DENSE Breasts - Send your story to FDA for hearing on Nov 4th!

Springtime · October 2011

Hi ladies, I know there are other DENSE threads here but I wanted to make sure everyone saw this.

Like many of you, I too had very dense breasts and mammogram missed a tumor for 10 years, they estimate. 10+ years of faithful mammograms saw *nothing*!! Even a diagnostic mammogram - nothing. Even ultrasound in my case only saw a murky "line". It was very deep inside and finally, it was large enough to be felt at 6.7 CM - this is how it was discovered. I have bene following the Density movement and discovered this below that I wanted to share. This was a call put out on the DENSE groups on Facebook by JoAnn Pushkin. Here goes:For those of you here have dense breast tissue that caused mammogram to miss your tumor, there is an opportunity to share your "story" to impact change. There have been some movements in individual states to impact change on this. But, on Nov. 4th, the Mammography Advisory Committee (governed by the FDA) is meeting to discuss the Mammography Quality Standards Act. (This would be National, all states). If you are a woman with dense breast tissue and received a late stage diagnosis of breast cancer, please send an email to the two listed below to urge them to include breast density information on the patient's report.FDA rep: Shanika.Craig@fda.hhs.gov
JoAnn Pushkin (Density advocate): dense-ny@optonline.net
JoAnn is attending the hearing and bringing copies of all the letters

I have sent an email, as have others, and I do hope there is a storm of emails! If you feel so led, please consider sending your "story". I will insert an example below.

==============This letter was posted on the DENSE CA facebook group - so is out there publically. I am sharing here as I found this an excellent example when I was putting together my email:================
"Dear Ms. Craig & Mammography Advisory Committee,I am writing to strongly urge the committee to update the language in the Guidance Document to include the reporting of breast density to the patient.In 2009 at the age of 47, I was diagnosed with an advanced stage breast cancer after 7 years of "normal" annual mammograms. 5 surgeries, 16 rounds of chemotherapy and 6 weeks of daily radiation later, I am now forced to cope with the aftermath every single day. My diagnosis was delayed because I have extremely dense breast tissue which obscured the 3 invasive tumors that were hiding in my breast, threatening my life. The radiologist at the mammography center knew about my breast density, as did my referring physician. Why was I was the only one who did not know this critical information about my own physiology?After my diagnosis, I learned that there are over 42 scientific, medical peer-reviewed studies which all conclude the drastically reduced rate of detection of cancer in dense breast tissue by mammography. I also learned that dense breast tissue is a significant risk factor in developing cancer. It is unacceptable that I was never informed of this information and never had the chance to engage in a discussion with my physician about my personal risk factors and options for further imaging. Had I been informed, I would have received an earlier stage diagnosis, required less brutal treatment, and faced a more favorable prognosis going forward.It's too late for me and countless others, but right now you can prevent other women from suffering the same, needless tragedy. The medical community has been well aware of this problem for 30 years making it long overdue that the screening protocol for high breast density is changed to reflect the current information. I urge you to strongly consider the rights of all women to know information about their own bodies which will enable them to actively participate in their own health maintenance. You can do this now by including breast density assessment on the patient's report.Sincerely,Amy Colton, R.N."

Springtime · October 2011

I also have my own personal letter I can share with you if you PM me.

dlb823 · October 2011

Thanks, Spring, for letting us know about this hearing and the need for input. Deanna

Springtime · October 2011

Your welcome, of course. Did you have dense tissue, Deanna?

dlb823 · October 2011

Yes, extremely dense. I also had both ductal & lobular bc. The ductal lesion was the only one that somewhat showed up (thank goodness!) on mammo. The lobular part of that lesion (it was IDC & ILC side by side) and 2 smaller lobular lesions never showed up on mammo or u/s. Dense breasts + ILC = a very slim chance of being seen until it's sizeable. Deanna

hopeful34 · October 2011

Thanks for your post. While I am only stage I, I feel like had I depended solely on the mammogram and not had further testing I would have been sent away with a clean bill of health and things could have been far worse as the mammogram showed nothing at all. I am only 35 (34 at dx) and I am grateful they were able to catch it early and give me more years with my son and husband. I did email the above email address and explained how the mammogram missed my tumor. Thanks again. Take care. Allison

pebee · October 2011

Do you need a letter from me?

20 years ago, I was told that I had dense breasts and NOT to get mammograms as I would have a high rate of false positives. As I had absolutely, positively, no family history of breast cancer, plus I did all of the things that supposedly drop your risk level (i.e. breastfeed etc), then I was not considered a potential breast cancer patient.

Then, I felt the lump, and had my first mammogram. And, they found cancer. At no point did any doctor mention that dense breast themselves - whether they cause the cancer or simply hide it very well - was a significant risk factor........

Springtime · October 2011

Deanna, I didn't know. The more I ask, the more "dense" BC women I find.

Hopeful, thanks for writing a letter.

Pebee, because your cancer was actually found by mammogram, I don't think a letter is helpful for the cause. They are trying to emass a large number of letters from women who had faithful mammograms and yet were diagnosed with large tumors and/or late stage cancer that was totally missed by the mammograms. In other words, they did everything they were told to do, but were unimformed about their own breast density and what this implies: it means you are more likely to get cancer and that mammogram is also more likely to miss it. I never heard this until I was diagnosed with an enormouse 6.7cm tumor less than 2 months after a "clean" mammogram. I was told it had been growing for 10 years. It makes me want to throw up!

For me, ultrasound also missed the cancer. My doctor mentioned I had dense breasts and told me to get digital mammogram. and I did, and so I thought I was covered. I was never told my dense breasts were more likely to develop cancer in the first place (a 5-6x greater liklihood) NOR that mammograms may be missing cancer b/c I was so dense. The mass was very deep inside, but finally it got big enough that it could be felt on the surface. If I had known, I can guarantee you I would have been my own advocate and would have gotten appropriate screening. In my case, Breast MRI was the only thing that found it.

As soon as you have a mammogram, your breast density is known. It is reported automatically to your doctor. BUT it is not reported to you!! Some states now have laws (CT, TX and others lobbying for it) that a woman must be told she has dense tissue and what it implies.

This effort is a Federal movement with the FDA. I hope we get some traction.

Breast density is hereditary and I have 2 daughters!!

Hope this helps.

Springtime · November 2011

The hearing was a huge success and I received an email from JoAnn 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.

dlb823 · November 2011

Good work Spring! It's nice to know your efforts are making a difference and hopefully will help women to be more informed than we were, and maybe not have to go through what we did. Deanna

Springtime · November 2011

Thanks Deanna!

Everyone, 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

DENSE Breasts - Send your story to FDA for hearing on Nov 4th!

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