A woman with LCIS is considered to be at elevated risk for developing breast cancer for the rest of her life.

http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp

And, interestingly,  in this study of YOUNG women (diagnosed before the age of 50) with benign breast conditions, this poster in the last San Antonio conference  found the highest risk with benign breast conditions was with atypical hyperplasia and a WEAK family history.  I don't know if this holds true with women diagnosed after the age of 50 (i.e. me.)

The combination of benign breast disease histology and family history resulted in a graded breast cancer risk for patients with nonproliferative disease that ranged from 1.01 to 1.90. In contrast, the highest cancer risk for patients with proliferative disease without atypia and for atypical hyperplasia was observed in patients with a weak family history (3.27 and 11.2, respectively). www.breastcancer.org/risk/new_... (emphasis mine).

Involution status also made a difference - I wonder if we can ask our radiologists if we have that?

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 24, 2009 04:17AM sunfishlee wrote:

I  have been diagnosed with LCIS in 2006 (core), ALH in 2007 (lumpectomy) and ALH/ADH (lumpectomy) in 2008 in my left breast.  I have terribly fibrocysytic breasts. They are full of lumps.I have a weak family history ( 2 paternal aunts). I am now 49. I was told in 2006 by a risk specialist that I had a 20 % risk. This Fall , a new risk team  told me I have a 50 % risk.  I am amazed at the different information we are receiving. It is clear, the medical community is unsure of the risk. It is not their fault, because the research to help them make a decision is not available. They are struggling like we are. I was offered to do watchful waiting with MRI/mammos or PBM.  We are the ones who have to chose. For me, I know four women who have died of BC. I know of  many who have it and are going through the treatments. I have decided  to do the PBM, for me and my family. It has been one of the most difficult decisions I have ever made, but I cannot live with this risk. Good Luck to you all.

Lee. 

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Jan 24, 2009 05:23AM leaf wrote:

Hi Lee.  Yes, there are a lot of unknowns.  I have LCIS, ALH, and a weak family history.  My onc gave me 30%, the genetics counselor said 30-40% (I am at low risk for BRCA.) A breast cancer risk calculator gave my risk as 85%, but it has *NOT* been compared to populations.  That's an IMPORTANT caveat as there are so few known LCIS women. http://www.halls.md/breast/gailmods.htm

I got a 2nd opinion at a Major University 7-07, and they said 'its somewhere between 10 and 60%, but probably closer to 10%. '  That's even less than my ALH risk, as predicted by the Gail model, and lower than the risk of the average woman!  You can guess how much I trust THOSE people.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 24, 2009 07:11AM, edited Jan 24, 2009 07:11AM by karen9516

I had a biopsy come back as you all probably have heard me say with ALH from one pathologist and LCIS from another pathologist. I think there are only slight differences and PLCIS is probably a different form of those. I agree that you can not get clean margins without a mastectomy and the % chance of invasive cancer is different everywhere you read. I chose a BPM because I didn't want to wait until it was cancer and then be at the mercy of oncologists. I was an oncology nurse at one time and that was enough for me. Plus my mother in law who died of breast cancer at the age of 50, had a tumor show up 3 months after a mammogram and ultrasound. Also I have been misdiagnosed already by radiologists. I know too much after being a nurse for 18 years to trust doctors completely. I was willing to take the chance of surgical complications instead of metastatic breast cancer complications. You need to consider all all of the things the girls on here say and research, research, research.

karen

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Jan 24, 2009 08:09AM nash wrote:

I have a question, then--if it's not possible to get clean margins with lumpectomy for LCIS (which makes sense, since it tends to be so dispersed), what is the pupose of the lumpectomy then? Is it to get a better biopsy sample to check for invasive disease? And if that's the case, how does the surgeon know s/he has the right section to be checking?

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Jan 24, 2009 08:24AM awb wrote:

 lumpectomy (or wide excisional biopsy which it is also called) for LCIS is to make sure nothing else more serious (DCIS or invasive bc) is "lurking" in there along with the LCIS. Hopefully, the suspicious area has been marked by a clip (put in during core biopsy) to locate the area to be excised by the surgeon. There's no real way to determine if there are other areas involved (short of having bilateral masts) at this point because LCIS usually isn't seen (on mammo/US/MRI0 or even felt. Those of us with LCIS are "lucky" in that we don't need chemo or rads, but we have to deal with a great deal of uncertainty with this diagnosis, that's for sure.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jan 24, 2009 11:16AM PSK07 wrote:

 nash - When I was dx with DCIS in 2007, they did an MRI before surgery to make sure nothing else was lurking. A 'thing' was found in my left breast & because of the enhancement, an ultrasound-guided biopsy was performed. For whatever reason - probably sampling error (it was only mm, and they took a couple of samples), it was found to be benign & I went on to have a lumpectomy and radiation on my right breast.

FF to 2008 - I had my MRI and the lesion from last year had grown and there was further enhancement. This time, they found LCIS in the samples.  Since there was a lesion to remove, they did the lumpectomy.  If there isn't a lesion or nodule to remove, they may not have to do any sort of surgery. 

Unless they're looking for/at something else, LCIS and ALH won't be found or dx. That's why they really don't know how much of it goes on to become invasive. Kind of the same with DCIS - if it's found, they'll do something, but they've done autopsies and found DCIS in women where it had never been diagnosed and those women died of something else.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jan 24, 2009 11:18AM, edited Jan 24, 2009 11:20AM by leaf

I agree with Anne.  In about 15-30% of the time (different studies differ), they find something worse (DCIS or invasive) when they do an excision for LCIS.  (In my case they called my excision 'verifying the diagnosis of LCIS'.)

In addition, LCIS is usually multifocal and often bilateral.  (They know this from the routine use of prophylactic mastectomies for LCIS  they did before the early 1990s or so.) 

But the multifocality and bilaterality don't really matter much clinically.  Even if you have one small spot of LCIS in one breast, and (as far as we know) all other spots in both breasts are normal, this one spot of LCIS puts BOTH breasts at risk for breast cancer.   They now think that in some SMALL number of cases, LCIS MAY be a nonobligate precursor for breast cancer. And apparently, unlike invasive breast cancer, the breast cancer risk for LCIS women does NOT seem to go down with time.

Interestingly, when they do excisions for finding LCIS (and nothing worse) on a core biopsy, they often find LCIS not AT the abnormal site, but nearby.  In other words, they often don't find LCIS right AT the microcalcification, or lump, or whatever triggered the biopsy, but nearby.

LCIS is a weird disease.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 24, 2009 12:54PM nash wrote:

Thanks for the info, girls. Smile

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Jan 24, 2009 01:36PM KRB67 wrote:

Thanks so much for all the info.  The pleomorphic LCIS (PLCIS) apparently does increase risk, but it has not been written about- except for an article the radiologist pulled (which you need to be a doc to get).  The docs at my hospital said that the pathologists are using the diagnosis much more recently (due to use of digital mammos?  Are we seeing something earlier than they were familiar with?).  My surgeon has suggested that the appropriate standard of care is the same as DCIS.  But, as you all point out, the LCIS cells are dispersed throughout, and so a lumpectomy doesn't really make sense.  I am going to a University hospital in two weeks and will report on their standard of care, but if anyone else can weigh in on the pleomorphic stuff, it is much appreciated!!

KRB

Dx 12/4/2008, 5cm, Grade 3, 0/0 nodes, ER+/PR+
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Jan 25, 2009 04:04AM, edited Jan 25, 2009 04:19AM by leaf

I don't know about digital mammos.  They've been using digital mammos at my place since my diagnosis 1-06.  Maybe they are referring to the 'DCIS' aspects of PLCIS with more microcalcifications??? (My initial core biopsy was triggered by 'suspicious microcalcifications' found on mammo.)

Here are some abstracts from Pubmed about PLCIS, but they 'only' talk about diagnosis and molecular characteristics.  Unfortunately they don't talk about the natural history of the disease, probably because they don't know about it.  

http://www.ncbi.nlm.nih.gov/pubmed/12379750

This Nov 2008 abstract opines PLCIS has immunological staining and apparent growth characteristics that are similar to high grade DCIS or invasive.

"Residual PLCIS was found on excisional biopsies in 83% (10/12) cases. Invasive lobular carcinoma was found in 25% (3/12) cases. The lobular nature of all cases was confirmed by negative E-cadherin and cytoplasmic-dominant staining with P120 catenin. PLCIS was positive for estrogen receptor in 92% (11/12); progesterone receptor in 50% (6/12), and Her2/neu was positive in 25% (3/12). A moderate to high proliferation activity was observed with MIB (Ki-67) staining in 92% (11/12) cases. We conclude that PLCIS has a lobular immunostaining pattern for P120 catenin and E-cadherin indicating disruption of the E-cadherin/P120 catenin complex. This entity has aggressive parameters similar to high-grade DCIS including grade 3 nuclei, high Ki-67 (MIB-1) index, and HER2/neu positivity." www.ncbi.nlm.nih.gov/pubmed/18...

If I was in your shoes, I'd make sure my sample had been tested for HER2.  (My LCIS was not, but I don't have PLCIS.)  I think its fairly routine to test for ER and PR.  I think (but am not sure) they can test after reading, but if it hasn't been done, then you may want to  ask if it can be tested.

I don't know what I'd do in your shoes, but you MAY want to take a more aggressive approach than the 'watchful waiting only', particularly IF you are HER2+.  Watchful waiting may be the most common choice of women with plain, ordinary LCIS. (Not many of them post here, but this forum is probably not representative.) 

Please do report on the standard of care at your University.  I know some LCIS women have been very pleased with their care at places like Duke University.  I had a very bad experience at my local university- I knew more about LCIS than the nurse practioner that saw me, and the breast surgeon gave me a risk of breast cancer of "10-60% but probably closer to 10%", then they 'can't locate the consult of this visit.'   (I'm just telling you this so you can be prepared for a range of experiences.)

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 26, 2009 01:21PM, edited Jan 26, 2009 01:21PM by karen9516

Leaf-How can you do ER/PR testing on LCIS when it isn't cancer?

karen

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Jan 26, 2009 08:33PM Moogiemt wrote:

karen9516

After they did the excisional biopsy on me to see if anything other than LCIS was lurking about, they did an  ER/PR test on the tissue sample. Mine was ER+, but PR-. On the core biopsy they said my LCIS was florid...with calcs and necrosis-I think that's similar to PLCIS, (that's why they wanted to go in to see if there was anything more) but after the excisional biopsy, they said nothing found but LCIS. Sounds like they got all of the calcs and necrosis with the core biopsy? My onc didn't recommend doing nothing, so I'll probably start on Evista in a month or so and see where it goes from there. Does that help any?

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Jan 27, 2009 09:28AM, edited Jan 27, 2009 09:30AM by karen9516

I think that PLCIS is more like an infitrating cancer than regular LCIS http://www.nature.com/modpathol/journal/v15/n10/full/3880650a.html.

karen

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Feb 3, 2009 10:45PM ladyjayne wrote:

 I have just been diagnosed with Pleomorphic LCIS and am feeling very overwelmed as my doctor is also thinking along the lines of bilateral mastectomy. I am 45 and have no family history of bc. 2 weeks ago I was having a follow up mammogram and have since had a biopsy and last week I had a wire inserted with an ultrasound and then the doctor removed the tissue and took samples from surrounding areas and they found this to be pleomorhic lcis. I live on the gold coast in Australia and we are relocating to live in Northfield new jersey in March (5 - 6 weeks or so), my doc is going to talk to others as he said it is a rare type and they don't have alot of research available and then I have to return to him on Monday for another appt. What is freaking me out is he was talking about doing it before I go to US?? Is it that urgent?? He mentioned other things like pills and MRI's and monitoring. I feel I need time to adjust and the next month is all too soon. I would welcome any thoughts anyone has and I would love to hear from KRB67 as she seems to be in a very similar situation to me. Thanks

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Feb 4, 2009 11:27AM leaf wrote:

The ER and PR tests are immunological tests.  I think this is the usual scenario for estrogen receptors:  they take estrogen, and attach a 'tag' to it  - this may be a stain or something that lights up under certain lights, etc.  Then they put drops of this stuff onto your sample to see if it stains. 

You can do this testing on any tissue, normal or cancerous.  I'm sure some normal cells have receptors to estrogen or progesterone - that's probably a major way that estrogen and/or progesterone work initially.   And other tissues- including both benign and cancerous tissues - don't.

I think they generally think that PLCIS is more aggressive than LCIS, but I'm sure there's very little hard data what treatments are best.  The paper you cited is a descriptive paper, but they still know very little about the best treatment.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Feb 4, 2009 11:47AM KRB67 wrote:

Hi ladyjayne,

Yes!  It sounds like we have very similar situations!  I am 41, with three children.  My surgeon presented my case (along with my oncologist and radiologist) at a cancer forum in the hospital last month, and they unanimously recommended a bilateral mastectomy.  My surgeon has had many years of experience with breast cancer, and is highly recommended.  She believes that PLCIS will become ILC.  My surgeon very kindly called the situation a "ticking time bomb".  It seems like they are seeing more PLCIS, but it is generally combined with ILC, or another invasive breast cancer.  With digital mammography, my understanding is that they are catching it earlier, before it becomes the ILC.  However, there is very little written or researched.  My oncologist said that they would work with me if I choose to watch and wait, and that tamoxifen might help in my situation because my cancer is ER+/PR+.  She also said, that I have time to research and come to my decision, so please do not let you doctor force you to make a quick decision!  I do have a consult with a plastic surgeon scheduled, but as my cancer is not considered "active" (I think that means invasive or growing) I have not scheduled surgery.  My lumpectomy/excisional biopsy had three margins that were not clean, but yet the surgeon feels that she removed the "epicenter" of the PLCIS.  So, I feel like the worst was removed, but that I need to choose some form of treatment.

I have been reading alot, and have come to terms with the mastectomy recommendation.  I do not want to take tamoxifen, or have to go through lots of MRIs, mammos, biopsies, every few months.  However, to help in the search for more information, I am having a second opinion Friday at University of Pennsylvania in Philadelphia and will report on that.   Also, I am hopeful (did not have nodes tested at lumpectomy) that I will not need radiation. 

 My husband has described my situation as standing on the train tracks; we know the train is coming, we just don't know where it is.  It is a helpless feeling, having something "rare" with no standard of care.  I don't know whether your doc would like to speak with my surgeon.  (I need to figure out how to use the Private Message center, and I could give you the phone number or e-mail address).  Please keep in touch, I will report over the weekend on the second opinion.

KRB

KRB

Dx 12/4/2008, 5cm, Grade 3, 0/0 nodes, ER+/PR+
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Feb 4, 2009 11:57AM leaf wrote:

To send someone a PM, click on their name (when its in blue), for example where is appears on the left side of this column.  You will be transferred to a screen where are places to put the title and body of your message.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Feb 8, 2009 11:52AM KRB67 wrote:

Had my second opinion, and it made the issues clear as mud.  The oncologist at UPenn said that pleomorphic is only an adjective, a descriptor of the cell shape, and not an indication of future agressiveness.  This seems to contradict my current doctors, and a 2008 article about pleomorphic LCIS from Up to Date, which my radiologist found.  That article states that pleomorphic LCIS should be treated like DCIS.  In my second opinion, the doc recommended trying a second lumpectomy followed by radiation and perhaps tamoxifen if they can get clean margins.  However, according to my lumpectomy, the affected cells are spread out throughout (typical of LCIS I think) my breast, and my surgeon tried to get clean margins--going back several times, and doesn't believe that they can. 

Additionally, the pathologist in the second opinion identified DCIS in my initial biopsy, so that changes my situation.  The ultimate conclusion of my second opinion was that I will likely need a mastectomy.  The bigger question (for me) is whether to have a bilateral.  I feel a need to understand this, but am beginning to realize that this is fuzzy science, and for many of us, there are no direct answers.  Ladyjayne, I am interested to hear what your doc tells you on Monday.  Good luck.

KRB

Dx 12/4/2008, 5cm, Grade 3, 0/0 nodes, ER+/PR+
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Feb 8, 2009 01:02PM ladyjayne wrote:

I had a long chat to a friend who had a bilateral 3 years ago and she has told me all about it in her words and it has got me around to the way of thinking I will have it here before I leave as I don't want to be worrying and wondering if that time bomb is going to go off!  Also having to go find all new docs can be very stressfu, especially when I am not familiar with where I am going to be and I have a support network here not there!l, My surgeon is the same as she used and he is well known here for his great work.

How would they miss DCIS in first opinion? I bet everything is clear as mud! Keep positive and I will let you know what my doc says after my appt this arvo.

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Feb 8, 2009 06:57PM PSK07 wrote:

KRB and Ladyjayne

One of the things about LCIS is that there is often a very fine line between it and DCIS. From what I've read, there are enough similiarities that it isn't unusual for a 2nd opinion to come back with DCIS and LCIS or DCIS instead of LCIS.

If it is just LCIS, then rads probably won't help and depending on how extensive it is, they might never get clear margins.  If they happen to pick the right spot, they could get good margins, but that doesn't mean that there isn't LCIS elsewhere in the breast.

I've started the tamoxifen & I'll have my next screening towards the end of March. I'm just hoping to avoid anything this August (with the 6 month screening schedule, October may end up being the new crapola month). It may well get to the point of bilat mx, but I'm hoping and praying it doesn't get there for some time to come.

It can seem like the light at the end of the tunnel is the train coming straight for you.  Good luck with docs and opinions and decision making. It's tough out there.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Feb 10, 2009 02:19PM ladyjayne wrote:

I had my appt at docs on monday arvo and he wasn't as urgent about getting my bilat done but after consultations with other specialists they all seem to agree that I should have one but I can go to US and find a doc and have MRI and look into my options over there. If we watch it and screen it then maybe I can wait a year until our health insurance in US would cover it. I have been trying to research health insurance and it seems to be a very complex thing over there. I can't seem to find any waiting periods for pre existing conditions? All states seem to be different.

My doc is referring me to Brisbane hospital to see what my options are up there as I can get it done for free under the public system we have here. We are exploring all options and we will have to weigh them up and see what is best for us.

I don't feel so pressured now into making the decision urgentlly so will see what Brisbane has to say.

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Feb 10, 2009 05:36PM leaf wrote:

I think in some places, the exclusion for pre-existing conditions can vary from insurance plan to insurance plan, at least in California, where my sister lives.  She was diagnosed with stage IV cancer (not breast) a month before she started a job - luckily she got health coverage 2 months later !!

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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May 5, 2009 04:24AM nanannlan wrote:

i was recently diagnosed with pleomorphic lcis and am now running around to various doctors to figure out my course of action.  my surgeon told me that pleomorphic lcis is treated like dcis, therefore radiation is the course of action.  i had a core needle biopsy and two lumpectomies.  these were done in response to my radiologist having found a calcium cluster on my annual mammogram.  about 10 years ago i had an excisional biopsy due to a calcium cluster.  i never took tamoxifen.  these clusters were both in the same breast.  i am very worried as i just read an excerpt of "advanced therapy of breast disease" by s. eva singletary.  read pages 276-278.  the only history of cancer in my family is on my father's side: grandmother, aunt and great-aunt all had breast cancer.  my aunt and great aunt survived.  my grandmother was not treated in time.  i will be 66 years old in two months and am in otherwise excellent health.

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May 5, 2009 08:57PM Minnesota wrote:

I will be having a consult at Mayo Clinic next week regarding my PLCIS. I'll let you gals know what their thinking is these days re: treatment.

(Pleomorphic LCIS)

Dx 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2-
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May 6, 2009 06:26AM nanannlan wrote:

i am having a consult with new york/weill cornell hospital in new york next week and soon after with memorial sloan kettering.  will let you know what they both say.  this is crazy.  have you had radiation?  from everything i've read, treatment ranges from watching and waiting to mastectomy.  as i said, my original surgeon prescribed radiation to start within 8 weeks of my second lumpectomy.  i had clean margins from this surgery.  because of a couple of screw-ups, i am now approaching the end of the 8 week window.  have you had genetic testing?  i haven't.  did you have an mri after your last surgery?  i have not.  i just entered the angry stage - probably not too good for me. 

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May 6, 2009 08:47PM Minnesota wrote:

Nanannian,

Between the two of us and these three famous medical centers, hopefully we'll be able to make better sense of all this! We have to post what we both find out! I agree with you that it's crazy. Unfortunately, there seems to be a lack of info on this very rare variant of LCIS, as there also is of classic LCIS itself. One of my questions is whether PLCIS is a marker for any type of breast cancer, or is it more likely a marker for possible pleomorphic lobular breast cancer, which seems to be rather a nasty animal.  I had no choice but to have a mastectomy (following a lumpectomy first), because the LCIS (or what they thought was DCIS, at the time) was so extensive and my breasts are not that big. So, because I had the mastectomy, I didn't have to have radiation. I was on tamoxifen for 2 1/2 years until I recently had some thickening of my uterine wall. The docs concluded that it was caused by the tamoxifen and could lead to endometrial cancer. So I was switched to Evista, and now my uterus is back to normal. I have not had genetic testing. The only breast cancer in my family is a cousin and a great aunt. My cousin was tested for the gene and was negative. I have had several MRI's. One was prior to my lumpectomy, to see if my other breast was clear and to assess the size of the area in the bad breast. I also had one a few months back as part of a 6 month check. Where I'm at now is wondering if I should be considering mastectomy on the other side, since my understanding is that LCIS increases your risk of invasive cancer in both breasts, not just the one where they found it. I've already been thru reconstruction on the first side, so I figured I was done with the whole cancer thing. But I wasn't able to quite leave the worry behind me, expecially since I've had a couple of good friends whose breast cancer later metastasized. It scares the dickens out of me to see what they've gone thru. I've only recently realized that I didn't have DCIS, but rather PLCIS. It was actually diagnosed at Mayo clinic after my mastectomy. Yet my oncologist continued to refer to it as DCIS. Only when I went back and combed thru the pathology report from Mayo, now 2 1/2 years later, did I find out what it really was. Apparently they were only first really identifying and describing PLCIS about the time I was diagnosed. I don't know what to make of all of this. The standard of care for this seems not to have been well-established yet. I think they generally treat it like they would DCIS, so your treatment sounds consistent with that. Lumpectomy and radiation. But honestly, I just don't think they know enough about this yet. Maybe these other hospitals we're going to will at least have seen other cases of this and be able to tell us something. I know I'm the first with PLCIS that my oncologist saw. Try to be thankful, tho, that you did not have invasive cancer. That's the important thing! We're a jump ahead of that, and likely will never have to deal with it! My reconstruction was so fabulous that I honestly do not feel as tho I had a mastectomy. That makes it a lot easier for me to even contemplate having the other side done.

(Pleomorphic LCIS)

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

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