LCIS and Very Dense Breasts
Ok- I am beginning to wonder. Do a large portion of those of us w/ LCIS have very dense breasts? This is a poll. I am 54, been dx'd w/ fibrocystic breasts since age 19, and always have comments on my MRI and mammo's about how it is hard to interpert the results due to "very dense breast tissue." How many of you are in the same boat. I wonder... is there a connection between the two conditions?
Comments
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mykidsmom--I don't know if there is a connection between the 2 or not, I've never heard of one. I have LCIS, but fortunately I have very "fatty" breasts that are very clear and easy to read by mammo. I have heard that tamoxifen makes breast tissue less dense. I have about 4 weeks to go to finish up my 5 years of tamox.
Anne
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I am 54 also, was diagnosed with LCIS at 51. I asked my radiologist on my last biopsy, and he said I had 'dense, but not very dense, breasts." A major university opined that I 'shouldn't have MRIs, even a baseline' because of my extensive scar tissue from my solitary excision.
LCIS is an unusual condition, so it is difficult to get significant findings. I read in an Up To Date (a subscription service that surveys several hundred journals) opines that there was some speculation that that the risk factors for LCIS were similar to that of IDC: family history and breast biopsy.
For women already diagnosed with LCIS, Up to Date said one study thought family history was a risk factor, but a re-analysis of the data showed that family history was only important if the diagnosis of LCIS was made before the age of 40. Others have found that family history had no bearing on the subsequent risk for invasive cancer for LCIS women.
Pleomorphic LCIS (PLCIS) may be in a different category, according to Up To Date.
I have a weak family history, and had no previous breast biopsies before my LCIS was discovered.
Interestingly, the Up to date now opines that in subgroup studies of the 3 largest prospective,randomized, double blind studies of high risk women, all of which enrolled LCIS women, that the LCIS women who took tamoxifen did have a lower incidence of invasive breast cancer. (The tamoxifen women had about a 40% lower incidence of breast cancer.)
HOWEVER, the tamoxifen LCIS women did not have ANY survival advantage compared to the LCIS women who used surveillance alone.
I agree with Anne; I have not heard of an association between LCIS and breast density, and I have heard that tamoxifen in general may make breast tissue less dense.
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leaf, Is there anyone doing research with an interest in LCIS specifically--and I don't mean "in situ" breast cancer as a group--just LCIS as the unusual lesion that it is! In my reading, It apperas Dr David Page from Vanderbilt is considered an expert. Also, Dr Li from Fred Hutchinson Cancer Research Center. Otherwise, who is doing the research?
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Hi Mykidsmom -
Well as I have been told repeadily I HAVE EXTREMELY DENSE breasts, with an extremely complex parenchymal pattern, and both breast (right worse) are extremely cystic - I was DX with LCIS, ALH along with the ILC in L - R breast just this week ADH and low grade DCIS. So I don't know either if they are related -but thats my info.
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Mykidsmom,
I also have been told repeatedly that I have dense breasts - my mammo reports always came back with the same comments as you mentioned. I do think they are less dense since being on tamox and the densest area was removed with lumpectomy.
(((( 1Cathi ))))- you were just diagnosed this week in your other breast? I am so sorry - my thoughts are with you! Your picture is beautiful. I know you will get through this.
My best to you,
Kimber
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Hi Misty! I am not sure who is doing any current research on LCIS - as far as knowing its natural history, treatment, etc.
I am guessing that Li et al are interested in the epidemiology of in situ cancers-most of the papers I've seen from that group are on both DCIS and LCIS.
Port et al at Sloan Kettering did the MRI study.
I will try to look into this further - I just got DSL, so I'm trying to set up my new computer, and all that entails.
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Thanks leaf!
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Well, I've heard of Sanford Barsky before. He's interested in how cancer starts...http://www.cbcrp.org/RESEARCH/PageGrant.asp?grant_id=1836
Looks like he's now in Ohio. https://pro.osu.edu/profiles/barsky.3/
He's not the first author on this paper on IBC,but his name is on it. (Probably done in his group.) http://ajp.amjpathol.org/cgi/content/abstract/ajpath.2008.071214v1
He does seem to support the idea that stem cells cause cancer. http://www.economist.com/science/displaystory.cfm?story_id=11487414
http://www.economist.com/science/displaystory.cfm?story_id=11487414
They don't cite any literature on this, but its written by 2 PhDs. You don't have many doubts what their opinion is! http://www.center4research.org/wmnshlth/2006/dcis10-06.html
Maybe this is a co-worker with Li et al in Seattle.http://www.asbd.org/images/LCIS%20-%20Anderson.pdf.
Here's a clinical study in Europe on LCIS genetics. http://clinicaltrials.gov/ct2/show/NCT00536718
Imaging + LCIS at the Mayo, by invitation only.http://clinicaltrials.gov/ct2/show/NCT00620087
Here's a study of invasive BC when associated with LCIS.
http://clinicaltrials.gov/ct2/show/NCT00581750
And another (looks like this is purely epidemiological). http://clinicaltrials.gov/ct2/show/NCT00146536
That's something, anyways.
P.S. Sorry about the font/style/etc. I don't know why I have shrinking font sizes in my post. When I write them they are normal. I have a Mac, so maybe this website is not optimized for that.
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Leaf--do you know if the MBI and the BSGI are the same? Everything I've read so far sounds so similar. I wonder how long it will take for either one of them to become available to the general public. Do you know of anyone who is doing them outside of a clinical trial?
I got good news yesterday--clear mammo and US. I finish up my 5 years of tamox in about 3 or 4 weeks, then I'll be taking a short break before starting on Evista.
Anne
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leaf--OMG--this will keep me busy and out of trouble for awhile!!!! Thank You so much for the information--and I thought I had read every article on LCIS ever written!!! lol!
Misty
ps-You'll be proud to know I am taking a graduate pharmacology course this semester. With each passing class, I gain a deeper appreciation for pharmacists and the difficult work they do to keep hospitals running and patients alive!
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Dilon Technologies is bringing innovative new medical imaging products to market. Dilon's cornerstone product, the Dilon 6800, is a high-resolution, small field-of-view gamma camera, optimized to perform BSGI, a molecular breast imaging procedure which images the metabolic activity of breast lesions through radiotracer uptake. Many leading medical centers around the country are now offering BSGI to their patients, including: Cornell University Medical Center, New York; George Washington University Medical Center, Washington, D.C.; Northwestern Memorial Hospital, Chicago; and The Rose, Houston. For more information about Dilon Technologies please visit http://www.dilon.com. http://www.medicalnewstoday.com/articles/79404.php
On the Dilon site, one webpage starts with this:
"Breast-Specific Gamma Imaging (BSGI), or molecular breast imaging, evolved from a related nuclear medicine imaging procedure of the breast, scintimammography, and both are based on the enhanced uptake of sestamibi in tumors within the breast. For years, scintimammography showed considerable promise to be a strong diagnostic tool in the early detection of breast cancer. However, the limitations of the procedure as performed with large general-purpose gamma cameras did not allow for the reliable detection of sub-centimeter lesions or direct correlation to mammograms, thus limiting the capability of this promising diagnostic tool. The Dilon 6800 overcomes these limitations and can reliably detect sub-centimeter lesions, down to 3mm, and provide the same views as mammography. Another major benefit of the Dilon system is its compact design and mobility, allowing for same-day evaluation and imaging at the point of care."
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Leaf--thanks for in the info. I'll mention it to my oncologist next visit--maybe he'll have me go for MBI instead of MRI. It's supposedly less expensive and has less false positive results, but it involves additional radiation which I like avoiding with MRI. Oh well, every technology has it's downside,
Anne
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I had a regular mammogram twice, then a more complex mammo, then the MBI and finally an MRI and they said they STILL could not tell what it was (i have the dense breasts too). The place where my surgeon saw the lump the best was on his sonnogram machine! It looked like a gray nerd candy and very tiny. It's amazing that something soooooo small can cause a terrible thing. When he removed the lump he found another next to it even smaller that he went ahead and removed. He has told me if I went to get a mammogram 6 months sooner they probably wouldn't have seen it and 6 months later it would have been a much worse outcome. I go back in November for my blood count and get another 3 month refill on the tamoxifen. Hopefully everything is still going very smoothly.
I have read about the menstrual cycle differences with the tamixifen but not anything about premenopausal symptoms. I have the sweats so bad, especially at night, that I am on two medications to help alleviate that along with a couple other meds for other reasons. I feel I open my medicine cabinet ready to make a pill cocktail.I take so many I'm scared to take sinus medicine or even aspirin. Do any of you have so many other pills to take besides tamoxifen?
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Carlatreat - Sorry, I cannot speak up on taking tamoxofin. I decided against going that route. But I can relate to hot flashes. I cannot imagine them being worse that what I had just w/ menopause. They had finally calmed down in the spring, only to kick up again this fall. I think this time it is related to nerves. I am scheduled for a bilateral prophylactice mastectomy in December and cannot wait to have it behind me. Between this situation and some yicky stuff at work I am ready to freak out! Good luck w/ your meds. - Jean
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carla----I just finished my 5 years of tamoxifen last week. I took it before and after my total hysterectomy. So thinking back to before my surgery, my SEs were really very mild hot flashes, some insomnia and achiness; similar complaints to women going thru a natural menopause. All annoying, but certainly manageable. I take ibuprophen as needed for the achiness--I had chronic neck and back pain before tamox, so I can't really blame tamox for everything! I take melatonin to help the sleeping. (For a while, I tried evening primrose oil and it seemed to help, but then I was OK not taking it.) My SEs increased after my surgery, but that was due to the loss of estrogen from losing my ovaries, not the tamox. Tamox does have some serious SEs, but they are very rare and occur in less than 1%. It really is a good preventative medication, despite the problems that you hear about. I would just recommend that you have a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.
Anne
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Hi all, just thought that I would add....I was dx at age 43 with LCIS and DCIS and IDC. Fibro cyctic disease seems to run in my family. No bc family history, except for an aunt on my father's side, and she was dx at age 70. I also had....very dense breasts. Having dense tissue is just another hoop that you have to jump through to make sure nothing is going on in there, you know, it's like trying to find a needle in a haystack, but, they can't even find the haystack. I have often wondered if there was a connection. If I could have a do over, I would definitely have gotten breast mri's to make sure everything was clean.
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Carla, just though I would mention, I am on tamoxifen, and I won't take anything other than fosamax and calcium, chemo really did a number on my bones. I am too afraid of drug interactions. I would be talking with your pharmacist or doctor to make sure you don't have any interactions. The nurse oncologist suggested that I take vitamin e to ease some of the nasty hot-flashes that I have been experiencing, but my daughter, she is a pharmacist, said that vitamin e could possibly interact with the tamoxifen, so, I would rather suffer with the hot-flashes.
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Just diagnosed with LCIS in both breasts after an elective reduction and lift. God works in mysterious ways. I have had fibrocystic disease for MANY years (am 50 now). Mammograms and sonograms were always tough to read. Beasts have always been dense and lumpy. Short answer to your question is "yes". No family history of breast cancer. I will see a specialist in Charlotte next week and then make some decisions after that visit. Not freaked, just bummed. This is not my first dance with cancer. Have had melanoma twice before. Destined to live life looking over my shoulder. Any advice gladly welcome and taken. I'd especially like to know if there are any specialists you all can recommend. I am a New Englander originally and find the best medicne to be on the left and right coasts. I'll go where the "good ones" are. Happy and Healthy New Year to all!
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knitone- Remember you don't have cancer so you have plenty of time to make the right decision for you and take your time if you need to. Do allot of research and get allot of opinions until you are sure what you want to do. As you will see on this website you will get a lot of diff opinions.
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Some people with LCIS on this site have been happy with Duke U. (I've never been there as that is quite a distance from where I live.)
Karen is right on the money. There is hardly anything about LCIS that is NOT controversial (including the name.)
I went to the nearest NCI certified cancer center, and was unhappy with their High Risk breast department. I liked their genetics dept and other departments, though. Everyone is different.
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Hi, I too have 'very dense breasts', I'm 38 I had a left lumpectomy with LCIS, (5.6cm) intraductal hyperplasia and sclerosing adenosis. My oncologist said I'm at 40% risk to get invasive cancer. She recommended radiation and tamoxifen. Since I'd like to have another child, I decided against tamoxifen. I went ahead with radiation. During my radiation treatments, I discovered a lump in my right breast which (as well as my first lump on left) did not show on Ultras., so my surgeon did right lumpectomy; adenosis. Now 3 months later 2 new lumps in right breast which my gynecologist can feel, went for mammogram and ultrasound. Report again said very dense breasts makes it hard to tell, they didn't show up. Now I'm very scared and don't know what to do.??????
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My bc was multi-focal - ILC and LCIS. Since I was 18 I was told I had very dense tissue. When I turned 40 I started having annual mammos. For the next 5 years a "clump" of dense tissue was continually mistaken as JUST dense tissue. Turns out that it wasn't dense tissue - it was a 3.9cm malignant tumor. I don't want to scare you girls, but had I known all that I do now...I would have insisted that the "clump" be biopsied at the time of my first mammo. I have recently read that dense tissue DOES put you at a greater risk of developing bc...in addition to the fact that it can be hard to "see through".
taraleec - I would request a biopsy. Again...don't want to scare you, but better safe than sorry.
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taraleec----did you have any DCIS or invasive bc found along with the LCIS? Just wondering, because radiation is generally not recommended for LCIS by itself.
Anne
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LauraGTO - I'm sorry to hear about your ILC and LCIS. Did you have a lumpectomy or mastectomy? How are you doing now? I'm trying to get into a different Dr. since my gynecologist and I can feel them but surgeon says he can't feel the lumps and mammo and ultrasound says dense breasts. I know there's something there. And to awb- No DCIS, I had LCIS with radial scar, sclerosing adenosis and intraductal hyperplasia and my ONC said my risk of it progressing further was at 40% and she strongly recommended radiation, so I did it. But I didn't imagine something would happen with the opposite breast this soon. I'm soooo stressed and confused.
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Taraleec - You have good reason to be stressed and confused. My heart goes out to you. Know that you have a lot of options and there are ladies here who have chosen just about any option you chose. Talk to your doctors and continue to post. Hugs my dear! - Jean
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taraleec---after googling "radial scar" I found that it is generally thought to be a benign condition, but sometimes associated with ADH or DCIS, so perhaps that's why they recommended the radiation? (I'm NOT saying that is what it is, I'm just wondering, as everything I've read says no radiation for LCIS). Have you had an MRI since you discovered the new lumps? Praying that it's nothing more serious and that you get good news soon.
Anne
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taraleec - Just so you know... you can click on anyone's screen name...and read about our treatment, surgeries, etc. But...to answer your questions. I am doing really well! I just got back from my "every 4 month post treatment Onc visit"... blood work looks good - so far so good...no mets. Back when I was dx'd...I had no choice but to have a Mast. Then when my Sent node came back positive, I had to have an Ax node dissection...they took 11 more nodes - they were all negative. About 8 months after I finished chemo and radiation, I had the so called "good" boob removed because of having had LCIS in the bad boob, the percentage of getting it again was rather high. I hope this answers your questions. Hang in there...feel free to post ANY questions... that's what we're here for. And some day... you'll be answering questions here for newbies! Best wishes to you.
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Just wondered, is MRI more accurate than mammos and ultrasound? My first and 2nd ultrasound didn't show a mass, when in fact I did have a mass the first time which was LCIS, and my 2nd was benign, I went back to my surgeon after my most recent mammogram and ultrasound, since it shows no mass, and he says he doesn't feel the lumps he doesn't see reason to go back in.(Although my gynec. can feel them) I asked for an MRI, so it's to be scheduled. Does anyone have experience when mammos and ultrasound didn't show mass, but MRI does? I just can't get a grip on this LCIS.
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Taralee - I am not really sure about my LCIS. I had bad findings on all three media, but the bx that actually got the LCIS was with the MRI (MRI-guided excisional). Either way, I would say, yes, MRI's are generally better at findings abnormalities than the other media. At least the small ones. Best wishes. - Jean
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taraleec-----MRI, US, and mammo all "see" things differently----they all have certain levels of accuracy, but really can't be compared to each other--it's like comparing apples to oranges. MRIs are reportedly better at detecting the invasive bc's, while mammos reportedly are better at detecting the non-invasive bc's, US are very good at telling if cysts are fluid or solid filled, for instance. That's why it's good to have different tests to be able to utilize to see the whole picture of what's going on. It's good you are going for the MRI--hopefully nothing more serious than the LCIS will be found. I go for my next MRI in March.
Anne
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