One Woman Starts Legislation Sweeping Nation To Inform Women Of Dense Breast Tissue

 

nancycappello1In 2004, Nancy Cappello, PhD from Connecticut, was diagnosed with advanced stage breast cancer.

She was shocked as she had no prior risk factors, and normal screenings for a decade.

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“I was shocked my cancer had metastasized to 13 lymph nodes and was the size of a quarter, I asked my team of doctors, with my latest ‘normal’ mammogram report in hand, how could this happen since I just had a normal mammogram.” -Nancy

Each physician told her that her cancer was hidden by the mammogram due to her dense breast tissue.

Dense breast tissue is comprised of less fat and more connective tissue which appears white on a mammogram. Cancer also appears white thus tumors are often hidden or masked by the dense tissue.

As a woman ages, her breasts usually become more fatty. However, 2/3 of pre-menopausal and 1/4 of post menopausal women (40%) have dense breast tissue. 

Additionally, as the density of the breast increases, the risk of breast  cancer also increases.

Radiologists have been reporting a woman’s dense breast tissue to her referring doctor for twenty years.   Most often, that information is not conveyed to the patient.

Displaying heterogeneously or extremely dense breast tissue on a mammogram is considered dense (BIRADS C, D). 

Learn More

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Amy Colton, Nancy Cappello

“After an extensive search of the literature, which existed for decades before my diagnosis, I learned that 40% of women have dense breast tissue, that mammograms are limited in ‘seeing’ cancer in dense breasts and that there are other technologies, such as ultrasound or MRI that can significantly ‘see’ cancers that are invisible by mammogram.”

When Nancy asked her doctors to report dense breast tissue to women in her community, each of them refused.  

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Nancy Cappello featured in the New York Times

“My Italian heritage with our tenets of truth and justice immediately kicked in.”

 

Her doctors’ rejection led to action when in 2009, Connecticut became the first state in America to report dense breast tissue to the patient through the mammography report.

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As of today, thanks to Nancy Cappello’s unplanned advocacy, thirty-one states have a density reporting law and more are pending.

 

Nancy Cappello: One of 8 ‘chemo’ infusions 3 months before 11th NORMAL mammogram

Nancy has since been honored by UNICO at its national convention with the 2017 Americanism Award for her breast health advocacy through the work of her two non- profit organizations, Are You Dense Inc. and Are You Dense Advocacy Inc.

The Americanism award recognizes an Italian-American who has made an enduring impact on humanity which encompasses the cornerstone of UNICO’s foundation.

“When I received notice of this prestigious honor, I bowed to give thanks to my parents and my Italian ancestors, who paved the way for me to relentlessly pursue an early diagnosis for women with dense breast tissue, through the democratic process, turning an injustice to justice for women’s breast health.”

Unico National President Tom Vaughn, Nancy Cappello and her husband Joe, Francine Nido, Unico’s National Secretary

Check out the following map link to find out if your state has a law and updates:

http://www.areyoudense.org/news-events/density-reporting-bills-spread-across-country/

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For More Information on Nancy’s incredible advocacy work please visit: http://www.areyoudense.org

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So much valuable information for women on http://www.areyoudense.org

 

Thank you, Nancy!

 

UPDATE:

BREAKING HEALTH NEWS:  Senators Dianne Feinstein (CA) and Dean Heller (NV) and Representatives Rosa DeLauro (CT) and Brian Fitzpatrick (PA) introduce a national bill requiring physicians to notify patients whether or not they have dense breast tissue.

On Twitter: Representative Mike Rohrkaste  and Senator Alberto Darling  introduce bill in Wisconsin to prompt patient notification if they have dense breasts, which increases cancer risk.

#NotifyMeNow

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Hot Program for Women Living with Cancer: It’s Free!

Here’s a hot health organization helping women with cancer look good, feel better.

In 1987, a physician asked former Personal Care Products Council President Ed Kavanaugh how he could organize a “makeover” for a woman in cancer treatment who was experiencing dramatic appearance side effects.  The woman was so depressed and self-conscious she would not venture outside her hospital room.

Kavanaugh made some calls and was able to provide cosmetics and a cosmetologist – and the makeover transformed not only the woman’s look, but also her outlook.

She felt happier, less burdened and laughed for the first time in weeks.

With such a profound result, the Personal Care Products Council recognized the opportunity for its industry to help more women maintain their confidence and self-esteem.

Kavanaugh presented the idea to the Personal Care Products Council membership – the nation’s cosmetic industry leaders – who immediately offered funding and cosmetics.

The American Cancer Society enthusiastically joined the effort, providing a vital national network to assist women seeking information and access to the program.

Finally, the Professional Beauty Association | National Cosmetology Association (PBA | NCA) signed on as the third collaborator, encouraging its member cosmetologists to volunteer their services.

The program – dubbed Look Good…Feel Better – launched with two groups workshops at Memorial Sloan-Kettering Cancer Center in New York and Georgetown University’s Lombardi Cancer Center in Washington, D.C., in 1989.

Today, Look Good…Feel Better group programs are held in every state, the District of Columbia, and Puerto Rico using products donated by Personal Care Products Council member companies.

 

Teen and Spanish programs, self-help mailer kits, online support, and a 24-hour hotline are also offered – as well as numerous independent licensed international Look Good…Feel Better affiliate programs across the globe.

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How can I find out where Look Good…Feel Better workshops are located near me?

Click the following link and enter your zip code to find a program near you.  Or call 1-800-385-LOOK (5665).

http://lookgoodfeelbetter.org/programs

Are Look Good…Feel Better services really free? How can you do that?

Yes, Look Good…Feel Better is a free public service program. It’s made possible by our generous Personal Care Products Council member- company donors who raise more than $2 million and donate more than one million individual cosmetic products, with a value of more than $10 million. The American Cancer Society administers the program nationally, including our toll-free number (1-800-395-LOOK [5665]) and volunteer trainings. And the Professional Beauty Association│National Cosmetology Association helps us recruit caring, qualified cosmetology volunteers. (Find out moreabout our sponsors.)

What will I learn by going to a group program that I can’t learn at home?

Group programs are step-by-step makeover learning sessions led by trained cosmetology professionals. Any questions you may have – such as how to fill in or draw in your eyebrows or how to camouflage particular types of pigmentation – will be answered firsthand. You’ll receive a free makeup kit with brand-name cosmetics to use during the session and to take home, helping minimize shopping time and expense. You will have the opportunity to experiment with various wigs, hats, and turbans in a comfortable, supportive atmosphere. And, perhaps most valuable of all, you will receive the support of other women coping with cancer treatment – those about to go through it, those experiencing it, and those who’ve been there. Put all these factors together and you’ve got a pretty powerful reason to sign up for a group program. Time after time, women who considered staying home tell us how glad they are to have made the effort to come. They say that the impact on their looks and outlooks is immeasurable. And those who care about them say so, too.

Where are group programs available?

Look Good…Feel Better group programs are offered nationwide in hospitals and community centers. Call us at 1-800-395-LOOK (5665) or contact your local American Cancer Society office to help locate a program near you. For those living outside the United States, please refer to our International Look Good…Feel Better programs to connect with us.

Does Look Good…Feel Better distribute wigs?

The Look Good…Feel Better program does not distribute wigs to participants. We do offer information about proper wig selection, fitting and care for alternative head coverings such as turbans, scarves, hats, etc. Some local American Cancer Society offices have wigs banks and may be able to offer assistance to women who need, but may not be able to afford, a wig. In addition, some insurance companies cover the cost of a wig when prescribed by a doctor as a “cranial prosthesis.”

Does Look Good…Feel Better accept hair donations? If not, who does?

Look Good…Feel Better does not accept hair donations for wigs. We know of four organizations that accept hair donations and make wigs for those who need them. They are:

locksoflove.org
wigsforkids.org
pantene.com
pinkbarrette.org (This organization also accepts donations of gray hair. The others do not.)

Hopefully, one of these organizations will be able to use your hair donation.

May I donate gently-used wigs to Look Good…Feel Better?

Look Good…Feel Better does not accept donations of gently used wigs.

How can I get Look Good…Feel Better brochures to distribute at my office/salon, etc?

The American Cancer Society supplies all printed materials at the local level. For physician’s offices, clinics, salons, or other community locations, we suggest the Look Good…Feel Better general informational brochure. To request free Look Good…Feel Better brochures, please contact your localAmerican Cancer Society, or call 1-800-395-LOOK (5665).

Does Look Good…Feel Better have a program for men undergoing cancer treatment?

We offer Look Good…Feel Better teen programs, as well as the comprehensive 2bMe Web site. Though we do not offer group programs for men over 18, we have explored how the side effects of cancer treatment affect men, resulting in an informational brochure. Email us or call 1-800-395-LOOK (5665) to order it.

Organizations such as the American Cancer Society and the National Cancer Institute offer numerous resources, publications and support programs for men, women, teens and children.

Do you recommend any particular cosmetic or skin care brands to use during cancer treatment?

We do not recommend products by brand, but we do believe that mild products are best. Before adopting any skin care regimen, be sure to have your physician’s OK. (See special requirements for radiation and chemotherapy.)

How can an individual support Look Good…Feel Better?

There are several ways you can support Look Good…Feel Better. You can donate online by visiting the donation page; or you can send a monetary donation to: Personal Care Products Council Foundation, 1101 17th Street NW, Suite 300, Washington, DC 20036. You can also purchase the Look Good…Feel Better scarf by Oscar de la Renta (please contact us to learn more); or you canvolunteer in your community.

Losing your hair during treatment for cancer can be one of the most difficult side effects – many women lose all or some of their hair, while others don’t lose any.

Ask your doctor what to anticipate and find out if there is anything you can do to help retain your hair. Then, speak with a hairstylist you trust to find out what to do if your hair thins, and what you can expect when it grows back.

Whether your hair thins or you lose all of it, please know that you can anticipate it growing back once your treatment is over. In the meantime, the Look Good…Feel Better community is here to offer courage, strength, support and peace of mind.

Click on a topic below to get started

Tibi Creates Silk Scarves to Benefit Memorial Sloan-Kettering

Tibi Head Scarves to benefit Memorial Sloan-Kettering Pediatric Cancer Care Research

Tibi created silk head wraps to benefit Memorial Sloan-Kettering Pediatric Cancer Care and Research. 100% of the proceeds are donated and the scarves are a non-refundable charitable purchase. The scarves cost $75 each. They can be found here.

Photo: Tibi

http://lookgoodfeelbetter.org/programs 

Links

http://www.georgetown.edu/content/1242662797532.html

GO RED! Why? by Maria Dorfner

GO RED!  Today is National Wear Red Day to raise awareness about heart disease in women. That’s a photo from last summer, but you get the idea with the red.  Please don’t make fun of my phone.  Or the shadow from the phone.  Pay attention.

Why Women Only?  What about Men and Heart Disease?

In 2004, the American Heart Association (AHA) faced a challenge. Cardiovascular disease claimed the lives of nearly 500,000 American women each year, yet women were not paying attention.  See  how important it is to pay attention.  Your heart health matters way more than having a fancy phone.  Many women even dismiss cardiovascular disease as an “older man’s disease.”

To dispel the myths and raise awareness of heart disease as the number one killer of women, the American Heart Association created Go Red For Women – a passionate, emotional, social initiative designed to empower women to take charge of their heart health.

What’s with the Red Dress?

Ah, the dress.  I’m not standing in that photo because that dress is now a shirt thanks to a tailor.  Short Story! hahaha.   Back to hearts. In 2003, the National Heart, Lung and Blood Institute (NHLBI), the American Heart Association and other organizations committed to women’s health joined together to raise awareness of women and heart disease.  Unity.  Great.  Back to the red dress.

The NHLBI introduced the red dress as a national symbol for women and heart disease awareness and the American Heart Association adopted this symbol to create synergy among all organizations committed to fighting this cause.  Ah, synergy. It doesn’t really explain why the red dress, but ok.  That’s the explanation on their website.

I would have gone with Red is the color of heart and passion. Women have heart and passion, so we put them in a red dress to raise their passion about it.  That’s just me.

Back to these organizations, who do an excellent  job, by the way.  By working together to advance this important cause, the American Heart Association, NHLBI, and other women’s health groups will have a greater impact than any one group could have alone.

Where Do I Get Screened for Heart Disease?

Below is a link to get screened for heart disease. Here’s the catch. The tests costs around $200. but  frequently insurance providers do not cover the cost unless you are showing symptoms.  I think it may be too late by then.

So, now it’s ONLY if you’re at high risk which means you’re in the middle of having a stroke and they say, “Yes! High risk!” and toss you in a machine to get tested for heart disease.

They’re going to have to improve coverage if they really want to be about PREVENTION. I imagine the prevention they’re talking about is preventing doctors ordering unnecessary tests.  If people were ethical to begin with we wouldn’t have these problems.

Thank you, Saint Ephrems and to my family for teaching me about that.  Here’s the link to find out where you can get a screening:  www.lifelinescreening.com.  Below are answers to some other questions.

Why Should I Help Raise Awareness?

More women die of cardiovascular disease than from the next four causes of death combined, including all forms of cancer. But 80 percent of cardiac events in women could be prevented if women made the right choices for their hearts involving diet, exercise and abstinence from smoking. Make it your mission to learn all you can about heart attacks and stroke — don’t become a statistic.

CALL 9-1-1

What Happens When You Have a Heart Attack?

A heart attack occurs when the blood flow to a part of the heart is blocked, usually by a blood clot. If this clot cuts off the blood flow completely, the part of the heart muscle supplied by that artery begins to die.

How Do I Know if I’m Having a Heart Attack:

  1. Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.
  2. Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
  3. Shortness of breath with or without chest discomfort.
  4. Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
  5. As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

If you have any of these signs, don’t wait more than five minutes before calling for help. Call 9-1-1…Get to a hospital right away.

What is a Stroke?

Stroke is the No. 3 cause of death in America. It’s also a major cause of severe, long-term disability. Stroke and TIA (transient ischemic attack) happen when a blood vessel feeding the brain gets clogged or bursts. The signs of a TIA are like a stroke, but usually last only a few minutes. If you have any of these signs, don’t wait more than five minutes before calling for help.

Call 9-1-1 to get help fast if you have any of these, but remember that not all of these warning signs occur in every stroke.

How Do I Know if I’m Having a Stroke?

  1. Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
  2. Sudden confusion, trouble speaking or understanding
  3. Sudden trouble seeing in one or both eyes
  4. Sudden trouble walking, dizziness, loss of balance or coordination
  5. Sudden severe headache with no known cause

Also, check the time so you’ll know when the first symptoms appeared. It’s very important to take immediate action. Research from the American Heart Association has shown that if given within three hours of the start of symptoms, a clot-busting drug can reduce long-term disability for the most common type of stroke.

WHERE DOES THE MONEY GO IF I DONATE?

Donations to Go Red For Women help support efforts to educate women and to fund breakthrough research by the American Heart Association that helps ensure women are represented in clinical studies.  Since 2004, through its fundraising efforts, Go Red For Women has contributed almost $44 million to women-focused research and has provided additional funds to life-saving educational programs and tools for physicians.

 
Here’s a cute necklace if you’d like to get something in memory of your donation.  Also, when your friends compliment you on the cute necklace –you can help raise awareness by telling them all about heart disease.

If you’re a guy reading this –it makes for a heartfelt Valentine’s gift for a woman you love:

LINK TO PURCHASE NECKLACE:  https://shop.heart.org/AHAECOMM/en/ecommTemplate.jsp?pid=ahacomm.cat.product&categoryId=cat1000013&parentId=shcat1050001&id=prod900000

There are other items like a business card holder with a heart on it or related fitness wear or gear.

National Wear Red Day 2011
National Wear Red Day 2011 (Photo credit: U.S. Embassy Montevideo)
 
Here’s One Woman’s Personal Story.  Link at end to share yours.
 
Don’t be afraid to call 911….and don’t drive yourself to the hospital!!!

March 2008 I turned sixty years old and I felt completely fine with no health problems at all. But then six months later, I had the shock of my life because I had a unexpected, sudden heart attack.  It happened at 11 pm and I was just walking around my house, getting ready to go upstair to go to bed and from out of the blue, it hit me.

Like an elephant had just sat on my chest right between my two breasts. Like my chest was caving in and my lungs could not fill up with air.  At first I did not consider that this might be a heart attack.  I don’t know why that was…. I guess because the idea of having a unexpected, sudden heart attack just seem too unreal to me.

Something you might see in the movies, but not in real life. Anyway, after resting on the sofa for ten or so minutes and the heavy pressure in my chest still there, my mind finally began to consider the idea that this could be a heart attack.

I remember slowly walking up the stairs and waking up my husband saying, “I think I might be having a heart attack”.  He jumps up out of bed and says, “What should we do, call 911?”

I foolishly say, “No, get dressed and drive me to the hospital”.  PLEASE anyone reading this DO NOT do what I did and do not drive yourself to the hospital.

I live only two miles from a hospital.  I thought I could get there faster than waiting for an ambulance to get to my house. I did not consider, however, that when I walked myself into the ER at 12 am midnight that there would be no one in sight to help me.  No nurse sitting at the front desk, no people in the waiting room, and no way to yell for help because I couldn’t get enough air in my lungs to scream…. and there was also a glass partition separating the waiting room from the empty nurse’s desk.

As unbelievable as this sounds, I had to just sit in a chair in the empty waiting room, while I was looking at the empty desk, waiting for the nurse to return. It also passed through my mind that I might die right here where I sat in the waiting room, just yards away from doctors who could be saving my life if they knew I was here in the hospital.

I was alone because my husband was parking the car and when he got into the ER and saw me sitting there, he started banging on the glass partition wall, yelling through the glass for someone to help. A nurse finally came into view, saw my husband, and I was rushed to a bed, given an EKG, and was told I was having a heart attack.

A doctor quickly took my bed and started rolling it, running down the hall.  I remember feeling the wind on my face and said, “you are going so fast.”  He said, “I just walk fast”.  But truth is, everything was happening so fast because too much time had been wasted already….. because I did not call 911.

The end of the story is- I was given an angiogram and two stents were placed in my heart, and one hour later, I was in the cardiac intensive care unit breathing normally without any chest pains.

And now I know why it is best to call 911.  It’s because you get immediate help as soon as the ambulance arrives at your home and you get VIP treatment the minute you arrive at the hospital without having to wait to be checked into the emergency room before you can see a doctor.

I feel very fortunate to be alive and very happy I did not die sitting in a chair in the ER waiting room.  Don’t make the same mistake I did… Call 911.

SHARE YOUR STORY AT:  www.goredforwomen.org

 

GO RED! (me & my sister)