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When a "Normal/Negative" Mammogram Result is a Lie

Misleading mammography results put lives in danger. 'Normal/negative' doesn't mean what you think it does.

Breast Cancer Dilemma:  Misleading Results Put Lives In Danger

Seven years ago I learned two things: I learned I had breast cancer and I learned I had dense breast tissue. Tragically, I learned them both the same day. The reality is that I, along with 40 percent of women of mammography age, have dense breast tissue, which dramatically compromises the effectiveness of a mammogram and also puts us at greater risk for developing breast cancer. I am not alone, according to a recent Harris Poll, an astounding 95 percent of women are uninformed about their own breast density.

Breast density refers to the composition of breast tissue. The breast is composed of fatty and "dense" tissue. Dense tissue shows up white on a mammogram; unfortunately so does cancer.  A cancer lurking behind dense tissue is often undetectable by mammography.  Your breast density is noted during your mammogram and shared with your referring physician but it is not routinely shared with you.

Despite a healthy lifestyle, diet and never-missed annual mammogram exams, one day I felt a lump during a self-exam. Though large enough to feel, the lump did not show up on the mammogram I underwent that day.

Why, you may ask—as I did that day? “Oh”, said the tech, “because you have dense breast tissue. That's a very hard find for us”.  When I found my voice again, my stunned response was, “Wait. What?”

Unfortunately I have learned through bitter experience that my post-mammography letter stated, "Normal/negative: No evidence of cancer", not because cancer wasn’t there, and not because my radiologist knew with any reasonable certainty that cancer wasn’t lurking behind dense tissue.  It said "Normal/negative” because he simply couldn’t see anything through the dense tissue.  

After being diagnosed it was estimated the tumor was growing undetected by mammography for about five years.  And yet, the letter I received with my mammogram results each of those years, simply stated, “Normal /negative, no evidence of cancer”.  Not one word about "breast density" or that, due to density, the mammogram results might be compromised.  And, tragically, not one word about another screening tool that might have  detected my cancer at an earlier stage sparing me the horror of  seven surgeries, eight rounds of chemo, 30 rounds of radiation—and the rest of my life lived as a time bomb.

The reality is that scientific research has outlined that women with dense breasts are four to six times more likely to get breast cancer and it will be caught only about 50 percent of the time by mammogram.  A life threatening double whammy.  And yet currently, there is no standardized protocol for informing women about their own breast density and associated risks.

WOMEN HAVE AN ABSOLUTE RIGHT TO ALL AVAILABLE INFORMATION ABOUT THEMSELVES, SO THEY CAN MAKE INFORMED DECISIONS.

The good news is that recent studies out of Connecticut, the first of only three states with a Breast Density Inform law enacted, indicate that for dense breasted women, the addition of an ultrasound after a mammogram nearly doubles the number of cancers found by mammogram alone.  These are cancers now detected by ultrasound “missed" via mammogram.

Connecticut’s data, applied to the population of New York State, indicates that there could be over 2,000 women, each year, who are told their mammogram results are "normal/negative", but who, in fact, have life threatening invasive breast cancer. These cancers, missed year after year by mammogram, will generally not be found until large enough to be felt—when no longer early stage, when least survivable and most costly to treat. 

Thankfully in New York, Breast Density Inform legislation (S6769/A9586) is being considered which would provide for patient notification of her own breast density and insurance coverage for additional screening if her doctor feels appropriate. 

This legislation is sponsored by Senator John Flanagan and Assemblywoman Ellen Jaffee who joined forces from both sides of the aisle to support this critical piece of life saving legislation. Along with a Congressional bill, New York is one of 16 states working on legislation this session. New York’s bill is headed to the Assembly Insurance Committee.

Please support this legislation by contacting your state senator and assemblyperson to let them know why you think patient Breast Density Inform is important.  Until the legislation becomes law, women can find out about their own breast density by contacting their referring physician and requesting a copy of the mammogram report received from their radiologist.

This is the year we need to get this change passed in New York and in our nation. We are moms, wives, grandmothers, sisters and daughters—and these are preventable tragedies. The women of New York and the men who love them need to demand that information about a woman’s breast density be included in the letter she receives after her mammogram. Without this vital information, the letter is a lie by omission.   

 

JoAnn Pushkin first learned of her own breast density on the same day she was diagnosed with breast cancer.  Both the New York State and Federal Breast Density Inform legislation were drafted at her request.  She is now a full time unpaid advocate supporting Breast Density Inform legislation around the country and is Executive Director of Are You Dense Advocacy, Inc.

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

my3boys May 01, 2012 at 02:17 AM
I faced a similar situation as you, only with a better outcome because my dr accompanied the mammo with an ultrasound. The day I received the "all clear" letter about the mammo, my dr called to tell me there was a spot on my ultrasound. After a biopsy, I wasthankfully given the all clear and followed closely for a year. I had a benign tumor that has not grown. I was only 38 at the time and I tell all my friends to ask their drs for an rx for an US, along with a mammo. It amazes me how many drs do not recommend both tests for women, especially women with dense tissue. It never hurts to bring this up with your dr. Thanks for making more women aware!
Amy Reissner May 09, 2012 at 12:49 AM
There are some other tests that women can utilize, two of them are blood tests. I had a breast cancer scare about 8 years ago, after a mammogram and an ultrasound. As a nurse, I had worked in the operating room and had rotated through the breast surgery and plastic reconstruction OR. I did lots of research at the time, as I wanted to determine if there were other tests that were less invasive then a biopsy, as they were not really sure, but felt a biopsy would give them better information. I had a blood test, called an Anti-Serum Malignin Assay. This test, at the time was only given in the state of New Jersey. My doctor wrote up a requisition for the test, which was said to be 99% effective. The test came back negative and I passed on the biopsy, feeling fully safe and sure. Since that time, I have had breast thermographies, (Dr. Mercola's site) which are not covered by insurance. Thermal images reveal hot and cold areas of the breast tissues. The initial thermography covers two procedures. A baseline is taken of both breasts. There is no compression, no radiation exposure, no discomfort. The thermography is reviewed by radiologists and the report is given to your doctor within a week. That is the baseline scan, if you will. Three months later they repeat the procedure in order to make comparisons. The information is quite accurate and amazing, as this type of procedure can catch initial changes in the breast tissue before any malignant changes might occur. Amy Reissner RN
Mary Burmeister July 16, 2012 at 05:53 PM
I had the same story. Diagnosed with ovarian cancer July 2010 at age 50. BRCA testing was negative. Had two mammograms after that - while in treatment for the ovarian cancer - both times got the call clear letter. November 2011, a month after a mammogram, I found a 1" tumor. They had a hard time even finding it on ultrasound. My breast surgeon told me he had never seen breast tissue that dense in anyone my age. I got copies of all my mammogram reports - not the happy grams - and all 10 reports said I had extrememly dense breast tissue. I am beyond furious that knowing I had ovarian cancer AND extremely dense breast tissue, I wasn't given that information or offered an MRI or ultrasound. Just finished chemo in April, bilateral mastectomy in May and will be on Herceptin for a year. But, I think MO has passed Breast Density Inform legislation that will go into effect in August. But I continue to tell every woman I know to get a copy of the actual report and give the website info. for Are You Dense.

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