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Topic: How was your LCIS discovered?

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

Posted on: Nov 21, 2019 08:28PM

jessie123 wrote:

The surgeon found my LCIS during lumpectomy for ILC. My LCIS did not show up on mammogram, ultrasound or MRI. Just wondering if you just have LCIS how was it discovered?

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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Nov 21, 2019 08:32PM MelissaDallas wrote:

I have sclerosing adenosis with calcifications which can look like cancer on a mammogram. Found it when they biopsied that suspicious looking area. Actually they found ALH, suspicious for LCIS. LCIS confirmed on surgical biopsy

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Nov 23, 2019 09:58PM Lea7777 wrote:

Throw in some ADH on the biopsy and my situation is identical to MelissaDallas's.

LCIS is usually found in biopsies, not imaging, so your situation is typical Alabama. Hope you continue to do well.

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Nov 24, 2019 04:26PM jessie123 wrote:

Well, that's not good since I had the lumpectomy. Guess it's a risk the lumpectomy group has to take. My gene testing was negative. I have a maternal aunt and another cousin who had breast cancer. Wonder if LCIS is hereditary -- bet it is.


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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Dec 10, 2019 07:51PM beach2beach wrote:

Mine showed up after surgery. I was initially diagnosed with IDC at biopsy, then at mastectomy it was changed to ILC with LCIS and DCIS all in the same 7mm tumor

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 21, 2019 09:34AM Oley809 wrote:

I had microcalcifications that were loosely grouped and the Dr said I had a 5 to 10% chance of it being cancer but highly unlikely. They did a core biopsy and called yesterday and said lcis. Scheduled with BS for excisional biopsy and then medical oncologist to start Tamoxifen.

Dx 12/20/2019, LCIS, Left, 1cm
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Dec 21, 2019 09:43AM - edited Dec 21, 2019 09:44AM by april1964

....mine was in the pathology report after I had the lumpectomy.. the only thing that showed on the imaging (mammogram and ultrasound) was the IDC which was a small 1.5cm lump size of a pea...

oncotype 18 Dx LCIS/DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 22, 2019 08:11PM jessie123 wrote:

April -- that's also how mine was found. If I had known before surgery I may have decided on a MX. Now we are at an increased risk of both ILC and IDC. My Oncotype score was 19. I did have an MRI before surgery and it wasn't seen -- however, the MRI did see a 7.5 extension from the tumor -- maybe that was LCIS -- I need to ask the surgeon in Feb. when I see her next. I wonder how many IDC patients also have LCIS.

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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Dec 23, 2019 02:26PM april1964 wrote:

Jesse, they never offered to do an mri for me I guess because the core biopsy didn’t show the lcis... I too now wonder how many others have lcis? my doctors said not to worry about it because the idc was more of a threat....

oncotype 18 Dx LCIS/DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jan 1, 2020 09:05PM Badluckbdaygirl wrote:

Hi All,

I just saw this post and I am interested as well. I had may imaging tests, MRI, 4 mammos, ultrasound and they said I had a small IDC tumor. Since I’m still fairly young with extremely dense breasts, I opted for double mastectomy a few weeks ago. I just got my path report and the IDC was next to the DCIS and LCIS. I was surprised and my BS said I made the right decision especially for the LCIS had a greater chance of getting a new one on the other side. He still said they agreed no radiation or chemo and no Oncotype? I’m still trying to figure all this out.

This board has been great. Thanks for listening

Dx 10/28/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 12/10/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/13/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 12/13/2019, LCIS/DCIS, Right, Grade 2, 0/3 nodes
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Jan 5, 2020 07:26PM jessie123 wrote:

April --- my LCIS also didn't show on biopsy. Because they found mine during lumpectomy my surgeon has me on a yearly MRI schedule with mammogram also yearly 6 months later. It's because with the LCIS we are still at high risk for another breast cancer. We may have LCIS in another part of either breast. It's a real disappointment. Remember it is hard to see ILC on mammogram -- mine didn't show up on Mammogram -- just the MRI. So that's why the extra imaging is necessary

Badluckbday -- you are so lucky that you went with the BX. If I had known about the LCIS in advance I would probably have chosen that option.

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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Jan 12, 2020 03:44PM eknopfel wrote:

My LCIS was discovered in a mammogram in the form of microcalcifications

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Jan 12, 2020 08:02PM jessie123 wrote:

Eknopfel --- wow -- you are so lucky. I wish mine would show up that way because I don't know if I have more in other areas or not. Did you have surgery or is your's being monitored? Are you on one of the anti-estrogen pills? I've read that only 20% of LCIS goes on to 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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Jan 12, 2020 08:23PM Mavericksmom wrote:

Mine was found a year ago when I had my mastectomy for ILC. It was not seen in my biopsy only after the whole tumor was removed and sent to pathology. That doesn’t surprise me because my ILC wasn’t seen on my mammogram either.My mother had LCIS that was only discovered when she had her mastectomy for IDC.

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Jan 12, 2020 08:35PM jessie123 wrote:

Maverikesmom --- I wonder if LCIS is hereditary. My maternal aunt had breast cancer and also a different maternal aunts daughter (my cousin). My cousin is not the type to read her pathology report or even remember what her Oncologist may have told her. However, she did have a lumpectomy so maybe they didn't find LCIS even if she had it. My gene test was negative. I just can't find much research on LCIS. That's interesting that you and your mom both had it.

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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Jan 12, 2020 08:59PM Mavericksmom wrote:

Jessie123, two of my other sisters also had IDC, but both were treated with lumpectomies and neither had any LCIS component. Sadly my oldest sister had lymphoma at the same time so she didn’t live long enough to know if she would have had a recurrence which would reveal LCIS? My other sister was diagnosed less than a year ago and her lumpectomy didn’t show any LCIS. My mastectomy was because I had IDC in 2003, treated with lumpectomy, chemo and radiation and my pathology was void of any sign of LCIS.

I wonder if I have LCIS in my remaining breast? I think it is very likely, again, because neither myself nor my mother ever had LCIS show up on a mammogram. I don’t really know how women are diagnosed with LCIS, I presume via mammogram confirmed by biopsy? Oh, and I was denied a BMX because I don’t have the BRCA defect, hospital policy not to remove a healthy breast.

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Jan 12, 2020 09:18PM jessie123 wrote:

Mavericksmom - are you going to have a yearly MRI? Mine is next month and I'm dreading it. You know, I bet since they found LCIS after surgery your hospital will let you have the surgery on the second breast. If I end up having a MX I think that I'll do one breast at a time. My surgeon does just breast and endocrine surgery and told me that she would much rather do one breast and the second breast 3 months later because it's easier on the patient. I'm so sorry for your older sister. It just doesn't seem fair. My husband died when he was 58 of bile duct cancer and the man I dated before my husband just died of cancer two weeks after diagnosis - Yet, my mom and dad both smoked and drank their whole life and died of dementia -- mom 92 and dad 88. I took care of them --- the stress they caused me must have caused my 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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Jan 13, 2020 07:16PM LillyWasHere wrote:

Jessie123, do some research before you decide to do one breast at the time. You will go through anesthesia and surgery two times and that's way more difficult for the body than one time only. Just my thought as I go for second surgery fro breast reconstruction tomorrow.

Dx 7/31/2019, ILC, Left, <1cm, Stage IB, Grade 1, 2/5 nodes, ER+ Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 13, 2020 07:34PM jessie123 wrote:

Lilly --- good luck tomorrow. If I ever have to do it again I will research first -- thanks! It just seems like a shorter duration of anesthesia and less invasive surgery would be easier on the body. Then when healed do it again. I sure hope that my cancer doesn't come back because I'm not over the first cancer emotionally yet. They say it takes a year to be emotionally healthy again so I've got 6 more months. It's so frustrating because there is so little research dedicated strictly to ILC and LCIS.

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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Jan 15, 2020 08:12PM JJT644 wrote:

Stereotactic biopsy. Pathology reports concordant with the imaging. Florid LCiS classical type/lobular intraepithelial neoplasia grade 2

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Jan 15, 2020 08:27PM jessie123 wrote:

JJT644 -- Florid LCIS classical -- Wow they were specific with yours. I think mine just said LCIS. Do you also have Lobular Carcinoma? What is your treatment plan?


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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Jan 16, 2020 12:14AM Moderators wrote:

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Jan 17, 2020 12:49PM Tata2 wrote:

I had the option of leaving my left breast since neither mammography or biopsy’s showed I had cancer in my left breast. I chose to have both breasts removed. Cancer was indeedfound in my left breast.

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Jan 17, 2020 01:35PM Michi wrote:

my story is kind of wild. I had implants and I felt like one looked like it was bigger than the other suddenly. Naturally I freaked out and when I got back into the US I forced my doctor into a Mammo, which showed nothing but dense breast. I’m 36 and they said, see you when you’re 40. Reading the bottom of the report it showed 30% of breast cancers in women with dense breast are missed via mammo. I offered to pay out of pocket for an MRI and a very nice nurse said she would help me pass it through insurance to give me piece of mind. Low and behold a tiny area showed up, literally 2 MM. everyone said they were sure it was nothing but since it was seen it had to be biopsied. When they went back in they couldn’t find the area anymore but by chance they happen to see another small area, since they were already in there they took the sample. A complete shock to all LCIS/ALH. Everyone told me it was physically impossible for me to have symptoms with either one of these, but I think as women we know our own bodies well, and I knew something was off. I didn’t want to stress at 36 years old, going in for a check up every six months so I opted for a bilateral MX and reconstruction. I’m happy with the decision, but it’s been quite the wild ride! I had second-degree aunts with breast cancer but no one directly related to me. My onc said it’s not genetically linked, but I think they know so little about this pre cancerous stuff it’s hard to tell.

This site was a great resource for me!

Dx 4/12/2018, LCIS, Right, <1cm Surgery 5/21/2018 Prophylactic mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement
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Jan 17, 2020 06:46PM jessie123 wrote:

Michi --- Such an interesting story --- you were really lucky. Your assertion saved your life. It's so hard to be assertive with doctors, but we have no choice sometimes.

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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