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Topic: LCIS - rare???

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

Posted on: Jun 15, 2019 02:31PM - edited Jun 15, 2019 02:33PM by jessie123

jessie123 wrote:

I don't understand how they know LCIS is so rare. I guess they are basing it on the number of breast surgeries that contain LCIS. But that wouldn't tell for sure when you have a lumpectomy. ( could be in other breast or another part of lumpectomy breast) So maybe it's just double mastectomies. They also say that most LCIS doesn't become cancerous. Well, how do they know that? I don't think LCIS shows up on imaging - does it? I'm old and have never been called back after a mammogram. They say LCIS may not develop into cancer for 15 to 20 years or most of the time NEVER. The majority of women don't ever get cancer, but how do they know that many of those women don't have LCIS that never develops into cancer. So in a nutshell they say it's rare, but I don't understand how they know that if most of the time it does not develop into cancer.

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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Jun 15, 2019 04:44PM BevJen wrote:

Jessie123,

My doc found LCIS when calcifications showed up on my very first mammogram in 1991. I was told at that time (not sure if this has been revised or not) that only 25% of people found to have LCIS would develop full blown invasive cancer. Unfortunately for me, I was in that 25%. I will say, though, that my invasive cancer did not develop until about 13 years later.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Radiation Therapy Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jun 15, 2019 08:37PM - edited Jun 15, 2019 09:26PM by jessie123

Well, I'm in that 25% with you. I guess I've had the LCIS for years because my invasive ILC just showed up as a hard lump. I haven't done breast exams in years, but I felt a quick sharp pain on the side of my breast one night that made me reach my hand to the site and I felt a small hard lump. The literature is right -- you know immediately when something is very different in your breast. However, lobular usually doesn't appear as a lump. Of the 5 friends I know with breast cancer 3 have had lobular. What's that about -- thought lobular was just 10 or 15 percent of all breast cancers ---- not so in my crowd. Were they monitoring you closely after your LCIS diagnosis? Did you have yearly MRI's? How did they miss your ILC for it to get to a IIIC stage? I know they say it's very hard to find. You've really done well with a stage 4 diagnosis --- you give me hope even if I end up stage 4.


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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Jun 16, 2019 08:02AM BevJen wrote:

Jessie,

I agree that you've probably been harboring this for many, many years. I was monitored by my breast surgeon (a really terrific doctor, I might add) every six months from the first finding of LCIS (at age 38), and a mammo every 12 months. MRIs were not standard of care then. Mammos all clear all the time. In 2003 (age 54), I had my exam and mammo in June. This all blossomed in late September when my L breast got very hard after a period (I used to swell up prior to my periods, as many people do) and the hardness did not dissipate. Then I noticed that my L nipple was becoming inverted. Breast surgeon flew into high gear and then I had a breast MRI. That's how it was found, although I already knew. So it was literally found less than 6 months after my latest mammo. Once found, my surgeon did a physical exam and did not think that nodes were involved. Ditto for the oncologist, who I saw pre-surgery (at that time, they did surgery first, then chemo or other treatment.) Surprise -- many positive nodes on surgery(I don't remember the exact number -- maybe 15/19?)

I have had a major run on letrozole -- weird recurrence in 2006 to a polyp on my cervix where they found a few breast cancer cells at the tip of the polyp according to the pathologist. That's when I went on letrozole. No issues from then until TMs started rising in mid 2018. Am now starting treatment for liver mets (local and systemic). Hoping for another long run on treatment, fingers crossed.


Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Radiation Therapy Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jun 19, 2019 05:18PM leaf wrote:

jessie123 wrote:

I don't understand how they know LCIS is so rare. I guess they are basing it on the number of breast surgeries that contain LCIS. But that wouldn't tell for sure when you have a lumpectomy. ( could be in other breast or another part of lumpectomy breast) So maybe it's just double mastectomies.

They don't know that LCIS is rare. To be diagnosed with LCIS (or almost any invasive breast cancer), they need to look at a piece of tissue under the microscope. They don't know how many men or women are walking around with LCIS and have never had any of their breast tissue looked at under a microscope. It is impossible to tell for sure that you have excluded a diagnosis of LCIS, even from double mastectomies, because when they make specimen slides from breast tissue, they do not look at EVERY cell in the mastectomy. Plus, a mastectomy does not remove EVERY breast cell.

They DO know the (approximate) number of patients get diagnosed with LCIS from biopsies or mastectomies, and in that group, LCIS is an unusual diagnosis.

They also say that most LCIS doesn't become cancerous. Well, how do they know that?

They can look at the people who have had LCIS, and see whether or not they end up getting breast cancer in their lifetimes. While some breast cancers can recur over 50 years after their first occurrence https://www.ncbi.nlm.nih.gov/pubmed/22606439, this is very unusual. (Most people get diagnosed with LCIS in their 40s or 50s.) Its almost impossible to study LCIS and if/when it becomes cancerous.

I don't think LCIS shows up on imaging - does it?

LCIS cannot be diagnosed without looking at a piece of tissue under the microscope. Doctors don't take tissue out of a breast and look at it under the microscope without a reason to do so. Usually doctors are looking at a breast lump, or something suspicious seen on a mammogram or ultrasound or MRI or other imaging, or, perhaps someone is getting a breast reduction for cosmetic reasons, or getting a mastectomy because they have a horrible family history of breast/ovarian cancer. That said, sometimes LCIS is seen not AT the site of an abnormality, but adjacent to it. So, you're right, sometimes LCIS shows up in imaging, but sometimes it doesn't.

There are a lot of unknowns and controversy with LCIS. Its a weird condition. But, speaking for myself, I'd MUCH rather have plain LCIS (in other words only LCIS), rather than DCIS or an invasive breast cancer.

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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Jun 19, 2019 08:33PM jessie123 wrote:

Leaf -- thanks -- you are so right - most women don't have biopsies or breast cancer surgery so there could be many women with undiagnosed LCIS. I never had a mammogram call back or any breast problems until I was diagnosed with BC at age 69. I've probably had the LCIS for years and years and If I hadn't gotten cancer I would never have known. Yet, almost every article I read talks about it being rare. Just doesn't make sense to me. I also agree with you on how they know most LCIS doesn't become cancerous. Never thought about the fact that it could be missed at surgery since all the tissue is not tested by pathology. So there may be many more LCIS cancers -- just not identified.

I went with the lumpectomy because I didn't want to be under anesthesia for four to six hours at my age. I'm healthy, but anesthesia has it's risks. Anyway, the LCIS was found after my surgery. So we still don't know if it's in the rest of my surgical breast or the other breast. That kind of has me worried. Since LCIS puts us at greater risk are we safe now that our LCIS has been removed? Does the increased risk with LCIS mean that the cancer only occurs at the LCIS site -- so removal prevents increased cancer risk as far as the LCIS risk goes?

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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Jun 21, 2019 02:24PM leaf wrote:

Well, LCIS is very hard to study. We can't look at a spot of LCIS in a breast and monitor it over time, because you can't tell that its LCIS unless you look at the tissue under the microscope, which, of course, involves removal or at least a disturbance of the area.

They do know that when classic LCIS women go on later to get invasive breast cancer, the area that the invasive breast cancer grows sometimes/often previously looked normal under imaging.

In this paper, they state These data, further strengthened by the molecular data discussed above, support LCIS being both a nonobligate precursor and a marker for increased risk of developing invasive carcinoma. https://www.archivesofpathology.org/doi/10.5858/ar...:rid:crossref.org&rfr_dat=cr_pub%3dpubmed A nonobligate precursor means that sometimes an LCIS area actually turns into invasive breast cancer. A marker for increased risk of developing invasive carcinoma means that if you find LCIS anywhere in a breast, the entire breast is at increased risk of breast cancer. When LCIS people later get invasive breast cancer, sometimes the invasive breast cancer is genetically related to the previous LCIS, but in other patients, or in other breast cancers in the same patient, the invasive cancer isn't genetically related to their previous LCIS.

So LCIS people are more likely to get invasive lobular carcinoma than the general population (presumably these are cases where LCIS developed into invasive lobular carcinoma), but still most LCIS women go on to get invasive ductal carcinoma (like the general population), thus a sizable number of LCIS patients get cancers that are less genetically related to their LCIS. (Roughly 80% of the general population of invasive breast cancer patients get invasive ductal carcinoma, whereas in LCIS patients its more like ROUGHLY 60% ductal. These numbers vary quite a bit from study to study.) Since LCIS is less genetically related to invasive ductal carcinoma than invasive lobular carcinoma, presumably more of these IDC cases are due to the LCIS acting like a risk factor.

Because LCIS can act like a risk factor for the entire breast, just removing the known areas of LCIS won't eliminate all of the increased risk. I suppose theoretically it might reduce the chance of that spot of LCIS genetically developing into an invasive breast cancer, but since most LCIS people have multiple spots of LCIS, and often in both breasts, and many/all of these LCIS spots are undetectable, you can't remove all the LCIS in a breast, except perhaps in a mastectomy. (Even a mastectomy doesn't remove all breast tissue.) Obtaining negative surgical margins in excision specimens for classic LCIS is not necessary or recommended. https://www.archivesofpathology.org/doi/10.5858/ar...:rid:crossref.org&rfr_dat=cr_pub%3dpubmed

On the other hand, if you have florid or pleomorphic LCIS, then those types are thought to be more aggressive. Since florid and pleomorphic LCIS is less common than classic LCIS, they know even less about them.

Hope this gives you an idea about the uncertainty and controversy concerning LCIS treatment. I've seen papers that recommend that if a person has both an invasive breast cancer and LCIS, if the invasive breast cancer is treated normally, they don't have any worse outcome than people who 'just' have a comparable invasive breast cancer. But I'm sure those opinions are controversial too.

Best wishes.

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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Jun 24, 2019 04:45PM jessie123 wrote:

Leaf --- that is so interesting. I sure wish that I just had the breast cancer without LCIS. I saw my Oncologist today to discuss AI's. I don't want to take them because I already have mild osteoporosis and periodontal disease. My oncotype was 6% distant recurrence with AI's. He wasn't overly worried about me skipping the drug, although I think he would like me to take it. He did say I have a very good chance of not ever getting breast cancer again even without the drug. When you look at it statistically that is true. It's just that darn LCIS that worries me. When you go to the stage 4 forum it seems that most of the women started with a grade 3 tumor or a lot of lymph node involvement. Have you noticed that? I'm going to hope that my LCIS stays dormant like it does for most women. Plus very regular screenings.

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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Jul 3, 2019 11:59AM k4523 wrote:

I had a core biopsy 8 years ago based on suspicious mammogram findings. It came back positive for LCIS. They then did a lumpectomy to remove it. At the time they told me (my words eight years later from what I recall), that my chances of getting cancer in 8-10 years was significantly increased in both breasts. Here we are 8 years later and I now have invasive Lobular Carcinoma. My guess in saying it is rare is that 80 percent of breast cancers are ductal. Lobular make up only about 10% (that number varies by site). The good thing about it is they step up monitoring if you have LCIS. I went to every 6 months, alternating mammograms with MRIs and Ultrasounds, so my cancer was caught early. Mine was on the same side, however I opted for a double mastectomy since of increased odds with LCIS, ADH, ALH, Dense tissue plus family history. The Pathology report showed I had LCIS in the opposite side as well, so I am happy I chose the path I did.

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