Monday, June 24, 2024

Battling Metastatic Breast Cancer from Multiple Fronts

A Cancer Crusader's story: by Sandy Cassanelli 

I was diagnosed with stage III Breast Cancer at the age of 37, before I was even eligible for a mammogram. I found the lump myself. My daughters were in the first and fifth grades at the time. I had a bi-lateral mastectomy, eight rounds of chemotherapy, and 28 days of radiation. After, I was declared cancer free!

Fast forward two years: I was having some bone pain under my breast and in a scan it showed that my breast cancer had spread to my liver. I was now living with Stage IV Metastatic Breast Cancer (MBC).  No Cure!  I would be in treatment for the rest of my life!

Most people don’t know what MBC is. It’s when your breast cancer spreads from your breast to another place in your body, usually your bones, lungs, liver or brain. Lungs. 

I received this diagnosis one month before my 40th birthday. I was scared to death. Would I see any more birthdays? My girls were so young. What would happen to them if I died?

Husband Craig & I  knew we needed the best care possible so after advice and help from a dear friend, we were off to Dana Farber Cancer Institute to see Dr. Eric Winer . He is the best doctor in the world as it relates to Metastatic Breast Cancer.

Dr. Winer told us that even though my cancer had not been good to me and spread very fast he still had many tools in his tool box to treat my cancer. Our family has always raised money for Breast Cancer as it has affected so many in our lives and now we desperately needed a cure. We started to do our homework as to what organizations gave the most to research for the cure. We were shocked that most organizations give just 7-10 percent to research. What we also found was that Dr. Winer was the top researcher for most of these organizations so we went to him and asked if we could start our own fund and give him all the money.

In 2016 our family founded Breast Friends Fund, which donates 100 percent of the money it raises to Metastatic Breast Cancer research under the direction of Dr. Eric Winer. This is something our family runs part time as we have full time jobs and our girls have school full time, as well as jobs.

As of this year, Breast Friends Fund has raised over 1.3 million dollars. Dr. Winer has moved his cancer research work from Dana Farber to Yale Cancer Center. He currently serves as the director of the Yale Cancer Center’s ,and President & Physician-in-Chief at Smilow Cancer Hospital. I have also transferred my care and Breast Friends Fund to Yale with him. 

Living with MBC is not easy. It brings many physical and mental challenges. Up until recently I spent the following year and a half going from one failed treatment to another.

I am currently on my 16th line of treatment since my diagnosis in 2015. Having stage IV has taught me to TRULY enjoy every day of my life. It has brought our family so close. We spend  as much time together as we can, creating lots of amazing memories together

The four of us love spending time together. I am very blessed to be married to my husband and best friend Craig for almost 25 years.  I am blessed to be the mom of two amazing girls.  Samantha is 21 who recently graduated from college and Amanda 18 who recently graduated from High School.

My husband Craig & I own a family business together & just celebrated out 20th anniversary as business owners. It has also increased my faith in God. I have always been religious but having this disease and not knowing what the future holds has taught me how to surrender my illness and have greater faith in God.

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11 years ago, Sandy Cassanelli was diagnosed with breast cancer. In the years since, she underwent countless treatments of chemotherapy and radiation therapy, was cancer-free for a time, Less than 2 years later, Sandy was diagnosed with Stage IV Metastatic Breast Cancer. Her long battle with breast cancer has led her to become a fierce advocate for finding a cure. Sandy teamed up with nationally-recognized cancer experts to help raise money for a cure and formed the Breast Friends Fund, which to date has raised more than $1.3million for research The operating costs of the fund are borne by Sandy and her husband Craig and 100 percent of the donations to the fund go to cancer research.    All money goes to Metastatic Breast Cancer Research at Yale Cancer Canter under the direction of Dr Eric Winer. http://www.breastfriendsfund.org/



VIDEO SPOTLIGHT:
Cancer Science News features Dr. Ben Ho Park on EARLIER DETECTION & THE TYPES OF BREAST CANCERS



Ben Ho Park, MD, PhD, is Director of the Vanderbilt-Ingram Cancer Center (VICC). Dr. Park is also a Professor of Medicine in the Department of Medicine's Division of Hematology and Oncology. Dr. Park's research is dedicated to finding a cure for all types of breast cancer by investigating mutated and altered genes responsible for the development and progression of breast cancer, as well as genes that lead to drug resistance. He is actively involved with the VICC Breast Cancer Research Program’s clinical research team to translate his research into clinical practice and patient care.  (Complete interview & feature story)






FOR IMMEDIATE RELEASE:

National Dense Breast Disclosure Law, takes effect on 9/10/2024

6/18/2024 - Hartford, CT.  The Are You Dense Foundation is proud to confirm the National Dense Breast Disclosure Law on September 10, 2024 at the Connecticut Legislative Office Building. This groundbreaking law aims to empower women by ensuring they receive crucial information about their breast density during mammography screenings.

Connecticut is taking the lead in championing breast density awareness, recognizing the importance of transparency and informed decision-making for women's well-being. The National Dense Breast Disclosure Law requires healthcare providers to inform patients about their breast density during mammography screenings. By providing this vital information, women can better understand their individual risk factors and seek appropriate medical care. Together, we will celebrate this historic moment and the power of knowledge in women's healthcare decisions. (see full press release)


The 2024 Women's Health Resource Network Launches Ultrasound Screening Initiative for Underserved Communities

In support of the underserved and underdiagnosed women, the WHC was originally founded to bring early detection and public education about the many women’s health disorders that many find to be lacking in access and information. This doctrine united women’s health advocates like Geri Barish (Hewlett House), Joe Cappello (co-founder of the Are You Dense? Foundation), Dr. Robert Bard (IHRC / Integrative Health Research Center), Dr. Noelle Cutter (Molloy University Research on Ovarian and Breast Cancer research programs) and Nancy Novack (of nancyslist.org). “It’s time we wake up lawmakers and the medical community to re-evaluate the existing gold standards (like mammography),” stated Mr. Cappello during a Key to the City speech honored by Waterbury mayor Neil O’Leary. “We are finally picking up great steam in our national push to have all clinicians adopt the advanced results of ultrasound technology… as a sustainable and affordable solution for ALL women!”  (see complete report)


This article is sponsored by the educational program of Bard Diagnostic Imaging


WHAT ABOUT IF YOU'RE TOO YOUNG FOR A MAMMOGRAM?   I went to my doctor for a lump I felt in my breast and she gave me a response that set off red flags: "don't worry about it". Being a researcher involved in breast density and breast cancer, I knew that I had to take action; I was fortunate enough to have my breast ultrasound training with Dr. Robert Bard (cancer imaging specialist, NYC) upcoming in the next week. Dr. Bard showed me how to use the ultrasound to help me find two benign tumors in my breasts, and it was there that he reported that I have dense breasts. Had I not taken action in getting screened at the young age of 22, I would have never known that I should be getting screened via ultrasound every 6 months (because having dense breasts puts me at a higher risk for breast cancer), nor would I have known that I had benign breast tumors. 

- ALEXANDRA FIEDERLEIN, 22
Cancer Researcher/ Graduate- Molloy Univ.



A major concern is the presence of breast cancer in underserved communities, including those TOO YOUNG FOR A MAMMOGRAM.  Whereby the medical community touts the recommended (and legal/billable status) of getting a mammo scan should be between 40-50, what happens to the many women who do not fit this age criteria?  How would they even know to get checked without the support of their clinicians or an alarm from family history? Decades into the battle against breast cancer, clinicians and the public are much more educated about EARLY DETECTION, PREVENTION and the current protocols and modalities available to save lives.  Recent headlines on DENSE BREAST and the advancements in ULTRASOUND SCANNING supports a major part of this battle. SEE COMPLETE FEATURE


WATERBURY, Conn. (October 12, 2023) JOE CAPPELLO/ARE YOU DENSE? FOUNDATION RECEIVES KEY TO THE CITY FROM MAYOR O'LEARY
Waterbury celebrated a citywide Pink Out on Thursday, October 26th! Saint Mary’s Hospital Foundation has once again partnered with the City of Waterbury to recognize Breast Cancer Awareness. Waterbury Mayor Neil O’Leary, Saint Mary’s Hospital President, Kim Kalajainen and special guest Joe Cappello will address organizers and volunteers from the Waterbury Police and Fire Departments as well as the Education Department, area students and others at 11:00 a.m.  at Waterbury City Hall.  


Video News Release: Innovations in Early Detection

"Are You Dense?" Foundation Co-founder Joe Cappello joins the medical diagnostic community to promote the "Get Checked Now!" campaign. Dr. Robert Bard from the Bard Cancer Center (NYC) supports supplemental imaging including the 3D Doppler Ultrasound scanner to offer dense breast detection.  This video presents some of the latest advancements in ultrasound features to detect tumors through dense breast tissue- reportedly a significant challenge with mammograms. 



HONORING HEWLETT HOUSE & GERI BARISH- LONG ISLAND'S LEGEND IN CANCER CAREGIVING!

Introduction
In a recent interview with Long Island cancer support advocate, Ms. Geri Barish shares her uncompromising passion for her life’s work.  As co-founder of Hewlett House, Ms. Barish established a well-loved community learning resource center for cancer patients and their families. She and her staff have been serving the local community for over 28 years and have served tens of thousands of cancer patients and their families.

INTERVIEW with Geri Barish
“Hewlett House is all about human connection: since its opening in 2000, it has become a safe haven for cancer patients and their families.”  Their patients come together to network and receive accurate information in a comfortable home environment. The Hewlett House facilitates discussions that help patients come to terms with their cancer and treatments, all while maintaining strict HIPAA standards of privacy. Their services rely primarily on the generosity of our supporters and local communities.

I'm a five time cancer survivor and was originally diagnosed with breast cancer at 38.  I see people with cancer all the time and if I knew then what I know now, maybe I could have helped so many more.  What I say all the time is “you have to be screened! Cancer starts young.” It doesn't start at 50 and 60 and 70. It's not just an old person's disease. 

CANCER STARTS EARLIER
I'm fighting right now for younger women to be screened – and to know their history. We have too many young women in their twenties getting breast cancer. Our last meeting had 27 new patients, mostly under 31, either breast cancer survivors or still in treatment. I think that's pretty serious. When they come down with breast cancer, it's often very aggressive because they weren’t screened and didn’t know their history.  I am advocating to push for younger women to know their history and to get screened.

Part of this advocacy is addressing the need for people to get ultrasounds, and insurance isn’t always covering it.  When the doctor writes a prescription it should be adhered to. So when you go for an ultrasound it is often out of pocket, $3-$400. It is outrageous. Because of this, we just put together a bill with New York State Senator Steven D. Rhoads  that would require Breast Cancer ultrasounds to be covered.

Starting next week I am doing a radio program about exploring “what does early detection really mean?” … and what is the age group? I'm out there really pushing for younger and younger women to go to their doctor to be screened. If you feel something, if you know there's a history in your family, whether it's prostate cancer or another kind of cancer, you need to speak to your doctor. We're just seeing too many young people get cancer across the board. 






THE HOUSE BUILT FROM LOVE
The Hewlett House itself is a national landmark that was deeded to the Hewlett-Woodmere school district for educational purposes. Unfortunately the house had fallen into neglect and disrepair. County executive Bruce Blakeman had worked with me on cancer issues and thought I could have use for this building for our cancer patient support initiatives. He arranged for the legislature to buy the house for a dollar, and we took it over with major support from caring volunteers. We converted this 387 years old house into our patient haven. (See photo tour of the Hewlett House.)

We started out as breast cancer support, but today Hewlett House services all kinds of cancer patients. We see men, women, children and we have served over 37,000 people since we opened our doors. All services are free and we work with all hospitals. 

I sit on the advisory board for cancer at Mount Sinai Hospital and I'm a special assistant to the Commissioner of Health of Nassau County. I work for the health department. I also sit on the Medical Society board for Nassau County. My outreach goes everywhere - it doesn't stop at the front door of Hewlett house.

A PERSONAL CRUSADE – REFLECTING ON HEREDITY & “A LONG WAY TO GO”
For me, this all started when my son had cancer. In 1974 my son Michael was diagnosed with Hodgkin's disease, at the age of 13. In 1986, a week before he died, I was diagnosed with breast cancer at the age of 38. I remember coughing one night and I put my hand to my chest. I felt something hard and round like a pea. It was towards my clavicle. I thought, “God, I wonder what that was?” I was so involved with my son that I didn't even think about it. Looking back, my mother had died from breast cancer and I wasn’t making the connection. I was more concerned about Michael. Then I went to the doctor and he said, “no, it's very hard – let's try taking a biopsy”. Lo and behold, it turned out to be cancer. The day I was supposed to start radiation was the same day as his funeral. 

That was in 1986, and the breast cancer recurred in 1987. I had skin cancer in 1990. I had breast cancer again in 1993. In 2015 I had lung cancer. I just keep going because of my son. I made him a promise and I'm writing a book right now— it’s called “I made him a promise”. He asked me “what did I do wrong, why do I have cancer”. I said “you did nothing wrong”, and I promised him I’d find out why. I'm not going to stop. We've come very far and there's still a long way to go.


ENVIRONMENTAL MISSION
Our location allows us to work well with the five boroughs. We also work with a group of young women across the United States called the BREASTIES, all under 32. We had meetings a few times a year to discuss environmental impacts on cancer cases. 

We got together as an organization in the late eighties, when Long Island had a very high rate of breast cancer. We started talking about having an environmental study. We got together with Susan Love and we helped to start the National Breast Cancer Coalition in Washington. We marched and we met many people and we started asking questions. I met with the surgeon general asking the NCI for a $5M budget for an in-depth environmental study of Long Island due to the prevalent cases of breast cancer. It is an island with the most open waste sites. The study would need about $5 million. We were directed to Senator Al D'Amato and Congressman Peter King. They helped start our five year in-depth environmental study on water, pesticides, chemicals, and much more. It became known as the Long Island Breast Cancer Study Project.



THE WOMEN'S HEALTH COLLABORATIVE gives special thanks to Ms. Geri Barish for a lifetime of generosity, endless support and loving care for all those who have entered the doorway of the Hewlett House- and for the many who call on her for help and resources while battling debilitating diseases.  Since 1990, the mission of Hewlett House is to support cancer patients at every stage of treatment. Ms. Barish and all her volunteers manage this special community resource center that provides all services without charge. They pride themselves in providing patrons with the highest-quality information and guiding them throughout their battle with cancer. Every patron is treated like family and given full access to educational materials, 24/7 peer-to-peer support systems, and a network of cancer survivors and doctors. Hewlett House is open to those fighting cancer and their families. A variety of free services are available, including yoga, meditation and tai chi classes, support groups, wigs, bathing suits, bras and informational services.  For more information, visit: https://hewlett-house.org/ or call 516.374.2385



A COMPLEX INTERACTION & ENVIRONMENTAL TOXICANTS
By: Dr. Roberta Kline
Not everyone who is exposed to environmental chemicals will develop disease or cancer. The outcome for each individual is the result of a complex interplay of their genetic predispositions, epigenetics, and environmental exposures over their lifetime. We all have biological processes to clear many different chemical substances from our bodies. How well these systems function can be affected by many factors, including genetics and epigenetics, along with a person’s health and nutrition status, exposure level, and even stress. The more suboptimal these are, the higher a person’s risk for consequences to their health from environmental toxins.


NYCRA NEWS- Genetic Predisposition (with Special Video PSA by Dr. R. Kline)
By definition, diseases like CANCER are not directly hereditary. Unlike genetic traits and characteristics passed down to children like blood type and eye color, chronic diseases like cancer are recognized to be contracted through the environment (external impact). However, as cancer is a form of genetic mutation, genetic changes that increase the risk of cancer CAN be passed down or inherited.  


Many organizations fundraise through golf club outings and things like that. We thought to do better- by bringing families together under one roof for a memorable night of "joyful noise".  The concept of the Musicfest is an event that we started producing 15 years ago as a fundraiser to support the Are You Dense? mission. For many years, we have done legislative work while bringing awareness and education to the public about the cancer concerns linked to Dense Breast Tissue. The Musicfest was our largest finance producer and we need it every year. It's very exciting to have bands from all over the country come in to perform-- both well-known and not-so well-known groups. 






WE ALL NEED MENTORS

I had the pleasure of finally meeting the legendary GERI BARISH and THE HEWLETT HOUSE. After one phone interview, Geri's commitment to advocacy and resource giving sparked a unique level of curiosity about her work to see her magical HOUSE on East Rockaway Road for myself - and I'm so glad I did.  From the front steps to every room inside the hallowed house, the love and compassion was literally sprinkled everywhere.  Geri's historical tour included some of the most heartwarming highlights about some of the individuals who lovingly called this place a second home - including those whose lives were cut short by the dreaded disease.  As the director of the NY Cancer Resource Alliance & Firefighters Against Cancer & Exposures (as well as being a fellow Long Islander), I have always known about Geri's work going as far back as 2001.  Admittedly, I never thought my level of philanthropy could ever compare to her achievements or her unending level of commitment.  But having finally met her, I was almost reduced to tears having personally felt Geri's brand of kindness and leadership to help ANYONE in need. As a 5-time cancer survivor herself, Geri understands the emotional tolls and the need for resources that a sufferer undergoes.  There is truly no limit to her will to share and give and help.  At long last, I join the many voices of appreciation and gratitude for Geri Barish - the ultimate role model for altruism, benevolence and moxy for making a difference!  She wins the lifetime 'cats' pajamas' award for "amazingness"!


This feature is sponsored in part by:













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Video Part 1: Introduction & Spotlight on Nancy (Natl Dense Breast Disclosure Act)

Natl Dense Breast Disclosure Law (9/10/2024) Video Part 1