Hello my LCIS compatriots
Comments
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I saw my oncologist for the first time this week. I declined Tamoxifen for now. Will revisit in 3 months. He has only 1 or 2 women with LCIS in his practice. Don't think he knows what to do with me. This was discouraging.
My surgeon will have me back for CBE every 3 months for 2 years ( then what the hell will he do with me? ) My goal is to have MRI/mammo every year alternating one every 6 months--hope he agrees. Could I ask what kind of surveillance schedule you are following? Is it reasonable to want an MRI every year--this is a lifetime risk.
Thanks
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Hi, Misty,
Yes, it is reasonable to have an MRI every year. I do, but I'm in a high-risk program at an NCI Comprehensive Cancer Center. Do you live near one of these? If you do, it would be well worth it to at least have a consult there. Even if you have to travel, it still may be worth it. I used to live 3 hours away from mine, although I have since moved closer.
Here is a link to a list of those centers: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html
We are starting to have a thunderstorm here so I will close for now. Be back later.
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Thanks lucky. I live near JHU and plan to enlist in their high risk clinic. Makes sense to have an MRI every year ( and mammo )--not much else you can do!
I appreciate your response and hope you are doing well with your decision making process.
It is about to storm here too! Talk later.
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Hi there. My onc, the head of his department, in practice at least 28 years, when I asked how many LCIS patients he has had, said 'not many'. But maybe this is because tamoxifen was found to be an effective preventative for high risk women in the NSABP-1 trial in 1998. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6
I think automatic prophylactic mastectomies started going out of favor in the early 1990s.
So, before 1998, I am guessing that few, if any, women would have gone to oncs to get tamoxifen.
(At the major institution I went to, they said at their place, breast surgeons prescribe tamoxifen, not oncs.)
At the high risk clinic at my nearby major institution, they said 'I have too much scar tissue to get MRIs', even a baseline one.
They said their routine care of LCIS women was biannual clinical exams, and yearly mammos. Tamoxifen or raloxifene was offered.
Prophylactic mastectomy was NOT recommended. Maybe it is if you have a severe family history. (I have a mild family history.) But I had a lot of issues with this consult. I couldn't even get them to send a copy of the consult to my onc. After I called several times, and even when I went there and made an in-person request at their medical records department. This was NCI-center. -
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.
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Misty--when I first went to my oncologist (will be 5 years in Oct) he didn't really seem to know what to do with me either. He said he sees a lot of bc patients in his practice, but only 1 out of a 100 has LCIS, it's that uncommon. He said a lot of women never get referred to an oncologist for LCIS (that was then; I think things have changed a LOT since then and most do go to onc; that's a good thing) and that taking tamoxifen was up to me, he would support my choice either way. He had me going for yearly mammos, but the more research I did and the more I learned about LCIS and it's risks/difficulties with detection/controversy over high risk marker or possible precursor of invasive bc, I did not feel comfortable going 12 months inbetween mammos with only breast exams. I questioned my oncologist repeatedly over time (he was initially against MRIs due to the rate of false positives and the resultant anxiety and biopsies), but finally after 3 years he put me on a schedule of MRIs alternating every 6 months with mammos. I don't know if he changed his medical opinion (of MRIs usefulness with LCIS or LCIS in general) or if he was just tired of listening to me complain! (whatever the case, "the squeaky wheel gets the grease!" and he's said that he's glad that I chose to take the tamox). In fact, the radiologist said I could go back to every 12 month schedule, but my oncologist had the final say and wants me to stick with the alternating 6 month schedule. (that's the same radiologist that recently said "you know LCIS is not cancer, don't you?" and completely changed her tune when I told her of my mom's ILC--she then said "well that changes everything completely, that's a whole different story" and said because of the family history MRIs are very important for me. I quoted her to my onc, to which he replied emphatically, "it IS a non-invasive cancer". He did not recommend BPMs for my particular situation, but thinks I should go for the genetic counseling and testing, which I'll probably do later this summer, and I will most likely be going on Evista after I finish up with the tamox (after a little break in between)--my idea which he agreed was a good plan. I see him on the alternate 6 month schedule, so in essence, I am monitored by something/somebody every 3 months.
Had I known 5 years ago what I know now, I think I would've gone for a 2nd opinion with someone more familiar with LCIS, but I'm really getting very "high risk" vigilance now, so will stick with this oncologist.Anne
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leaf, Do you think the incidence of LCIS is low due to women taking Tamoxifen based on the NSABP-1 trial--if so, what would they have been taking it for? High risk from family history or hyperplasia? I was under the impression that the incidence of LCIS and DCIS is rising.
It would be interesting to know the true incidence of LCIS but I realize this is impossible. Lillie Shockney mentions that there are probably thousands of women walking around with it and don't know it and will never get breast cancer--I take comfort in that observation.
Lucky--I agree that Lillie is awesome. I have emailed her several times and she is so quick to respond and so helpful and encouraging.
She is a breast cancer survivor herself so she has been there/done that. I hope I can meet her. My onc deals with women with invasive bc. My big worry was that I did not feel our Tamoxifen conversation was taken as seriously as I would have liked. To him, it was take it or leave it. I would like a better explanation of risks of taking the drug vs not taking it looking at my personal situation--I want to look at both sides and be given advice and guidance. ( surgeon had that attitude also--said there is no right or wrong answer )
Anne, I agree I would not be comfortable with yearly imaging--not with the fact that invasive lobular is hard to detect as well. Glad your doc came around to your way of thinking. My surgeon has me coming back every 3 mo for 2 years ( he doesn't do a very good CBE--one of those docs who does a little tap, tap, push, push done! ) I don't think I would ever be comfortable going beyond 6 mo without imaging--there is just too much at stake.
Thanks everyone. Hope you are all having a nice father's day weekend. My poor dh had to grill in the heat since he does grilling the best. I have been trying to avoid the grill and emphasize greens but caved and put some chicken on for me.
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Misty,
I have a CBE every 3 months by either my surgeon, onc, or gyn, alternating 6 months mammo and MRIs and I am on tamoxifen. My next mammo (and first one since lumpectomy) is in August. I am trying to enjoy my summer and I will start worrying in August. I have a strong family history - mother, sister and maternal aunt. I tested negative for BRCA 1 and 2, but the fact that my sister was diagnosed with invasive cancer at almost my exact age (I am 44 - she was 46) puts me in the high risk category. That and the lovely LCIS diagnosis..... -
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. -
I wonder if the idea that PBM's are overly aggressive for LCIS is beginning to change. I know the NCI still says that, but the 5 doctors that I've seen about this issue all thought that a PBM would be appropriate for me, and we're still not even sure whether my diagnosis is LCIS or atypia.
Actually, I was a bit surprised when I went for my 2nd surgical opinion. I really thought, given the questionable diagnosis, that the docs there would say that PBM was an overreaction and that I certainly didn't need one. But they didn't, and that has been a big factor influencing my decision-making process.
I think it's good that at least some doctors are beginning to take LCIS and atypia much more seriously. PBM's aren't right for everyone, of course, and I'm sure no doctor would say that they are, but I'm glad that some are starting to realize that these early changes are significant. I once had a "don't worry your pretty little head about it" kind of doctor, and at the time I didn't know any better. I hope no one else ever has to be put off that way.
Leaf, do you live near enough to any other NCI center that you could go for another opinion there? You were really not served well at the one you went to. I think Fred Hutchinson has some very LCIS-aware people, if it might be possible for you to go there.
I'm interested in something else you mentioned--about lumpectomies and radiation for LCIS. I've seen that mentioned in one or two books, but most say that radiation is not indicated for LCIS. That's always seemed slightly odd to me--has anyone actually tested this to see whether radiation might indeed offer some benefit? Just wondering if you knew of any studies on that subject. (DON'T take a lot of time to look it up--I know you are busy!) It's just one of those back-of-the-mind curiosities that I have.
I hope you will get some good answers about your other disease, too. You've really had a lot on your plate recently--I hope you get some rest and relief soon. Thank you so much for all the research you do for us. You are our guru!
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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
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Yes, I know that PBM's used to be the standard of care for LCIS. I'm glad it's not that way any more, because you are right that PBM is not indicated for everyone. I don't think my docs are being premature, though. I'm satisfied with the research that I've done and with the opinions that I've gotten. As we all know, treatment plans and choices are very individual. Tamoxifen and monitoring works so well for some people, but it just didn't for me. So that's why I'm where I am now.
I agree with you completely that LCIS may be a precursor, at least in some cases. I think there are some fairly recent studies that seem to indicate this, but of course a lot more research is needed. My onc, a researcher herself, does take a fairly aggressive approach. I'm pretty risk-averse, so I'm glad that she does.
None of us is on an easy journey, and we are all at different places. I really, really wish that there were some better options and answers for all of us.
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There are those who are seriously looking at LCIS ( at least a subportion of LCIS ) as a precursor.
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Thanks for that link, Misty. I hadn't seen that article before.
I hope that there will be increased funding for this type of research. We need to know so much more than we do about LCIS.
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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
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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 -
leaf, I noticed in this article (Cancer. 2004 Jan 15;100(2):238-44) that they grade LCIS as a prognostic indicator for invasive lobular carcinoma. I have never seen this before. Were you aware of grading for this condition?
Also, one of the articles mentioned radiating LCIS. I mentioned this to my surgeon noting that they sometimes radiate in Europe.
The articles are very informative. It looks like I cannot rest assured that LCIS is a risk factor only and some subtypes will progress. One thing I noticed in the article submitted by nash ( and elsewhere ) is that Tamoxifen is not used by "most" women with LCIS and not always recommended by their treating physicians. This is of interest to me as I am debating this treatment course.
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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."
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Misty - My MD tells me that the standard of care is MRI once a year and mammo once a year. I was just dx'd today, so I am still trying to get my arms around this dx. - Jean
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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'.
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This is interesting. Just (like 5 minutes ago) dx with LCIS in my left boob. Had LX one year ago for DCIS in the right boob. When I had my MRI a couple of weeks ago, a lesion that was there last year had grown slightly (now 6mm) and was showing more washout. Had a BX last Thursday.
The radiologist recommends getting it taken out. She went through the treatment timeline - used to be MX, but now is LX or careful monitoring. She pointed out that the incidence of invasive is higher with LCIS and with my DCIS, that definitely puts me into a higher-risk category than 'normal'.
So it goes. She asked if I still had the surgeon's phone number...yes, but I had taken it off speed-dial.
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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.
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