Read This if You Have Dense Breasts

Thanks for posting this...

I had dense breasts, and my dr. NEVER told me about the increased risk for bc for us dense gals.  I thought I was doing everything right, by getting regular annual exams which included the clinical breast exam, and then mammos after 40... but, since there was NO family hx of bc, I started mine at 42.  The next year, due to a scheduling glitch at the clinic where I went for my annual exams, I skipped the mammo., and thought it was ok, since my first one was all good...

I DO NOT trust Mammo...  I got bi-lateral mast. on May 2, 2007 and I now get annual breast MRIs, since I have saline implants, and my surgeon insists that I get screened with mammos... WTH?  I feel better getting the breast MRI, and I may also suggest regular chest wall x-rays, to check for local recurrence.  My surgeon said that he can't be SURE that he got ALL my breast tissue, so that is the reason for these screening tests.  I know that some women believe that if you have had mast., then there is NO breast tissue left, but I trust my surgeon, and this is at least something I can do to feel in control of the situation.

Just my story, for what it's worth...

Harley

Mamhop, such a small world that you are from MA and also went to Beth Isreal. They told me that they didnt think my IDC was Multi-focal (even though they found two add.l small tumors) but that they only recommend mastectomies if it is "multi-centric" (diff. type of cancer in each tumor) mine was the same cancer but because they saw the clean margins that I got, they were pretty adamant about disagreeing with the prior diagnosis and telling me that I just didn't need to remove it.  I'm so nervous. I was never told about dense breasts being riskier and these posts are actually the first Im hearing of it which is freaking me out. I feel so confused now. I'm wondering if I should even now get a Third opinion!! after hearing all your stories. The time is coming up now too as I go off chemo on July12 but continue Herceptin. Hmmm.. ..this is tough.

Heidi

Well, I have to chime in that ever since I started getting mammograms, they always commented, "Wow, you have REALLY dense breasts!" I did worry about that--don't know why, I guess it just sort of seemed Ominous in some way! Well, fast forward to 2001, and the microcalcifications appeared. Then, a biopsy, then, "atypical hyperplasia cells, which meant cells growing at a faster rate, in an unordered fashion." (Read between the lines: pre-cancerous condition. Put on a watch list, with twice a year mammograms. Recommended to take tamoxifen but after much research, decided the risks outweight possible benefits. Fast forward to Oct. 2007. More suspicious areas on mammogram. Another biopsy. This time, it's DCIS. I was given the choice to do another lumpectomy and rads or a mastectomy. I opted for the mastectomy, as this is getting old!!! I am going in for my exchange from these muscle expanders in just a few days (June 12) and so far, this has been a piece of cake! I am through with mammograms and all the accompanying worry, plus I am in the 99% cure group now! Wahoo!!! AND...I have new, perkier "foobs" and can wear cute little tops and NO bras! i don't see a downside to this whole thing at this point!



Anne

Hi Julie, Yes, I did ask and got a written report. It said that my re-occurance rate was 8-10% if I stuck with just the lumpectomy/chemo/rads -and 2-3% only re-occurance if I got a mastectomy. However, I was told that my survival rate was the same which is why Im having a tough time deciding. I was told that if I chose the lumpectomy and it indeed did come back, that I would then have to have a mastecomy.  Im willing to have a mastectomy if it comes back - I just don't want to go thru AC chemo again and don't have an answer on that.

Heidi

Heidi,

Part of my issue is that my sister died from bc 6 1/2 years ago. It was already Stage IV when they found it and she was 30 years old when it was discovered. I also have a significant family history for cancer although I was not positive for the genetic test.  I have to say that I would not want to do chemo again personally....that being said I know that I will be afraid when it comes time for the surgery too. At this point, I am looking at a bilateral masectomy. I have two young children....I don't want to lose any time with them.  

Melissa, I have always had dense breast tissue too.  My GYN wrote, "fibrocystic breast disease" in my record after my very first visit.  I also had screening mammograms according to the recommended schedule, and the letters I got from the radiology dept always said, "no abnormalities noted" or "no change from last year."

Neither my GYN nor the letters I got from the radiology dept ever mentioned the problems associated with dense breast tissue or the need to be extra-vigilant.  I complained frequently to my GYN that I could not distinguish between "normal" lumps and potentially serious ones.  I even made 2 or 3 separate appts to get new lumps checked out.  My GYN kept telling me to "watch for any new lumps," but every time I thought I found one, he discounted it as part of my fibrocystic tissue.  He never referred me for a diagnostic mammogram or ultrasound, either--he just kept telling me to schedule my usual screening mammo, even when I had pointed out a new lump; and the mammo reports came back normal.

Three years ago when I went for my annual exam and pointed out yet another new lump, my GYN said he could not feel it...and I should just have my screening mammo as usual.  There was nothing found on the mammo.  I could still feel the lump a year later, and that time my GYN could feel it too.  He said it was just "fibrocystic tissue" and was symmetrical on both sides.  My screening mammo was normal.

I still was not aware that dense breast tissue could hide evidence of tumors, and I also did not know that at my age (55), I should not be getting "new" lumps from fibrocystic changes.  Those are common in younger (pre-menopausal) women, but not in women my age.  At my age, a new lump is more likely to be cancer than anything else.  No one had told me that.

At a regular check-up with my primary care doc last fall, I asked him if he could refer me somewhere for a 2nd opinion on the lump.  He referred me to a breast health center for a mammogram, ultrasound, and appt with a breast surgeon. The breast health center did a digital mammogram initially, but the report was BIRADS 2 ("benign finding--continue routine screening").  The ultrasound showed the lump very clearly, though, and the radiologist immediately did a US-guided core biopsy.  The biopsy result was a 1.8 cm IDC, and the rest is history.

The breast surgeon (surgical oncologist) ordered a contrast breast MRI to see if there were other suspicious areas in that same breast or on the other side; but there were none.  Because of the size of the lump compared to the size of my breast, plus the long history of lumpy-bumpy tissue on the side with the tumor, I decided to have a mastectomy instead of lumpect/rads on the affected side.

My 6-month follow-up mammogram is scheduled for this August.  I have no confidence at all that it will detect abnormalities in my remaining breast.  I know there are alternatives to mammography, but none of them are perfect and I haven't been given any recommendations yet for a better screening method.

otter 

otter, I saw your graph on age and the likelihood that a new lump is cancerous, but I wonder if that holds true for dense breasts? Most women who are post-menopausal have less dense breasts. In those breasts a new lump is more likely to be cancerous. But if you still have more milk ducts/lobes and less fat than people with fatty breasts is it possible that new lumps are not more likely cancerous but continue to be a function of that breast tissue? (did the question even make sense?)

I just refuse to see my dense breasts as the enemy. Aren't breasts supposed to have milk producing tissue? So then I want to know what it is that makes these breast more likely to grow tumors (apart from the whole screening issue which makes it sound like something is wrong with me rather than with their machines!). Does any one know what the hypothesis is about dense breasts? Is it just that more ducts and lobes mean more spaces for cancer to grow?

I work in a diagnostic imaging center.  Infact, I am a mammography films specialist.  At least that is my title at work.  So we went digital April 1st.  As it had been a couple years since my last mammogram,  when we went digital I signed up to have my mammogram done.  Before I had it done, I showed  one of the radiologist's my previous analog mammogram from a different facility and she told me that she would wait until we got the digital machine up and running to have my next mammogram done.

The rest is history.  I had my mammogram done and calcifications were found.  I had stereotactic biopsy done which to the surprise of the radiologists I work with came back positive for DCIS.  It was a very very small area of calcifications.  Only three rounded calcifications were found.  They generally dont do a biopsy until they see 5.  I opted for the biopsy and it came back DCIS.  I then had bilateral mastectomy with immediate reconstruction.  After the mastectomy the the pathology came back high grade DCIS.  After the stereotactic, it was dx as intermediate.  

Anyhow, I am very glad that I chose bilateral mastectomy.  I will have to have some revisions to the reconstruction but at least my pathology came  back with LARGE margins.  I am cancer free at the moment and glad to be!  Anyhow, that is my story of dense breast tissue for what it is worth .  

Ah, another "it's the best of times, it's the worst of times" moment in having breast cancer. I knew there was a correlation between density and risk of tumors, but I want to know WHY? And it's really too late for me to become a cancer researcher.

I had hoped that menopause (surgical or natural) would thin out the density, but my surgeon said the same thing you did, some women stay dense and she doesn't know why. Sigh. We know so much more than we once did, and there's so much we still don't know. .

Another dense breast girl here.   I also did not know that having dense breasts was a problem for imaging.  If I had known I would have insisted on an MRI when my calcifications were first found in fall of 2004.  We followed the normal protocol, stereotactic biopsy which resulted in atypical ductal hyperplasia and then excisional biopsy which results in atypical lobular hyperplasia.  My breast surgeon recommended Tamoxifen but I turned it down because I thought I could catch breast cancer early by having clinical breast exams and mammograms, WRONG ANSWER.  I did however ask my breast surgeon if I could have a diagnostic mammogram next time due to having atypical cells.  He said fine and wrote me a script.  Fast forward to fall of 2005, had my scheduled mammogram which was fine and then I reminded the tech I was to also get an ultrasound.  Thank God my ultrasound was done by my radiologist and not a tech because I started running my mouth about having atypical cells and worried there was something hiding in there and sure enough after lots of searching she found my tumor, hiding below my fibrocystic (dense) breast tissue.  My tumor by ultrasound was 1.4 cm but after bi-lateral mastectomy was 2.1 cm and I also had one positive node.  I was devasted because I thought I was being very diligent.  I opted for a bi-lateral because I was very upset that it took so long to find that darn tumor that I knew in my gut was there.  I did not trust that imaging would be able to find cancer early if it developed in the other breast.  They did not find cancer in my good breast but they did find atypical cells which indicated to me it would have cooked up the same thing in time and I probably would have had trouble finding it again.  Have both my breasts removed has given me peace of mind.  No more mammograms for me.  I also opted to radiation to the cancer side to reduce my risk even further.  I had tissue expanders and now have implants which both match and look quite good.     

I too have dense breast and yearly negative mammograms. Well, my GYN NP found a thickening area on my right breast- the diagnostic mammogram couldn't pick it up and the ultrasound didn't until I pointed out where the NP found it so the radiologist came in and did the ultrasound and just saw a shadow. Well the rest is history- I saw a breast surgeon had a core biopsy and they found invasive lobular cancer. A breast MRI picked up the original tumor. I opted to have bilateral mastectomies with immediate reconstruction. The pathology report from surgery showed a 3.8 cm tumor, another smaller area of invasive lobular cancer that extended into my soft tissue and a LCIS in my right breast. My left breast had numerous hyperplasia ans atypical cells in it. Needless to say I am glad I opted for the bilateral mastectomies. I definatley would not want to go through this again in my other breast in a couple of years.

This is all so hard to know when to push and when not to.

I new I had fibrositic breast, but didn't know they were considered moderately dense till after this mammo that ID'd the primary lump.  Then after the mast, I see on the report now, that they said under the nipple (where the 2nd lump was found only on pre-op MRI of ILC/LCIS), that that area was severely dense!  What gives, that they don't tell you this stuff.  That they just keep you in the dark?

Also on the 'other' or good and I use that term loosely, the first mammo said the 'good' breast is moderately dense, and no dominant mass is noted!  What do they mean, dominant? That there are masses, but none is dominant?  Or compared to the the cancerous ones in the left, the ones in the right aren't dominant?  I'm lost!!!! 

The pre-op MRI also stated about the 'Good' breast:  changes in fibrositic bresat disease are demonstrated.  Focal areas of mild increased kinectic activity are present bi-laterally.  No additional areas are more suspicious than any other on the present study. WTH does all this mean?  I've been watching and found I thought a lump 2 months post-chemo. Had mammo, then US, and they said the report said it was a ridge?  In the upper 2/3 of the outside @ 10 o'clock? A ridge? Up there? Mammo in a year they say!

I'm so scared that this is another lump and they just aren't seeing it b/c of the denseness.  I hate BC!  I hate the paranoi it brings to our lives! and the total uncertainity and inability to now trust anyone with my health, without questioning them and no believing what they say