Lisa Marie, Our Belle of the Ball

How it all started

Lise and Lisa

Lise and Lisa Marie Muccilo

My husband, Mike, and I planned and hosted the first Butterfly Ball in October 2013 to celebrate his sister Lisa Marie’s 10th anniversary of her passing. To honor her memory we created the Lisa Marie Muccilo Foundation and donated the $25,000 raised during our first Butterfly Ball to Young Survival Coalition.

Lisa Marie was diagnosed at 27 years old with aggressive breast cancer. She started working with YSC, helping many young women get through their diagnosis and treatment while facing breast cancer herself.  She became a Young Survival Coalition Board Member, Outreach and Education Committee Co-Chair and founded the YSC of New Jersey, which was an affiliate office at the time.  

Lisa Marie was a beautiful, loving and compassionate person who was taken from us much too soon on August 18, 2003 at 33 years old. Her passion to help young women with breast cancer inspired us to create the Butterfly Ball and is our way of honoring her while supporting YSC.

Michael, Lise, Dominick and James Muccilo at first Butterfly Ball in 2013 in honor of Lisa Marie Muccilo.

Michael, Lise, Dominick and James Muccilo at first Butterfly Ball in 2013 in honor of Lisa Marie Muccilo.

From Start to Finish – How to Host a Ball

Believe it or not, Mike and I did most of the work for the first Butterfly Ball. We still plan much of it ourselves and have expanded the event in the last three years. We certainly believe anyone can plan an event like the Butterfly Ball. Here’s some advice if you want to plan a big party, whether it’s to honor someone, celebrate a cancerversary or just have fun while supporting YSC:

Explore your connections.

 – Our first Save the Date and invitation were designed by an awesome local YSC volunteer. This year, Mike had a colleague design the Save the Date postcard and invitation, which we had printed through another connection we had.

 – A friend’s band performs and provides the entertainment at the ball.

Host the event in a place you’re familiar with.

 – We held the event at the North Jersey Country Club, which we were members of. This made the planning much easier for us.

Ask for help and use volunteers.

 – We use volunteers to help us stuff and prepare the invitations to send out.

 – Friends and family donate items for the Silent Auction.

Make it easy for people to be generous at your event.

 – Besides the Silent Auction, we host a 50/50 raffle, where the winner receives half of the money and the other half is donated.

 – We use electronic squares to process credit card donations on site that go directly into our LMM Foundation account.

Keep it simple.

 – We have a buffet dinner to make things easier for people.

 – In 2013, the event was much smaller with just those who were closest to us. Each year we expand the Butterfly Ball and guests keep coming back to enjoy themselves and support YSC.

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A huge thank you to YSC Champion Lise Muccilo for sharing how the Butterfly Ball started and some guidance on how to create your own fundraising event to support young women affected by breast cancer.

If you’re interested in starting an event like the Butterfly Ball in honor or celebration of someone who has benefited from YSC’s programs and resources, reach out to us! We’re here to help from start to finish and every step in between.

For more resources and other great ideas for DIY fundraising events, click here.

September is YSC Champions Month, so stayed tuned for other awesome YSC Champion highlights on Facebook, Instagram and every Friday right here on YSC’s blog.

 

 

 

 

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Ovarian Cancer Awareness Month

What Do Young Breast Cancer Survivors Need to Know?

September is Ovarian Cancer Awareness month. The American Cancer Society estimates that 22,000 women will be diagnosed with ovarian cancer this year. There is no reliable method to screen for ovarian cancer, so most of these women will be diagnosed at a late stage and only about 45% will survive five years after diagnosis.

Who is at risk?

The average woman has about a 1.3% lifetime risk of developing ovarian cancer but for some, the risk is much higher. Genetic testing can now identify women at high risk of developing ovarian cancer during their lifetime due to inherited mutation.

 – BRCA1 mutations leading to a 50% chance of developing ovarian cancer.
 – BRCA2 mutations leading to a 30% chance of developing ovarian cancer.
 – Mutations in other genes including BRIP1, RAD51c, RAD51d, and the genes associated with Lynch syndrome also increase ovarian cancer risk.

An estimated one in five women with ovarian cancer will have a mutation in a gene associated with hereditary cancer. As a result, all women with ovarian cancer meet national guidelines for genetic counseling and/or testing for hereditary cancer.

Reducing ovarian cancer risk

Ovarian cancer is difficult to detect. Experts recommend identifying women who are at high risk for ovarian cancer so they can consider risk-reducing surgery where the ovaries and fallopian tubes are removed before cancer develops.

What does this mean for young breast cancer survivors?

Many of the mutations that increase ovarian cancer risk also increase breast cancer risk. Women who were diagnosed with breast cancer before the age of 50 meet national guidelines for genetic counseling and/or testing.

What can you do?

1.) Know you’re the history of cancer on both sides of your family
Mutations in the genes that increase ovarian cancer risk can be passed down from your father or your mother. Look for the following signs of hereditary cancer on both sides of your family:

 – Ovarian or fallopian tube cancer at any age
 – Breast cancer at age 50 or younger
 – Cancer in both breasts at any age
 – Male breast cancer
 – Triple-negative breast cancer before age 60
 – Ashkenazi Jewish heritage and breast cancer before age 60
 – Multiple relatives on the same side of the family with breast, ovarian, prostate, melanoma and/or pancreatic cancers.

 2.) Find out if you should talk to a genetics expert
A genetics expert can look at your personal and family history and help you decide if genetic testing is right for you. Consult with a genetics expert with if:

 You were diagnosed with breast cancer before age 50 have not had genetic counseling or testing. National guidelines on who is eligible for genetics evaluation for cancer risk have evolved over the past decade and women who were not offered testing in the past might now qualify.

 You tested negative for a mutation in BRCA1 and BRCA2 before 2013 (particularly if you have a family history of cancer). Genetic testing has also changed over the past few years, with expanded panels now looking at different types of mutations in BRCA1 and BRCA2 as well as mutations in other genes that increase cancer risk.

Knowing that you have a mutation that increases ovarian cancer risks allows you to take steps to reduce your risk of ovarian cancer and inform other family members that they might be at risk for hereditary cancer.  This September, consider your family history and see if genetic counseling and testing is right for you.

 

FORCE logo***
Lisa Rezende, PhD is Vice President for Education at FORCE, a national nonprofit dedicated to improving the lives of individuals and families affected by hereditary breast, ovarian and related cancer.

Additional Resources from FORCE

Know More: resources for women with ovarian cancer.

Should I Get Genetic Testing?”: the most requested resources on genetic testing

Find a genetics expert

FORCE XRAYS program reviews breast cancer stories in the media.  Learn more about ovarian cancer in their XRAYS report “Institute of Medicine report on state of ovarian cancer research and patient care underscores the need to know if you are at high risk for ovarian cancer,” which reviews recent recommendation to improve ovarian cancer risk prediction, prevention, early detection, and care.

Learn more about hereditary breast and ovarian cancer at the 2016 Joining FORCEs Against Hereditary Cancer Conference, which will be held October 6th-8th in Orlando, Florida.

campaign-TeamFORCE-opening

FORCE staff and volunteers are dedicated to improving the lives of individuals and families affected by hereditary breast, ovarian, and related cancers.

 

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Get Hitched, Give Support

Yesterday marked the kick-off of a very special event happening all month. For all of September, we will be celebrating the awesomeness that are our YSC Champions. Many people ask us how they can help the thousands of young women that face breast cancer each year. Becoming a YSC Champion is just one of those ways. It’s a really unique opportunity to have fun while doing good in your local community.

One of my favorite Champion events is happening on November 10 in Seattle. Get Hitched, Give Hope is Seattle’s premiere bridal charity and gala–a marriage between a swanky party for those planning a wedding and a fundraiser that generates thousands of dollars for charities each year.

I asked Natasha Larsen, Vice President of Marketing, a few questions to learn more about Get Hitched, Give Hope — our YSC Champion highlight this week.

 

How did you get involved in this awesome annual charity event?

The very first year I attended Get Hitched, Give Hope, or GHGH, it was as a guest. My colleagues and friends are the founders of GHGH and I went to support them. After that, I was hooked and was asked to join the team! I’ve been volunteering ever since. I believe so much in this event — the love and generosity behind it.  So far, GHGH has raised $67,000 for Young Survival Coalition!

Why did GHGH choose YSC as its beneficiary?

GHGH was founded by women and it was very important that we chose a local charity that resonated with us. Supporting those affected by breast cancer is something that is very near and dear to all of us here at GHGH. We all know of someone who has been affected, not to mention the possibility of being affected ourselves. So, YSC was a perfect fit!

Copy of Get Hitched Give Hope_photo credit La Vie Photography_2

Get Hitched, Give Hope’s team and volunteers donate their time and expertise to make this charity event a huge success! 

GHGH is a very unique bridal event, do you think people feel differently about attending and giving back because all proceeds go to charity?

Yes! That warm fuzzy feeling is the best and I truly believe that the combination of bidding on something they actually need and want, paired with the knowledge they are helping others makes our guests very generous. Even if they end up not winning the auction, they still give in so many ways!

Do you think GHGH has extra special meaning since it helps support young women facing breast cancer? Do survivors attend?

GHGH is definitely special because it’s a one-of-a-kind event focused on helping those in need. Our guests connect with all the individuals they help by attending. There are so many survivors around us, with many young survivors attending as well.

Amazing bridal dresses from Seattle’s finest wedding vendors!

How does GHGH help spread awareness that young women can and do get breast cancer?

During GHGH, we support and talk about YSC to help spread the word about breast cancer in young women, while focusing on the event itself. We also have YSC materials on hand for anyone who needs and YSC volunteers and staff are available to speak more about its programs and mission.

Many times the young women we support have to put their wedding dreams on hold for treatment, some are even diagnosed while in the middle of wedding planning- do you have any advice for them on how to approach planning a wedding or tips for savings?

I can’t imagine what it’s like to face breast cancer! It’s such a challenging time, so perhaps it’s best to really focus on what’s important — marrying the one you love. Letting go of details that you don’t really care about can be very liberating, though it may take some time and honest evaluation to determine what those details are. It’s so very easy to get wrapped up in all things wedding, especially in the age of Pinterest. Of course, cutting down on the guest list is the most effective way to save, but we realize that those facing breast cancer want to have all of their loved ones present. Hosting a desserts and drinks reception is significantly less expensive and still provides that celebratory feel. It can also be held in a smaller, less expensive venue or even a private residence since tables and chairs for dinner are not necessary.

Besides attending GHGH, is there anything else a young couple about to get hitched can do to help young women affected by breast cancer?

There are so many ways to give to the causes you are passionate about. If supporting YSC is of interest to you, check out YSC Champions for some great ideas!

Get Hitched, Give Hope’s
9th Annual Wedding Auction & Gala: Havana Nights
November 10, 2016 at 6:30pm
Four Seasons Hotel Seattle
99 Union Street, Seattle, WA 98101
To learn more, click here.

 


Get Hitched, Give Hope is just one of the many amazing YSC Champions who support YSC. Anyone can be a Champion!

If you’re getting hitched soon, one fun idea is to use Donation Favor Cards — an easy way to give to YSC while offering your guests something unique and special on your magical day. Lots of couples have been opting to give donations to charities that have positively impacted and supported them in lieu of wedding favors.

We created a beautiful Donation Favor Card and a Donation Sign that you can easily print at home and share at your wedding.

Every wedding is unique, which is why we put together a Pinterest board featuring other donation favor card ideas. That way you can design yours exactly the way you want!

All donations to YSC are tax-deductible and help to sustain and expand programs that directly support and empower young women affected by breast cancer.

For more ideas to inspire the YSC Champion in you, click here. Become a YSC Champion Today!

 

 

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Categories: YSC Champions

Court Approved! We’re Ready To Adopt

Our Adoption Process: Part 3

Last month, I offered an update on our adoption process and wanted to check back in. My husband and I had just submitted all our documents after undergoing quite a few steps, both administratively and emotionally. So far, I was most surprised by the home study. I expected an interrogation-like investigation, think CSI without a crime scene, but instead we had a warm and understanding visit from a very nice social worker. They’re on your side trying to help you become parents.

Of course, all of these processes are intimidating and a little scary, but it’s for the right reasons. We all want to make sure precious children have the best experiences in life. I’m glad to report that we did something right because the courts approved us as adoptive parents! We’re absolutely delighted and gave ourselves a little break to celebrate with close friends.

adoption letter_2

We’re so excited!

What’s Next For Us

Now it’s onto the next stage of the adoption process, which if you went the independent route like us, includes developing a profile on a site like adoption.com or adoptimist, or you can look at creating your own Facebook page for potential birth mothers to review. We found it really helpful to view other parent profiles for ideas on what we should include on ours.

We’ve also put together a short film to add to our profile. I don’t have the finished article yet, so I can’t share it unfortunately! But my advice would be to ask yourself “what would I want to hear if I was a birth mother?” It’s important to be natural, keep it short and make sure your day-to-day lives come across. They want to see what you’re really like, not how you present yourself on a polished video.

We’re also employing a coach who is very experienced at speaking to birth mothers. As an adoptive mother herself, she’ll walk us through what kind of questions we may get asked and how to respond. She’ll also review our adoption.com profile and give ongoing advice. This support will be crucial for us during a time that is both exciting and scary. We’re moving ahead with the hope that we’ll welcome a child into our lives when the time is right. Wish us luck!

 

 

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Categories: YSC SYNC - Survivors

YSC Pups Celebrate National Dog Day

National Dog Day celebrates dogs of all shapes and sizes. It honors the four-legged best friends who bring comfort during challenging times and joy into our lives every day. Instead of me talking about how incredible the YSC dogs are, I’m going to let them do the talking.


Preston

Preston loves showing off his handsome good looks

Hi! I’m Preston. My life changed about 3 years old ago when I rescued my mama and she introduced me to a life filled with sunshine! Now I travel around the country and attend different conferences. I love meeting new people–almost as much as I love dinner time! Follow my adventures on Instagram!


 

Emoji and Inky enjoying bro time

Emoji and Inky enjoying ‘bro time’ on the couch

Hey everyone! I’m Emoji and I’m a blind, deaf, rescue senior, and my brother is a rescued ewok! Collectively we have over 22k Instagram followers, and we help spread the word about adoption and senior rescue! I recently became the VP of Puglicity for Pug Squad and Inky is my security guard. In our spare time, we enjoy testing new recipes to share and hanging out with our insta-famous, rescue friends! I hope you’ll say hi on Instagram and Inky likes when he meets new Instagram friends too!


 

Rosie posing for the camera

Rosie showing off her paw modeling skills

Fun Facts About Rosie:
 – Loves napping and chewing on shoelaces and playing in the grass!
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I recently discovered my bark and it’s the most surprising thing! It works great for getting Mommy’s attention.
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My mommy says that I learn stuffs every day like new tricks and words!


 

Rocky the Best Man

Rocky made the perfect Best Dog

Fun Facts about Rocky:
 – My dad and I are the bestest and most perfect best friends! We love to relax and eat!
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Cuddling is my most favorite hobby!
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Sometimes I get away with sleeping in the biggest house bed with the humans, and when I do, I sleep just like them on my back and use their pillows for my head.
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My bark sounds pretty scary, but I swear I’m a big fluffy marshiemallow that wouldn’t hurt a fly!
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I’m not the most athletic in the family. I can walk about 20 minutes, but it feels like a marathon!


 

Zuko has perfected his puppy eye looking

Zuko has perfected his puppy eye look.

Fun Facts About Zuko:
 – My mom says I look like a teddy bear.
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My favorite activity is nibbling on human ears! They taste so good!


 

Tex and Phoebes sharing a Starbucks Puppuccino

Tex and Phoebe love sharing a Starbucks Puppuccino

Hey. I’m Phoebe and my annoying sister’s name is Tex, but everyone calls her Tex Mex. Two years ago she came to stay with us as a foster and she’s overstayed her stay by like 1 year, 11 months and 28 days. But she can be fun sometimes. Mom gets mad because we play fight all the time and it usually ends with humps, but it’s just teenage angst. UGH parents! Just check out my Instagram and you’ll see how weird and annoying my little sis is.


 

Maggie at the park

Maggie loves being outside with her favorite Frisbee

Fun Facts About Maggie:
 – My favorite thing is to catch my frisbee outside
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I love my Mom’s job because her work stuff is in our house and sometimes I get to chime in on conference calls.
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Mom says I have too much energy for my own good. I don’t know what that means, but it doesn’t seem true.


 

Lila and Gigi playing

Lila and Gigi say the big bed is perfect for afternoon play time.

Hi, I’m Gigi and my sister is a baby giant, but we call her Lila. We’re professional singers; I’m the 1st Soprano and Lila is the 2nd Alto. Lila was the runt of her litter and she only has 7 toes on my back paws because her mom bit them off (OUCH!)! I’m super special because it’s very rare for a schnauzer to be solid white! We both love to go swimming in the creek, but I usually go exploring while Gigi stays and plays in the water. My sister is way more into social media than I am, but you should follow along on her adventures!


 

Drew staying cool on

Drew knows how to stay cool and comfortable

Fun Facts About Drew:
 – I played matchmaker for my mom because I have the same name as my dad. Having the same name makes a great conversation starter.
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When it comes to pooping, I prefer to go in the middle of the road. Mom says it’s awkward, but I don’t understand why.
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My favorite place is the beach! Wait, did someone say BEACH?! CAN WE GO TO THE BEACH! OMG I LOVE THE BEACH!?! OMG

 

Not sure how you’re going to celebrate National Dog Day?

 – Donate to the Louisiana State Animal Response Team who is currently aiding the animals and families affected by the historic Louisiana floods
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Teach your dog a new trick.
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Volunteer at your local shelter. Many shelters need help socializing and walking dogs.
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Take your dog to a local park or beach.
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Assist an ill or elderly neighbor by walking their dog.
 – Donate blankets, towels, toys and food to animal welfare organization.
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Check out some of these National Dog Day ideas!

 

 

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Categories: YSC Behind the Scenes

Just Keep Knitting

I’ve been a knitter off and on since I was twelve. In my thirties, I started getting serious about advancing my knitting skills and learning how to incorporate knitting into my career as a therapist. It was fun to challenge myself by learning new patterns and stitches and the repetition in knitting made it a good way to unwind and relax.

This green scarf was a knit-a-long challenge I worked on during diagnosis and treatment planning.

Little did I know that using knitting to relax would be put to the test after I had my first mammogram. My doctor recommended a baseline mammogram but at the time, I wasn’t worried about breast cancer. I even put it off for a year before going in December 2014 because I had no family history or a lump. I remember knitting in the waiting room for my mammogram and for the subsequent ultrasound that I ended up needing. I kept knitting as I watched women come and go for their exams while I was still waiting. Knitting helped to quiet the “what if” voice that kept trying to push through my mind.

When I waited to have a biopsy because of my ultrasound results, I kept knitting to calm my worries and help me focus on the moment. It was also a great conversation starter as other women in the room asked about my knitting. Even the nurse performing my biopsy was a knitter!

On January 2, 2015, I was diagnosed with DCIS. Following my diagnosis, I knitted at every doctor’s appointment, as we decided the best treatment plan, while I waited to go for my double mastectomy, prepared for my reconstruction, during recovery for both surgeries and as I dealt with losing my job. Through all this, I just kept knitting. “Can I keep knitting?” was at the top of my question list for every doctor.

I knitted for so many reasons during this time. To help me cope with questions like What next? Why me? Why now? I knitted when information and choices became too overwhelming. I knitted as my sister and husband were discussing options with doctors. Knitting was something I could control during an out of control time in my life. I was able to follow patterns and create beautiful pieces in the process. The more I knitted, the more I felt like myself. I could even see my recovery in my knitting.

IMG_4439

I knitted this purple sweater for my niece. I felt very out of control between recovery and my job situation so I started the sweater as a way to focus my energy.

Looking back, it’s clear knitting helped quiet the background chatter in my head and process the information so I could make the best decisions for myself. There were still plenty of moments of tears, anxiety and anger, but I have no doubt that knitting helped me through those times. A few pints of gelato also helped. I am lucky since my cancer was caught early and today I am healthy with no evidence of disease. Every few months I need follow-up appointments and you’ll find me in the waiting room of my oncologist’s office knitting away. I cannot control the outcome of those follow-up visits, but I can control my knitting.

Now, I teach knitting as a tool to help others cope with challenges in their lives and manage their anxiety. I’ve seen the benefits of knitting as it helps people cope with unfavorable diagnoses, substance abuse and the anxieties of daily life. Whether you’re an expert or new to knitting – it offers you control and a hobby you can share with others.

Read more about the research and science behind the therapeutic benefits of knitting here:

Sticklinks
Project Knitwell

Interested in learning how to knit or want to connect with knitters in your area?

Ravelry
American Craft Council 
Knit Purl Hunter

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Thank you, Andrea, for sharing how knitting helped reduce anxiety and cope with your breast cancer diagnosis and treatment!

We have a number of helpful presentations from others on maintaining emotional wellness during and after breast cancer. Check out a few here:

Survivor and Self: Nurturing, Wellness, Becoming Whole Again by Jean Rowe, LCSW, OSW-C, CJT (PowerPoint Presentation)

Surviving and Thriving Ever Day of My Life by Kimberly Jewett

Living Fully With, Through and After Cancer by Tambre Leighn, MA, CPC, PCC, ELI-MP (PowerPoint Presentation)

Clearing the Clutter – Mental & Physical Space by Carolyn Koehnline, MA (Presentation Document)

Journaling: Healing with Words by Howard M. Rice

Managing Fear of Recurrence and Anxiety by Julie Larson, LCSW
(PowerPoint Presentation)

Connecting with others who understand is also a great way to work through anxiety. Sign up for the upcoming In-Treatment Online Video Support Group or reach out to the amazing women in your local Face 2 Face Network.

 

 

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This Casual Cyclist Did It!

I am a casual cyclist. By casual I mean, I have a bike and I very occasionally ride it very short distances. Ever since I’ve been on staff at YSC (5 years now!), I’ve been intrigued by Tour de Pink, but it always seemed like something impossible for me. How could I ride that far? It seemed like an awesome event, but something for serious cyclists only.

Last year when YSC announced the Inaugural Tour de Pink South, which claimed it was an easy, flat course, something in me made me hit the register button. I had grand plans of becoming a serious cyclist in that time between hitting register and the actual ride, but that didn’t quite happen. I started off strong(ish) with 3 short bike rides the first week I was officially signed up. However, one thing I didn’t really account for was Midwest weather. The cold settled in and this casual cyclist wasn’t about to go for a ride in the snow! I spent a little extra time at the gym over the winter and waited for spring. Our spring was cold, rainy and windy. I officially logged a 4 mile ride and a 12 mile ride outside before heading to Florida for Tour de Pink South. Needless to say, I was terrified! I felt so unprepared and just knew it was going to be a disaster.

While my training was certainly lacking, I decided this was a once in a lifetime event for me and I was going to have fun. I knew there would be amazing support along the course and if I couldn’t ride that far, or fast enough, there would be some pretty great SAG vans to help me out. When all the riders gathered for breakfast before the ride started on Friday morning, I felt totally intimidated. I was in a room full of really serious cyclists. We gathered at the starting line and just as I was about ready to fake an injury or illness, they called all the survivors to the front. Wow. It was simply amazing to see the number of young breast cancer survivors that were riding. For some, they were already cyclists, but for many, this was an opportunity to take their body back after cancer, to show they could do something amazing and that’s when I remembered why I was riding. I was going to attempt to ride my bike 200 miles because I could and because there are too many young women who can’t.

Once the ride started, I found my rhythm. I found groups of other cyclists going my pace and I just pedaled. And I did it. I rode nearly all 200 miles of Tour de Pink! This out of shape, very casual cyclist did it!

Riding in Tour de Pink changed me. It turned this casual cyclist into a not quite as casual cyclist who has signed up to ride in three organized long distance rides this summer. It has given me confidence in myself as a cyclist. More importantly, it made me even more committed to ensuring young women facing breast cancer have the support and resources YSC is able to provide because of the money raised riding in Tour de Pink.

I can’t wait to ride in the second YSC Tour de Pink South and I’d love for you to join my team! So if you are even a little bit interested but aren’t sure if you can do it, or you think spandex shorts aren’t your thing—you can do it! Believe me, if I can do it, so can you! Not to mention 200 miles on a bike will have you loving padded cycling shorts in the end.

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Interested in joining the ride of a lifetime?
Registration is only $75 if you sign up between now and August 31!
Use discount code EarlyBird and register here.
This is the biggest discount offered for the ride, so share it with your friends and family to help you build your team or join Mary’s team! The team with the most riders registered by October 1 will win a free team photo taken by the professional photographer at the ride.

See you in the Sunshine State!

 

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Categories: Tour de Pink

August Research Round-up

Staying current with recent breast cancer research news, especially when it pertains to young women, is essential. It is also important that young women participate in ongoing research so that our population is well-represented in data and the results meaningful to young women.

Here we have gathered recent research articles, ongoing studies, surveys and events that may be of interest to you. Be sure to follow us on Facebook as we regularly post pertinent research information as it becomes available.


Studies Seeking Participants:

Metastatic Breast Cancer Collateral Damage Project
If you have metastatic breast cancer, the Dr. Susan Love Research Foundation wants you to share your real-life experiences of living with the disease. They need your help to capture and quantify all the life-altering impacts – the collateral damage – of MBC and its treatment so the organization can later offer specific recommendations to improve quality of life for all people with MBC. Complete the Metastatic Breast Cancer Collateral Damage Project questionnaire today to help make a real difference.

The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance
Are you nearing completion of chemo or radiotherapy for early stage breast cancer?  If so, please consider participating in an online study on the Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance.  You will take a survey at 3 time points (end of treatment, 3 and 6 months later).  This study is IRB-approved and managed by a researcher who is a young breast cancer survivor! Click here for the survey. For questions, contact Ann Marie at pottera2@vcu.edu    

The Survivor Insomnia Study
Dana Farber is recruiting cancer survivors in the Boston area who are experiencing insomnia to compare a new 4-session group behavioral intervention to a standard, single-session group educational intervention for improving sleep. Participants will complete questionnaires at the beginning of the study, as well as 6 and 12 weeks later and be asked to keep a sleep diary. No medications are involved. After the study, participants will have the opportunity to take part in the group to which they were not randomized. If you would like to participate or have questions, contact a study coordinator at 617-582-8260 or survivorship_research@dfci.harvard.edu and a member of the study team will respond. You will be asked a few questions to determine whether or not you are eligible for this study.


Recent Research Results:

Neratinib after trastuzumab-based adjuvant therapy in patients with HER2-positive breast cancer (ExteNET): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial
Interesting news in HER2+ breast cancer.  Recent study results showed that use of an oral agent called Neratinib for one year after completing Herceptin in patients with early stage HER2+ breast cancer reduced the rate of recurrence and death by 33% versus placebo.  For patients who were also ER+, the reduction in recurrence or death was 41%.

FORCE XRAYS Quarterly Digest For Spring 2016
FORCE XRAYS separates the help from the hype. The XRAYS third Quarterly Digest is a compilation of this quarter’s research reviews, empowering young breast cancer survivors and those at high risk with an understanding of what is being said in the media about breast cancer, and and the information necessary to make informed decisions. 

Adaptive Randomization Pairs Two Treatments With Two Breast Cancer Subtypes
Results of two studies taken from the I-SPY 2 trial showed that the use of adaptive randomization in a phase II trial was able to successfully identify agents that would be most effective at treating certain molecular subtypes of breast cancer. Here, neratinib was found to be effective in HER2+ breast cancer and veliparib (a parp inhibitor) in combination with carboplatin showed effectiveness in triple negative breast cancer.

Young Cancer Survivors Lack Information on Fertility Issues and Options
Young adult female cancer survivors have unmet informational needs and decisional conflict regarding post treatment fertility preservation (FP), according to results of a new study. The results suggest survivorship care has gaps with regard to reproductive health counseling.


Advocacy & Upcoming Partner Events:

URGENT: Call Chairman Fred Upton Today!
Congress may be in recess, but we need to continue pressing the House Energy and Commerce Committee to bring HR 1197 (Accelerating the End of Breast Cancer Act) to the floor for a vote!  With over 270 bipartisan cosponsors, this bill needs to move forward. Click here for contact information and help in crafting your message.

FORCEs Against Hereditary Cancer Conference
Does cancer run in your family? Have you had genetic testing or are you considering it? Do you want to learn the latest information about cancer genetics, targeted therapy and options for detecting, preventing and treating hereditary cancers? Attend the annual Joining FORCEs Against Hereditary Cancer Conference, October 6-8, 2016, in Orlando, FL.  Featuring world experts, this comprehensive program offers sessions on guidelines, research, medical decision-making and communicating with family members. The conference provides opportunities to network, participate in research and ask leading experts questions about hereditary ovarian cancer.  Attendees include survivors and high-risk individuals affected by hereditary cancer as well as patient advocates and health care providers who treat high-risk patients. Learn more and register today!

 

 

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Categories: News & Updates

Newly Diagnosed? Get Organized!

“You have breast cancer.” Those are scary words! So, now what? Where do you even go from here as you come to terms with the challenging road that lies ahead.

As you start to meet with your healthcare team, you’ll have a lot of information to digest. We put together a comprehensive guide to help you prepare for your next appointment. The more you organize, the less overwhelming things may seem. As you learn about your diagnosis, meet your healthcare team and discuss treatment options, it will be helpful to have all your notes as well as records and contact information. Here are a few tips for staying organized and informed:

Ask questions! The more you understand, the easier your decisions will be. Don’t leave the room until all your questions have been answered. Bring someone with you, especially in the beginning, to help you keep track of your questions, take notes and just be an extra set of ears.

Write it down! Keep a notebook or your Newly Diagnosed Navigator with you so you can jot down questions or thoughts anytime. Writing it down will help you remember it later. You can also record your appointments on your phone to listen to them later. You can download free iPhone apps here or Andriod apps here.

Get copies of everything! Store all your medical records, including your pathology report and any diagnostic tests in one place. Even the notes your doctor makes during every appointment can be included as part of your medical files. You have a right to all of this information. There are lots of reasons you should have copies of everything, including making it easier to seek a second opinion and helping you during tax time so you can claim the most deductions.

NDN_2014_coverChecklist for Your Appointments:

 – Your Newly Diagnosed Navigator
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Questions for your doctor(s)
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A list of your current prescriptions
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Notebook and pen
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Someone else to take notes or a way to record your appointment (voice recorder)

We also turned our most popular planning worksheets into fillable PDFs that you can download, edit and then save on your computer. Take them along to your appointments to help you communicate with your healthcare providers.

To use our fillable forms, open the document, save the PDF to your computer then work directly from the saved document.

Appointment Log
Healthcare Provider Contact Log
Side Effects Diary
Insurance Contact Log
Insurance Payment Log
Medication Log
Pathology and Diagnosis Record

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Categories: Resources & Support

Celebrating National Health Center Week

TwitterHeader-girl-ENGToday marks the start of National Health Center Week, which highlights the great impact of community health centers across the nation. Over the last 50 years, these health centers have provided invaluable preventive and primary care services to underserved populations–helping to reach vulnerable populations who may not otherwise have access to vital healthcare services. Through their extensive network of over 9,000 sites, community health centers provide care to approximately 24 million patients, including those who cannot pay or do not have health insurance.

We recognize the key role of community health centers in providing high quality healthcare to their communities in a way that is affordable and cost-effective. Through their culturally appropriate, linguistically supportive and community-focused programs, these centers provide essential services to young women affected by breast cancer and their families. From primary care to screening programs, community health centers serve as the “medical home” for many and ensure more young women diagnosed with breast cancer receive the ongoing cancer care and survivorship support they need.

Additionally, many patients rely on these centers for their regular health screenings. Whether it’s an annual check-up or a visit for a suspicious lump, the centers may be where a young woman discovers her cancer diagnosis. Primary care doctors often provide the first step in detection, referrals and appropriate follow-up care. Many community health centers also provide important ancillary programs like behavioral health services. We’re so appreciative of the support that community health centers offer underserved young women and their families as they enter the unfamiliar territory of a cancer diagnosis.

If you would like to utilize the services of a community health center in your area, you may find a location by entering your zip code. If you are uninsured, you can also find out about your health insurance options through the federal healthcare.gov website.

Learn more about the National Association of Community Health Centers’ advocacy work, research, programs and partnerships here.  

Everyday we encourage you to be your own best health advocate. Take some time to learn about the reliable resources available to guide you in scheduling additional health screenings. It’s important to remember–especially for young women affected by breast cancer–that some screening recommendations may be specific to your health and family history. Ask your doctor what is right for you. 

Below are additional medical care resources:

Secure Payment: Managing Your Health Insurance

Financial Assistance for those living with metastatic breast cancer

Long-term Survivorship information

Also encourage your loved ones to do the same by being in charge of their health! Everyone can benefit from health reminders and the comprehensive resources available.

 

 

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Categories: Taking my Body Back