We are 221,171 members in 81 forums discussing 156,124 topics.

Help with Abbreviations

Topic: Anyone later dx with BC (ILC or IDC) after an earlier LCIS dx?

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

Posted on: Jul 10, 2019 09:33AM

light1candle wrote:

Just out of curiosity, has anyone later been diagnosed with breast cancer after an earlier LCIS diagnosis? I was wondering if you would talk about your BC diagnosis: ILC or IDC? In the same breast or opposite breast as LCIS? How long after your LCIS diagnosis? How old were you at LCIS dx and how old when upgraded to BC dx? How was your LCIS treated prior to the bc diagnosis? Or really anything else you might want to share.

I would also be curious to hear from anyone who had a biopsy result of ALH/LCIS but was upgraded to bc after excision or mastectomy or who had a prophylactic mastectomy only to find you had occult cancer.

I'm still struggling with LCIS treatment decisions and trying to decide about BMx, so I am just curious about how many of us were upgraded to a cancer diagnosis after first having LCIS.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Page 1 of 1 (17 results)

Posts 1 - 17 (17 total)

Log in to post a reply

Jul 10, 2019 11:11AM Ingerp wrote:

Well--not quite what you're looking for but I had ALH 10 years ago, then DCIS in 2016 (left breast) and IDC in 2018 (right breast). I had excisional biopsy/lumpectomies with all of them. I was 58 in 2016; 60 in 2018.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
Log in to post a reply

Jul 10, 2019 11:31AM light1candle wrote:

Thanks so much for sharing your story Ingerp. I figure ALH/LCIS is really a continuum, so I am quite interested in what you experienced. The literature says that LCIS is a risk factor for cancer in either breast and your story confirms that can indeed be true. So... your ALH diagnosis was when you were approx. 50 years old? And then it was about 8 years before your DCIS was discovered? This is also interesting to me as I struggle with my treatment decisions, ie. continued 6 mo. imaging, possible anti-hormonal drugs, or BMx.

May I ask were you offered and did you take any of the anti-hormonal drugs after your ALH diagnosis? Did you move to a 6 month schedule of imaging? Again, thanks for your response.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 12, 2019 08:24PM ndroby wrote:

Hello there!

My mother died from breast cancer at the age of 33 and I was 2 yrs old at the time.My older sister was diagnosed with DCIS at the age of 56! My maternal grandmother died from breast cancer at 72years of age.

ThroughOut my life, I had 14 breast biopsies before I said enough is enough! In 2012, after being told my biopsy showed that I had atypical lobular and ductal hyperplasia, I opted for bilateral prophylactic mastectomy. When I got my pathological report, there was LCIS everywhere in both breasts!! My surgeon told me I was a few months away from invasive breast cancer. Nothing showed on mammography except for a few suspicious microcalcifications. LCIS did not show up and it never does!

I have never been happier with my decision. I just had revision of my implants from textured to smooth and they are awesome!!

You have to decide what feels right for you. I recommend talking with your doctor and weighing your options. Second opinion is also a great thing!

Nancy



Nancy Dx 4/10/2012, LCIS, Stage 0, 0/2 nodes Surgery 4/10/2012 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/5/2012 Prophylactic ovary removal Surgery 4/5/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/27/2013 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Jul 13, 2019 05:12AM Ingerp wrote:

Light1--yes that was my timing. I was not offered any follow-up treatment after the ALH other than regular annual mammograms. Also no anti-hormonals after the DCIS because it was ER-/PR-. I know this is going to sound weird but I honestly can't remember if I was getting annual or semi-annual mammos after the DCIS, although probably annual. I know that women are interested in follow-up schedules, and that they vary quite a bit. I believe I'll see my MO every six months as long as I'm on the AI, but my RO orders the mammos and those will be annual going forward. I cut my BS loose after my last surgery. She said I could keep seeing her (possibly every six months?) but also that I didn't have to. I didn't see the need since I'm still seeing my MO and RO. I only recently got genetic testing--really only because if it had come back positive for mutation (which it did not), I'd have been put on an every-six-months alternating mammo/MRI.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
Log in to post a reply

Jul 14, 2019 06:01PM light1candle wrote:

Hi Nancy. Thanks so much for weighing in here with your story. I am much newer to this than you - just two years and three biopsies out, showing papilloma, ALH/LCIS, radial scar - the basic “busy breast” scenario. I don’t know how you dealt with the anxiety of 14 breast biopsies, especially with your family history! I have been considering a BMx, but am not yet sure about it. Also still considering anti-hormonal drugs prob raloxifene) but have some other health issues which may be a contraindication. My BS says I have time to decide, so it is helpful to me to hear other women’s experiences. Thanks again for sharing!

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 14, 2019 06:09PM light1candle wrote:

Ingerp, thanks for adding more details. I was a little surprised about your DCIS being hormone receptor negative. Is that uncommon? When I was diagnosed with the ALH and LCIS a couple of years ago I was offered anti-hormonal drugs as prevention despite the fact that no testing was done to determine the hormone status of my biopsy samples. I questioned the doc about that and was told that they don’t test the LCIS since it is almost always hormone receptor positive. I guess I just assumed that DCIS was also mostly hormone receptor positive

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 18, 2019 11:20AM - edited Jul 18, 2019 11:29AM by Trying2staypositive

I did not have a previous LCIS diagnosis, but LCIS was also found on same biopsy when I was diagnosed w ILC earlier this week. It showed up as a distortion on 3d mammo and then MRI shows another possible area. That said I also have adh, alh and fea in that same side. I am 46. I have family history but theirs was all IDC

Log in to post a reply

Jul 18, 2019 06:07PM jessie123 wrote:

They also found my LCIS when I had surgery for ILC. They say LCIS is very rare and only about 20% of those with LCIS go on to develop BC. How do they know it's rare??? I had never had biopsies or any breast problems in my life. It doesn't show up on imaging. So how do they know how common or uncommon it is?

Dx 11/2018, LCIS/ILC, Left, 2cm, 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
Log in to post a reply

Jul 18, 2019 06:31PM MelissaDallas wrote:

Partly based on studies from autopsies is what I have always read.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5712106/

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Jul 18, 2019 06:35PM Ingerp wrote:

light1–I’ve never read what percentage of DCIS is ER negative. I wasn’t told it was unusual—my guess is it might be the same as the percentage of IDC?

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
Log in to post a reply

Jul 18, 2019 07:11PM jessie123 wrote:

Melissa --- I would never have guessed that. Now I wonder if my sister also has LCIS that hasn't developed into cancer. I wonder if LCIS runs in families. I have a cousin and an aunt who had BC --- I did the 8 gene test which was negative. It's such a puzzle. Kind of fun to research.

Dx 11/2018, LCIS/ILC, Left, 2cm, 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
Log in to post a reply

Jul 18, 2019 07:28PM Peacetoallcuzweneedit wrote:

I had 3cm of what was biopsied as Lobular neoplasia in my right breast (6cm DCIS in my left) - however after Bi-Lateral Mx a microinvasion of IDC was found in the left (so moved my staging to 1A) .....so if I had never done a bi-lateral mx God knows what would have happened..because it was encouraged to just do a uni for the left breast and a 6mos watch and wait for the right...but I said - no take it off I don't want it there.

5/2017 Left Breast DCIS 6cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, 100% ER+/100%PR+/ HER2- 6/2017 BMX, SNB left, TEs x 2 8/2017 TE deflated -Replaced Oct 2017 Hysterectomy + ooph 11/2017 Implant Exchange June 2018 Nipples.
Log in to post a reply

Jul 19, 2019 10:31AM light1candle wrote:

Hello Tring2staypositive. So sorry you are dealing with this recent ILC diagnosis. Thank you for taking the time to share your story. It sounds like you have "busy" breasts as well, with lots of things going on in there.

While ILC is not as common as IDC (only accounts for 10%-15% of bc?) it is more common in women with LCIS than in the general population. It seems that some of the genetic mutations (such as the ones that lead to lack of e-cadherin) that lead to LCIS can continue to mutate and become ILC. Of course, LCIS can also commonly be associated with DCIS/IDC. It just seems like breast with atypia are "fertile" ground for other changes that may lead to bc of one kind or another.

Thinking of you and hoping you have a doc/team you like and feel confident with.


Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 19, 2019 11:07AM light1candle wrote:

Hi Ingerp. I've read a little more about DCIS since I posted, and I think there must be more variety in terms of hormonal recepetor status, grade, etc. than I realized. Thanks for your insight.

I guess what I find unusual is that almost all LCIS is treated the same (with possible exceptions of pleomorphic or florid variants) and assumed to be hormone receptor positive without any testing. Most LCIS women are offered anti-hormonal drugs as prevention, and it seems few of us even know if our LCIS is ER+/PR+.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 19, 2019 11:14AM light1candle wrote:

Hello Peacetoall. Thanks so much for sharing your story, especially the bit about the contra-lateral mastectomy that likely saved you from something far worse. It's a cautionary tale to those of us with breast neoplasia - we never really know what's still lurking that the biopsy didn't remove and that not knowing is a source of anxiety for many of us.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
Log in to post a reply

Jul 19, 2019 12:24PM tjohnson1971 wrote:

I was 40 when I had a excisional biopsy with ALH, then lumpectomy revealed LCIS. I was offered Tamoxifen then but declined and went with 6 months mammograms and then yearly.

Now 48, had another biopsy with ILC. Had a DMX on 5/2019 and now prescribed Tamoxifen for 5 years which I will take this time. It was small .6cm so caught early, not clearly seen on Mammo or US, just told it looked suspicious and was given the option to biopsy or wait 6 months. I am happy I chose biopsy. Also happy I requested a double mastectomy because “healthy” breast showed atypical cells and ALH.

Dx 10/2011, LCIS, Right Dx 3/22/2019, ILC, Right, <1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- (IHC)
Log in to post a reply

Jul 19, 2019 12:44PM Rshep9101 wrote:

hi...I am sorry you have had to join this club. I was diagnosed with ALH 9 years ago in the left breast. I chose against the meds and my Dr agreed with me. I was 30 when diagnosed. I was put on the intensive surveillance train. Mammogram plus ultrasound.. visit with Dr...Mri....visit with Dr. Now it is 3d mammogram, Dr.visit, and mri. I have since had 6 biopsies and 2 excisional surgeries and am about to have a 3rd excisional surgery on 8/5. It is very very hard to live in limbo. we say that we live between scans. Then life pauses kind of.... for whatever amount of time it takes to get a clear report. Then we live again. I have found that There is not as big of a support system or understanding for those individuals who are living with high risk, high anxiety, constant scanning, and what amounts multiple lumpectomies without a diagnosis of bc. I am seriously considering a bilateral mastectomy. My lifetime risk is 47% and I just don't think I can face decades more of biopsies and scans. It is the hardest decision... I grinned at your description of "busy" breasts, The Breast radiologist recently called mine "hyper" and "likely to develop cancer at some point". The hard part is not knowing whether my breasts would settle at some point and maybe I would be fine..what if I have amputated parts of my body unnecessarily? I hope you have a great Dr....I asked mine If she had a crystal ball two weeks ago. that would be helpful😄. Good luck to you as you navigate this journey.






Rebekah -whatididwhilewaiting.blogspot.... Microcalcifications,ALH, Lump, Strong Family History. Excison on 11/30. 10/2012 2 Fibroadenomas. Core needle Biopsy. Surgery Excisional Wire-guided biopsy 11/15/2018 Dx 11/1/2010 Surgery 11/15/2018 Lumpectomy Dx Surgery

Page 1 of 1 (17 results)