My Most cancers Was Missed Due to Dense Breast Tissue

As advised to Jacquelyne Froeber

September 25, 2024, is World Dense Breast Day.

After the mammogram, I sat within the ready room carrying that god-awful paper robe.

The lump shocked me. It was sufficiently big for me to really feel throughout a self-exam, concerning the width of a fingertip. However I wasn’t too nervous — I’d had my annual mammogram two months earlier and every little thing got here again “regular.” Plus, I ate wholesome, exercised and did my self-exams between mammograms. I assumed I used to be doing every little thing proper.

The technician lastly returned, and I glanced at my watch pondering I’d head to work as quickly as she confirmed all was OK. “We didn’t see something,” she mentioned.

I assumed she got here again into the unsuitable room. “I’m the girl with a lump so large I can really feel it,” I mentioned. “Oh,” she regarded on the chart. “You will have dense breasts. That’s going to be a really onerous discover for us.”

“Wait, what?” I sat again confused. Dense breasts? “What does that imply?”

I used to be then despatched for an ultrasound as a result of what I felt didn’t present up on the mammogram.

The lump clearly confirmed up on ultrasound and on the MRI that adopted, although. I had breast most cancers. And since it was missed 12 months after 12 months on my mammogram, it was not early stage.

Discovering out that I had breast most cancers, dense breasts, and that the most cancers was missed as a result of of dense breast tissue — all inside one afternoon — left me speechless.

After I obtained house, I researched “dense breasts.” I discovered that 4 out of 10 ladies of mammography age have dense breasts and that dense breast tissue can conceal most cancers on a mammogram. I couldn’t fairly grasp that nobody had felt the necessity to share this with me at any of my earlier mammograms. Shouldn’t the 40% of ladies with dense breasts pay attention to this? Absolutely each affected person ought to perceive the real looking limitations of a check of their circumstances.

Within the aftermath of the prognosis, there was no time to course of this. My focus was on the surgical procedures, remedies and navigating insurance coverage points. Due to the scale and superior stage of the most cancers, my remedy concerned eight surgical procedures, eight rounds of chemotherapy and 30 rounds of radiation after the most cancers got here again.

In 2010, with the majority of the remedy behind me, I caught my breath and commenced researching dense breasts and most cancers detection. Like me, most girls I spoke to had no clue if they’d dense breasts or not.

When a girl has a mammogram, her breast density is rated into certainly one of 4 classes. I used to be shocked to study that in ladies with the densest breasts, most cancers will probably be missed about 50% of the time. A coin toss.

Definitely if I’d recognized this, I’d’ve requested about different exams. The truth that I didn’t know successfully denied me the chance for an early-stage prognosis.

In my analysis, I discovered that, because of the work of a affected person in Connecticut, the state had a legislation requiring that girls obtain a normal notification about breast density after their mammogram. It had been a very long time since tenth grade civics class, so I Googled, “How do you go a legislation?” and set to work.

I reached out to my state senator in New York to ask if he would take into account sponsoring the state laws and he agreed. The great invoice was drafted to incorporate info all ladies ought to know: that she has dense breasts, that it may conceal most cancers, can improve her threat of creating breast most cancers and {that a} girl with dense breasts ought to communicate to her supplier about further screening exams after her mammogram.

I devoted all my time and vitality to get state legislators to assist the invoice and spent many days within the state capitol visiting workplaces, making cellphone calls and sending emails.

In a win for New York ladies, the invoice handed each the New York State Senate and Meeting unanimously, and was later signed into legislation. New York’s “density inform” legislation grew to become the primary to require that girls with dense breasts be advised particularly and unambiguously “Your breast tissue is dense.” Many different states used the New York invoice as a template for their very own legal guidelines.

Whereas this was an enormous step ahead within the safety of New York ladies, my state of affairs was not distinctive to my state. There have been ladies everywhere in the nation going for annual mammograms, but a hidden most cancers was rising undetected of their dense tissue — and a later stage most cancers was the end result. A few of these affected person advocates fought for his or her state laws whereas in chemo chairs, getting infusions, typing to their legislators to request sponsorship of a invoice.

Affected person advocates have been profitable and there was a rising variety of state “inform” payments, however they assorted broadly within the info every offered to ladies. Definitely, all U.S. ladies deserved the identical actionable info and alternative for an early stage prognosis. A single nationwide “dense breast” reporting customary was wanted.

A nationwide reporting customary may have been achieved by federal laws or federal regulation. I initiated efforts on each. I reached out to my consultant in Congress, and he agreed to draft a federal invoice that might standardize the knowledge ladies obtained once they have been notified that they’d dense breasts.

The following step was the FDA. The letter ladies get after their mammogram is federally mandated by the FDA. So I wrote to them and requested them to think about a requirement to incorporate details about a affected person’s breast density in that letter.

To my aid, the FDA agreed so as to add the subject to the agenda of their subsequent assembly of the Nationwide Mammography High quality Assurance Advisory Committee in 2011. I used to be invited to testify on the assembly and was joined by fellow affected person advocates. Our message was clear: Each girl needs to be advised about their very own breast density and each girl deserves the identical degree of knowledge no matter her ZIP code.

The FDA advisory committee agreed.

Within the years following the assembly, I continued to correspond with the FDA on the necessity for a single reporting customary for all U.S. ladies.

I’ve additionally continued to mentor advocates across the nation engaged on laws. And to handle the brand new affected person and healthcare supplier conversations that start with the query, “I’ve dense breasts, now what?” in 2015 I co-founded the web site DenseBreast-info.org. The web site is now the world’s main on-line useful resource on the subject, is medically sourced and offers training to each folks with dense breast tissue and healthcare suppliers.

Lastly, earlier this month, greater than 13 years after first testifying in entrance of the FDA, the federal breast density notification rule went into impact.

(Photograph/Courtesy DenseBreast-info.org)

Reaching the end line for a nationwide “dense breast” reporting customary is bittersweet. I’m grateful, in fact. I do know this info will save lives. However there are such a lot of ladies who fought for their very own state legal guidelines which might be not with us to affix me in an exhale of aid.

So whereas all of us share a hallelujah that this has lastly come to go, to cite Leonard Cohen, for a few of us, “It’s a chilly and damaged hallelujah.”

However a hallelujah it’s.

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