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Topic: Are you aware of anyone with LCIS who got Stage 4 Breast Cancer?

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

Posted on: Jun 2, 2018 12:23PM

Lea7777 wrote:

This question is posed to anyone out there.

I posed this question -- Are you aware of anyone with LCIS who got Stage 4 Breast Cancer? -- to my breast surgeon. In 22 years of practice she could not recall a case. While this is anecdotal evidence, I thought it was worth sharing. I will ask this question to other medical professionals I encounter going forward.


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Jun 2, 2018 12:37PM MelissaDallas wrote:

In all my years here I can only think of a couple (maybe) that went on to develop DCIS or invasive cance after having bee diagnosed solely with LCIS.. None with LCIS only who went on to develop imetastatoc cancer with no "in between."

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jun 2, 2018 03:33PM - edited Jun 2, 2018 03:53PM by Lea7777

I also posed this question on the "Questions about Stage IV" forum and the response was very similar to yours, MelissaDallas. You offered some insightful analysis over there too.

Also, continuing on with your observation, I should give the rest of the BS's comment, which was that she recalled some Stage 1s and some 2s low grade. None of this was based on a search of her patient database, but it offers some perspective. And a postive perspective I might add!


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Jun 3, 2018 10:13AM light1candle wrote:

Interesting question. I will try to member to ask my BS about this when I see her later this month.

There was a very old study (1969) of 46 women who were diagnosed with LCIS in the 1940’s & 50’s. This was back when mastectomies were the recommended treatment and (I think) before anti-hormonal drugs or the more advanced imaging techniques that are available now that will hopefully catch any invasive cancer at an early, more treatable stage. I am not suggesting that these results would happen now, with current imaging, preventatives, and treatments for early invasive BC, but it does indicate that some cases of LCIS went on to become stage 4 invasive cancers when they essentially went untreated. Kind of a no-brainer, I guess: of course even low grade, early tumors can spread widely if left alone over enough years. But it does reinforce for me the value of doing “something”, as either a preventative or to keep up with the imaging in order not to let early cancer slip past without being noticed

https://onlinelibrary.wiley.com/doi/abs/10.1002/1097-0142(196911)24:5%3C1081::AID-CNCR2820240534%3E3.0.CO;2-D

Abstract

Current follow‐up information is presented on a unique group of 46 patients first diagnosed as having lobular carcinoma in situ during the period 1940‐1952 and observed from 4 to 27 years. Six patients each had radical mastectomy; the remaining 40 had no treatment after a diagnostic biopsy. Subsequent cancers developed in 33% (15/46) patients. The 15 patients developed 20 cancers; an incidence of 13% (6/46) bilaterality. Seventy‐five percent (15/20) of the cancers were infiltrating. Two patients (4%) are dead from metastatic breast cancer; 2 others (4%) are living with metastases. Only half of the 20 cancers appeared in the first decade and the remaining half appeared up to 22 years after the original diagnosis of lobular carcinoma in situ. The evidence continues to accrue proving that lobular carcinoma in situ is a preinvasive form of breast cancer which should be treated by modified radical mastectomy.


Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jun 3, 2018 12:18PM - edited Jun 3, 2018 12:49PM by Lea7777

Thanks Light1candle! You are putting your research skills to the test to find this. Even though this is an old study, for anyone unable to take the drugs, it might offer more insights than for those on the 5+ year course of hormonal chemoprevention.

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Jun 4, 2018 02:06PM - edited Jun 4, 2018 02:18PM by leaf

Well, this IS 'iffy', but in this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49346... at a single institution, from 1980 to 2009,

They state in Table A2, with a total population of 168 LCIS patients that went on to get a subsequent cancer, there were

Stage III 5% (n=3)

Unknown 8% (n=5)

"one patient presented with inflammatory breast cancer with a tumor size of 12 cm." That doesn't sound good, although they don't explicitly say its stage IV, or in what year this occurred.


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 4, 2018 02:13PM - edited Jun 4, 2018 02:14PM by leaf

This doesn't say 'stage IV' but they 'did die of breast cancer'. In this 1992 study https://www.ncbi.nlm.nih.gov/pubmed/1642534

We reviewed the courses of 250 consecutive women with lobular carcinoma in situ of the breast entered into the Surveillance, Epidemiology, and End Results program of the Michigan Cancer Foundation, Detroit, Mich, between 1973 and 1986. No patient had known invasive cancer at the time of initial entry...The average follow-up was 93.1 months...Seventeen patients died, two of breast cancer, two of unknown causes, and 13 of non-breast-related causes

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 4, 2018 06:17PM Lea7777 wrote:

Thanks for that info Leaf and you are right that 12 cm does not sound good.

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Sep 26, 2018 08:45PM Lea7777 wrote:

I recently asked 3 doctors at a premier medical/cancer/research facility about patients who started with LCIS or atypia and ended up with metastatic cancer or died.

Breast Specialist-in 25 years experience: no deaths and invasive breast cancers that developed from were Stage 0 or 1.

Radiologist--in 5 years experience, no deaths, did not recall if there were cancers that started as atypia/LCIS.

Breast Surgeon—Not sure how many years of experience but I'd guess about 10—no deaths and no metastasized cancers.

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Sep 27, 2018 04:48PM light1candle wrote:

That's interesting to me. Is it because we become so vigilant that any cancer that develops is caught at a very early stage? Or is it because the cancers that do develop from LCIS tend not to be extremely aggressive cancers to begin with?

I think I read that the majority of cancers that do develop from classic LCIS tend to be ER/PR+, Her2 neg. and therefore have a favorable profile, though sometimes the cancers that develop from pleomorphic LCIS or florid LCIS may be more aggressive types (sometimes ER/PR- etc.).

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Sep 27, 2018 05:56PM - edited Sep 27, 2018 05:57PM by Lea7777

Your readings and your conclusions on vigilance are right, Light1candle and I think that is a big part of this relatively good news. Perhaps these are the reasons that the breast surgeon at this very respected clinic told me she did not believe any doctor there would even perform a PBMX on me at this stage. This stage being ADH, ALH, Classic LCIS and age 58.


From way back in 1990, I found some mortality info:

http://ultra-medica.net/Uptodate21.6/contents/mobipreview.htm?43/14/44265/abstract/82

There are no randomized trials addressing the comparative efficacy of surveillance versus prophylactic mastectomy in a population of high-risk women. In a meta-analysis of published series that included 389 women with LCIS who were followed for a mean of 10.9 years, breast cancer-specific mortality was 2.8 percent among women who had initial excision followed by surveillance and mastectomy for recurrence; this value was not statistically significantly different from the 0.9 percent disease-specific mortality rate in women initially treated with mastectomy for LCIS

Bradley SJ, Weaver DW, Bouwman DL. Alternatives in the surgical management of in situ breast cancer. A meta-analysis of outcome. Am Surg 1990; 56:428.



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Oct 1, 2018 05:40PM Elisabeth_W wrote:

There are two studies to check out on this topic.

Breast Cancer Prevention Strategies in Lobular Carcinoma in Situ: A Decision Analysis. Stephanie Wong, et al. Cancer, July 2017

Lobular Carcinoma in Situ: A 29 year Longitudinal Experience Evaluating Clinicopathologic Features and Breast Cancer Risk, Tari King, et al., Journal of Clinical Oncology, Vol 33, Number 33, November 25 2015

If you just google the titles, any free access will be displayed (I have access to a college library). I had a Stage 1A ILC at 1.2 cm this summer. After my lumpectomy I still had remaining LCIS and ALH in the margins. That's the standard of care surgically. So I went on a research tear to understand LCIS more fully since it's still there.

The trick, in summary, is hormone therapy to reduce the odds of developing a cancer and vigilant surveillance for the rest of one's life. The prognosis is better than ductal in the short term, then worse than ductal in the 10+ year time frame. ER+ and PR+, help as SERMS or AIs are the first line of defense. The jury is still out on whether LCIS is a precursor to ILC (far from always) or just a marker of increased risk. Non-obligate precursor (some will, some won't) is what my BC surgeon said to me and seems the most accurate.

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Nov 1, 2018 06:02PM - edited Nov 1, 2018 06:03PM by Lea7777

Not a study, not peer reviewed, not empirically rigorous, but I ask every breast professional I encounter if they are aware of any women with LCIS who went on to get metastasized cancer or who died. I just asked another one.

He is a radiologist who did a needle biopsy on me. He is nearing retirement after a long career in radiology. He knew of none. He qualified his answer by stating he did not necessarily follow one woman from initial diagnosis through many years of screening. Still, he knew of none throughout his career and said it would be very rare.

That's one more opinion of someone in the know "for the record."


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Dec 14, 2018 06:08PM Lea7777 wrote:

Adding to the anecdotes: A mid-40s radiologist doing a diagnostic consultation after a mammogram replied to my question of "how many have gotten metastasized cancer or died" by stating he was unaware of anyone who died when starting out with LCIS or atypia. He believed it was because those with this condition (at least those he encounters) are kept on a "short leash" so it is detected early. He also stated that the cancers that did occur were many years after diagnosis from LCIS. I asked him about PBMX and he said if I were 40, that might be a good idea. He said he would not recommend it at age 59 in part because cancers that occur in older women "tend to be more indolent."

He stressed how much greater risk I am at, using cautionary tones and repetition, all in a professional and caring manner, but he wanted to get that message across. He was very much in favor of hormone suppressant of some type.

I will continue to update this thread so the responses that I receive in my interactions with breast professionals can be viewed by all.

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Apr 1, 2019 07:23AM ---faithhopelove--- wrote:

This thread is making me hopeful that if anything is found on my MRI guided biopsy hopefully it will be treatable and with a great outcome. You woman are wonderful.

Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 1, 2019 09:47AM Lea7777 wrote:

Faithopelove, your vigilance with surveillance will greatly enhance your outcome if more treatment is needed.

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Apr 3, 2019 06:34PM jessie123 wrote:

I may be confused about the question, but LCIS is still in the lobe so how can it metastasize? It's confined -- isn't it? My recent lumpectomy showed ILC and LCIS so guess I had a little lobe break. I've probably had the LCIS for years. How was yours diagnosed?

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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Apr 3, 2019 08:25PM - edited Apr 3, 2019 08:26PM by Lea7777

Jessie123, you are right that LCIS itself will not metastasize or kill you. But LCIS means you are at higher risk for breast cancer. Even if you get invasive breast cancer, it won't kill you unless it metastasizes. So my question for the experts is if they know women with LCIS went on to get invasive breast cancer which metastasized to become Stage 4? Fortunately the answer is hardly any, but more than 0.

"How was yours diagnosed?" My LCIS was diagnosed by excisional biopsy.

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Apr 4, 2019 06:48AM jessie123 wrote:

Lea -- but did they discover yours via mammogram? What prompted your excisional biopsy? Since they can't even see ILC on many mammograms I'm wondering how yours was found. Mine only showed up on after surgery pathology. Mine didn't even show up on MRI. I wonder how many years I've had the LCIS and never knew 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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Apr 4, 2019 06:56AM jessie123 wrote:

One more question --- now you have me thinking more about ILC. Does all ILC start from 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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Apr 4, 2019 07:26AM MelissaDallas wrote:

jessie, LCIS/ALH are usually incidental findings on biopsy for something else seen on imaging. They don't or rarely show on imaging. I had sclerosing adenosis with calcifications. The LCIS was an incidental finding.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Apr 4, 2019 09:14AM - edited Apr 4, 2019 09:15AM by greenie

@Jessie123 here is a link to a discussion on your question.

https://community.breastcancer.org/forum/95/topics/788325?page=2

I think it's a valid question and one that is too often glossed over with the standard LCIS reply, "LCIS is not breast cancer and most women with LCIS will not develop invasive..." I can say it in my sleep.

But if 5 to 15 percent of all invasive cancers are ILC and all ILC started as LCIS, then I'm not sure how having LCIS can not be considered a precurser to ILC.

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Apr 4, 2019 09:44AM kitkit wrote:

Sisters,

DO NOT BE COMPLACENT about LCIS. I had LCIS in 2010 with a lumpectomy followed by seven years of exemestane. Two months ago, after being followed up every 6 months with mammo or MRI I was diagnosed with Stage 4 BC. It was not seen ever on my mammogram, but enlarged lymph nodes were found under my arm in a MRI. Other tests (PET scan etc. ) confirmed metastases in my chest wall lymph nodes as well as one met in my T6 spine.

I am beginning shortly a UCLA trial that combines a new drug with Ibrance and Letrozole.

Insist on getting MRI or ultrasound to follow up after your LCIS diagnosis. Do not rely on mammograms. YES, it is possible for LCIS to change into Stage 4 with no intermediate steps.

kitkit
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Apr 4, 2019 11:14AM Lea7777 wrote:

Kitkit, I do wish you the best going forward and thank you for sharing your personal situation.

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Apr 4, 2019 11:17AM Lea7777 wrote:

Jessie123, My LCIS was not seen on a mammogram. I had other conditions such as a radial scar that were revealed by a mammogram. A needle core biopsy showed ALH and ADH. Then an excisional biopsy of the same area showed LCIS.

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Apr 4, 2019 11:38AM - edited Apr 4, 2019 11:39AM by ---faithhopelove---

KitKat I'm thinking of you and hoping all goes well!

With regard to greenie, I don't think LCIS is the beginning of ILC. I believe LCIS is an entirely different pathology. LCIS never becomes Cancer. However, I always described the fact that we are high surveillance is just the fact that are cells are acting weirdly.

Am I incorrect????

Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 4, 2019 12:15PM light1candle wrote:

Hi faithhopelove, It is my understanding from a number of journal articles that I have read that LCIS can sometimes be considered a *precursor* lesion to ILC. LCIS lesions and ILC lesions in the same patient can sometimes (not always) have the same genetic/molecular profile showing the same cascade of mutations. These lesions are essentially "clones" of each other, with the ILC lesions having gone on to acquire other mutations that may have caused it to become invasive. Occasionally the invasive disease is located immediately adjacent to the previous biopsy sites that revealed the LCIS. ILC is a somewhat uncommon type of breast cancer (10-15% of bc cases) but it is more common in LCIS women than in the general population.

Of course, many (most) women with LCIS never go on to develop ILC or any other type of cancer. The only thing that docs seem to be able to agree upon is that LCIS raises your risk of future breast cancer in both breasts, and that cancer can be DCIS, IDC, or ILC, and that it *may* in some cases be a precursor lesion.

KitKit, thank you so much for your reminder not to be complacent. I am about two years out from my LCIS diagnosis. I had a sensitivity reaction (hives) to the gadolinium contrast from my first MRI, so I am not sure about repeating that experience on a regular basis but I am not confident in the other imaging that is available to me. I am also probably a poor candidate for the risk-reduction meds, and so have been trying to decide about preventative BMx. My breast surgeon said that I shouldn't be in any hurry to make my decision. Your personal story is a very good reminder to take this diagnosis seriously. Thank you again for sharing.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Apr 4, 2019 12:42PM Lea7777 wrote:

You've done a great job, Light1candle, with your explanation.

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Apr 4, 2019 12:43PM MelissaDallas wrote:

LCIS is a nonobligate precursor. Women with LCIS do not necessarily get breast cancer, and when the do they do not necessarily get lobular breast cancer.. Sometimes they get ductal breast cancer.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Apr 4, 2019 03:17PM ---faithhopelove--- wrote:

thank you for that information light1candle!

On another note, today I went in for the MRI biopsy. During it the doctor could not find the 4:00 o’clock enhancement so she told me she would take what she sees at 12:00. I DID NOT EVEN KNOW THERE WAS ANOTHER! Then she said, “oh yes your breast lite up” . Ugh. She said most in the report were written to be follow up and the one to that was to be biopsied she could no longer see. I’m glad the worst oneis gone by why so many?


Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 4, 2019 05:08PM leaf wrote:

I have several spots of LCIS/ALH. Several scientists on a podcast I follow (This week in Virology, etc) say that science can't answer 'why' questions. But they do know that LCIS is usually multifocal (many spots in one breast) and often bilateral (in both breasts) because before about 1990 they commonly did bilateral mastectomies on LCIS patients, and they could look at the mastectomy specimens.

One caveat I see with just asking experienced doctors about how many people they've seen that start with LCIS (with nothing worse like DCIS or invasive) and seeing how many women end up with stage IV breast cancer is that the incidence of LCIS is pretty low. Yes, older data, but In this study, they found an incidence of about 4-5,000 cases per year in the USA in 1999-2004 (excluding about 5 states ). (See Table 3 https://www.researchgate.net/profile/Mary_White7/p...) or about 0.4-4% of benign breast biopsies, or about 2-3 in 100,000 women. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934644/

At my surveillance place, which is in a metropolitan area, about 5 years ago, if I remember correctly, I calculated they must diagnose something like 1-4 LCIS patients per year. I'm sure there are at least 10-20 breast cancer associated (i.e. oncologists or breast surgeons or radiologist who does breast biopsies) doctors at that hospital. So each oncologist or breast surgeon or radiologist is not going to see many LCIS patients.

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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