For Those with Dense Breast Tissue

Springtime · October 2011

Sorry that the font and formatting above are so messed up!! I hope you can follow it and share your story. It's very important.

Springtime · November 2011

Help! You can do this!
The FDA hearing (Nov 4 2011) on dense breast tissue and mammograms was a huge success. I received an email from JoAnn (Density advocate) tonight.

Please consider sending quick note to your congressperson (easy to do following the link) and ask for their support of Federal Bill HR3012 (The Breast Density and Mammography Reporting Act of 2011) https://writerep.house.gov/writerep/welcome.shtml
Email from JoAnn: UPDATE:Wonderful news! You were kind enough to voice your support of an amendment to federal requirements for the inclusion of breast density in the letter sent to women after their mammograms. Last week Are You Dense Advocacy testified before the FDA’s Mammography Quality Standards Act Advisory Committee. Testifying were patients, researchers, practicing radiologists and national advocacy groups (Komen Advocacy Alliance, among them) who all voiced their strong support of inclusion of density in the patient letter. The FDA official in charge of the meeting commented on “all those letters” received in favor from around the country. The result? The FDA Advisory Panel concurred that density information SHOULD be included in letter sent to patient. The FDA has asked Are You Dense Advocacy to submit suggested language as they contemplate a final recommendation. We remain optimistic this will continue its forward movement. PLEASE KNOW THAT YOU WERE PART OF THE IMPETUS FOR THIS RECOMMENDATION. INDEED, IT PROVES THE POWER OF ONE. As a regulatory solution may yet take time, we will continue with legislative efforts on both the state and federal level. So, one more favor to ask. Can you please contact your congressperson: https://writerep.house.gov/writerep/welcome.shtml and ask for their support of Federal Bill HR3102 (The Breast Density and Mammography Reporting Act of 2011). Congressional members have – literally – hundreds of bills sitting in their computers, sometimes all it takes is for ONE constituent to show interest in something, for them to support/cosponsor it.

mammalou · November 2011

I wrote my congressman! This issue just gets me so mad and indignant.

mammalou · November 2011

Well, 10 years of mammograms didn't see a thing in my "extremely dense" breasts that had one 2cm benign tumor, one 3.6 cm IDC, DCIS,cancer in the skin, ALH, and about 4 other benign abnormalities. bIRADS 2 "benign" until I demanded more because my breast turned red. Then they classify as a BIRADS 4 because it is red and feels heavy to the tech. The worst part is that I had a mammogram 2 weeks before it turned red and went to 3 different doctors who said, " you just had a mammogram,right? So it's probably nothing.". Apparently, doctors in general are not very educated on dense breasts, so a lot of patients do not even get the benefit of someone who understands dense breasts interpreting their mammograms. The radiologists do know this info and they don't feel it is important to let a patient know that their mammograms are not providing a good diagnostic tool. This false sense of security can be deadly. I pay for my mammograms and I have a right to be told about the results and what they show and what they don't show. The fact that this might lead to more women demanding an ultrasound or MRI should not be the issue. The fact I might "worry" about false positives on an MRI should not matter. I have never met a woman that would rather not worry about false positives than end up with a later stage cancer. That argument is ridiculous and demeaning to women. I understand that mammograms are still the gold standard when it comes to breasts, but we should be told about their limits with our dense breasts and allowed to discuss further tests with our doctors. I tell every woman I know to get a copy of her radiologist's report and read it herself.

star1dog · November 2011

I totally agree that the mammograms are not as effective as they need to be for people with dense breast tissue...I don't think I was told I had dense breasts until "After" I found my lump MYSELF and it was a 2.1 CM golf ball size tumor. I switched hospitals and doctors to have a team of breast cancer specialists at one of the top hospitals in Alabama , the University of Alabama.

I was one of those people who go every year for the usual gyno stuff us ladies go thru and every year my mammograms came back "normal" no mention of dense breast. I have been really angry that my lump did not show it until it was huge. I am telling everyone to examine those girls and do not rely on the doc or mammograms.

To add to all this I have TRiple Negative breast cancer and do not where that came from ...

Springtime · November 2011

I had a yearly mammogram every year for 10 years. Got a "clear" one in May 2008, and in July 2008, less than 2 months later, I was dx'd with a HUGE 6.7cm tumor not seen by mammogram. It had been growing for 10 years, I was told. Makes me want to throw up!

I had very dense breast tissue. Women need to be informed of the fact they have dense tissue, and the risk this imposes. Dense breast tissue is a biological risk factor. Dense tissue is 6x more likely to develop cancer in the first place. It is also less likely to be picked up by mammogram because both dense tissue and cancer show up white. It is the #1 predictor of mammogram failure.

Please consider writing to your Congressperson and and ask for their support of Federal Bill HR3012 (The Breast Density and Mammography Reporting Act of 2011)

https://writerep.house.gov/writerep/welcome.shtml Also consider signing this petition. http://instituteforhealthqualityandethics.com/Join_the_Petition.html The movement is getting very hot now. Keep the forward momentum!!

Rocket · November 2011

I too was a DES baby and had "normal" mammograms for 9 years before being dx'd with 3 big, and palpable I might add, tumors. I had pointed out all three to my doctor for FIVE years! All three turned out to be multicentric breast cancer. I was very fortunate that out of 13 lymph nodes not one showed cancer which put me at stage 2A. It's important to note that after having a BMX, chemo, rads, hyst-ooph, Arimidex and its side effects and a lot of anxiety that I feel down right angry! If the cancer had been detected earlier in my "extremely dense" breasts, then I might have avoided some of that suffering. What's it going to take before the medical community wakes up?

Anonymous · November 2011

Mammalou - all I can say is AMEN !!! I even had an ultrasound, PET and MRI prior to bilat mast surgery and none of those tests showed my huge 6 cm tumor. Plus during previous mammos, my doc never said I had dense tissue, only after getting BC did they say that ! And they also need to get real about the family history factor. I think the reality of family history in percentage of risk is much higher than 10% chance. Because most of the statistics out there anywhere are years old. GRRR

Springtime · November 2011

I share your anger. 10 years of mammos, digital even, NOTHING. Finally it was big enough to feel. 6.7 cm. I too was lucky nothing in the lymph nodes, so also stage 2A.

Have you ladies been hooked up to the DENSE threads on Facebook? There is a lot of ground breaking information there, and progress being made is shared. Many states are pursueing legislation.

Are You Dense, Inc

D.E.N.S.E. NY

D.E.N.S.E. CA

Great threads.

Dr. Susan Love talks about Dense tissue in a recent blog post here: http://blog.dslrf.org/?p=416

Also, this was fascinating, by a radiologist in NJ:
Dr. Lisa Weinstock, a breast radiologist in Ridgewood NJ describes why she supports legislation requiring women to be informed about their breast density. And check out their FB page!

http://www.facebook.com/pages/Womens-Digital-Imaging/116220041726843

http://womensdigital.com/blog/2011/11/09/breast-density-and-politics/

For Those with Dense Breast Tissue

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