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Topic: Question for those with LCIS

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

Posted on: Sep 7, 2019 03:23AM

Sarahn06 wrote:

Hello, I’m new here. I was just diagnosed on Wednesday with LCIS, and have a lump in my breast they are going to take out for another biopsy. My question is, of those who have been diagnosed with LCIS, have you been upgraded to a cancer diagnosis after an excisional biopsy?

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Sep 7, 2019 03:39AM kitkit wrote:

I had LCIS in 2011, a lumpectomy, and no radiation, which at that time was the standard of care. It was back in the lymph nodes in 2019 after seven years of exemestane. My suggestion: follow-up lumpectomy with radiation. If doctor says that's "too aggressive" get a second opinion. I have met many women who did not get radiation for LCIS and it returned. It was in vogue to say you really don't have cancer if it's in situ. I think that's a mistake. It is very early-stage and treatable cancer. You can be cured. Good luck

kitkit
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Sep 7, 2019 04:27AM MelissaDallas wrote:

I was not. I had ALH, suspicious for LCIS and LCIS was the only diagnosis.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 7, 2019 04:48AM Moderators wrote:

Hi Sarah and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. As you can already see, our Community is full of helpful members always willing to lend information, advice, and support -- we're all here for you!

Please keep us posted on how your biopsy goes and the results. We're sending good thoughts for benign results!

Looking forward to seeing you around the boards.

--The Mods

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Sep 7, 2019 08:29AM MelissaDallas wrote:

kitkit, you had to have invasive cancer for it to be in your lymph nodes, not just LCIS. I have only seen a couple of people with Pleomorphic LCIS treated like they have cancer and offered radiation. Radiation is not done for classic LCIS.

Most women with LCIS, which is NOT cancer, but only considered a condition that increases your risk, do not go on to develop invasive cancer. The preferred term for it now is actually lobular neoplasia, which removes the cancer confusion. LCIS is followed with more frequent monitoring and you may be offered tamoxifen or an AI to reduce your risk. Some women choose prophylactic mastectomy if they have other risk factors, butmost do not

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 7, 2019 08:49AM Lea7777 wrote:

"f those who have been diagnosed with LCIS, have you been upgraded to a cancer diagnosis after an excisional biopsy?"

No. I was told the odds were 80%-85% that I would not be upgraded. Those are the typical odds for all biopsies.

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Sep 12, 2019 12:07AM greenie wrote:

We need to stop repeating the phrase "LCIS is just a marker". It's becoming clear that it is both a marker and a non-obligate precurser.

Several long term studies in the last five years have shown that when LCIS patients do get cancer, it shows up ipsilaterally (63%) much more frequently than contralaterally (25%). In addition, other studies have shown that LCIS is clonally related to synchronous IBC.

See:

Lobular Carcinoma in Situ: A 29-Year Longitudinal Experience Evaluating Clinicopathologic Features and Breast Cancer Risk


This was a 29 year longitudinal study involving 1,000 participants. The review also confirmed that the incidence of developing cancer after LCIS diagnosis increased by 2% (cumulatively) each year for at least 15 years. Some other earlier studies have shown rates to increase to over 50% developing into cancer with time.


I was diagnosed with LCIS and ADH about a year and a half ago and had a few doctors initially tell me "it just puts you at slightly higher risk". Rubbish. LCIS is a serious diagnosis with a risk of growing into cancer, and a high incidence of cancer development over time, and it's important that we advocate for our care.

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Sep 16, 2019 01:27AM - edited Sep 16, 2019 01:28AM by Kk3069

I recently had two areas of calcifications come back as atypia. One set was alh, one alh and Lcis after stereotactic biopsies. I just had both areas surgically excised and the alh area came back as totally benign and the Lcis/alh area came back as more of the same (Lcis, alh). It took almost two months to get to that point. I had a Mri in-between and they found two more suspicious areas. so I had two Mri guided biopsies and they both came back as benign. it was an awful experience, long drawn out but im happy to say they didn't find anything worse!

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Oct 4, 2019 10:34AM Freakedout_ wrote:

Hi Sarah, I am also a newbie to all this as well. Recently diagnosed with LCIS, fea, in September. Also, very confused as to what I should do regarding treatment options. Going for genetic testing and when I asked about MRI, was told insurance doesnt cover it for my condition...If anyone has any opinions or can tell me what they have done and their prognosis is today, would be appreciated!

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Oct 4, 2019 10:35AM Freakedout_ wrote:

Hi Sarah, I am also a newbie to all this as well. Recently diagnosed with LCIS, fea, in September. Also, very confused as to what I should do regarding treatment options. Going for genetic testing and when I asked about MRI, was told insurance doesnt cover it for my condition...If anyone has any opinions or can tell me what they have done and their prognosis is today, would be appreciated!

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Oct 4, 2019 01:16PM Moderators wrote:

Welcome, Freakedout_! We're sorry you find yourself here, but you've come to the right place for support. We know this can be a scary and confusing process, but hopefully once you have more information and have heard from others here on how they dealt with their diagnosis, you'll start to feel more in control!

The Mods

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Oct 4, 2019 02:06PM - edited Oct 4, 2019 02:08PM by leaf

Many things about LCIS are controversial, even now. So even if you get 2nd opinions, you may get different recommendations. But, certainly if you've had the area excised, there is no huge rush to make a decision as to what to do (unlike if you had to make treatment decisions if you were found to have invasive breast cancer.)

I was diagnosed with classic LCIS in one breast in 2005, and many years later, also in the other breast. (It is actually quite common to have LCIS in both breasts if you have it in one breast.) I also have an unusual gene defect (not BRCA1 or 2) several years ago. If you have a SEVERE family history of breast/ovarian cancer, then your treatment choices may be different than if you don't. Remember, even in the 'general population' of women, about 1 in 8 women get breast cancer in their lives, and most of these women are NOT thought to have genetic causes. I read of one woman on that posted that had every female but one in her, her mother's and her grandmother's generation got breast cancer, which ended up being some 10 cases. That is certainly a SEVERE family history.

Its hard to get great data on LCIS because LCIS is only diagnosed by pathologists, and it is often not detected on mammograms. LCIS is usually an incidental finding. Since you have to remove at least a sample of it to diagnose it, you can't watch an undisturbed area in a breast over decades and see if it becomes DCIS or invasive cancer. Of the people with LCIS that DO go on to get DCIS or invasive cancer, many times it is in an area of the breast that previously was thought to be benign. So LCIS is quite hard to study.

Probably most women who started out with LCIS (with nothing worse like DCIS or invasive cancer) and went on to get DCIS or invasive cancer are not following this LCIS forum closely. They would be following the DCIS or invasive cancer forums because those conditions are more serious. So the number of responses you get to your question will NOT answer your question 'How many people with LCIS go on to get DCIS or invasive breast cancer?'

So do your research, take your time, check both what we know and how you feel about each choice, before you make your decision. Only you can say what is the best choice for you. If you've done your research, then you should get support here for whatever your choice (perhaps with the exception of NEVER getting any screening or treatment for the rest of your life.)


Best wishes,

leaf


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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Oct 4, 2019 10:40PM Sarahn06 wrote:

After my initial stereotactic biopsy was done they did a lumpectomy and that was found to have more LCIS and ADH. I met with a medical oncologist who wanted to start me on hormone therapy, but I declined and am choosing the monitoring route instead. I’m also going to have genetic testing done. One thing I was told about hormone therapy is that it increases the other hormones in the body and that’s why you can develop other cancers, like cervical, but that if you have regular periods the extra hormones will slough off. Since I have had an ablation and no longer have periods, it wouldn’t be doing that and so it could build up quicker, which could cause cancerous changes. Something to think about. My oncologist told me that LCIS is basically cancerous, it’s just that it hasn’t gotten out of the lobes, so it’s not invasive. He said invasive is the next step after LCIS

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Oct 6, 2019 11:12AM jessie123 wrote:

Well, I'm an example of someone who did develop ILC from LCIS. I was shocked after my lumpectomy to read on the pathology report that they also found LCIS. I had all the pre surgery imagining - mammogram, ultrasound and MRI. The LCIS was not seen.

Sarah - LCIS is not considered cancer -- however DCIS is. Where did you read that hormone therapy causes other cancers? Are you talking about the aromatase inhibitors or tamoxifen? Those are both "anti" hormone therapies. They greatly prevent recurrence or BC from growing.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Oct 6, 2019 12:02PM MelissaDallas wrote:

Sarah, I have never seen anything that AIs or tamoxifen increase other hormones. Cervical cancer is almost all caused be the HPV virus, not hormones. Periods don’t slough off hormones.You have periods when your hormones rise and fall. Tamoxifen can cause your endometrium to thicken and it poses a slight (but barely statistically significant) increased risk for uterine/endometrial cancer, but no others I am aware of. Often the next step for LCIS is ...nothing...it is a nonobligate precursor, which means it can but often doesn’t become cancer. The preferred term for LCIS now is lobular neoplasia, which removes the confusion over “carcinoma” since it isn’t

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 6, 2019 09:59PM Sarahn06 wrote:

I’m just repeating pretty much word for word what my medical oncologist told me.

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Oct 6, 2019 11:06PM MelissaDallas wrote:

I believe perhaps there is some misinterpretation of what you heard somewhere in here. Antihormonal therapy certainly doesn’t cause cervical cancer, among other inaccuracies in what you believe you were told.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 7, 2019 02:05AM Sarahn06 wrote:

I think you’ve also misinterpreted some of what I wrote...I did not say it caused cervical cancer, but it CAN increase the risk. I also understand that LCIS is not cancer...I also had a very small bit of DCIS and AD. LCIS is certainly not nothing, though.

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Oct 7, 2019 02:16AM MelissaDallas wrote:

If you have DCIS, the LCIS is beside the point and it is the DCIS that matters as far as treatment. LCIS does not increase your risk for cervical cancer. That is why we have a vaccine forHPV to ptevent cervical cancer now.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 7, 2019 02:55AM prepmom wrote:

In late May of this year I was diagnosed with DCIS after a biopsy of a suspicious grouping of microcalcifications. I immediately saw a BS at a major breast cancer center / research hospital. She ordered an MRI in which another group of suspicious microcalcifications was found. Upon biopsy of this area, I was diagnosed with LCIS. The MRI also designated a large area of ALH. My mother is a 25 year survivor of pre-menopausal BC (go, mom!) and my paternal aunt died at 59 of BC. I was genetically tested for a panel of 15 gene mutations - none were found. Once the LCIS was discovered, my BS (whose initial recommendation was lumpectomy, radiation, tamoxifen) changed her recommendation to bilateral mastectomy.

I quickly sought a second opinion, again at a major BC Center. They agreed that based on my pre-menopausal status, family history and LCIS DX, that bilateral mastectomy would be their recommendation. They did give me the option of lumpectomy, but I know that I could not emotionally handle the intense surveillance that would be required. I made the choice to have the bilateral mastectomy to avoid invasive cancer down the road. Both hospitals agreed that my risk would be greater than 50% over my lifetime.

I currently have tissue expanders in and I'm looking forward to my implant exchange on December 2nd.

Dx 5/24/2019, LCIS/DCIS, Left, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 7, 2019 09:01AM Sarahn06 wrote:

I also never said that LCIS increases your chance of cervical cancer. I know there is no correlation between the two. However, the tamoxifen does say as a side effect it can increase your risk of uterine cancer. That’s why I mentioned it, as I wanted the person who commented to be aware of that.


Prepmom, I’m glad yourtwo doctors said the same thing...that has to be helpful in knowing what treatment to do. I am going to a genetic dr next week to start the process of being tested for the gene.

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Oct 13, 2019 07:27AM leaf wrote:

Hi Sarahn06! I think its great that you're looking into genetic causes. You probably already know this, but I just wanted to point out that there are Many genetic mutations that are associated with increased breast cancer risk. BRCA1 and/or 2 are probably the best known, and mutations in these two genes may cause higher breast cancer risks than most, but when I had genetic testing about 3 years ago, I was tested for about 20 different genetic mutations. You may be tested for even more gene defects now, because doing sequencing has become cheaper (certainly much cheaper than 10 or 15 years ago.)

When I had genetic testing, I personally found the information from a genetic counselor was MUCH more useful than that from my physician. (I think genetic counselors in general probably have more information about genetics than do most physicians; genetics is the genetic counselor's specialty.)

Best wishes, leaf

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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