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Topic: worried that I did not have enough treatment

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

Posted on: Oct 23, 2007 02:14PM - edited Oct 23, 2007 02:14PM by alefty

alefty wrote:

I was diagnosed with LCIS in March 2007 - I had a lumpectomy in April which showed extensive LCIS with no clear margins.  I was given the option of aggressively watching the LCIS or having prophylactic double mastecomies.  I consulted with the assistant chief of oncology at NSLIJ Hospital in Manhasset, NY and was given the same options - I opted to have th dble mast with recon on 6/11/07  with sentinal node biopsy - nodes were negative.  My pathology report was sent at the request of my oncologist to a pathologist at Mt. Sinai in Manhattan and he concluded that I had pleomorphic LCIS - So I feel now that I made the right choice. My oncologist recenlty told me that what I had was a stage 0 cancer it it is gone.  I am the first in my family to have any kind of cancer and it is overwhelming how many breast cancers there are and how many treatments.  I am just afraid of a reoccurrence.  Why no radiation or chemo, is that because nodes were negative and ducts and lobules were removed???

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Oct 23, 2007 06:00PM nash wrote:

You didn't have chemo or rads b/c they are not effective against LCIS. LCIS is considered a marker for cancer, not an in situ cancer like DCIS. It's interesting that your onc called it Stage 0 cancer, b/c most oncs don't call it that. Even for DCIS, they don't give chemo. I'm not sure about rads for DCIS.

However, I have pleomorphic LCIS and had a 2.7 cm pleomorphic ILC tumor removed as well. The ILC was surrounded by the LCIS, so as far as I can tell, the ILC evolved from the LCIS. Which would blow the "just a marker" theory of LCIS.

There is a small chance of still getting invasive cancer after a double mast b/c there is always some breast tissue left over. However, since you didn't have invasive cancer to begin with, like I said before, chemo/rads at this point would have no effect.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Oct 24, 2007 12:12PM leaf wrote:

I think that pleomorphic LCIS is more uncommon than classic LCIS, and the treatment of LCIS has been filled with controversy.

In all I have read, I have always heard LCIS referred to as stage 0 breast cancer. There's a lot of terminology problems with LCIS, including 'What is cancer?'
Work-Up (Evaluation) and Treatment Guidelines: Decision Trees

Stage 0 Lobular Carcinoma In Situ
Stage 0 Ductal Carcinoma In Situ

This is a copy of the NCI website for LCIS.

The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[1] In addition, three women developed contralateral breast tumors (two of the tumors were invasive).

Treatment Option Overview
Most women with LCIS can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. Tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women.[2] The NSABP P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months.[2] Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.) Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.

Treatment Options for Patients with LCIS
Observation after diagnostic biopsy.

Tamoxifen to decrease the incidence of subsequent breast cancers.

Ongoing breast cancer prevention trials.[3]

Bilateral prophylactic total mastectomy, without axillary node dissection.

I think they have even less information about the treatment of pleomorphic LCIS.
1: Curr Genomics. 2006 Dec;7(8):523-532. Links

Raju U, Lu M, Sethi S, Qureshi H, Wolman SR, Worsham MJ.
Pleomorphic variant of invasive lobular carcinoma (PILC) is an aggressive variant of invasive lobular carcinoma (ILC). Its in situ counterpart, pleomorphic lobular carcinoma in situ (PLCIS) is a recently described entity. Morphologically it has the typical architectural pattern of LCIS, but the neoplastic cells resemble intermediate grade DCIS. Molecular signatures that distinguish PLCIS from DCIS and LCIS would provide additional tools to aid in the histopathologic classification of PLCIS as a lesion distinct from LCIS and DCIS. CIS lesions, obtained from a study cohort of 38 breast cancer patients, were divided into 18 DCIS, 14 PLCIS and 6 LCIS. DNA from microdissected archival tissue was interrogated for loss or gain of 112 breast-cancer-specific genes using the Multiplex Ligation-dependent Probe Amplification Assay (MLPA). Classification Regression Tree (CART) analysis was employed to develop a gene-based molecular classification to distinguish or separate out PLCIS from DCIS and LCIS. Molecular classification via CART, based on gene copy number, agreed with histopathology in 34/38 CIS cases. Loss of CASP1 was predictive of LCIS (n=4) with one misclassified PLCIS. Gain of RELA predicted only the LCIS classification (n=2 cases). STK15 and TNFRSF1B were predictive only for DCIS with no misclassifications. Gain of EHF and TNFRSF1B and loss of NCOA3 were predictive of PLCIS, but not without misclassification. Molecular reclassification by CART was accomplished in 4 CIS cases: 1 PLCIS was reclassified as LCIS, 1 LCIS reclassified as PLCIS, and 2 DCIS cases as PLCIS. This study provides additional rationale for molecular modeling strategies in the evaluation of CIS lesions. This diagnostic aid may serve to minimize misclassification between PLCIS and DCIS, and PLCIS and LCIS, aiding to increase accuracy in the differential diagnosis of CIS lesions.
PMID: 17375183 [PubMed - author manuscript in PMC]

1: Mod Pathol. 2002 Oct;15(10):1044-50. Links
Clinical, histopathologic, and biologic features of pleomorphic lobular (ductal-lobular) carcinoma in situ of the breast: a report of 24 cases.

Sneige N, Wang J, Baker BA, Krishnamurthy S, Middleton LP.
Division of Pathology and Laboratory Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas 77030, USA.
We reviewed 10 cases of pleomorphic lobular (ductal lobular) carcinoma in situ (PL/DLCIS) of the breast and compared them with 14 cases of pleomorphic lobular carcinoma in situ (PLCIS) found in association with invasive pleomorphic lobular carcinoma. The histologic features; immunohistochemical staining for estrogen receptors (ERs), p53, Ki67, E-cadherin, and gross cystic disease fluid protein-15 (GCDFP-15); and results of fluorescence in situ hybridization for HER-2/neu gene amplification were evaluated in all 24 cases. Histologically, PL/DLCIS cells were similar to those of PLCIS with invasion in that they were discohesive and medium to large in size with moderate to marked nuclear pleomorphism, small to prominent nucleoli, and moderate to abundant eosinophilic or vacuolated cytoplasm. In both groups, central necrosis was present in a small number of cases, and classic LCIS coexisted with the in situ lesion in less than half of the cases; in situ carcinomas were positive for ERs in 23 (100%) of 23 cases, p53 in 6 (25%) of 24 cases, and GCDFP-15 in 14 (74%) of 19 cases. The percentage of Ki67-positive tumor nuclei indicated moderate to high (more than 20%) proliferative activity in 8 (47%) of 17 cases. Immunostaining for E-cadherin was negative in all 24 cases. HER-2/neu gene amplification was observed in 1 (4%) of 23 cases. In cases with associated invasion, PLCIS had cytologic features and immunostaining patterns similar to those of the invasive pleomorphic component. Seven of the 10 patients who had PL/DLCIS without invasion underwent lumpectomy or simple mastectomy. Six of these patients had no evidence of disease in follow-up periods ranging from 4 to 32 months; the seventh patient developed recurrent disease 12 months after undergoing lumpectomy. We conclude that the cytologic features and biomarker expression profile of PL/DLCIS are similar to those of PLCIS with invasion but somewhat different from those of classic LCIS and ductal carcinoma in situ. Long-term follow-up studies are needed to further define the natural history of PL/DLCIS and its optimal management.
PMID: 12379750 [PubMed - indexed for MEDLINE]

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 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 10, 2007 08:49PM femme wrote:

I have just been diagnosed with LCIS. It was at a major NYC hospital center with a sterling reputation. I had a biopsy (exisional) for a bleeding nipple. that turned out to be a benign papilloma. However they did discover LCIS. Everyone say "This is not nothing. it was suggested that I take Evista if I was so inclined. However I have just gotten off 9 years of Prempro in May and don't want to take any more hormones. My mother had BC and got it at 64, living 19 years after with 2 reccurances and a fairly stress free time with it. I will get tested for the BRCA gene and plan to do nothing. Am I playing with fire and doing too little? I will get check ups every 6 months and a mamo every year. I am 68 year old and have been in great health. I live in NYC and have access to great medical centers. What should I do?

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Dec 10, 2007 09:37PM awb wrote:

femme---when I was diagnosed with LCIS 4 years ago, my surgeon gave me 3 options:

1) close monitoring

2) close monitoring and tamoxifen

3) bilateral mastectomies

I"ve always been watched fairly closely anyway because of my mom's bc and all my docs felt #3 was too drastic for my situation (had lumpectomy since LCIS only found in one area); I wanted to be proactive and feel like I was actually doing something to prevent an invasive bc in my future, so I chose #2---I have mammos alternating every 6 months with MRI and see the oncologist every 6 months on an alternate schedule, so basically I'm being followed every 3 months. Hopefully that way, if anything were to develope it would be found early when it is more easily treated. Do you have an oncologist yet? It may be a good idea to discuss your risks and benefits of taking a preventative medication like tamoxifen with an oncologist;  tamox is the medication  generally prescribed for LCIS, but some now are trying Evista as well.  I've been taking tamox for over 4 years with relatively mild SEs, mainly hot flashes. While it is very difficult to figure out the exact level of risk with LCIS, the fact that you also have family history raises it even further and basically puts you into a whole new catagory (according to my docs). These are all very difficult decisions and very personal too; we all are able to live with different levels of risk.  I just will always remember my friend who was diagnosed with LCIS, was told "don't worry about that", wasn't even offered tamox, and had both invasive lobular and invasive ductal in both breasts within 4 years. (was it because she didn't take tamox? or was there invasive bc in there all along that went undetected? we'll never know for sure) I just want to know that I'm doing everything I can to  prevent future problems.  Good Luck with whatever you go with.

"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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Dec 11, 2007 12:18AM femme wrote:

awb-thank you for your response. This is all very new to me. I feel that the BRCA test will be a way of determining if my mother's cancer is part of my heredity. Am I right? Because I am 68 and no longer shooting out estrogen naturally, and I am no longer taking hormone replacement therapy , I feel that my having stopped HRT is a major step in changing my odds of developing invasive BC. I just hate the idea of going on Evista for 5 years and then hearing that it caused a lot more strokes than originally thought. I could be convinced to change my mind, though.

What have you women found the symptoms of Evista to be? Are they difficult for a good quality of life? I'm hoping to make some decisions that will allow me to sleep through the night and awaken without feeling sad and scared in the morning.. I do have an oncologist and she suggested Evista, and exams every 6 months with mamos every year . However, she did not push anything and seemed to also advocate doing nothing but careful watching. What are my odds for this becoming invasive cancer?

How are you aldealing with the psychological aspects of all this? I look fine and happy but have freaked out in reality. I am a good actor Have you any tips for dealing with the psychological aspects of all this?s

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Dec 11, 2007 01:14PM - edited Dec 12, 2007 01:16PM by leaf

I take tamoxifen - I don't recall anyone with just LCIS and nothing worse who post here regularly and are on Evista, but I may be forgetting someone. You may want to check out the Hormonal Forum, below, to get a feel for Evista experiences, even though they are not taking it for LCIS alone. Please be aware that people who post are much more likely to have a bad time with a med, and the people who did not have trouble with a med are less likely to post.

As far as your odds for this becoming invasive cancer, well, my oncologist says numbers are thrown around like about 1% per year (this includes DCIS). In the Port study, they had 3 DCIS and 10 invasive breast cancers in 252 LCIS patients over 6 years. (One woman had DCIS in one breast and invasive in the other; another woman had bilateral invasive). (Ann Surg Oncol 14(3) 2007 1051-1057.) I've gotten quotes between 10-60% lifetime.

But the Gail model is quite flawed with respect to which INDIVIDUAL person may get breast cancer. You may want to check out my thread called Predicting Breast Cancer in this forum that I started last mid-Sept. (2007).

Each person is different, and we each have a different capacity for dealing with uncertainty and anxiety. Some people try medication, or biofeedback, or therapy, or meditation, belief in a higher being, or distraction. .

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 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 17, 2007 04:05PM liveit56 wrote:

I was just told that my dianosis was LCIS and it was suggested to me about Evista also and I have to go off my Estratest that I have been taking for 5 yrs after a hysterectomy....I am concerned also about side effects and what to do about hot flashes and mood swings.  Dr. said some women have no problem with Evista and some ween myself off the hormones and start the Evista when I feel ready to and see what happens...maybe I can take it maybe not. 

I am in my 50's and I want a good quanity of life and not be miserable and I don't want breast cancer either so...I have to do something...that is why I am doing what I am, taking the Evista and praying for no side effects.

 This is such a personal decision and I hope what ever decision you make is right for is hard enough with out all of this.

As far as how I really feel about all of this...I am a wreak and I know what you are going through...I want to do what is right and my brain is tired from thinking.  I had a good talk with my doctor and she made me feel some better...she is not pushing either but wants me to be informed and I have to have mammograms every six months and MRI once a year which I have no problem doing and then the Evista and stopping the hormones...doesn't seem like much dose it?  I'm sorry if I am ranting but I am where you are the psychological part of it all.  Don't know what to do about that one.

Please take care and hope things work out for the both of us.


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Dec 18, 2007 04:33PM LCISgirl wrote:

Well I wanted to share my final pathology results after bilateral mastectomy.  I started to question myself a bit because the road to recovery ahead is long....but, it turns out my "gut" feeling was right.  My extensive LCIS did turn out to have a 7 mm invasive lobular portion.  Thankfully, the nodes are clear!! I just wonder what would have developed if I had waited 6 months like advised.  Of course, it most likely would have been found early then too...but, I feel so fortunate that I went ahead with mastectomy and now there's no doubt!  I need to see oncologist again and discuss Tamoxifen, but hope that he thinks it's unneccessary now that mastectomy is done! 

I hope that all of my LCIS sisters will follow their gut feelings as well and get further testing if you want it.  At least keeping up on monitoring should catch things at the right time and treatment will be wishes to all.


"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Dec 18, 2007 07:34PM femme wrote:

Ok, so here I am, having been diagnosed incidentally after a benign biopsy on Nov 13 with LCIS. I am in the process of making what I hear is the traditional journey, from denial to hysteria to sorting things out for some sort of thoughtful, sane, calm plan of action that I can live with. On Thurs I get the comprehensive BRCA test. It will take a month for the results. I also saw a lovely therapist on Monday, do yoga. I find that if I breath deeply I am able to calm myself. i have reached out to friends and friends of friends who have had some experience with this. So far i am aware that for me, this kind of waiting for the other shoe to drop...and I know that there may never be another shoe, is almost impossible. I don't do well with constant lack of resolution and constant worry.

I have many questions to ask the genetic counseling people in terms of my probability as my mother had breast cancer . I also want to know how my age affects the prognosis...I am post menopausal. I want to know if HRT (prempro) for 9 years may have contributed to this and what the odds are if I just have my ovaries removed.

Has anyone had a good experience with Evista? That is what the oncologist suggested. I have heard horror stories on a blog online and am frightened of what it might do to my quality of life. I saw well thought of oncologist when I was in denial. The consultation was wasted. I seemed like someone who had made up her mind and was not open to hearing about anything other than wait and watch.she went along with me.

I am in another place now. I am leaning towards a bilateral mastectomy. Then I can be done with most of the worry. I just have to be sure that I will not lose arm strength as I am an artist, a painter, and am constantly lifting canvases, and doing more "trucking" as most artists do.

Does anyone have any questions or info that might be useful to me. I am truly in the "hunter and gatherer" stage.

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Dec 19, 2007 07:50AM walkteach48 wrote:

I have been taking Evista for LCIS since April 2007. I have had one minor side effect. I have occasional "warm" flashes. I don't call them "hot" because they are mild. These usually occur once or twice a week at night. So far, that is my only discomfort from this medication. Hope this helps.


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Dec 22, 2007 11:52AM Peaches70 wrote:


I am on Evista for LCIS. I was having hot flashes before and they did get worse. Other than that...I don't have a family history of stroke, but that risk does worry me. I also can say that I feel "older" than I did. I am 54. My skin and muscle tone seem to have aged some, I guess due to the suppression of estrogen. I've also put on about 10 pounds, but that is definitely due to my mouth. I have had trouble with binging, something I never had before. I don't know if it has anything to do with Evista or just my age or the effects of stress and sleep-deprivation. I don't get any joint pain from it. I already had pain in my neck and lower back, so that didn't change.


Dx 1/25/2007, LCIS, Stage 0

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