History of Dense Breasts Linked to ILC?
Comments
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I was dxd with ILC triple negative on 2/07 with mets in bones. I was told at the time that I would be on chemo for the rest of my life since I was er/pr-. After 2.5 years of chemo the oncologist at MD Anderson tried me on Arimidex because he said my cancer in my bones "acted" like it was er/pr+ (slow growing, stayed in bones, weak response to chemo) even though the pathology report of the breast tissue said triple negative. We tried to biopsy a bone lesion but were unable to get enough tissue to test (bones very hard after 2.5 years of zometa). After 3 months of Arimidex there wasn't enough of a response so they decided I had to go back on chemo.
Understandably, I would like to keep trying another anti-hormonal treatment because it allows a higher quality of life. I noticed that some of you found your ILC after breast reduction surgery. I too had large dense breasts, especially for my overall weight/size. I think I remember reading that higher estrogen levels are associated with dense breast tissue. I want to ask my oncologist to try me on Femera which directly blocks estrogen rather then the Arimidex which blocks the production of estrogen. Right now I am on Xeloda and we are watching my tumor markers. I want him to add Femera and then watch the tumor markers to see if it helps.
How many of you had dense breasts and were dxd er/pr+? I am trying to find a connection so that I can talk my doctor in giving this treatment a try. At MD Anderson they thought that the mets might be er/pr+ even though the tissue in the breast was er/pr-. Right now I am working with an oncologist close to home as the expense of traveling to MD Anderson got to be too much.
Any info or experiences would be welcomed.
Terry
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Hi Terry. I have had "very dense" breasts my whole life until they were both removed (2001 & 2008) due to DCIS and ILC. My last recurrence was ER+ and I am on Femara (had my ovaries removed and hysterectomy in 1991). I had numerous ultrasounds because of the "fiberous" masses that were always benigh. I remember the tech saying it was hard to tell what was what on the Ultrasound. Don't know if that helps or not...but that's my story and I'm sticking to it.
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Hi Terry. I have had "very dense" breasts my whole life until they were both removed (2001 & 2008) due to DCIS and ILC. My last recurrence was ER+ and I am on Femara (had my ovaries removed and hysterectomy in 1991). I had numerous ultrasounds because of the "fiberous" masses that were always benigh. I remember the tech saying it was hard to tell what was what on the Ultrasound. Don't know if that helps or not...but that's my story and I'm sticking to it.
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hi Terry I am like survivor07 - very dense breasts, mx in 2001 due to DCIS, then on other side in 2009 due to diagnosis of ILC (along with LCIS and DCIS spots).The years in between two diagnoses were spent with regular mammograms, ultrasounds, and a lumpectomy. Am now on tamoxifen.
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Hi Terry,
I was told that I had very dense breasts also. Since I quit taking BC pills, they aren't so dense anymore so I think it was all that estrogen that caused my problem. I would advise that women avoid taking birth control pills for as long as I did, 19 years. I also loved to eat beef, drink beer and I never had a weight problem so I didn't exercise as much as I should have. Good luck with your treatments!!
Nancy
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Terry, I was always told that my breasts were extremely dense, I'm guessing partly because I was on bc pills for many years and then HRT (Prempro) for 10+ years. And I had multicentric disease that was a combination of IDC+DCIS+ILC (the largest lesion had areas of all 3), plus 2 smaller ILC lesions, and a tiny lobular lesion (multicentric disease). The path of my node was the IDC.
Are you in Southern CA? If so, have you been to UCLA? That's where I've been treated, and I think they're wonderful. Deanna
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Hi, Terry; I extraordinarily dense breast tissue, even post-menopause. I did not take birth control pills for birth control as a young woman, but I did take them during perimenopause to reduce the breast pain and tissue swelling that the hormone roller coaster caused.
I had a mix of IDC and ILC and was 90% ER/PR+, and Her+ too.
Cathy
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Nancy - We are both part of the secret society of women who were naturally thin with dense breasts - and who enjoyed using birth control to chemically engineer our hormones. Never thought any of that was risky. Bummer. Recently, they have been more outspoken about exercise (or lack thereof) and its link to bc, but I am CONVINCED that one day, BCP's will be implicated. Perhaps not the current formulations, but it's the early versions of Demulen that I ingested which were chock full of estrogen that I'm concerned about. In my early 20's, I managed to have C breasts while weighing only about 107 at 5'4". Their consistency is changing a lot with stopping the BCP's at diagnosis and starting Tamoxifen, which is a good thing.
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I have dense breasts too. I had a breast reduction at age 20--still have dense breasts (though somewhat smaller ones). I took birth control for only about 4 years.
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count me into the dense breast bunch.....plus I was super flat (less than AA) which made mammos difficult....was always called back fore re-dos. I do wonder if my ILC was therefor awhile and missed by mammo.....my last mammo was digital, and that's when they found the ILC....
I also was on bcp's prior to my dx, but not for their real reason.....mine were to lighten my heavy periods. My ob/gyn also had me cycling 3 packs at a time so I wouldn't have a period in an effort to control my menstrual migraines. Probably a stupid thing to do, though my onco said not to beat myself up over it.....
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I also had dense breasts since puberty. They were also cystic especially just before my period.
Roseann
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me too- dense fibrocystic breasts pre and post menopause. breasts would become tender and swell w/ pms. ILC, er+/pr- and her2- in the left breast, which had been larger than the right for as long as I can remember (I think er was only 70%, pr was 0.)
Used BCP (ortho-novum 7-7-7) for years on and off in the 80's and 90's, in part to help with pms and painful heavy irregular periods.
fibroids external to the uterus removed in 2004, menopause a year later, ILC w/ liver mets summer of 2009 (liver biopsy showed same receptor status.) Also had dermoid ovarian cysts (the kind that some are reporting after taking tamoxifen, which acts like estrogen on the ovaries) 30 years before the mbc, removed the day after my 17th bday.
Not only are we exposed to estrogen etc in BCP, it seems to have been widespread throughout the environment for some time. Am sure it has something to do with the rate of bc being so high in the US.
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My breasts weren't dense at all. I was on the early version of the pill for 9 years. I did have a little lumpiness before a period on occasions in my smallish B cups which later became C cups when I put a little weight on. I didn't reach menopause till late and the 4cm ILC could barely be felt at diagnosis. The Mammo and US showed nothing, nor did the CT apart from oedema after the biopsy came back positive. The MRI showed the tumour clearly.
I wonder if others who didn't have dense breasts will read the thread as I thought it might not interest me and nearly didn't read it.
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Terry
Just to clear up something you mentioned in your initial post - Femara and Arimidex are both aromatase inhibitors and both work the same way. They block the production of estrogen in the fatty tissues of the bodies of women whose ovaries have stopped producing estrogen (post menopausal). Usually the only difference in the choice of which AI to take, apart from onc preference, is determined by SEs. Those women who have bad SEs sometimes find that a different drug will give less SEs.
Tamoxifen however works differently in that it blocks the estrogen from getting to the surface of the cancer cells - the body can still produce estrogen either from ovaries or fatty tissue but it doesn't get to the cancer cells, hence it is usually given to pre or peri menopausal women.
I was post menopausal at dx and the onc said I could choose Femara or Tamoxifen. If one AI hasn't worked for you presumably another wouldn't either. Maybe Tamoxifen is what you could try?
Best of luck with your treatments
Rae
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My ILC didn't show up on mamogram and on the report it said I have dense tissue. I am ER/PR+
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had dense breasts.....normal mammos for years....first call back and end up being Dx with Bc.... something suspicious on the mammo, but it was the US that found the BC....I took the pill in the 70's for a few years then again for 3 months to deal with perimenopause symptons (side effects of pill were worse than the perimenopause) a few years before dx....never overweight....my BC was highly ER/PR+
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I had high density breasts, never took birth control pills, had multicentric DCIS, LCIS, ILC and cribriform in >60% of the breast. Mammos before it was caught showed negative for years. Both invasives were strongly ER/PR+. I'm perimenopausal.
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I didn't realize I had dense breasts until I just read my mammography reports. My ILC is also ER/PR +.
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Every time I had a mammo ( for at least 10 years) they would call me back in for a second look because of my "dense" breasts. Well,sure enough,the last time it turned out to be ILC.I was shocked . I wish they had opted to do an ultrsound sooner.
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I don't know how dense my breasts were, but I was subject to fibrocysts in my twenties and thirties, and in fact thought one of them might be a tumor. However, the gynecologist believed it was just a cyst, and in a week or two it went away.
It was an area of "suspicious density" on a mammogram that triggered the ultra sound and biopsy which led to the DX of ILC, but the tumor could not be felt.
Thanks to lumpectomy, my left breast is now smaller and firmer than it was. My right breast is soft and flabby rather than dense.
My ER/PR is listed below. According to the Oncotype DX test, E was highly positive.
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