Archive for the ‘10th Annual Conference for Young Women Affected by Breast Cancer’ Category

No Pink Ribbons Required

May 20, 2010

This entry was submitted by MJ DeCoteau, executive director and founder of Rethink Breast Cancer:

Most of us in our 20s and 30s are far too busy building a life, a home, a family, a career to think about breast cancer. And when it does strike a young woman, it’s a complete and utter shock. Rethink Breast Cancer was created by young women for young women. We’re working hard, creating savvy support, awareness, education and research programs that speak to the unique needs of young (or youngish) women busy balancing full lives.

I was just 18 years old when my mother was diagnosed with breast cancer and 22 when she died. My grandmother also had breast cancer so I felt like a bit of a ticking time bomb. When would I get it too? I picked up breast self-exam pamphlets at my doctor’s office, but they all featured a senior citizen on the cover and were very medical looking, even a bit scary. I remember one featured a water-color illustration of the naked back of a woman turned into a dark, shadowy corner to check her breasts. I opened it up and it was a three page fold-out of tiny black type—a thesis dissertation on how to check your breasts! Needless to say, I tucked it in a drawer and eventually chucked it out.

These drab brochures weren’t inspiring me so how would they motivate my friends and other young women who didn’t even have a family connection to breast cancer? Another challenge: I wanted to raise funds to fight breast cancer but pink ribbons, angel pins and traditional galas and golf tournaments weren’t for me. I saw the need for a breast cancer organization that was relevant to my generation.

In March 2001, with the help of an incredible group of passionate, energetic and creative people, Rethink Breast Cancer was born. Our mission: to help young women (and men!) concerned about and affected by breast cancer.  I was really inspired by the AIDS movement of the early 90s—with its bold, in-your-face messaging and hip and cool fundraising events. Why did breast cancer always have to be wrapped in a pretty (sometimes even tacky) pink ribbon?

By working with the fashion, music and design industries, we aimed to tackle the serious issues of breast cancer in a bold, creative, upbeat way. Today, Rethink Breast Cancer has a roster of events and initiatives, everything from Boobyball to Breast Fest, the world’s first breast cancer related film festival.

What’s also exciting, Rethink Breast Cancer has evolved from an awareness movement and funding cutting edge breast cancer research to also providing much needed emotional and practical support for young breast cancer patients.

Young women with breast cancer can face unique challenges—delayed diagnosis, aggressive treatment, fertility, child care and financial obstacles. Yes, the numbers of young women diagnosed each year are a small percentage of the total number of breast cancer cases. But, the needs are very real and Rethink is all about filling the gaps. We see ourselves as specialists. The message we send to the women we serve: We act your age! Often it’s the small details that make a difference. We’ve taken support out of the hospital setting and have tried to create support environments that have a young woman in mind—sunny lofts, cool retail spaces etc.

Over the years, and with incredible help from partners and volunteers, we’ve been increasing the number of support programs we offer to young women.

When I think back on how Rethink began almost ten years ago, I realize how far we’ve come. But we still have a long way to go. The explosion of Social Media spaces has made it easier than ever for people to share their stories, have their voices heard and be a part of an on-line community. We are very busy right now revamping our website, blog and Facebook fan page. It’s all about staying relevant and current, right?

Rethink started from my own personal experience but  it’s the hundreds of young women that have gotten involved that are driving our organization. It’s their stories that are shaping Rethink’s future. Please share yours with us at rethinkbreastcancer.com

In essence of graduation season, LBBC is highlighting young women and students who are in some way affected by breast cancer. Could you benefit from programs that are dedicated to young breast cancer survivors? Are you a young woman who is a loved one of someone affected by breast cancer? Share your thoughts on our facebook page.

No Plans for the Summer Because Every Moment is Special

May 18, 2010

4th Annual Conference for Women Living with Advanced Breast Cancer

If you are in college or are about to graduate college you always hear the phrase “What are you up to this summer” a lot. Mothers ask kids over the weekly Sunday phone call home. Your grandparents ask at family gatherings. Your professors ask when they run into you in the student union. Your friends ask at a crowded party. You are asked during job interviews. It can become a dreaded question!

I dread that question perhaps more than most, because my answer is always long winded. I hate being a “downer”. But I always take a deep breath and share. I have to share. My story, my plans are important.  This summer, I will be enrolling in a clinical trial. I am 26 years old, but I am enrolling in a clinical trial.

Five years ago, on June 3, 2005, I was diagnosed with Stage IV breast cancer.  I was 21 years old. It was two weeks after my college graduation. I had no family history of breast cancer. Two weeks after my Boston University commencement, I met up with a girlfriend at Starbucks. We had both just finished our first week at work and we were excited to commiserate. My phone rang while I was in line for my caramel macchiato. It was my mother calling to tell me I had breast cancer.

The fabulous post college summer plans I had made quickly changed and, instead of living with my four best friends, I moved home with my parents. I am going to be honest, I was more upset about moving in with my parents than I was about a cancer diagnosis. It wasn’t until the doctors found a tumor in my liver. It wasn’t until the doctors told me I was a Stage 4 cancer patient. It wasn’t before one doctor told me I had a 16% chance of seeing my 30th birthday that I stopped worrying about living the life I had planned and started wanting to fight for the life I still had.

So this summer, like almost every summer since my graduation five years ago, I will be spending this summer at the hospital.

This summer, I will be at the hospital for 4-10 hours each day, three days a week. I am enrolling in a Phase 1 clinical trial that looks at the toxicity of two chemotherapy drugs. The doctors are going to give me as much drug as I can physically handle before I beg for a break. I am enrolling in a clinical trial this summer that is designed to make me sick.

I take a deep breath and always share my story even though I hate sharing it because you all need to know that the life you have planned and set up for June may not turn out the way you expect.  Life is hard and crazy and never ever goes the way you have planned.

But remember, no matter what life throws at you, you will be just fine.  No matter what happens after you put on that black gown and goofy hat, stay true to yourself and you will be a fabulous success.

My life with cancer is really hard. I have lost a lot of friends because our lives are just so different. I am often too sick to go out on Friday nights. I have missed big birthday parties and events because I’ve had doctors’ appointments. I have had to change my personal and career goals. But I also love my life more than I ever would have without cancer. The friends I still have are the best friends a girl could ask for, and the times I am feeling well, when I do go out, I go out and I truly appreciate it.

The greatest lessons I’ve ever learned weren’t in the classroom, they were in the hospital room. So here is what I have learned:

Your parents: those parents whose blood, sweat, tears and $40 + thousand dollars brought you to this moment. Those parents you don’t want to move in with next month. They are your best friends. Contrary to what you may think now, they will not be here forever. They know you better than you know yourselves and they can help.

The best thing that ever happened me was moving in with my parents after graduation. I did not just live upstairs. I cooked dinner with them every night, my dad and I went on dates, I got to know my mom as a friend and not a mother. I learned about their first jobs and their graduate school experiences. I learned to turn to them for good and sound advice. In college, I spoke to my parents once a week. After college, I speak to my parents several times a day.

I’ve also learned to stop worrying about your answer to the question “what are you doing this summer?” or “what are you doing with your life?” Stop planning your whole life and setting certain goals to attain. Do not measure yourself based on the accomplishments of your peers. Life is too short to wish it away. Let go and enjoy where you are in this very special moment. Reflect on all that you have accomplished as opposed to planning for the next accomplishment. When I visited a doctor and he ran his hands through his hair and said, “I just don’t know what to do with you.” At that moment, I was forced to take stock of my life.

At that time, I had never been employed. I had never saved much money or even paid my own bills. I most certainly had never achieved all of the goals I set out for myself post college. I wanted to graduate and work for the CIA. That never happened and never will happen, but I am still a success.

I task all of you to spend some time today taking stock of your lives. Don’t take stock of your career goals or material possessions. Take a look at your character and at your relationships.  Take a look at the friends around you, because at the end of your lives, your relationships are what endure even after you are gone. Your relationships and your character are what matter and they are all that matter.

A Whole Lotta Love

March 8, 2010

This entry was written by Jayme Gittings, our Manager of Individual Giving:

Pink boas, cowboy hats and fuzzy bras.  Sexy swimsuits, brassy tee shirts and pajamas.  A whole lotta attitude and a whole lotta love.

That’s what I found at the 10th Annual Conference for Young Women Affected by Breast Cancer

This year was my first experience, but it was a milestone 10th anniversary for participants.  Coming from all corners of the country and across the world, over 800 women arrived to learn more about breast cancer, treatment options and ways to improve their own quality of life.  I was lucky enough to join the Living Beyond Breast Cancer team to support the conference and was blown away by the experience.

Each woman I met touched me in a different way.  The teenager who was diagnosed at 14 and found a community of women to embrace her.  The 73-year old who was diagnosed in the 1965 and feels it’s her job to come every year and “hand out hugs.”  The research scientist eager to discuss healthcare legislation with Rep. Debbie Wasserman Schultz.  The Canadian advocate who found a world of information and possibilities in the exhibit hall, many unavailable in her country.  The German native who powered through her most recent round of treatment to attend and find fellowship thousands of miles from home.  The New York specialty designer who left with a wealth of knowledge about how to best craft beautiful clothes for women with mastectomies.

I was awestruck.  No bouquet of wilting lilies, this group wanted real information, real help, real support…the real deal.  They grabbed hold of the chance to talk openly and freely about their concerns, hopes and fears surrounding their diagnosis.  In workshops, they asked probing and specific questions.  They spent the in between time meeting up at networking tables for groups like “advanced (metastatic) breast cancer” and “very young diagnosis.”  And they relaxed and socialized with hundreds of other women who knew exactly what it felt like to be a young woman affected by breast cancer.

The weekend was an emotional one for me.  I have not been diagnosed with breast cancer, but I have loved and cared for many who have.  My mother was diagnosed with a rare cancer at the age of 40, with two young children and a blossoming career, but without the support of a conference such as this.  As a witness to this collective force of women, I could only stand awestruck. 

I hesitate to use the word hope, because it is such an intangible concept, ephemeral almost.  Rather, I felt the power and strength of the women in those rooms.  It was palatable and concrete.  It was as real as every woman who walked proudly through registration looking for answers and compassionate support.

I was proud, too.  Proud to be a small part of such amazing work. 

Next year I will be front and center at the 11th Annual Conference. Will you?

Let us know what you thought of the conference by leaving a comment below or posting it on our Facebook page.

Stay tuned for photos from the event!

United We Stand

March 1, 2010

CURE guest blogger Suzanne Harp posted an entry about her experiences at our 10th Annual Conference for Young Women Affected by Breast Cancer this past weekend…check it out here!

Did you attend the conference this past weekend? If so, what did you think? What did you like/dislike? What topics do you want to discuss further? Share your thoughts by leaving a comment below or on our Facebook Page. Stay tuned for a more in-depth post with photos from the conference!

New Year, New Perspective

January 19, 2010

This entry was written by Erin Pianko, a breast cancer survivor who attended last year’s Annual Conference for Young Women Affected by Breast Cancer:

 

Erin is on the left

 

I was diagnosed with breast cancer when I should have been worrying about planning a wedding and starting a family. Suddenly, I found myself swimming in an ocean with hungry cancer sharks.  As well as being desperate for comfort and guidance, I also looked for humor and the glimpse of hope that my life would somehow return to normal.  It didn’t take me long to learn of organizations like Living Beyond Breast Cancer and the Young Survivor Coalition.  For many women, it takes time to warm up to the idea of attending a survivor conference.  But, hungry for information, I applied for a scholarship to attend the 9th annual Young Survivor’s Conference in Dallas. It was only four weeks after my diagnosis. 

This disease takes an aspect of control out of your life and my way of dealing with this loss was to attend the conference to meet other survivors, share my story, learn as much as I could and get involved.

Starting the Journey

The day I left for the conference I was excited and nervous.  I put my wig on and went to the airport, not knowing what to expect. 

When you wear wigs you start to spot them a mile away.  I learned this when someone approached me at the airport asking if I was attending the conference in Dallas. 

It would appear that my journey had begun before I even boarded the plane!  The survivors I met at the airport and while I was at the conference have been so important to me in this last year.  You can not put a price on that kind of support.

 

9th Annual Conference for Young Women Affected by Breast Cancer

 

Giving Back

The organizations represented at the conference gave me ideas of how to get involved to help end this disease. I have felt an obligation to give back since research done in the past is currently keeping me alive.  Six months after the conference I participated in the Susan G. Komen 3-Day Walk for the Cure and raised over $11,000.  Participating in this event was one of the most rewarding experiences of my life.

At last year’s conference, I felt the need to embrace ‘being in the club’, the club that none of us ever wanted to join. Sure it is ‘pink’…but think about what this ‘pink’ stands for: …

a united front to live life to the fullest and end this disease forever.

I have a different focus in attending the 10th Annual Conference for Young Women Affected by Breast Cancer this year.  My goal is to seek out women who have recently been diagnosed and be their cheerleader. I want them to have hope that they will get through treatment and be healthy again–words I needed to hear a year ago.  Whether you have just been diagnosed or are a twenty-five year survivor, think about attending the conference this year!

 Learn more or register for the 10th Annual Conference for Young Women Affected by Breast Cancer.


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