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Topic: How fast does LCIS grow?

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

Posted on: Apr 23, 2020 10:36PM

HelloItsMe789 wrote:

They found PLCIS in one breast in January. My second opinion also found cancer, so I had a double mastectomy. The pathology stated this for the PLCIS: EXTENSIVE PLEOMORPHIC LOBULAR CARCINOMA IN SITU MEASURING 9 CM.

How fast does this grow? I'm stunned that this was not seen in prior mammograms, considering I sometimes had callbacks and would then have 6 month followups. And always had ultrasounds. (let's ignore the fact that they never even saw the 4 areas of ILC I had)

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Oct 1, 2020 04:53PM Gusta wrote:

I'm really curious about this, too. I have/had PLCIS in one breast, removed and all that, but I lie awake sometimes wondering how fast this aggressive mutant thing can grow. I've read that it's 'graded' 3, because it can grow relatively quickly. From everything I can get my hands on, it seems that they just don't know a lot yet. I'm grateful that they've started to recognize and learn about pleomorphic LCIS, and that mine was caught early, but it's very challenging to have a condition that is too newly recognized to have much information available. I will say that my medical people watch me like I'm about to spit diamonds at them, which is great. (My NP's hyper-vigilance caught thyroid cancer incredibly early.)
But still. Information helps me so much. Lack of it only feeds my anxieties. If I come across anything, I'll share it!
Hang in there!

Dx 6/1/2018, LCIS, Right, ER+ Surgery 6/13/2018 Lumpectomy: Right Radiation Therapy 9/16/2018 Whole-breast: Breast
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Oct 4, 2020 11:12PM - edited Oct 4, 2020 11:13PM by Gardengirl72

You absolutely cannot “see" LCIS or Atipia on a mammogram! It's only discoverable with a biopsy and usually by accident. Many, many women are walking around with normal mammogram results and they have Atipia or LCIS. Mine was discovered after a fibroid I've had since 19 started to be extremely painful around 43yrs old. I was given a mammogram and had calcifications so a biopsy was done and they discovered LCIS and Atipia. I went on Tamoxifen 20mg for 3 years and then reduced my dose (doctors don't know) to 10mg a day because of horrific joint pain. I'm in the home stretch of tamox and clean scans. I'm done in 2021 with clean scans

Dx 1/2016, LCIS, Right, ER+ Surgery 1/20/2016 Hormonal Therapy 2/22/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 8, 2020 04:47PM leaf wrote:

I am sorry you are going through this.

Its hard to measure how fast any living thing grows, unless you say it grows X amount at this time, and Y amount at that time. At the beginning, most cells double in number, because they divide into two cells. But they cannot continue to double forever at the same pace: they would eventually get to astronomic numbers, with astronomic food requirements. So eventually the cells run out of food and have to deal with waste disposal.

LCIS is sometimes 'seen' in imaging, meaning that sometimes they see something in imaging, and when they sample or excise that area, it ends up being LCIS. But LCIS is not RELIABLY detected by imaging or palpation. As Gardengirl72 said, its often discovered by accident. Sometimes its discovered not AT the Place of Interest (the suspicious area in imaging), but adjacent to it. You have to have some suspicious finding in order to be biopsied, and you have to be biopsied to be diagnosed with PLCIS/LCIS.

The only way I (as a non-scientist) can think of measuring the growth rate of a tissue that is fixed is to look at the number of cells that are in mitosis in X field. (the mitotic index). I could find this really old paper that only said ...and MI <mitotic index> were, on average, larger in ductal than in lobular carcinomas (2p < or = 0.01)https://pubmed.ncbi.nlm.nih.gov/8110444/ There was no statistically significant differences in MI in the LCIS and DCIS groups. The sample size is Very Small (29 LCIS, 39 ILC)

In this puny sample, Among the patients with pure PLCIS (not upgraded), 13 of 16 (81%) presented with fine pleomorphic calcifications on screening mammograms, 1 of 16 (6%) with distortion and calcifications, 1 of 16 (6%) with a mass, and 1 of 16 (6%) with nonmass enhancement at MRI. The median imaging size was 11 mm (mean, 14 mm; range, 3-47 mm) https://pubmed.ncbi.nlm.nih.gov/29894223/ so in this very small sample of pure PLCIS patients, one had about half the size of PLCIS as you had.

You had both ILC and PLCIS. I have seen ILC described as 'the sneaky one'.

Its hard to live with uncertainty, and when things are larger than what you expected. I'm sorry this happened to you.


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 18, 2020 06:28PM HelloItsMe789 wrote:

Thanks for the responses!

The PLCIS was discovered in a biopsy because my mammogram showed suspicious changes from last year (I don't have my report in front of me for the exact wording).

It was explained to me that LCIS or PLCIS can indicate a risk of future invasive cancer.

I went for a second opinion, they reviewed my original films, took two additional biopsies and found ILC then, which is possible I had for 5-10 years. (based on size after pathology)

I guess my question is more of a which came first question. If the PLCIS had been there prior to the ILC then probably every single mammogram/ultrasound I had missed it. If not, I guess they can grow independently of each other which I don't think I had heard before.

I read, on this site I think way back, that autopsies of women who had died from other means (like car accidents) showed a high percentage had LCIS and never knew it. Kind of scary!

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Oct 18, 2020 11:12PM - edited Oct 18, 2020 11:18PM by leaf

Yes, LCIS or PLCIS can indicate an increased risk of future invasive cancer, (and of DCIS.)

And we don't know if your PLCIS turned into your ILC. But it probably could have (which would require sequencing both samples, which I don't think can be done except in a science lab.) On the other hand, the ILC may have grown independently of PLCIS. We don't know how many spots of PLCIS or LCIS you had/have.

Yes, PLCIS can probably grow independently of ILC. There are people who have had simultaneously discovered IDC and ILC (1 case in this study https://pubmed.ncbi.nlm.nih.gov/30185420/).

They (scientists) can do clonal analysis, which looks at the mutations both in the LCIS (or PLCIS) and in the ILC. When they do this, sometimes they find the LCIS/PLCIS has mutations in common with the ILC, and sometimes they don't.

In this admittedly very small study, they looked at 9 patients that had LCIS and then subsequently (2-10 years later) found invasive breast cancer in the same breast. https://pubmed.ncbi.nlm.nih.gov/17380381/ They found 5 cases had ILC and 4 IDC. Two of the ILC cases were clonally related (meaning their LCIS and ILC had mutations in common) and in the other 7 cases they were not.

In this paper, they found Forty-two percent (18/43) of LCIS were found to be clonally related to synchronous DCIS and/or ILCs, with clonal evolutionary patterns indicative of clonal selection and/or parallel/branched progression.https://pubmed.ncbi.nlm.nih.gov/30185420/

What makes PLCIS/LCIS a risk factor for future invasive breast cancer is unknown. (We also don't know if the risk factor(s) for each are the same.)

In this paper https://pubmed.ncbi.nlm.nih.gov/33047861/ they found Four NCLCIS <PLCIS/FLCIS> developed ipsilateral recurrences: 2 NCLCIS, 1 IDC, and 1 ILC (50; 10-96 months). No breast event was reported in 24 pure CLCIS (60; 8-144 months). Invasive carcinoma with NCLCIS, unlike CLCIS, is always lobular type. Recurrences following NCLCIS are ipsilateral lobular tumors. <in this study>

There is obviously a lot we don't know about LCIS/PLCIS. In the studies that do exist, often there is controversy. But, eventually, if we let science take its course, we will know more.

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 19, 2020 02:05AM Jons_girl wrote:

So it can’t be seen on MRI either? It would seem it should be seen on mri? But I know lobular cancer is difficult to catch on diagnostics I think?

Thank you for sharing this info with the forum.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Oct 19, 2020 09:46AM HelloItsMe789 wrote:

I was kind of disappointed that my pathology didn't include toxins, but I did get sizes:

ILC was 4 distinct areas: 21mm, (2) 13mm and a 0.4

The PLCIS was listed as "extensive measuring 9cm"

I don't have a map as to where they were located in the breast, except that the initial biopsy never picked up ILC. I don't remember if the 2 later biopsies picked included the PLCIS, just that they actually had the invasive cancer.


Yes, LCIS or PLCIS can indicate an increased risk of future invasive cancer, (and of DCIS.)

And we don't know if your PLCIS turned into your ILC. But it probably could have (which would require sequencing both samples, which I don't think can be done except in a science lab.) On the other hand, the ILC may have grown independently of PLCIS. We don't know how many spots of PLCIS or LCIS you had/have.

Yes, PLCIS can probably grow independently of ILC. There are people who have had simultaneously discovered IDC and ILC (1 case in this study https://pubmed.ncbi.nlm.nih.gov/30185420/).
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Oct 19, 2020 09:49AM HelloItsMe789 wrote:

They definitely saw a lot of busy stuff on my MRI but I don't know if the PLCIS was included in all that? They suspected I had a 5cm tumor but couldn't tell I had 4 different ones. The 5cm is pretty close to the 4 tumors added together (with space between). I don't know if there is a way to tell the difference between the two, considering the dense tissue issue as well.

But I think back to my breasts and think gee, they weren't that big, where was that 3.5" of PLCIS?


So it can't be seen on MRI either? It would seem it should be seen on mri? But I know lobular cancer is difficult to catch on diagnostics I think?

Thank you for sharing this info with the forum.

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Oct 19, 2020 10:07AM MelissaDallas wrote:

Hellowitsme789, what do you mean that you were disappointed your pathology didn’t “include toxins”?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 19, 2020 01:35PM HelloItsMe789 wrote:

I've read posts where women have said their after-surgery testing showed parabens or some other toxins in their tissue. I think that is helpful in further cleaning ones life after a dx.

For example, I didn't realize BPA was in receipts. I've worked retail, waitressed, and now do bookkeeping (this is nearly 40 years worth plus old faxes) so I've had a good deal of exposure. If my tissue did NOT show a high concentration of BPA, I wouldn't panic over the fact that I spent all winter and much of my recovery cleaning receipts, and I wouldn't have random ones laying on the floor waiting for me to be wearing gloves so I can pick the damn things up

Loopy

I rarely take receipts these days and work on one of my clients books using gloves. Because I have no idea what pushed me over the edge and I'd prefer to stay on this side for awhile longer :)

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Feb 11, 2021 05:22AM Rbaltzley wrote:

I dont trust the mammos and sonos, only way to be sure it seems is biopsy, ct and at times MRI. I had lcis and for 4 years had mamo and sono and it was benign. It wasnt until I went in for reconstruction to fix the dent from my lumpectomy that they found it was invasive. Even though I know the nature of Lobular is not easy to detect, they have to find better ways to read it. We have spent millions of dollars studying this yet they cant find a better way to read the imaging. Its just NOT ok with me, we deserve better!.

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Feb 13, 2021 08:11PM Lea7777 wrote:

Wow, Rbaltzley! Glad it was detected at least and hope you are fine. True about deserving better reading of the imagery.

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