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Topic: LCIS newly D.C. -- Question about Hormone Receptor Status

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

Posted on: Aug 5, 2017 04:20PM

light1candle wrote:

I have been lurking for a couple of weeks to learn more as I had a CNB in late June that came back with ALH dx. I had an excisional biopsy in late July and the path came back with LCIS and ALH (and papilloma, and radial scar). My hospital breast center has me assigned to a BS who seems very optimistic and seems to downplay the LCIS dx. From her point of view I guess this seems like a small thing compared to what so many of her patients are going through.

In looking over the path report I remarked that I did not see any mention of estrogen or progesterone status listed, and she said they don't always do that test since it costs money and doesn't really change their treatment recommendations (increased surveillance, anti-estrogen meds). I was kind of shocked. Is this what everyone else has experienced? Is it possible to ask them to go back and run the test for hormone receptor status? I think I read that most LCIS is ER+ (>90%) but that some is not. Is that right?

The reason it matters to me is in trying to decide whether to take the anti-estrogen meds -- why would you ever subject yourself to the possible SE if your LCIS is not ER+? At 64, I may be older at first dx than some and I have quite a few "co-morbidities" -- I have lupus with a blood clotting disorder, renal insufficiency (CKD level 3), severe osteoarthritis of my hips, etc. The BS agrees that I am not a candidate for tamoxifen or raloxifene because of my tendency towards blood clots, so she is suggesting exemestane (Aromasin). But it can cause bone and joint issues and I already have plenty of those, so I am trying to do my research to see if I think that the BC risk reduction is worth the possible SE. Which brings me back to the hormone receptor status of my LCIS -- if I knew I was ER- then it would be crazy to even take them.

Thanks! I would appreciate hearing your ideas or commentss

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Aug 5, 2017 04:56PM MelissaDallas wrote:

I am seen through an NCI Designated Cancer Center and receptors were not tested on mine. I had a prior PE so was also not eligible for tamoxifen and raloxifene. I was offered Aromason but have chosen not to take it. I'll take my increased risk for breast cancer over increase in my already high cholesterol and bone loss. For now I think my cardiovascular risk outweighs the benefit, plus I hope I can continue living alone the rest of my life, and a broken hip would probably preclude this. If I take Aromasin I'd probably have to go on statins & bone building drugs. I'm also very leery of drugs that can be hard on the liver since I had large volume ascites with ovarian cancer. The newest NCI treatment gudelines suggest annual mammogram alternated every six months with a clinical breast exam. MRI can be added when appropriate. The drugs are recommended and do very significantly reduce risk, but apparently are a very hard sell, as not very many women are choosing to take them.
LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 5, 2017 04:58PM MelissaDallas wrote:

For the record, I would have taken raloxifene and my breast surgeon said it would be fine, because my PE was solely from my illness & not from any clotting problems. I was, in fact, tested for them. MO still said no

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 5, 2017 08:27PM light1candle wrote:

Hi MelissaDallas. Thanks so muchfor your reply about not getting receptor status on your report from an NCI cancer center. Maybe I was wrong about this and this isn't just my hospital's policy? Maybe it is just assumed that LCIS is most likely ER+ so testing is not done and drug recommendations are made based on the high probability of ER+ status? I like your thinking about the weighing of quality of life issues. At my age, a possible stroke or broken hip seem worse than BC and make me understand why some choose PBMX to reduce their risk.

I'm still very new to this journey, so still trying to gather some facts to help me decide what to do.

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Aug 5, 2017 08:42PM MelissaDallas wrote:

Bottom line:most women with LCIS don't go on to get cancer, and even estimating the risk isn't much better than flipping a coin

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 7, 2017 11:44AM NicolaSue wrote:

I'm not an expert but I have LCIS and DID have hormone receptor testing and it came back at 96% oestrogen positive. However I was told that this should have no bearing on my decision as to whether or not to have chemoprevention as LCIS only flags up the higher than population likelihood of getting breast cancer in the future. If one gets it it may not be oestrogen positive (in other words the features of original LCIS and any subsequent BC may not be similar). That's if I've understood correctly. I am new to this and still at the asking question stage myself.

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Aug 8, 2017 04:39PM light1candle wrote:

Thank you for your reply, NicolaSue. So... it seems like some health care providers *do* provide testing for the hormone receptors and some do not. Since LCIS is *usually* ER+, I guess the chemoprevention recommendation is probably warranted in most cases. I just wish I had that information as I am trying to decide whether the BC risk reduction is worth the risk of the SE's.

My path report says most of my LCIS is of a low grade (I assume "classic" LCIS) but at least one lesion was listed as "intermediate, NG grade 2", and the word "pleomorphic" was used. If what I've read is correct, sometimes higher grade (usually NG 3) pleomorphic lesions are often ER-. Still, chemoprevention would probably be worthwhile if I can avoid/tolerate the side effects.

Thanks again!

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Aug 12, 2017 02:22PM NicolaSue wrote:

The way it was explained to me was that if plemorphic is found (did I spell that right) then yes that dictates a different path. I was advised to have my slides looked at by two pathologists however to be sure of the findings as the different paths for the two types of LCIS is quite stark.

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Aug 13, 2017 10:43AM - edited Aug 13, 2017 10:48AM by leaf

This is from a UCSF (University of California San Francisco) lecture in 2012, so is about 5 years old, but it gives one of the best overviews I've seen (at least of the different classes and pictures of the cells) I've seen. I don't think things have changed TOO much since then; maybe some people have slightly newer ideas about management (page 14). http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...

Note: I don't have PLCIS (pleomorphic lobular carcinoma in situ) that I know of, (MRI biopsy pending if it is approved), so I am NOT an expert on PLCIS.

I had my excision slides re-read by an NCI certified place, and they essentially said the same thing as my local hospital, just adding that I had DH (ductal hyperplasia, not atypical), and 'features of ALH'. But, of course, this was Classic LCIS, not pleomorphic.

They normally treat you for the worst feature you have. In other words, if you have classic LCIS and pleomorphic LCIS, they'll treat you for pleomorphic LCIS.

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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Aug 13, 2017 03:13PM light1candle wrote:

Nicola Sue and Leaf: Thanks again for your replies. Leaf, that was a great link which I have bookmarked, thanks so much.

You both have me thinking about getting a second opinion on my pathology slides and maybe talking to an oncologist about the various drugs and their SEs. I was sort of surprised that my appointment was with the breast surgeon and not an oncologist. She basically handed me my path report and said see you in a year for a mammogram. Oh, and talk to you primary care dr. about taking exemestane for chemoprevention (after I said I was not a candidate for the SERMs because of clotting problems related to Lupus). Like I said before, I had to specifically ask about whether my hormone receptor status was tested, and she didn't know and had to look at the path report, then said I guess not -- it costs more to do that test and doesn't really change our treatment recommendations. I'm not convinced that she had read all the way to the end of the report where "pleomorphic" is mentioned briefly. (I hadn't seen that either because I was only just given the report.) I had read enough online to know that LCIS women are often seen more often, and may be referred for breast MRI's, so I asked about that. She said insurance will only pay for MRIs if your risk is above a certain level. It was only then that she said she guessed she could refer me to someone in the office who could run me through the risk calculator. When the nurse ran me through the risk calculator and my risk came up at 50% / 10 yrs. then finally the Dr. suggested that I should have a breast MRI in 6 mos. I know that I am a lot better off than many of her other patients, but I do have questions that I would like to have answered and want to be proactive about my care.

Late June: Mammogram w/BIRADS 4 suspicious microcalcifications; CNB dx ALH, with intraductal papilloma. Lumpectomy in late July, path report below

Diagnosis

Breast, right, wire localization lumpectomy

-- Lobular carcinoma in situ (see microscopic)

-- Atypical lobular hyperplasia

-- Intraductal papilloma, large/central type with duct ectasia

-- Radial scar and proliferative fibrocystic changes

-- Biopsy site changes

-- No evidence of invasive carcinoma.

Microscopic Description

Histologic section show multiple foci of atypical lobular hyperplasia surrounding the biopsy site cavity and the intraductal papilloma. Some of the foci show lobular expression and solid growth pattern, consistent with LCIS. LCIS are predominantly of low nuclear grade (classic type) with one focus showing an intermediate nuclear grade (pleomorphic type, slide A16). E-cadherin immunostains (x2) are negative within the in situ component, confirming the lobular nature. There is one area of adenosis that exhibits involvement by LCIS (slide A13). P63 immunostain demonstrates the presence of myoepithelial cells within this area and shows no evidence of invasive carcinoma. The other proliferative fibrocystic changes include usual ductal hyperplasia, adenosis, columnar cell changes and microcysts. Microcalcifications associated with LCIS and benign breast tissue are identified.

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Aug 15, 2017 12:57AM cyclegal wrote:

Hi light1candle, I was diagnosed with LCIS through my care at Stanford and did not have hormone receptor testing on either my needle biopsy or my excisional biopsy.

I'm not quite sure if you caught NicolaSue's point that an LCIS diagnosis means that we are at higher risk of any type of breast cancer, not particularly cancers directly related to the LCIS. So, in that respect, perhaps it doesn't matter whether your LCIS is ER+ When considering these medications.

It sounds like you need to move beyond your BS to get the information you are seeking for your treatment. My BS provided me good information and valuable advice about LCIS, but it wasn't until I saw an oncologist where I felt that I was getting all the information I needed to decide my treatment route.

I am not an expert by any means, just sharing my insight gained since my LCIS diagnosis early this year.

Dx 2/2017, LCIS, Right Surgery 5/8/2017 Lumpectomy: Right Surgery 8/23/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 15, 2017 03:24AM leaf wrote:

Just to give you some possible numbers.

About 2 out of 3 breast cancers are hormone receptor-positive. Their cells have receptors that attach to the hormones estrogen (ER-positive cancers) and/or progesterone (PR-positive cancers). For these cancers, high estrogen levels help the cancer cells grow and spread. www.cancer.org/cancer/breast-c... So, it sounds like tamoxifen is used in both ER+ and PR+ breast cancers.

Of the 10,304 women with primary LCIS included in this study, 9949 (96.5%) patients had HR+ tumors, and 355 (3.5%) had HR- tumors https://www.ncbi.nlm.nih.gov/pubmed/28467490 so the overwhelming majority of LCIS women were ER+ and/or PR+. (In this particular paper, they found the LCIS HR- group had more subsequent breast cancers.)

I do agree with cyclegal's point that if you are considering antihormonals, I think in general, its best to see an oncologist. An oncologist is trained in internal medicine, and a breast surgeon is trained in surgery. In general, surgeons are not particularly interested in medications that are not immediately used in surgery; an oncologist will have more training and experience in immunology/biochemistry. However, in the NCI center I went to for a 2nd opinion, all their LCIS patients who chose tamoxifen were treated by their breast surgeon.


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 12, 2017 06:55PM Mandycat wrote:

I had similar pathology report. I did request a second opinion from IU Med Center and got a different diagnosis. I did a lot of research on this. PLCIS has a worse prognosis. It is aggressive. It is often associated with micro invasion that may be difficult to find. Mine was but I did turn out to have a small area of invasion. I'm so greatful mine was removed and I opted to do radiation. Most of mine was classic Lcis. My invasion was less than 1 mm

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)

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