It should be the law...!
 

MODERN DAY HEROINE IN MY BOOK

Addy Jeffrey did more than make women aware of breast cancer issues midst the pink madness of the month of October.

She worked with the Commission On The Status Of Women to draft legislation to REQUIRE DOCTORS TO INFORM WOMEN OF THE LEVEL OF DENSITY IDENTIFICATION IN THEIR MAMMOGRAMS. To equip women with the knowledge that would have helped her (diagnosed in 2011) to detect her tumor many years earlier.

She spoke at her state capital and asked the North Carolina House to support Health Bill #467 (last February). This July, Governor McCrory signed THE BREAST CANCER DENSITY NOTIFICATION AND AWARENESS Bill.

Similar bills should become law in every state across America! To help protect women and require their doctors to make them informed -- by law.

Raise your hand if you or someone close to you has been diagnosed with breast cancer. 230,000 women will be diagnosed this year alone. 39,000 will lose their lives to this disease.

I wish every day that I had known more than "you have very dense breasts... we need to get a few more pictures" by the mammo tech. I now know that there are reports written about the level of a woman's breast density. Some include notes saying AT HIGH RISK FOR DEVELOPING BREAST CANCER. All I knew was that I had dense breasts.

Now, I advise women with very dense breasts to get an ULTRASOUND with their mammograms. Now, I do this. So many women are told they have dense breasts -- and nothing more...

I am not a medical professional, but I feel this practice of not informing women in greater depth should be against the law.

Bravo Addy Jeffrey! You made a huge difference. And I thank you from the bottom of my heart!

Re: It should be the law...!
 

Pat Murphy, president of the PA Breast Cancer Coalition has worked tirelessly to get the Dense Breast Notification Act passed here in PA. Last I heard it was awaiting the signature of Gov Corbett. Since his wife was a guest at the PABCC Conference earlier this month and he himself showed up and was publicly "harassed" by Ms Murphy to sign this bill, I think it will be LAW soon!
Luckily I was told when i was 25 that my breasts were dense.

Re: It should be the law...!
 

Hi Leah,

So I too was told my breasts were dense, in an off-handed manner, by the mammo tech, explaining why I had to have more pics taken.

I was never given a report, had a conversation w/my then gyn. It was not suggested that dense could put you at higher risk for bc. Perhaps an ultrasound should have been advised w/ea mammo. Perhaps a breast surgeon exam ev 6 mnth would have been order. Heaven knows what one can do in such a situation. But surely awareness, information the patient of all that's involved, not to scare them but to ARM them would be among the patient's rights.

I had a paternal mother/my grandmother and a paternal sister/my aunt who had bc.

All this info was given to the doc. Admittedly at a time, they poo pooed paternal genes, which always seemed crazy, as we are the composite of our parents and their family's genes.

Recently I ended my relationship w/my endocrinologist. Had her office fax my internist as I searched for a new endo person.

Found new endo doc and asked internist's office to fax potential new doc, as his office requested, prior to meeting, for in depth perusal and thought I would hope. No, according to HIPA only the initial doc can fax records to a new doc.

So I had to call old endo doc whose office is a positive disaster, doesn't return calls, is snippy and uncooperative. Then I asked if I could have a copy of my records. Only if I pay for them. But can send free to new doc.

Don't I have a right to my records??? Isn't that within the patients' rights bill? Only for a fee????

Called internist as I realized my newest thyroid U/S was at his office. They could fax me the report, as it initiated from their office. But I had to pick up the U/S, they couldn't fax it to me.

All this sounds very wrong.

But, most especially, my right my to gyn or onocol's records of me, w/o cost!!! So I can then distribute as I see fit, to cardiol, to potential new docs, etc.

If I'd known what dense breasts meant, above and beyond, more mammo pics, I'd have been vigilant. Between my docs and me we could have found my invasive lobular 9 cm tumor hiding perhaps yrs before!!

Early detection saves lives!!

I know so many women with dense breasts!!!

I want the legal right to the report docs apparently write but do not send to patients they find at high risk of bc due to the density level of their breasts. This could save lives. It should be the law. Don't you think???

Re: It should be the law...!
 

ABSOLUTELY Andi...Leah!!! I had a mammogram JUST Friday as it has been nearly a year ago this month that I "found" my pea! All I heard for the last few years or more...you have such "dense breasts!"

Unbelievable...I had a few "pictures" of my left breast... waited...called back for a "few" more, I waited again...then, the I was asked to get my clothes and was told I was going to have an Ultrasound!! As I laid there...I can't even describe the thoughts that raced through my mind...(you can imagine!!)...she was telling me the doctor apparently saw something and wanted another closer look...DUHHH...

Those minutes she walked away and came back in, told me I could get dressed, everthing was fine, was almost something I NEVER want to imagine AGAIN...indeed, where was the Ultrasound years ago...????
I truly was Thanking God as I walked out the door!!!

Re: It should be the law...!
 

Oh, I thought it was already the law. I guess just in my state, not federal.

I have dense breasts. My oncologist was giving me shit saying that I was old and didn't have to worry about dense breast anymore. You should have seen the look on his face when he saw the last mammogram - PRICELESS! I laughed my patooty off because he is exactly one day younger than I am. So if I'm "old" today, he will be tomorrow, LMAO!

My Paget's did not show on the mammogram, or the ultrasound. It did show on the MRI and found 2 additional lesions that were more like a thickening than actual lumps.

Ladies, I think we need better imaging. Digital mammograms are an improvement. But have you seen how vague they are? MRIs are over the top with detail.

And I'm going to post another thread with a conversation about the confusion with reporting dense breasts.

Re: It should be the law...!
 

Greetings all,

You may find other posts by me regarding dense breasts as I have posted on this issue. Also, look up areyoudense.org. This is the organization which tracks the states implementing laws about informing women of their dense breasts. For years, I had my mammograms and was never told that I, too, had "exceptionally dense breasts" and that my BIRADS were a three on a scale from 1-5. A three means that the results are "probably benign" PLEASE pay attention to this point as I want you all to be aware of: there are two reports which are sent; one is sent to you which says "normal" in most cases and another report which is sent to your PCP. The report to the PCP details information about your breasts density and the information about the BIRADS scale. If you have dense breasts and your BIRADS is a three (or higher) more imaging needs done and that is through an ultrasound and/or and breasts MRI. A 4/5 will say needs more imaging. To make a long story short I was told by the imaging center that my PCP should have shared the information with me about my dense breasts; NOT the radiologist. Imagine my surprise when I asked for my records from my PCP and that my breasts were described as exceptionally dense and my BIRADS were a three. Not one time was an ultrasound or an MRI discussed with me. When I went through radiation my radiology oncologist said and I quote "The health care system failed you, Jackie." He said that he would have ordered a breast MRI on me immediately back in 2002. What you will find is that the imaging centers and the PCP's will punt the responsibility onto the other. So, for those states still in the legal process please ask your PCP for the report which was sent to them. I was told that the full report is typically not sent to women because "we don't want to alarm women and have women undergo unnecessary testing." Even the primary care physician residents I work with know nothing about the complexity of the dense breasts issue. And is reference to age, a former colleague of mine, a nurse practitioner said that only old women get dense breasts. It would be funny if it were not so tragic. So, check out the website and then determine if your story wants to be heard by your house and senate in your state. I now have another PCP and another imaging center which addresses breasts only. Remember this ladies, the health care system will protect it's own. And neither branch will out the other until there is a lawsuit. Whereas, I have metastatic disease, I will choose not to sue even though I have been told I have a case. When you settle, you can't talk about your case. I choose to be able to freely talk about my situation and the whole matter of dense breasts.

Take care,

Jackie

Take care,

Jackie

Re: It should be the law...!
 

THANK YOU Jackie for sharing ALL of this shaken information...I'm NOT surprised..."the Healthcare System WILL protect it's own!"...You are precise...more than devastating...:(
I obtain my records, however, these are ones I would really like to have had...however, not quite sure what it would do for me now...I really would like to get them as of my last mammogram!!

Re: It should be the law...!
 

Jackie,

I think you've clearly stated issues with health care that many of us have experienced. The dense breast confusion, the "punting" of responsibility back and forth, the withholding of information because they don't want to "alarm" the patient.

What is even more crazy is the reluctance to test because of risking false positives. It is better just to let the patient's cancer progress I suppose - so we don't risk doing unnecessary procedures and alarm the patient. Hmmm . . . really?

I have seen a dense breasts comment on my mammo results, but no explanation of what it means. I've learned more from you post then any physician.

Thanks for the insight.

Re: It should be the law...!
 

This is so important Andi!

I found this website -- this organization is working on dense breast legislation.

http://www.areyoudenseadvocacy.org

Love,

Rachael

Re: It should be the law...!
 

Breast Cancer In Your Face Month cheers the survivors. And that is wonderful! But is it helping inform women of their rights as patients pre-cancer?

Ask your doctor for the "other" report. Not the form letter. The one with your BI-RADS and lots more.

Some states have passed legislation to make this the law. But where it isn't the law YET, we still have the right to more information. BUT WE HAVE TO SPECIFICALLY ASK FOR IT.

All docs aren't required by law YET, to inform women of the density of their breasts.

We may need an ultrasound and/or an MRI. A DISCUSSION needs to be had! Maybe we should be seeing a breast surgeon every 6 mnths even if we don't have lumps.

I never had a lump. Maybe my dense breasts, even with the additional mammo pictures I always needed, could have revealed what was going on beyond the whiteness of the xrays.

I suddenly had a general hardness of my left breast. It was odd. I check mnthly, first of ev mnth. I was 50. Lots of odd things were happening to my body. Maybe it's a cyst, I thought.

Breast Cancer Awareness Month hadn't alerted me to things other than a lump to see a doc about. ANY changes should send you to a doc. With breast and/or nipple.

I heard the emotional testifying of women who had survived, but no one ever mentioned that it doesn't always start with a lump. That a mammo -- for dense breasts -- may not be enough.

Surely insurance companies don't want us to know this. Next thing, we'd be demanding an ultrasound. Even MRIs. $$$$$$$$$$$$$...!!!!!!!!!!!!!!!!!!

Maybe even digital mammograms aren't accurate enough if 40% of women (the percentage of women with dense breasts and perhaps at higher risk for bc) can't get a full view!

I am reading that technology is progressing. Well, guess I missed the boat. I pray for my dghtrs and granddghtrs... And all my Sisters!

Only b/c "I" now request an U/S w/my annual mammog did they find "something new" last June.

Turns out it was benign -- one very unpleasant needle biopsy and 5 days of waiting for my path report...

Apparently my CT chest/and/pelvic scan only showed "something new" in my abdomen. One surgery later (w/3 laporoscopic punctures) that mystery mass mess was benign!

Thank you Susan Love for this article below:

Thank you Jackie for all the info!! I went on the site and signed up to be on their email list.

Thanks Rachael for the heads up too!

Love,

Andi

Re: It should be the law...!
 

Very informative!


http://www.areyoudense.org/documents...e-brochure.pdf

Andi

Re: It should be the law...!
 

New (2012) ultrasound system approved for screening dense breasts: cancer can be difficult to detect in dense breasts screened with mammography, but ultrasound makes cancer easier to see

Source: Women's Health Advisor. 16.11 (Nov. 2012): p1.
Document Type: Article

Copyright : COPYRIGHT 2012 Belvoir Media Group, LLC http://www.belvoir.com


Full Text:
The first ultrasound device that has the potential to increase breast cancer detection in women with dense breasts has won approval as a screening tool for use in combination with standard mammography. The U.S. Food and Drug Administration (FDA) approved the device on September 18, 2012.


The somo-v Automated Breast Ultrasound System (ABUS) has been in limited use in select practice settings in the U.S. since 2005 as an adjunct to mammography.

The FDA approval makes it the only device authorized specifically for screening women with dense breasts who have no palpable lumps or any other signs of breast cancer, and whose mammograms are negative.


Dense breasts make cancer detection difficult

The National Cancer Institute estimates that about 40 percent of women have dense breasts--breasts that contain more milk-producing glands and connective tissue than they do fat. (The other 60 percent of women have breasts that contain 75 percent or more fatty tissue.) "Some recent studies suggest that increased breast density may increase the risk of breast cancer as much as four- to sixfold," says Kemi Babagbemi, MD, assistant professor of radiology at Weill Cornell Medical College. "It isn't clear if this is because dense breasts predispose a woman to breast cancer.

However, studies do show that mammography is not as sensitive in detecting cancers in dense breasts."

[ILLUSTRATION OMITTED]


In fact, a 2007 study suggested that 35 percent of breast cancer goes undetected by mammography in women with dense breasts, and that, as breast density goes up, the accuracy of mammograms goes down. The reason for this disparity is that while fatty tissue appears dark on a mammogram, dense tissue appears white--but so do potentially cancerous areas, meaning they can blend in.


"Radiologists typically describe trying to find cancers in very dense breasts as being as difficult as trying to see a polar bear in a snowstorm," says Dr. Babagbemi. This means that, in many cases, tumors in women with dense breasts may go undetected until their cancer is at a more advanced stage."


Ultrasound more effective --

As part of the ABUS approval process, the FDA reviewed results from a clinical study in which board-certified radiologists were asked to review mammograms alone or in conjunction with ABUS images for 200 women with dense breasts and negative mammograms. Use of the ABUS, which can scan the entire breast in about one minute, increased cancer detection by about 30 percent in these women; the rate of false positives rose by four percent). A 2010 study showed that ABUS also tripled detection rates for cancers smaller than 10 millimeters in size.


Dr. Babagbemi says that ultrasound, which uses high-frequency sound waves, can detect smaller tumors in dense breasts. "With that in mind, physicians can choose to offer additional screening using ultrasound for women with dense breast tissue who have had a negative mammogram," she says. "It is important to note, however, that some women with dense breasts may actually be better served by a screening MRI rather than ultrasound, particularly if they are at higher-than-average risk for breast cancer."


Dr. Babagbemi recommends that patients discuss screening ultrasound versus MRI with their radiologists or referring physicians based on their own unique risk factors. She also emphasizes that ultrasound does not replace mammography as a screening test; it is used in addition to mammography, even in women with dense breasts.


Some restrictions apply

[ILLUSTRATION OMITTED]


For women who have dense breasts, ABUS may be a significant advancement in their breast healthcare. But Dr. Babagbemi cautions that there are some restrictions.

"Women who have had a previous breast intervention, such as surgery or biopsy, won't be eligible for screening with the device, since an intervention might alter the appearance of breast tissue in an ultrasound image and make interpretation difficult," she explains. "These patients can be scanned with the standard hand-held ultrasound. Patients with fatty breasts also are not candidates for ABUS."


Another caveat to keep in mind is that radiologists often disagree on exactly what constitutes dense breasts. "We do have guidelines that help us decide," Dr. Babagbemi says, "and computer software also can be used to quantify breast density."

DEGREES OF BREAST DENSITYBreast density is classified using the BI-RADS (Breast ImagingReporting and Data System) scoring method developed by theAmerican College of Radiology. This method describes fourdifferent categories. Screening with ABUS is reportedly usefulfor improving cancer detection in types 3 and 4.Type 1 Breast tissue is almost entirely fatty. Mammogram is very effective at detecting cancer, sensitive even to small tumors; breast contains less than 25 percent glandular tissue.Type 2 Scattered fibroglandular tissue; minor decrease in mammogram sensitivity.Type 3 Heterogeneously dense tissue present; moderate decrease in mammogram sensitivity.Type 4 Extremely dense tissue present; marked decrease in mammogram sensitivity.Sowre: American College of Radiology/Breast Imaging and ReportingSystem
As yet, only a small number of states (see box) routinely inform women if their mammogram indicates they have dense breasts. "If you don't reside in one of those states, the mammography results you receive will only summarize the findings of the mammogram and not breast density," says Dr. Babagbemi. But if you would like this information, you can ask your doctor for the 1 report generated by the radiologist, which will include an assessment of your breast tissue."


ABUS is already approved as a screening adjunct for women with dense breasts in Canada and 27 European Union countries. However, Dr. Babagbemi notes that it may take some time for ABUS to be available in all practice settings, as it is still a new technology.

"Widespread implementation of new technology often takes time and requires practitioners to acquire necessary skill sets and training to use it properly," she explains. "Weill Cornell currently does not have this technology."


WHAT YOU SHOULD KNOW

About breast density:

* According to a 2010 Harris Interactive Poll, 95 percent of women don't know their breast density, and that doctors have spoken to less than one in 10 women age 40 and older about breast density.

* In most states, doctors aren't required to directly inform women if they have dense breasts.

* Connecticut, Texas, Virginia and New York have passed laws requiring that mammogram providers notify women if they have dense breasts when they mail out test results. Similar legislation has been introduced in other states and in Congress: Keep track of progress at www.areyoudense.org.

Additionally, North Carolina and California just passed legislation making it the law for doctors to inform women who have dense breasts.



Source Citation (MLA 7th Edition)
"New ultrasound system approved for screening dense breasts: cancer can be difficult to detect in dense breasts screened with mammography, but ultrasound makes cancer easier to see." Women's Health Advisor 16.11 (2012): 1+. Health Reference Center Academic. Web. 28 Oct. 2013.


Andi

Re: It should be the law...!
 

THANK YOU ANDI!!!!! For ALL of your time...I sit here amazed reading this concrete information you've provided...overwhelmed once again...thank you!!

Rachael...a huge thanks to you as well for the site...Nebraska, "No Action!"