Breast Cancer Isn’t Pretty, and It’s Not Pink

Before I was diagnosed with breast cancer, I didn’t understand that October was Breast Cancer Awareness Month (BCAM). Sure, I might have noticed pink around this time of year and maybe given a donation to support women with breast cancer, but October was about Halloween, preparing for winter and the holidays … not cancer. Well, not anymore.

Rewind two years to October 2010. I was recovering from a bilateral mastectomy and preparing for my second surgery and treatment … I suddenly began to see pink everywhere. I remember wondering if it was always there and I just hadn’t noticed it … or if it was the time of year.

Now, October is the busiest time of year in my professional life. Pink is everywhere … it’s in the media, in print publications, on products with pink ribbons. The public seems singularly focused on breast cancer.

Each one of us has a different feeling about October. Some people cover themselves in pink to remind others of someone they have lost or that a cure is still needed. Others might reject anything pink with a passion.

The point is October is just a month – nothing more, nothing less. What we really should be focusing on is that there is currently no way to prevent breast cancer from occurring and we are still not able to cure the disease. Young women are being diagnosed every day – women just starting their careers, building lives, getting married, happily expecting a child or raising young children. Yes, many women live long lives after breast cancer, but the fact is that young women are still dying of breast cancer every day. This is not acceptable.

If you want to wear pink this October by all means do so – I know I will be – but please also help YSC raise awareness that young women can and do get breast cancer and remind people that breast cancer isn’t all pretty pink ribbons. We need to end to this disease.

#1 YSC is collecting signatures to represent the more than 13,000 young women who are diagnosed annually for NBCC’s petition to the next President (whomever that might be) to make ending breast cancer one of his initiatives. Please sign the petition today and get it into the hands of your family, friends and co-workers.

#2 AND we are going to tell the stories of 31 young women affected by breast cancer to showcase some of the unique issues young women battling this disease face. Please leave these courageous women a message of support on our special Facebook “31 Faces, 31 Days” app and share their stories with your friends.

Because the reality is – young women can and do get breast cancer – and they still die from it every day.

Breast cancer isn’t pretty, and it’s not pink. Please join me in getting these amazing stories of young women affected by breast cancer out in the public and gathering as many signatures are we possibly can!!!

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This Ride Is Not About Winning

The first of two Tour de Pink rides happening this weekend starts tomorrow, and I can’t tell if I am nervous that it will be too hard, excited for the challenge or anxious to have this behind me … probably a combination of all three.

I have to be honest, the thought of “what in the heck did I get myself into?” has crossed my mind a few times during the past month. Long gone are the days when a quick one-hour ride was something to look forward to — now I feel that if I am going to be on the bike, I need to be riding 50 miles, which, at my speed, pretty much eats up the entire day.

The East Coast Tour de Pink ride starts at the Philadelphia Art Museum tomorrow (Friday, September 28) morning. There will be 72 survivors riding, which is incredible!!! That means that out of the 249 people riding, 29% have been diagnosed with breast cancer and are now strong enough to ride 200 miles!

This ride is not about winning, it is about being part of a young woman’s journey to create her “new normal.” So many of these women have faced challenges greater then a huge hill on a bike, yet that huge hill takes the same strength and determination to conquer that breast cancer did.

Recently I have been thinking a lot about last year’s Tour de Pink ride, which I watched as an observer. I remember thinking “there is no way I could ever do that” as I watched the survivors climb onto their bikes day after day. I remember feeling amazed by the net of support that the community of riders makes around every survivor. I remember a longing to be strong again and to live without pain.

It feels like everywhere you turn these days someone is riding, walking or running for a cause. And to every one of you who donated to Tour de Pink in some way, thank you from the bottom of my heart! YSC expects to raise over $750,000 this weekend! Thanks to you, YSC is able to continue supporting all young women affected by breast cancer and ensure that no young woman facing breast cancer ever has to feel alone.

For those of you who live between Philly and D.C. – or know people who do – please come and cheer on our survivors and riders!!!  For the first time, YSC is setting up cheering stations – so come out and join us!!!

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Categories: Taking my Body Back

Remembering Kathleen (Kat) Werner, Breast Cancer Advocate, Volunteer and YSC Board Member

In Remembrance
Kathleen (Kat) Werner
1975-2012

Dear Breast Cancer Community,

We are deeply saddened by the loss of a fierce advocate, compassionate leader and member of our Board of Directors, Kat Werner. Kat died suddenly Sunday, September 23, as the result of a blood clot, about one week after giving birth to her fourth child. She was 37 years old.

Kat fulfilled so many roles in breast cancer advocacy, support and outreach. YSC and the community at large have suffered a tremendous loss. Kat’s intelligent approach to problems large and small, her generous supportive nature and overall zest for life were inspiring to us all. Kat had a remarkable ability to translate the research and science of breast cancer into information that was digestible for newly diagnosed women and explained the impact of science and research findings throughout the advocacy community. She often helped to lead the dialogue between advocates, survivors and researchers – gaining the respect, admiration and appreciation of them all.

Kat worked in breast cancer research advocacy full-time for various organizations including Young Survival Coalition, National Institute of Health, the Cochrane Collaboration, American Cancer Society, the Department of Defense Congressionally Directed Medical Research Programs, Virginia Breast Cancer Foundation, Research Advocacy Network, the National Cancer Institute and Susan G. Komen for the Cure. She was a graduate of the National Breast Cancer Coalition’s Project LEAD Institute, Research Advocacy Network Focus on Research, American Association for Cancer Research’s Scientist ↔ Survivor program, and the Alamo Breast Cancer Foundation’s Advocate Program.

In 2011, YSC was honored to have Kat join its Board of Directors (news release) as a strong voice for all young women with breast cancer, particularly those that connect using social media. As a young survivor, Kat supported countless other young women through their breast cancer diagnosis using Facebook, the YSC message boards and tirelessly volunteering.

Kat was funny, open-minded, engaging and never judged. Her warmth made it easy for young women to open up, listen and exchange perspectives. Her enthusiasm and unwavering dedication will be greatly missed and we will work to honor her by continuing to further the mission of YSC.

Kat leaves behind her husband of 13 years, Jeff, and their four children: Bethany, Liam, Elise and Micah (who was born last week).

Kat, we will miss your leadership, determination and passion.

Sincerely,

The YSC Board of Directors

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Categories: Guest Bloggers

Community and Celebration

Survivor Photo, 2012 Kansas City’s In Living Pink

This past weekend I flew to Kansas City to attend YSC Kansas City’s In Living Pink gala. It was awesome! Everyone looked beautiful and the energy throughout the event was electrifying, filled with love and compassion.

My favorite part of any YSC In Living Pink event is always the survivor photo. When you are standing there surrounded by so many spectacular women it reminds you how important the YSC community is to so many people. If you were to see any of these women walking down the street the LAST thing you would think of is cancer – your thoughts would probably be “Wow, she is beautiful … ” or “Check out her shoes!” But, the reality is that every one of these women has been told “You have breast cancer” and together, we are doing way more than just surviving!

Throughout the memorable speeches at the event a common thread weaved in-and-out …. Hope. Whether it was Dr. John Michael Quinn talking about the hope that got him thru his own cancer diagnosis, Mrs. Kansas Brandi Palmer‘s hope that all young women pay attention to their bodies and understand that young women can and do get breast cancer, or Lara Moritz from KMBC TV, who kept us all grounded in the hope for a cure some day. The nine survivors in the fashion show also provided hope  that there is life after breast cancer and you can thrive with your new normal.

The most amazing part of the evening was grasping the extreme generosity of the Kansas City community. In less than one hour, the generous individuals who bought tables and tickets donated an additional $30,000 to YSC!!! WOW!!! During the evening, I was overwhelmed with the energy of this community and their dedication to each other and all young women affected by breast cancer.

Thank you, Kansas City, for making me feel so welcome and for your determination to ensure that no young woman faces breast cancer alone. You are outstanding … and I can’t wait to see you all again soon!!!

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A Gift to My Daughter on her 21st Birthday

Nicole and her daughter Kailee in 2004

How amazing would it be to end breast cancer by 2020? Is it possible? How far are we from finding the cure(s)? These were some of the questions I had going into a five-day intensive training course through the National Breast Cancer Coalition (NBBC) called the Project LEAD® Institute in July 2012.

The graduates of Project LEAD are armed to become leaders in the research advocacy world. They go on to do things like work with scientists on clinical trials, review grant proposals and explain the significance of recent research to their local communities. Completing the program was one of the hardest, most challenging and rewarding things I’ve done in my life – which includes treatment for stage-3 breast cancer, getting my Master’s degree and parenting (my other full-time job). It had been at least 13 years since I’d stepped inside a classroom.

The first two days we reviewed basic science education, which completely consumed and overwhelmed my brain. Some of it came back to me, at times in my sleep, “chromosomes, nucleus, peptides, gene factors …” But some of the information was brand new and mind-blowing. There are so many things that have to happen at the cellular level to create the being we know as human. It only takes one tiny thing to go wrong, be out of order or just located in the wrong place, for a cancer to form and grow. This concept still blows me away. The way the cells talk to each other and have very specialized jobs is incredibly complex. It completely consumed me at the beginning of the week.

The third day was focused on clinical trials, which is one of the areas I’m most interested in. I never realized how long it requires, how many people, dollars and years it takes, to evolve from an idea to a clinical trial setting. It’s a miracle we have as many going on as we do. We are very close to having vaccines for certain types of cancers and that fills me with more hope than words can describe. Targeted therapies are increasing and the more we learn about the many kinds of breast cancer that exist, the easier it will be to treat or even prevent them with promising immunotherapy.

The final days were spent learning all about NBCC and how much it’s accomplished over the years as a coalition. The fact that it fought, and won, the right to have laypeople (like me) sitting across the table from scientists to discuss the latest research or grants is quite an achievement of the diverse group of people and organizations that comprise the NBCC. They have invested generously in training advocates like me to become involved at every level and to stay connected with continuous learning and networking opportunities.

Everyone is assigned a mentor and you work within a study group diving deeper into topics and ensuring everyone understands the material to the best of their ability. This was invaluable and these relationships will continue to fuel the work I do on both the local and national levels.

This was something I wanted to do for myself both personally and professionally. As a YSC staff member this background will strengthen my understanding of breast cancer science, research and advocacy. I feel honored to have been chosen and received a scholarship to attend so I can have this knowledge under my belt as I work with young survivors and volunteers.

Nicole and Kailee in 2012

I do have another reason and it’s purely a selfish one: to end breast cancer as a gift to my daughter on her 21st birthday. As it stands she will begin annual screening at age 24 (10 years before my diagnosis at age 34). She is now 13 years old and has watched this disease take at least 30 young women with breast cancer I have known personally over a span of eight years. Some were and are my best friends, and women whom I consider family. My daughter has endured more than her share of heartache and has had to grow up fast in many ways, as I did when I lost my mom to a brain tumor when I was a child. She deserves to have a future in a world without breast cancer.

Can this be accomplished in the next eight years? That is a question that remains to be seen, but I for one, want to be on the front lines doing whatever I can to make that happen. Thank you NBCC and Project LEAD for giving me my wings. Life is what you make of it – I intend to make mine count.

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Categories: Guest Bloggers

Staying in the Moment

Me and Kristin, living in the moment

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

All of us have given this concept thought at some point in our lives, either because we ourselves wish we did it better or because we are giving advice to people we care about who could use some help focusing on today.

I personally have struggled with this notion for much of my life. I have always lived in the future, working out in my mind what will be happening, instead of focusing what IS happening. But I am getting better and I have to be honest, I have cancer to thank.

When you meet and talk with a young woman struggling through breast cancer, you can’t help but look at life differently, realizing the wisdom behind this notion.

When you are faced with the horror of losing a young woman with breast cancer that you love, you find yourself focusing on right now because life is precious and you don’t want it to end.

I am also finding that the motto of living in the present is helping me through my journey of taking my body back from cancer.

For someone like me, who is new to the sport of cycling, all the equipment and the experience of sitting on a bike seat for six hours — focusing on the many hours to come as you ride towards your goal can be overwhelming.

But as my dear friend Kristin Westbrook always reminds me … that if you focus on the right now, it really isn’t all that bad. Actually, I have found that when you focus on the exact moment you are in and not how much more you have to go or a big hill in your future - the experience shifts. Suddenly you notice a cool bird flying beside you, or engage in a great conversation with a fellow rider, or just let your mind rest as your body works …

So, how will I make it from Philly to D.C. on a bike after only riding a bike six months, two years after a cancer diagnosis? WHO KNOWS!!! I am not going to think about it now, I will focus on today instead and know that each moment will be a step towards my goal of taking my body back from cancer.

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Categories: Taking my Body Back

Journaling for Better Health

A cancer diagnosis brings overwhelming feelings, a multitude of appointments, a sense of managing a second job for which the pay is fatigue, possible hair loss and a tired debit card laden with co-pays. As an oncology social worker and journal group facilitator, my goal with survivors is often focused on finding an action plan grounded in self-care amidst this flurry of activity.

The benefits of journal writing have been studied for over 25 years. Among those studies, included are ones focused on the benefits of journal writing with cancer survivors. Generally, the benefits have been positive.

If you knew that something as simple as writing in a journal for as little as five minutes might bring you some relief from the overwhelming feelings of cancer, would you give it a shot? If you knew that it is completely normal for you to feel triggered by walking back into the doctor’s office for a follow-up appointment, might you go a little easier on yourself?

I have heard survivors mention these following triggers coming up for them: walking past the infusion center; certain smells in the building where the doctor’s office is; and just going to park the car on the deck where they parked to go for treatment. Post-traumatic stress has been studied in cancer and I want you to know that you are in good company with others who have experienced symptoms like these.

Utilizing journal writing techniques can assist in healing and recovery from treatment and encourage a gentle grounding in the midst of the overwhelming experience of cancer.

In one of my cancer survivor journal writing groups, a big question which surfaced for the participants was, “Who am I now?” This came out of a technique called Lists of 100 created by Kathleen (Kay) Adams, the Director for the Center for Journal Therapy. Their journals led them to reframe that idea to, “I want …” I watched their lives change before my eyes. One participant, a young woman surviving breast cancer, completely changed jobs. Another’s relationship with his children, including a son serving in Afghanistan, transformed through writing and exchanging poetry.

Try this: Either dust off a journal that has been patiently waiting for you on your bookshelf or pick up one at the dollar store. Take five minutes to try one or more of the following prompts and then write for a few minutes about how it felt and what you noticed. Leave me a comment and tell me how it went. If you are new to journaling, please know there is no rule book. Your journal is yours and is a private relationship. The journal is your buddy and it will never, ever care what you write in it.

1: List: 10 Ways I Feel Safe

2: Describe a room in your house where you feel safe, comfortable and relaxed. Include as many details as you want. What time of day is it? What color are the walls? What photos are in plain view? What books are within reach? Is music playing? What is it? (You get the idea).

3: Here’s one to celebrate autumn: How will you celebrate and enjoy fall? Football? Pumpkins? Halloween candy? Planning a new, non-traditional dish to add to the spread for Thanksgiving? Jumping in raked piles of leaves? You tell me.

Remember to write feedback when you’re finished. And, please feel free to leave me a comment on the blog – I’d love to hear what surfaced for you!

A few references for you (email me if you’d like me to send you a PDF of any of these articles):

Adams, K., (1999). Writing as therapy. Counseling and Human Development, 31, 1-16.

Frisina, P.G., Borod, J.C., & Lepore, S.J., (2004). A meta-analysis of the effects of written emotional disclosure on  the health outcomes of clinical populations. The Journal of Nervous and Mental Disease, 192, 629-634.

Hampton, M.R., & Frombach, I. (2000). Women’s experience of traumatic stress in cancer. Health Care for Women International, 21, 67-76.

Kangas, M., Henry, J.L., & Bryant, R.A. (2002). Posttraumatic stress disorder following cancer: A conceptual and empirical review.  Clinical Psychology Review, 22, 499-524.

Stanton, A.L., & Danoff-Burg, S., (2002). Emotional expression, expressive writing, and cancer. In S.J. Lepore & J.M. Smyth (Eds.) The writing cure: How expressive writing promotes health and emotional well-being (pp. 31-51). Washington, DC: American     Psychological Association.

Ullrich, P.M., & Lutgendorf, S. K., (2002). Journaling about stressful events: Effects of cognitive processing and emotional expression.
Annals of Behavioral Medicine, 24, 244-250.

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Categories: Guest Bloggers

A Letter to Family & Friends about My Journey – Part IV

Pink EelephantLetter #4
March 7, 2011
A letter to my friends and family

It appears my Pink Elephant and I have kicked cancer’s butt and this will be our last email!

You have been incredible beyond words in your support and kindness about these Pink Elephant emails, which I used to voice my emotions (even if it was through an imaginary Pink Elephant) during the last six months.

So, as my imaginary Pink Elephant and I conclude our journey together, I feel it is only appropriate to give thanks where thanks are due … because we are only as ‘strong’ and ‘amazing’ as the people who love us.

First my parents … they dropped everything and came to NY without a thought to their own happiness and stood by Jeff and I for four difficult hard months. Mom and Dad – Thank you, from the bottom of my heart. You both saved me.

Second, my husband … Jeffrey held the heaviest weight of all in dealing with my cancer and my Pink Elephant day-in and day-out. Jeffrey – You are an incredible life partner, friend, and lover. I will forever be thankful for everything you have done for me. You are actually strong and amazing!

The final thank you I need to make is a bit more complicated and needs a little background to make sense.

When I was first diagnosed with cancer – even before my first surgery – I went to a support group for young women with breast cancer hosted by Young Survival Coalition (also known as YSC). It is a national nonprofit whose mission is to support young women diagnosed with breast cancer. I was more nervous about going to this support group than I was meeting the surgeon who was going to perform my double mastectomy – just to give you a sense of the fear and distrust I felt walking into a group of strangers that I was supposed to open up to!

I don’t think I will ever forget that evening – I had not met my Pink Elephant yet – and I’d only been diagnosed two weeks before. It’s bizarre to think back to how much I didn’t know about my future at that time.

The women in that room were outstanding and they blew me away. They were all going through their own battles with breast cancer, which clearly showed me a path to survival. They were full of compassion, but also anger at what they were forced to go through – which allowed me to also be both angry and compassionate. They listened, talked, shared stories of surgeries, and even showed scars and results of treatment. It was as if I was suddenly surrounded by people that new more about me than I did. And in a way, this group of women did.

Over the next six months these women became as important to me as sisters. While I’m sure I’ll know and love these women for the rest of my life – YSC, the reason I have them in my life, is the important thank you that I must make.

Because this nonprofit exists and is able to offer support to young women with breast cancer … I was able to find these women… and have strong and fantastic women walking with me every step of the way. I’ve spent over half my career working IN nonprofits with the hope of making a difference and this was the first time in my life that a nonprofit made a difference in mine.

It is not by random act that I am sending this farewell email from my Pink Elephant and me to all of you today….. it is very much on purpose. I have been waiting for this exact day because today I turn 37. My 36th year is finally over… today I start a new year, different yet the same, glad to be alive and cancer-free!

As I sign off – I hope each of you is as healthy, happy and fulfilled as you are capable of being. You are all strong and amazing in your own way and I know many of you are carrying your own Pink Elephants with enormous strength and perseverance – and I will continue to support you however I can.

As I conclude my journey, you all have my word that I will continue to give back and do whatever I can to ensure that no young woman ever feels alone when diagnosed with breast cancer because she isn’t … my Pink Elephant and I are here!!!

Signing off, with my greatest love and thanks,
Jen & her Pink Elephant

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Categories: YSC SYNC - Survivors

East Coast versus West Coast

I bet if we all took a look at our friends and where they live, we would have people close to us on BOTH coasts … and everywhere in between! Take me for example. I grew up in the Bay Area in California. I love my sweatpants, I wish could wear jeans to work every day, and I crave local beer more than I should. But I think somewhere the stork got lost when delivering me and I should have been born on the East Coast. The seasons calm my soul, the energy driven from so many people in a small spaces excites me. The “right coast” just feels right. That said – while I may never move back West – I will always call California home.

YSC is kinda the same way – but backwards. YSC started in NYC and built its initial community on the East Coast. Much of its culture today stems from East Coast traditions and styles, but like me, YSC has begun to call the “other” coast home, with the strong affiliates there and launch three years ago of the YSC Tour de Pink West Coast bike ride.

Now, don’t get me wrong – there are many places in-between where YSC has a powerful presence with outstanding volunteers who are deeply committed to ensuring that young women do not face breast cancer alone. However, as I train for my TdP East Coast (Philly to D.C.) and West Coast (Giant Bicycles in Thousand Oaks along the Pacific Ocean to Oakley’s world headquarters in Foothill Ranch, CA) rides, my brain is focused on the coasts.

Tour de Pink is YSC’s biggest fundraiser. And, as a result of all of the amazing participants who raise money to ride, YSC is able to invest in ensuring that young women are educated and empowered when faced with breast cancer.

The East Coast TdP three-day ride sold out within a couple months due to its popularity and long history (although people can still register for a one-day ride) – but the West Coast ride, our newest ride of the two, is only about half full.

I’m sure you all know AT LEAST one person on the West Coast and I’m also confident that if you are reading this, you believe in YSC. So my ask of you is simple: Would you please ask everyone you know on the West Coast to display the post below on their Facebook page? It’s a small action that will directly support YSC and our important cause.

Do you live on the West Coast? Have you been touched by breast cancer? Did you know young women also get breast cancer? If so, please consider riding, cheering or simply helping Young Survival Coalition spread the word about its upcoming YSC Tour de Pink West Coast bike ride October 12-14 in Southern California. Please pass this on to everyone you know on the West Coast and let’s see if we can sell out this ride to reach more young women with breast cancer. It’s as easy as sharing and reposting this link!!! http://www.ysctourdepink.org/site/TR/TourdePink/TourdePink-WestCoast?fr_id=1310&pg=entry

I know the West Coast is full of people who cycle for a cause. That is sooooo West Coast …especially in Southern California!!! I think the challenge is just getting the word out.
So please everyone – post either this blog OR the above post onto your Facebook page and let’s see if we can all sell out the West Coast ride, so YSC can raise funding to reach even more young women affected by breast cancer.

I need your help!

YSC needs your help!

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Categories: Taking my Body Back

Y-ME and Its Counselors Leave a Legacy of Breast Cancer Support and Partnership

Y-ME, one of the oldest breast cancer organizations, has closed its doors of service. While to some this is old news and for others it may feel irrelevant, for me it strikes a chord of sadness. For more than 30 years, Y-ME served as a great point of contact for anyone diagnosed with breast cancer. As the years fleeted, the organization became most known for its 24-hour live, multilingual support hotline. Thousands of newly diagnosed women were able to speak to a breast cancer survivor anytime – day or night. Hundreds of volunteers stood ready to serve as a support to someone who was “in their shoes.” In July, Y-ME ceased services and has subsequently filed for Chapter 7 bankruptcy.

There have been many articles written about the organization, the abrupt dismissal of staff, and its shutting down of services. Some reference the financial meltdown of ’08 and its impact on nonprofit organizations. Others question the need for such services during the changing technological times. Whatever the reasons, the doors are closed and the services are no more.

What is most relevant to me are the thousands of women who are currently being referred to Y-ME, who finally muster the strength to call, only to hear a message to call another organization. And the hundreds of volunteers who, because of their experience, have dedicated themselves to helping and supporting others affected by breast cancer.
As part of the community of breast cancer organizations, YSC is saddened by the loss of one of its own. YSC and Y-ME have worked together on numerous projects and programs to meet the needs of women facing breast cancer and those who love them. We’ve collaborated on numerous trainings expressly for young women and continue to use that experience to service our constituents. YSC is strengthened by such partnerships and remains dedicated to serving young women and engaging volunteers in meaningful ways. For those who were diagnosed as a young woman and received Y-ME peer support hotline training, we invite you to join our efforts to support YSC’s constituents. If you are interested in this opportunity, please complete this form.

There is strength in numbers. Although that number has been reduced by one, we are still strong – we are not alone. There’s a community of cancer organizations striving to meet the multifaceted needs of women with breast cancer. We acknowledge Y-ME’s role in raising the profile of breast cancer support services and YSC remains ready to serve and engage young women diagnosed and those that care about them.

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Categories: Guest Bloggers