Hello my LCIS compatriots

Hi again--sorry for the interruption. It stormed all night, but we got some much-needed rain!

Misty, I think that's where Lillie Shockney is. She is wonderful and I'm sure will be very helpful. Once when I thought we might be moving to that area, I e-mailed her to ask how to get set up with their program. Even though it was the day before a holiday and she was supposed to already be gone for a 2-week vacation, she e-mailed me back within a couple of hours. I'm sure you'll be in good hands there.

Besides the MRI, I also have a mammo every year. I'm not on a 6-month alternating schedule, because it just hasn't worked out that way, but I do see the onc or her PA at least 3 or 4 times a year. Some of these visits are to perform the FNA's that are part of the study I'm in.

It seems to me that it's not unusual for a local oncologist not to be overly familiar with LCIS. I once lived in an area that had one oncologist for the whole town. The poor guy was vastly overworked, since he had to treat every kind of cancer that came in his door. He just didn't have the time to be up-to-the-minute on everything. So it's good that you're going to a cancer center.

I'm coming along with the decision--thanks. It really helped to talk to another of my doc's patients last week.

Best of luck to you--have a great Sunday.

It is not possible to know the true incidence of LCIS, because, as you say, we don't know how many women are walking around out there that have it and don't know it. As you know, it is usually an incidental finding on a breast biopsy.

I don't think tamoxifen was used at all for women who had not had bc before the NSABP-1 study in 1998. I think when tamoxifen was used in the 1980s, it was usually reserved for metastatic breast cancer. From the NCI website about LCIS, I think routine PBMs for LCIS went out of favor when it was found lumpectomies + radiation gave about the same survival rate as simple mastectomies in the 1990s. Anyway, the current NCI LCIS website says "Many breast surgeons consider an overly aggressive approach." http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6



This is one of the few abstracts I've found that actually commit to an incidence number. http://www.ncbi.nlm.nih.gov/pubmed/12353815



This data was all collected prior to the 1998 NSABP-1 study. I assume part of the increased incidence may have been due to the increasing use of mammograms, and/or increasing biopsy incidence.



Its really frustrating/frightening to go to a major NCI certified institution and get such radically different recommendations than the other women here.



I just got an appointment at the same major institution for my other rare disease for next Sept, so let's hope they have a better department than their high risk breast cancer clinic. The specialist who diagnosed me with my rare disease said there was nothing that could be done at this point, so its not like time will make a difference. (I did have a good experience with their genetics dept.) At least the doc (I'll call her Dr. X) I'll be seeing has co-authored several papers on my rare disease (with its many types.) And I even found one abstract where people with my rare disease may have an increased incidence of breast cancer! (So my LCIS may be interesting to Dr. X.)

Dr. X's secretary was pretty weird when I made the appointment. She wanted a *letter* from my GP (like they have time?) and asked what I was seeing Dr. X for. "Do I have autoimmune?" (I was at a loss. I have several diseases you could consider autoimmune. You could probably consider LCIS autoimmune.) But maybe she processes everything from the entire department, and the nomenclature is tough.

Lucky---I think they used to recommend BPMs automatically for LCIS, but from what I've researched that doesn't seem to be the case anymore.  All 4 of my doctors (onc/gyn/bs/pcp) feel that BPMs are too drastic for my situation and feel LCIS can be managed well with close monitoring and tamoxifen. (and that's even with having a mom who had ILC!).  If they are not even sure of your diagnosis yet,  aren't they being a bit premature to suggest a treatment???? Because if many consider BPMs  too drastic a choice for LCIS, then it would follow that BPMs would certainly be considered too drastic a choice for just atypia alone. ( atypia at 4 to 5x has only half the risk of LCIS at 8 to 10x).

I've often wondered about the question of radiation too. Despite the controversy over whether LCIS is only a marker of higher risk or an actual precursor of invasive bc, my fear is that they will suddenly say "oh, we should've been treating it more aggressively like DCIS all along" (deep down I think it IS probably a precursor, but that's just my opinion and not medically substantiated.) Please don't think I'm critisizing your docs, just trying to play devil's advocate and point out both sides.  I've already had one irreversible major operation (TAH/BSO with immediate surgical menopause) and really wished I had researched it more and gotten more medical opinions before proceeding.

Anne 

We need to know a lot more about so many things, but unfortunately, the funding is often not there. No one wants to have to pay. There are other, much more deadly cancers, like pancreatic, that have about as many deaths/yr as breast cancer (about 34,000 for pancreatic vs about ?28,000 for bc.) But pancreatic is so much more deadly (I think most die within 12 or 16 months after they are diagnosed.) I know there are a lot of other very deadly conditions too-statistically most of the average population of women will die of cardiac disease (I think.) So its hard to know where to put priorities.



(Sorry this post is not very organized.)



I think there are many papers (from many institutions) that look at genetic differences/similarities between LCIS and ILC. http://www.ncbi.nlm.nih.gov/pubmed/11274638





This abstract compared the LCIS and ILC in the same patients. http://www.ncbi.nlm.nih.gov/pubmed/15197797



This 1997 paper hypothesizes there may be types of LCIS that progress and other types that do not, so this is not a new speculation. They obviously have more data than they did 10 years ago. http://www.ncbi.nlm.nih.gov/pubmed/9042790

****

Re:radiation



These are the only abstracts I could find that documented pure LCIS treatment with radiation (both in France.) but I didn't search immensely hard. I don't think I've ever found more than this.

http://www.ncbi.nlm.nih.gov/pubmed/15691636

http://www.ncbi.nlm.nih.gov/pubmed/9769400



This abstract talks about the 182 pure LCIS patients in the NSABP-17 study that were only treated with lumpectomy and surveillance (1996), so I may have my dates wrong when they started changing to a tamoxifen option/when these studies were. http://www.ncbi.nlm.nih.gov/pubmed/8839545.





This may be a 2005 update on the same group of pure LCIS patients. http://www.ncbi.nlm.nih.gov/pubmed/14716756

Looks like they point out the many, many problems with defining LCIS and ALH. "Surprisingly, Page et al.,[14] in a more recent update of their previous data that included additional samples of ALH, found that IBTRs of invasive carcinoma at 10 years were approximately 3 times more common compared with our findings. It should be noted, however, that at least 10% of their database contained examples of ALH with well-developed forms of LCIS. Page et al. used the designations LCIS, LN, ALH, and another somewhat vague term, atypical lobular carcinoma, synonymously. Although our results suggest that Grade 1 LCIS may be regarded as nosologic verification of ALH as an entity, we continue to consider the distinction of ALH from LCIS highly subjective or, perhaps, expressed more easily in words than in actual practice. Because of this subjectivity, we have chosen not to discriminate between the two entities. It is our practice to indicate that Grade 1 LCIS may be regarded by some as ALH; however, in our experience, it has not been deemed predictive of an increase in the incidence of subsequent recurrence of invasive carcinoma."



" LCIS was graded according to the degree of involvement of the lobules, as reported previously,[1] with slight modifications according to the criteria proposed and illustrated by Tavassoli[10] for lobular neoplasia (LN). LCIS 1 denotes the presence of the characteristic cytologic elements of LCIS that involve a portion or all of the lobular ductular lumens with slight or no distension. According to this definition, LCIS 1 includes some lesions designated as atypical lobular hyperplasia (ALH). LCIS 2 resembles LCIS 1 except that all ductules exhibit modest distension. Overt ductular and lobular distension with areas that exhibit little or no interductular stroma were designated LCIS 3. It should be emphasized that residual ductules may be encountered in all types. Tavassoli[10] regards lesions in which the ductules are replaced completely by signet ring cells, regardless of the degree of distension, as a subtype of LCIS 3 (LCIS 3-2). We have not encountered such a lesion in this cohort, although the presence of lesser numbers of signet ring cells as well as so-called targetoid forms are not uncommon. It should be noted that the highest grade of LCIS was used for analyses when more than one was encountered in a particular sample."

(p. 239-240)

To me, it sounds like ALH vs LCIS (by their definitions) could make a difference, but they couldn't find any other significant predictors of who would get bc.


" The average annual rate for patients with Grade 3 LCIS was high (1.85) and was similar to the average annual rate for 15 patients who had Grade 2 LCIS (1.83). The rate for 4 patients with Grade 1 lesions was comparatively low (0.55). These differences did not reach statistical significance (P = 0.075). However, the rates for all IBTRs were statistically significant when patients who had Grade 2 and 3 LCIS together were compared with patients who had Grade 1 LCIS (P = 0.023) (Table 3). The grade of LCIS was not significantly related to invasive IBTR, per se; however, as is also shown in Table 4, all grades of LCIS (P = 0.037) and combined Grade 2-3 LCIS versus Grade 1 LCIS (P = 0.010) were predictive for the endpoint of invasive IBTR and for IBTR consisting of DCIS with or without a component of LCIS. None of the other pathologic variables were significantly related to IBTR; and none of those variables, including grades of LCIS, were related to all CBTRs or to CBTRs consisting of invasive carcinoma or its total with IBTR consisting of DCIS."

\

Well, the 2007 ACS guidelines for MRI *screening* say that for LCIS it is controversial.  (I assume this is *without* a strong family history.) http://caonline.amcancersoc.org/cgi/content/full/57/2/75

I went to an NCI-certified major university in 2007 and they said that they didn't recommend even a *baseline* MRI for me as I have 'too much scar tissue'.  (I have ALH, LCIS, and a weak family history.)  This major university said their standard of care for LCIS patients is biannual clinical exam, yearly mammos, and they are offered tamoxifen/antihormonals.

Different places have different 'standards of care'. 

Sounds like we had our bx about the same time. I had mine last Tuesday, got the path results last Friday. I am leaning towards PBM, but still need to talk over my options w/ the oncologist. My surgeon initially has recommended very close monitoring and tamoxofin. I am post-menopausal, and am at a high risk for uterine cancer, so I doubt I would go the tamoxofin route. Good luck and let us know how your appointment goes w/ the surgeon.