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.

breastcancer13

“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

NancyCappello2
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.  

NancyCappello4
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.

NancyCappello3

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/

NancyCappello5

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

NancyCappello6

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

Advertisements

Humor Helps Cancer Patients Heal

LexiTimmons

When 28-year-old Oncology Nurse, Lexi Timmons works with cancer patients, which she’s done for two years, she notices what helps most is humor to brighten their spirits.

She also observes they receive a lot of greeting cards from well-meaning loved ones, but most are downright depressing instead of what they need most during this time, which is cheer.  She realizes it’s not their fault  because the majority of Greeting cards for illness in major retailers are typically glum offering sympathy, along with a Get Well Soon salutation.  She could see her patients get sad as they open and read them.

That’s how Lexi got the idea to create a line of Greeting cards that make cancer patients smile, laugh and feel good.  She calls them LUMPY CARDS.   Everyone knows stress has a negative impact on your mind and body. When people have cancer, they need their immune systems to stay strong and humor helps diffuse stress.  When someone is laughing they’re not thinking of being sick, even if it’s only for a little while.  It’s a step in the right direction.  Laughter is always positive, which is why we love Lexi’s idea and spirit. Sometimes, her patients inspire the cards.

cancercards

Lexi says, “I love to crack jokes and so do my patients. I realized that when people are going through the roughest of times, it actually brings out the best comedian in them.  It helps them cope and it also releases feel good endorphins in them, which are healing.”

Another inspiration was unexpected.  In 2012, cancer hit home when her Mom was diagnosed with breast cancer.

LexiTimmonsandMom1.jpg
Lexi Timmons with a cancer patient she didn’t expect – her own Mom

“My Mom is at her best when she is laughing and not thinking about her cancer. I knew this would help her too.”

LUMPY CARDS sure did make her Mom smile.

LexiTimmonsandMom2
Now, Lexi’s Mom inspires some of the Greeting cards. Together, they share great laughs and beautiful smiles.

Laughter really is the best medicine

 Her Mom Sherry says, “I just love Lexi’s cards! She has a knack for finding just the right line to make people feel better. When I was going through cancer treatment, and I would read one of her cards, they would make me laugh or feel loved. Her cards captured what I needed to hear at each stage of my treatment, and were neither too sympathetic or mushy. So many of the cards out there make you feel like your life is over now that you have cancer or you’re dying.”

Lexi writes the humorous cards herself, but would love to partner with some professional comedians, who would like to volunteer for a good cause and get credit on them.

There are a range of cards uniquely tailored for men, women, friends, family and spouses dealing with cancer and they’re reasonably priced at $3.99 a card.

Healthy Within Network and NewsMD give these cards two healthy thumbs up. 

waxman

And so does the Samuel Waxman Cancer Research Foundation, who has this to say:

“Now THIS is interesting!  A company that makes unique and provocative greeting cards for cancer patients. Lumpy Cards certainly doesn’t tiptoe around the topic of cancer.  The animal selection is particularly cute.”

 

 Way to go, Lexi.  An absolutely beautiful person inside and out, like her Mom.

LexiTimmonsandMom3.jpg
Lexi with her biggest fan, Mom

 

 

Here’s a link to Lexi on-camera talking about her inspiration for Lumpy Cards:

 

lumpycardslogo

  You can contact Lexi for an interview (Contact Us page on link) or order cards here:  http://www.lumpycards.com

Maria Dorfner is an  award-winning health journalist, and the the founding CEO of Healthy Within Network and NewsMD Communications.  This is her blog. She has been working in Media since 1983 and began specializing in Health in 1993, creating and sharing original and trusted health content for healthcare consumers. Her award-winning health series and segments have been seen on NBC, CBS, ABC, CNN, DISCOVERY HEALTH and more.

“Today, the floodgates are open to anyone reporting on health. Consumers are now well aware that physicians may have ties to pharmaceutical companies, health devices or hospitals, so they question everything. They are also now aware that food and beverage companies promoting products may not have their best interests in mind. When your Mom, Dad, sister, brother or loved one has a health issue, you want to know you’re getting trusted unbiased information. We maintain the experts need to be questioned to ensure not only transparency, but that profits aren’t placed before people.  Additionally, we focus on prevention and maintaining good health.  Virgil said it best when he said, “Health is your greatest wealth. Invest wisely.” ~Maria Dorfner

7 Early Warning Signs of Breast Cancer

69th Annual Primetime Emmy Awards - Arrivals

Emmy-award winning actress Julia Louis-Dreyfus, who has brought us so many laughs brings tears to our eyes, as she reveals her breast cancer diagnosis this week.

Our thoughts and well wishes are with Julia during this time.

Consequently, this blog describing 7 signs of breast cancer courtesy of Care.com from five years ago, has been our most popular.  The most important aspect is that symptoms listed don’t come from physicians, but from women who experienced them first-hand.

Many are odd symptoms that would otherwise go ignored.

After this blog was shared on Facebook, one woman even spotted a symptom in herself and sought medical attention.  She learned she had breast cancer.

It was spotted early enough to get treatment.  Sharing this again to raise awareness. Also note that 1% of men also get breast cancer. Know the signs and please share this with loved ones.

Next, we’ll share the most innovative ways to diagnose breast cancer as well as treatments available. Make sure to click the red FOLLOW key on this blog (on upper right hand corner) to be updated.

breast_cancer

by Melanie Haiken

The earliest and most surprising signs of breast cancer, as described by the women who know: breast cancer survivors themselves.

Breast cancer warning sign #1: Pain in the breast or chest

Whether it’s an ache, throb, twinge, or sharp stab, pain or discomfort in the breast or chest area isn’t a good sign.

How it feels: One breast cancer survivor describes the pain she brought to her doctor’s attention as a “sharp pain that comes and goes.” Another describes it as “a mild electric sensation that went from my left breast to my right nipple.”

What causes it: Breast tumors can take many different forms; there can be a single lump, but there can also be an area of scattered seed-like tumors or an amorphous shape with multiple tentacles extending into the tissue. The tumor might also be directly behind the nipple or in one of the milk ducts. All of these growths cause different types of pain and discomfort.

Scary stat: As many as 30 percent of all breast cancer tumors aren’t lumps, which makes them harder to detect.

What to do: Keep track of when, where, and how often the pain occurs. Tell your doctor, being as specific as possible. Make sure to be clear that this is a new symptom, different from any other sensation (such as the sore breasts of PMS) you’ve experienced before. If your doctor diagnoses mastitis and prescribes antibiotics (a typical response to breast pain), take the full cycle. But if the pain hasn’t gone away, inform your doctor and ask for additional tests. Many women are told repeatedly that they have mastitis before they’re able to make clear to the doctor that this isn’t the case.

Breast cancer warning sign #2: Itchy breasts

itchy

 

This symptom, primarily associated with inflammatory breast cancer, is often missed. You’d be surprised how many women with inflammatory breast cancer spend months visiting the dermatologist, only to be sent home with creams and medications for a rash.

How it feels: Extremely itchy — the type of itch you might have with poison oak or ivy, which makes you feel like you absolutely have to scratch. Except scratching doesn’t help, and neither do the ointments that typically relieve itchiness. Your breast may also feel irritated, or the skin may be scaly or dimpled like cellulite.

What causes it: Fast-growing cancer cells block blood and lymph vessels that feed the skin. The normal flow of lymph through breast tissues is impeded, and fluid builds up in and under the skin.

Scary stat: The median age of diagnosis for inflammatory breast cancer is 57 (54 among African-American women), and it’s typically more aggressive than other types of breast cancer, with a five-year survival rate of 34 percent.

What to do: If the skin of your breast looks odd or your breasts feel different, see your doctor right away. If the doctor suggests a skin ailment or an infection and sends you home with a prescription, return immediately if your symptoms don’t go away.

Breast cancer warning sign #3: Upper back, shoulder, and neck pain

back-pain

In some women, breast cancer is felt in the back or shoulders rather than in the chest or breasts. For this reason, spine specialists routinely look for the presence of tumors when treating chronic back pain that’s unrelieved by physical therapy.

How it feels: The pain, which is typically in the upper back or between the shoulder blades, is easily confused with sore muscles, a pulled tendon or ligament, or osteoarthritis of the spine. The difference is that it doesn’t go away with stretching muscles or changing position. Bone pain feels like a deep ache or throbbing.

What causes it: Most breast tumors develop in the glandular tissue of the breast, which extends deep into the chest, close to the chest wall. If tumor growth pushes backward toward the ribs and spine, the resulting pain may be felt in the back rather than in the breast. The first place breast cancer usually metastasizes, or spreads, is to the spine or ribs, becoming secondary bone cancer.

Scary stat: According to one study, the five-year survival rate for breast cancer patients whose cancer has spread to the bone is only 8.3 percent, compared with an overall survival rate of 75 percent.

What to do: Pay close attention to how back pain feels. If it doesn’t go away with rest, stretching, or physical therapy, see your doctor. Keep the doctor informed if back pain continues despite treatment, and request a bone scan.

Breast cancer warning sign #4: Changes in breast shape, size, or appearance

Change-in-size

 

Contrary to popular belief, not all breast tumors cause a hard lump close enough to the surface to be noticeable. “Instead of feeling a lump, I noticed that one of my breasts was more oval than the other, hanging down lower and sort of sticking out to one side,” says a California woman who discovered she had breast cancer at the age of 42.

How it feels: Because this change is one of appearance more than feel, your partner may notice it before you do. Or you might become aware of it as you put on your bra or look at yourself in the mirror at the gym.

What causes it: Tissue growth that’s deeper in the breast or masked by dense breast tissue may push out the shape or size of the breast without causing a noticeable lump. If you’ve been told you have dense breast tissue, be particularly alert for this sign.

Scary stat: Mammograms miss up to 50 percent of tumors in women with dense breasts.

What to do: Study the size and shape of your breasts in a mirror. Sit facing the mirror and look at both breasts dead-on, then raise your arms, turn sideways, and look from each side. If there’s a difference in size or shape you haven’t noticed before, bring it to your doctor’s attention.

Breast cancer warning sign #5: A change in nipple appearance or sensitivity

Change-in-nipple-appearance-and-sensitivity

One of the most common locations for a breast tumor is just beneath the nipple, which can cause changes in the appearance and feel of the nipple itself. In particular, nipple changes are often the giveaway for men with breast cancer.

How it feels: You may notice that one of your nipples sticks up less than it used to, or it might have become inverted, flattened, or indented. Women with breast cancer often recall that they noticed a decrease in nipple sensitivity, which is most likely to come to your attention — or your partner’s attention — during sex. Another nipple change to take seriously is discharge when you’re not breastfeeding, whether it’s bloody, milky, or watery. The skin of the nipple may become crusty, scaly, or inflamed.

What causes it: Many breast cancers start in the milk ducts just under and around the nipple, affecting the nipple’s appearance or causing pain or discharge. There’s also a rare cancer, Paget’s disease of the breast, that specifically strikes the nipple. A tumor in the milk ducts, just behind or to one side of the nipple, pushes the skin up around the nipple or pushes the nipple aside. As tumors grow, they may attach to — and thus retract — the skin or the nipple itself. The tumor might also cause irritation and infection, leading to discharge.

Scary stat: The American Society of Breast Surgeons recently released research that male breast cancer is typically identified later and is deadlier than breast cancer in women.

What to do: Because some women have naturally inverted nipples or have discharge during and post-pregnancy, a doctor won’t necessarily notice this symptom. Since you’re the one who knows best what your nipples look like, pay close attention to any changes and discuss them with your doctor. Mastitis is a common conclusion for doctors presented with nipple changes, in which case you’ll be sent home with antibiotics. If they haven’t cleared up the symptoms within ten days, go back and request scans.

Breast cancer warning sign #6: Swelling or lump in your armpit

Armpit

You know how the lymph nodes in your neck and throat can feel sore when you have the flu? Any pain in the armpit is a sign to check the area carefully with your fingers. A lump under the armpit is likely to be hard and attached to surrounding tissues, so it doesn’t move when you touch it. Or tissue may feel thickened and dense compared with the armpit on the other side.

How it feels: Like a sore or tender spot under the arm. You may also feel a lump, though not necessarily. Affected lymph nodes may feel swollen or tender or develop a lump before a tumor is big enough to be felt in the breast itself. In some women, the swelling is more prominent under the arm or up under the collarbone.

What causes it: The lymph nodes in your armpit are where breast cancer spreads first, by way of lymphatic fluid that drains from the breast. Since the lymph nodes are the first place it’s likely to metastasize, breast cancer is staged according to whether it’s lymph-node positive or negative.

Scary stat: If breast cancer has spread to the lymph nodes, the five-year survival rate declines to 84 percent, as compared with 98 percent for node-negative breast cancer.

What to do: Colds, flu, and infection can also cause swollen lymph nodes, so if you’re sick or have an infection, wait for it to clear up before you worry. But if a lump or tender spot in the underarm area persists for a week with no apparent cause, see your doctor.

Breast cancer warning sign #7: Red, swollen breasts

Red-Swollen-Breast

 

When your breasts hurt, it’s easy to conclude that it’s the typical soreness of PMS. And if your breasts feel hot or look reddened, you might suspect an infection such as mastitis. But these are also signs of inflammatory breast cancer.

How it feels: It’s as if your breasts have a fever. They may feel swollen and sore, or the skin and underlying tissue may feel hot or look red or even purple.

What causes it: Inflammatory breast cancer is the most likely cause of this symptom. But breast tumors can also push on tissues, causing breasts to feel swollen and sore. In this case, you may also see, upon checking, that your breast is distended.

Scary stat: Once breast cancer has spread beyond the breast (stage IV), the average survival is less than four years. So it’s extremely important to detect breast cancer as early as possible.

What to do: Call your doctor right away about any symptom that could be inflammatory breast cancer. If the pain is diagnosed as mastitis and you’re prescribed antibiotics, you should feel better within a week to ten days. If you don’t, call your doctor and be assertive about additional tests.

___________________________________________________________________________________________

Caring.com User - Melanie Haiken

About the Author:  Senior Editor Melanie Haiken, is responsible for Caring.com’s coverage of cancer, general health, and family finance, discovered how important it is to provide accurate, targeted, usable health information to people facing difficult decisions when she was health editor of Parenting magazine. She has written about health and family-related issues for magazines such as Health , Real Simple , Woman’s Day , Yoga Journal , and websites such as BabyCenter.com, WebMD, and the Blue Cross/Blue Shield websites (aHealthyMe.com, aHealthyAdvantage.com) managed by Consumer Health Interactive. Melanie has held positions as Executive Editor at the Industry Standard and BabyCenter.com , and Managing Editor at San Francisco magazine. She has also worked for San Francisco’s renowned Center for Investigative Reporting. She has a master’s degree in Journalism and a B.A. in English, both from the University of California at Berkeley.

Women: Cancer Symptoms You’re Most Likely to Ignore

For More Information please visit http://www.caring.com

Disclaimer: Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on MedCrunch. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. MedCrunch understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.

If you’re a breast cancer survivor and had a symptom not listed here, please comment below and share with others, thank you.

Remember, a mammogram may not detect breast cancer if you have Dense Breast Tissue. Many women aren’t even aware they have it.

40% of women have that. Your doctor may not even if tell you. That’s why one fellow Italian woman in Connecticut went to legislatures to make it a law to notify women within her community. Her doctor didn’t notify her and her breast cancer spread because it wasn’t caught early. And she had no prior family history of it.

SO many women I’ve interviewed share similar stories.

The issue is dense breast tissue and cancer or tumors both show up as white on images. It’s like finding a snowball in a snowstorm.  The good news is there is technology to help radiologists differentiate between the two on existing mammogram images.  As someone who follows medical/health, this is the best use of Artificial Intelligence.

It’s from a company called CureMetrix, and I’ll share more about it soon.

It’s frustrating when networks do stories on Dense Breast Tissue or Breast Cancer Awareness and repeat the same information without proving progress being made for patients and providers. It leaves millions of women (and 1% of men) misinformed.

It makes you wonder if the doctor reporting health news is tied to the hospital they work at and have to promote the status quo, rather than what’s best for healthcare consumers.

If mammograms are the gold standard in care, followed by an ultrasound if you have dense breast tissue, why are SO many dying from undetected breast cancer? Why so many call-backs when there’s something “suspicious” on an image. The waiting time between appointments causes women so much stress.

Ironically, stress and anxiety causes your body to go into a state of sickness. It’s the complete opposite state you need. Your body and mind have amazing abilities to heal when you get into a calm state.

There has to be a better way.  The mammogram image should detect it the FIRST TIME.

As someone healthy, who has no history of cancer in my family, I’m interested in two things in this world. STAYING healthy. As my doctors say, I must be doing something right. Preventing illness. Detecting illness early. Treating it best. If journalists aren’t telling you the whole story about HEALTH –that’s harmful.

Mervin Block, one of my writing mentors wrote an article called, “Health News That’s Not Healthy.”  It was in the ’90’s.  I commented on it. Then, I wrote about it and it got picked up by nationally by Broadcasting & Cable Magazine. They just recently took the article down to not “offend physicians.”  It was about the conflict of interests that exists when physicians report health news.

I’m not anti physician correspondents. I love them. I’m anti- Anchor NOT asking the right questions or doing enough homework to know when vital information is being left out.

It’s one of the reasons I launched this blog.  There isn’t enough time to tell the whole story. I now know there is enough time.  Producers and on-air correspondents waste valuable air time on fluff, so there’s no excuse not to get important health stories out.

I recently watched a health story that said a pharmaceutical company was giving people a full refund if a new FDA-approved cancer treatment didn’t work.  It’s the controversial one costing six figures and up. Story ended there. I knew the pharmaceutical company offered a refund if the cancer treatment was rejected in 30-days.  That’s a big difference.

Contact me at maria.dorfner@yahoo.com if you’re a hospital or radiologist wanting to learn more as it’s the provider that needs to know about the latest tools in order to get it to patients.

Self-care is one of your most important tools.  I’ve believe in healthy habits since I was a little kid. Science is slowly catching up. Lol. Exercise daily. Eat clean. Avoid sugar, red meats, soda, soft drinks, smoking, alcohol, get fresh air and sunshine, 9 hours of sleep, meditate. Daily exercise (even walking daily), laughing, socializing with positive people, being mindful –all release powerful healing endorphins. Surround yourself with positive people who believe in you and maintain healthy lifestyles themselves. It’s contagious.

Stay healthy!