Clarification please on LCIS?
Comments
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Hey there, you ladies in the know? I've read occasionally on your threads about LCIS, but am confused on alot of it.
Formost....is it my understanding that the risks it poses are pushing many of you to have PBM's as a result of LCIS only? Is this risk the same when invasive and in situ are found together? What is the risk of the contra breast in LCIS? IS it (risks), the same with Invasive vs LCIS for the other breast? It's all way too confusing at this point to even read about. My mind has reached a saturation point with cancer and just can't comprehend all this right now.
Any info would be appreciated.
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Hi wishiwere,
My BS told me that LCIS in one breast makes a woman 10X more likely to get invasive bc (in either breast) than the average woman. That statistic alone was not enough to lead me to PBM. I've have bumpy fibrocystic breasts for years. Each month they palpate differently. Being at increased risk, each new lump would have me quivering until all the diagnostics were repeated. I hate the wait. In addition, I am relatively young (44), in good shape, and I have great insurance through my husband's company. I don't want him to be a slave to the job, just so I can go through MRI, mammograms, and possibly biopsies each year.
I never felt pushed into PBM, but I've felt great relief knowing I have dropped my risk. LCIS made me feel helpless and victimized. Now I'm strong "like bull." By the way, the pathologist found LCIS in both breasts that didn't show on mammography.
Hope this helps,
Carol(AZ)
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10 X? So, you never had the invasive component, but were deemed 10X more at risk? Than the average jane I assume? Is that lifetime risk or annual? Sorry for all questions, I'm just curious, as numbers are not something I've asked about other than the Recur % from the oncotype test. And that was only based on the larger IDC/DCIS lump. The ILC/LCIS lump at 1cm wasn't even considered in that test, so I'm wondering. I appreciate your info. thanks for sharing.
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Hi Wishiwere,
LCIS is a lifetime risk ( does not diminish over time ) and is different from invasive lobular carcinoma. LCIS is currently thought of as an nonobligate lesion meaning it may go on to invasive lobular, it may remain dormant or it may indicate a rather global instability in the breast tissue--an environment that may support abnormal cell growth thus leading to an increase incidence of any type of breast cancer. No one really knows for sure which women with LCIS will go on to have invasive cancer and which women will not progress. Statistically, most women with LCIS will not develope invasive cancer ( about 75% ). This lack of knowledge regarding the cause or natural history of this perplexing lesion makes management very difficult.
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Okay, so...where do I stand do you think with having had the LCIS already evolve into the ILC? In that tumor or area, they found multifocal LCIS with a 1cm ILC, Atypical Lob Hyperplasia and so on calcifications and so on. This breast was removed, b/c the original tumor in another quadrant was 1.4 IDC and addition DCIS beyond that. So...with it removed, what are the chances that I'll have it in the other breast or such? Is there a site that gives this info, or do you know? I obviously am not informed, b/c I thought getting rid of the breast cut my risks by a long shot. Is this not true?
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Hi wishiwere,
Here is a link to one part of the Mayo clinic site. There is a lot of good information all over their site. I'm sure there are many like it from other specialty clinics.
http://www.mayoclinic.org/breast-cancer-risk-assessment/tissuetypes.html
Someone also posted about a site called onlineoncology or oncologyonline where you can ask questions of the experts.
Good luck coming to grips with a disease that confounds even the medical professionals.
Carol(AZ)
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Don't worry too much about LCIS in the other breast. LCIS is thought to be multifocal--frequently found in both breasts. You have cut your risk of further disease with your mastecomy removing the invasive cancer and DCIS. Any woman with breast cancer is at greater risk of future cancer in the other breast--because you had it in the first breast. Your doctor knows this and will keep a close eye on you. Now you can try and live healthy, exercise 5 times/week, eat healthy and practice good breast health to drop your risk even more. My oncologist recently told me to do the same to decrease my risk of invasive breast cancer and my tread mill has never seen so much action.
I'm sure leaf will be along with the articles that provide the statistical information that you requested.
God bless
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I'm trying not. Just after having this other lump they could all feel, but not see on mammo or US and so on, it's in the back of my mind. I'm watching it, but trying not to 'feel' often, so I can tell if there's changes. Just bothers me that the mast side had all those types and the ilc/lcis was felt, but not seen till the MRI
Just worry wart I suppose. -
The papers I've seen opine that LCIS may in a SMALL (unknown but SMALL) number of cases be a nonobligate precursor of breast cancer. But the vast majority of cancers that LCIS women get is because LCIS is thought of as a 'marker' of higher risk.
Apparently, even **IF** they only find one small lesion of LCIS in ONE breast, it puts BOTH breasts at risk. That's why unilateral treatment is usually not recommended. In other words, LCIS puts parts of the breast that contain NO LCIS at risk. Its a weird disease. Many times, LCIS is found not *AT* the 'suspicious lesion' that prompted the biopsy in the first place, but adjacent to it. Different studies give different figures, but the risk of breast cancer in the two breasts range from about 50-50, to about 70%-30% (same breast that contained the original LCIS biopsy (ie ipsilateral breast) vs the other breast (contralateral).) The slight 'edge' towards cancer in the ipsilateral breast is one piece of evidence that helps support the 'nonobligate precursor' idea.
**IF** LCIS women get breast cancer, they get a lot MORE ILC than the average person, but still, the majority of invasive breast cancers that LCIS patients get is IDC.
As far as I know they do NOT know what about LCIS puts you at higher risk.
The 10x risk is NOT NOT NOT NOT 10 times the 12% average risk of breast cancer of the average woman. It is (I've usually seen about 7x) the risk of the average woman WITHOUT any particular risk factors, which is about 3-4% lifetime risk. So 7-10x that 3-4% risk is about 30% average lifetime risk. Most of the breast cancers that are found in LCIS women are early stage.
I don't think they know what a worse family history has on LCIS risk. The numbers are too small, as far as I know. If you have a known BRCA mutation, I am guessing that would really 'trump' the LCIS risk. Certainly people with a known BRCA mutation in general have a higher risk for breast cancer than plain LCIS.
That said, their prediction models are 'only slightly better than the roll of a dice' **for any particular individual.****
http://community.breastcancer.org/topic/47/conversation/692321?page=1#idx_8
I have LCIS and ALH, and I take tamoxifen. I have other medical issues that put me at more risk (for death) than my LCIS. -
leaf,
I just wanted to say that whatever your other medical issues are, I hope you are well and that you will let us know if there is anything we can do for you.
My best,
Kimber -
Thank you. I'm trying to see a doc who specializes in my rare disease in Sept. (she's co-authored several papers on it.) Its even rarer than LCIS, but, unlike LCIS, there is absolutely nothing shown in placebo controlled trials that affects the disease process.
I am so very thankful at this website that people can say what they feel - good, bad, indifferent.
I have a lot of decisions to make in the next year or so.
Thank you so much for your very kind wishes, Kimber. -
Oh gosh, leaf, I didn't know you had other stuff going on. <<<<hugs>>>>
Wishiwere--you and I have similar diagnoses--I had a 2.7 cm pleomorphic ILC surrounded by pleomorphic LCIS that totalled about 5 cm when taken altogether. My LCIS also went right up to the chest wall, and I had to have muscle taken out. As far as I can tell, my ILC grew directly from my LCIS. The surgeon said I had a 30% chance of an ipsilateral invasive tumor.
At first, the surgeon and onc recommended bilat masts, but after four trips to tumor board, they decided I was at more risk for mets, and to just monitor for local recurrence/new primaries. So after much thought, I decided to just go with the lumpectomy. Some days I'm afraid I'll regret my decision--I'm afraid of getting a new primary that's very aggressive, but I'm also not mentally ready to do the bilats, so that's where I am with it right now.
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Okay, I'm really confused as to what exactly plemomorphic is? Here's what part of the bx said on the ILC lump:
Invasive Lobular Carcinoma, Tubulo-Alveolar type.
Multifolcal Lobular carcinoma In situ.
Fribrocystic change with Atypical Lobular Hyperplasia and intraductal calcification.
So Is this classic type lobular, or what? I'm so confused. Even reading it's confusing and I understand many in the field don't agree either.
Any help to clarify this stuff further? Can you tell I'm still confused? I've never heard pleomorphic mention till this site, so it's all chinese to me yet....
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Wish, Based on the path that you supplied above, there is no mention that your LCIS or ILC are pleomorphic.
Pleomorphic forms of LCIS and ILC may be more
aggressive variants and require a more aggressive rx approach.
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Thanks Misty. That's what's confusing with all this. There is very little on the path report about this. The primary tumor they staged/ graded with is the IDC/DCIS that was a larger, and when they did the MRI guided she took 11 core samples and basically the finally mast report couldn't find any residual tumor, so it wasn't even mentioned in the path for that
I just want to know coming out of this all I can as to what to watch for, what I'm at risk for and so on. Basically after tx, I was not told anything in regards to f/u besides seeing the onco and bs every 3-6 months with a mammo yearly. That doesn't sit well with me, b/c this ILC was not seen on digital mammos or on US, only when the MRI was done, so I'm fearful it will be missed again. Just the new way of life I suppose -
Wishiwere, am I reading it right that you have ILC/LCIS and IDC/DCIS?
Regarding the tubular-alveolar ILC--no, it isn't classic ILC, but it has a good prognosis. The link below is to path info on ILC, and it says this subtype is roughly the equivalent to a grade 1 IDC:
http://surgpathcriteria.stanford.edu/breast/inflobcabr/printable.html
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Yes, Nash. Original, largest lump was 1.7 IDC with 20% DCIS. Stage 1, grade 2. Second was felt but not seen in mammo or US, only during a pre-op MRI. That was ILC with LCIS and ADH involvement. the ILC portion was 1cm, not sure of the other parts and pieces. Thanks, I'll read the site you sent, I appreciate all your ladies help. I'm not a slow learner by any sense, but dang this stuff is so confusing sometimes! Can't blame on chemo anymore as I've been out of that since feb, but geesh....I love science, just can't take the ambiguities of this mess!
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I hear ya, Wishiwere! It is confusing, and frankly, the docs don't get it all, either, as far as I can tell.
BTW--you had a busy boob!
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I had to read that twice to understand what you were saying? I thought boob? WHO? ROFL. Yes, it was a busy one. And you know? IT's been just as busy today! I swear someone keeps taking it down from that shelves they store them in and feathering it! It's been tickling all day! Embarrassing I swear! I itch and don't even consider it a boob anymore (no recon) and I'm sure it's making heads turn! 
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Hi,
I was under the impression that LCIS was a 1% per year risk of BC to either breast. Not sure if it has changed since my dx. I did get IDC in the other breast.
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You are correct jetj. The risk is generally quoted at 1% per year. I continually read a range from .05%-1% per year to 1%-2% per year. The risk applies to both breasts.
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So? If it's say.... .5-2% per year, and my family (on mom's side live to 94 average), then what's my chances of a recurrence in the right breast? Is there a max I hope? Geepers, creepers!
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wishIwere----I was diagnosed with LCIS at age 46--I fully intend to live into my 80's (God willing), so at 1%/year for 40 years that's 40% anyway. I have a feeling my actual risk is probably higher due to family history (mom had ILC), so mine is probably more like 50%. Hopefully the tamox is cutting my risk down to about 25% and it's further lowered by 2 to 3 more % points since I lost my ovaries 3 years ago. My 5 years of tamox is done in less than 4 months, then I will be starting on Evista for prevention after I take a little break for a few months. I"m also going to go for genetic counseling and testing later this summer. And continue with my alternating schedule of MRIs and mammos every 6 months.
Anne
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Wish, In all the reading I've done, I see risk set at around 25-30% for LCIS. Other factors could come in to play like family history which may raise your risk. Most women with LCIS, however, do not go on to develope invasive cancer.
Your risk is different since you had invasive cancer. I wouldn't worry too much about the fact that you have LCIS. Your risk is based on your invasive cancer not your LCIS. Do everything you can to prevent recurrence like exercise and lots of vegtables everyday.
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Thanks ladies.
I am doing what I can to prevent a recurrence as we all are, but just want to further understand this stuff. I know I have dense tissue as was in the other one, and worry too about only having mammos to what the other one :O Just me...a worry wart! I do have a limited fam. hx with an aunt (dx in her 70's) and great aunt in her 50's or there about). Of course, there are only one female in each side of the family going back a few generations till mine to, so that's not really helpful Thanks again ladies!
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Hey Wish, I worry too--I know how you feel on that one! Sorry I push diet and exercise but I am truly amazed at how we can cut our risk of bc and/or recurrence by altering our diet and exercising a few times/week. I'm sorry I never paid much attention to these lifestyle issues until now--but it's not too late for any of us.
Take good, good care.
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Hey, NP. I understand that too. I eat way to much in fat calories. I'm a chocoholic #1, first and foremost. Although I was glad to hear dark chocolate was a good thing, I'm sure it's not the same when not done in moderation. It's my downfall
As for exercise, I never 'exercised' to do an exercise till this surgery and what not. I'm very active in gardening and have been known to roof, side a house, plaster, dry-wall and so forth. Anything but plumbing! EEK! No way~ I haul my compost, and manure and soil and mulch bags, and except for the 90 patio pavers (which I had to have help with), I've always been strong till these past 3 years. It's hard to accept I can do the things the way I used to, but am learning better ways now.
Ask for help mostly.I started riding a bike this past week and get about 1.5 miles daily. Takes forever (10 minutes nearly), b/c I've lost a lot of muscle mass over the winter again after surgeries, but it's getting less painful to do it!
so, hopefully I can build up to the longer runs soon. Just not one who ever had to, and now it's hard to change my ways, but I'm sticking with it longer than I thought I would! -
Well, I exercise 6 days a week, always have, eat a healthy diet and have a BMI of 18. Didn't seem to do much in the cancer prevention department. While it's good to exercise and eat well, my theory is that if one is genetically predisposed to bc, as seems to be the case for me, it's going to happen no matter what one does.
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See there! So....I guess my dark chocolate fits are just another form of prozac to get me through it all
I'm riding every night. Kind of told myself, I can't have the chocolate till I do the ride WOrks for me! -
Wish, Every little bit helps! I have also started riding my bike--it's fun when I'm not suckin in air to save my life! And I really feel I am doing some good for myself--I may have to try your chocolate trick!!!
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