On the Ground in Houston, TX

The saying, “everything is bigger in Texas” is right on.  The weekend of March 21–24 was huge for YSC and survivors, volunteers and the medical community in Houston.   As YSC’s South Regional Field Manager, I had the pleasure of visiting our constituents and representing YSC at events raising awareness of breast cancer in young women.

Back row, from l to r:  Nancy Piña, Robert Piña, Robin Myers, Valerie Loper, Sandy Castillo, Marvin Sharp. Front wow, from l to r: Cindy Kicinski, Michelle Piña Amos

At the Houston Aeros Breast Cancer Awareness Game, March 23, 2013. Back row, from l to r: Nancy Piña, Robert Piña, Robin Myers, Valerie Loper, Sandy Castillo, Marvin Sharp. Front wow, from l to r: Cindy Kicinski, Michelle Piña Amos

Our Texas State Leaders,  Michelle Piña Amos and Sandy Castillo (also a Face 2 Face Leader), were my fantastic hosts for the weekend.  Since it was Texas, their hospitality was HUGE, and their planning and preparation for my time in Houston was outstanding.  Our weekend was packed with meetings, tours and events.

After arriving Thursday evening, I met Sandy to discuss our plans for the weekend and catch up since we last saw each other at C4YW.  We strategized and even convinced the restaurant manager where we ate to host a breast cancer awareness fundraiser this summer.

A busy Friday was highlighted with meeting Roberta Levy Schwartz, one of the co-founders of YSC.  Sandy and I met Roberta for lunch at Methodist Hospital, where she is an executive vice president.  We toured the Cancer Center and saw the infusion rooms, the meditation area and met hospital staff.  It was a delight meeting Roberta and sharing my experiences as the South Regional Field Manager.
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Face 2 Face Networking
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After our visit to Methodist, Sandy and I met with Alicia Kouri and Josh Fisher of the Houston Aeros hockey club to finalize the details of the next day’s huge awareness event to benefit YSC.  The Aeros are truly committed to community partnerships and supporting YSC’s mission.

Our last stop was at the Breast Health Collaborative of Texas, where we met Program Manager Kerry Ingram.  Kerry was a wealth of knowledge and provided us with local resources for the ResourceLink database. It was great to see our Newly Diagnosed Resource Kit on display in their office and share other YSC resources.

Prior to my visit, Michelle and I had communicated several times but had never met in person, so I was really looking forward to meeting her.  Over dinner Friday night, we talked for hours!  Michelle shared Houston’s history as well as the history of YSC there, and we worked on plans for the next day’s events.

Saturday was the day that I had been looking forward to for months.  Early morning found us setting up our exhibitor table at the Hereditary Breast and Ovarian Cancer Patient Education Conference at M.D. Anderson.  Michelle and I represented YSC, sharing information with survivors, caregivers, the medical community, volunteers and staff from other local organizations.

The conference was packed with sessions on nutrition, sexuality and intimacy, oncofertility, reconstruction and more.  The women stopping by our booth were excited to learn more about YSC and how we could support them.  We met a lovely young woman who was interested in attending the hockey game that evening.  I shared my tickets with her and was excited to see her and a friend later at the game.

After the conference, I went back to the hotel to get ready for the Houston Aeros Breast Cancer Awareness Game benefitting YSC.  Walking in, I was greeted by a sea of pink.  There were exhibitor booths, t-shirts designed by the players’ wives for sale, autographed pucks for sale and a massive silent auction.  YSC volunteers worked hard spreading the word about YSC, selling pucks and passing out thousands of pink gloves to the over 9,000 in attendance.

Local Girl Scouts celebrated their 101st anniversary at the game with a Hockey 101 class that included a patch, participating in a pink glove dance after the first period and raising awareness. Even though the Rochester Americans won in a shootout, the game was a huge success!

The Houston Aeros are donating over $7,000 in proceeds to YSC.  Our thanks to the Aeros for this partnership.  It was a pleasure to work with all the staff involved, particularly Alicia.  Her attention to detail and tireless efforts made for a truly amazing evening.  In a quote from Alicia, I am extremely thrilled with the evening. Everything from the vendors to the silent auction went great. YSC is an incredible organization, and I am honored to have worked with them. The Aeros hope to continue our partnership in upcoming years.

After a quick breakfast debrief on Sunday, I headed home to Indianapolis.  Monday back at work was busy with sending out thank you notes and follow up messages about YSC resources and materials that are available to those I met while in Houston.  I look forward to continued partnerships in Houston and extending our reach even farther across the HUGE state of Texas!

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Categories: YSC SYNC - Survivors

Join YSC at OMG 2013

OMG 2013 LogoBeing diagnosed with cancer at a young age sucks. There is really no other way to say it: It sucks.

Some of us feel suddenly alone and “different” from our friends – and who can blame us?

Some of us feel angry that the illusion of immortality was stolen from us too soon – I know I have felt that way.

Some of us feel scared for the future and wonder what “new normal” really means … ok, maybe all of us feel that way.

The point is, if you are under 40 and have been diagnosed with cancer — whatever type of cancer it is — it all sucks!

There is a very special gathering in Vegas this year for all young adults with cancer, and I am honored to be a part of it and attend. It is called the OMG! Cancer Summit for Young Adults. Brilliant, right?

OMG is about walking into a giant room and seeing hundreds of young people and saying to yourself: “They all have cancer like I do?” or “I can’t believe how many of us there are.” That is what OMG is about. It is about seeing, feeling and knowing that you are not alone.

The conference is April 25–28th, and there are sessions on genetics and research, the ePatient revolution, caring for the caregiver, how cancer impacts all parts of you, healthcare legislation and reform, pain management and so much more. The point is that all young adult cancer survivors will find something to help them — it is made specifically for us — and it is awesome!

For all you young breast cancer survivors, I would love to see you there!! At the conference, YSC will be hosting a reception just for young breast cancer survivors to help connect our under 40 survivors from across the country. Here is a special YSC code to get a discount on registration: OMG2013YSC.

We are going to have lots of fun giveaways and YSC stuff, so I hope you think about attending! Once you sign up, you will receive a special invitation from me with the event details.

YSC is a strong partner of Stupid Cancer and OMG, and I am proud to help spread the word through our network about this amazing conference.

Think about it, you probably know someone or know someone who knows someone, who was diagnosed with cancer (not only breast cancer) before the age of 40. It is important that in the young adult cancer movement we support ALL young adults with cancer and ensure that they have the support and opportunities to meet other young survivors that we have here at YSC.

Please join me in helping to spread the word about this remarkable conference, and please ask anyone you know that decides to attend to introduce themselves to me in Vegas; I would love to meet them!

So one last thing, the infamous OMG road show begins soon. It is worth following and absolutely hilarious; yes, sometimes we have to make cancer funny. Here is the trailer video:

See you in Vegas …. this is going to be EPIC!


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Categories: YSC SYNC - Survivors

Innovation + Medicine = Change @ TEDMED

If you were to buy a new car today and drive it from New York City to Los Angeles, stopping along the way at dealers to service the car, when you arrived 3,000 miles later, the dealer would know exactly what was done to your car throughout your journey and what needs to be done next.

TEDMED_WH_RGBBut, when we go to doctors, we fill out paper forms and give our medical history every time. Why do our cars get better care then our bodies? Why hasn’t medicine kept up with the times to ensure the most effective care for all of us?

Every one of us has experienced frustration with a situation like this of some kind … and, to be honest, it is getting old. It is time for change. But the problems are so huge and so complicated that I have often wondered what would be needed to start moving us in the right direction. I think I have found one of the answers: TEDMED.
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Great Challenges Day


In a few weeks, from April 16–19, Stacy Lewis, YSC’s Chief Program Officer and Deputy Chief Executive, and I will be attending TEDMED for the first time. TEDMED is where innovators and leaders from many disciplines come together to try and create a better future in health and medicine … I like to think of it as Silicon Valley meets medicine.

If you are not familiar with TED Talks, these are 20-minute talks by leaders from every field to help push thinking and innovation. TEDMED is TED Talks, focused on medicine … with a twist. It is a large conference in D.C., where leaders from medical colleges, teaching hospitals, government agencies and nonprofit institutions from around the world come together to create a better future in health and medicine. Real change by the right people: Cool, right?

Stacy and I both received scholarships to attend and will be participating in a variety of different conversations — to ensure the voice of young women with breast cancer is heard — to push the thinking that we know needs to be pushed.

One part of the conference that I am most excited about is the Great Challenges Day. This part of the conference is about leveraging the science of storytelling and working in small groups to search for a more complete understanding of the key issues that impede a healthier future. I will be participating in the following conversations:

  • The Caregiver Crisis: Caregivers have few tools, few support systems and receive minimal, if any, training for these responsibilities. What innovations can we develop specifically to support the caregiver community?
  • Medical Innovation: Which proven strategies from Silicon Valley, the Moon landings, the Manhattan Project or other successful models could be applied effectively to achieve faster, yet less costly innovation in health and medicine?
  • Sleep Deprivation: What is the full range of causes (social, medical, technological, economic, etc.) that engender and promote this widespread problem? What are the first-order and second-order effects, and beyond, of sleep deprivation? What would it take and what would it mean for America to view sleep as the third pillar of total health alongside diet and exercise?
  • The Role of the Patient: If patients retain their traditional role, does that mean doctors are in charge? Are both in charge somehow? How is “power” shared among all stakeholders and how should it be shared?
  • Managing Chronic Diseases: How can we innovate to help patients prevent, manage and treat their chronic diseases and achieve better outcomes?


At the same time, Stacy will be participating in these conversations:

  • Inventing Wellness Programs: What kinds of innovation should we be thinking about and how can we bring them to market as soon as possible?
  • Promoting Active Lifestyles: How do we invent broadly popular and achievable ways for people to become more active, so as to replace those “lost” energy expenditures?
  • Impact of Stress: Given that stress is difficult to quantify and varies from person to person, how do we better understand the role of stress in the larger picture of health?
  • Addressing Healthcare Costs: How do we foster a thoughtful, civil dialog that focuses on science and the public interest, in a way that has a reasonable chance of creating an approach we can all support?
  • Impact of Poverty on Health: America would be better off if everyone were healthy, regardless of income, especially since government programs cover some costs directly. How should we think about the role and impact of poverty within the larger question of health?


The whole point of TEDMED’s Great Challenges Day is not to solve these complex problems but rather to provide America and the world with an unbiased view of these challenges, incorporating thoughtful and very different perspectives. TEDMED’s belief is that through an open, ongoing dialog we can foster a much better understanding of each challenge and then make real change that will make a difference.

I am honored to have been invited to participate in this important conversation and will bring what I learn back to YSC and the community of young women diagnosed with breast cancer we serve.

More to come …

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Tour de Pink 2013 … It’s Time!

YSC_Tour_4C(1)For many of us across the country, it feels like spring will never come; as winter drags on, the last thing many of us are thinking about is our bike. Actually — I am not sure if that is true — I have thought about my bike a lot and day dreamed of long rides in the warm sun … but when will spring come?

YSC Tour de Pink® (TdP) changed my life last year. I am not overstating or being dramatic — it really did. Because of cancer I did something that I never would have been able to do before: I rode 200 miles on a bike in three days. I am not saying that it was always pretty or graceful, and those who rode with me know what I mean, but that is not what matters — what matters is I did it.

On the first day of TdP East Coast last year, I rode more miles then I ever had in my life … before the first rest stop. Now I am NOT suggesting that new riders follow my lead; the point is that by the first rest stop I was already in uncharted territory personally! And while I was LITERALLY the last person to arrive at the finish that day — I was so proud of myself that I was delirious with happiness.
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TdP East Coast
TdP West Coast

The people in my life that know me the best supported in me in my training; but I know (because they admitted it) they thought that I would spend a lot of time in the SAG vans and not ride every mile. While I LOVE the SAG vans — the 2012 TdP East Coast was about me finishing every mile under my own power … I made a commitment to do it, and that was final. And I did. My doubters have all admitted that they were surprised. Translation: Anyone can do this if they put their mind to it.

Queen quoteSo here I am, six months after finishing the biggest athletic accomplishment of my adult life. I have gained weight and not touched my bike in five months. What is up with that?

But April 1st is almost here — the end of early registration for TdP — and I am forced to remember how I felt a year ago … terrified and uncertain. A year ago I could hardly ride on the gym bike on the lowest level for 15 minutes (I had not ridden a bike since I was 10) … a far cry from 200 miles between Philadelphia and D.C.

So my point is: It is time. If you have thought about riding TdP, now is the time to register. If you register by April 1 you get a pair of arm warmers, which is hella cool, and you also put a date in your calendar to works toward.

Even though it is still cold outside for many of us and fall seems like a lifetime away, we all need something to work towards that not only supports a good cause but helps us all to remember to focus on ourselves in our busy life. We all should give ourselves more attention; so join me in riding and doing something for ourselves!

I am riding in both rides again this year. If you want to ride, raise the $2,500 minimum and are looking for a team to join, let me know.

TdP East Coast is September 27–29, and West Coast is October 18–20. Sign up and make the commitment that you know you want to make — it’s time!

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Categories: Taking my Body Back

YSC Research Think Tank Demands Change


YSC’s Research Think Tank

“Patient advocacy” has become a buzz phrase in recent years within the research and medical communities. Grant review boards, such as the Department of Defense (DOD) and National Institutes of Health (NIH), have begun to invite a small handful of advocates to sit at the table and provide insight on future research priorities. The “big name” conferences such as American Society of Clinical Oncology (ASCO), San Antonio Breast Cancer Symposium and American Association for Cancer Research (AACR) now have patient-scientist programs to incorporate patients and/or advocates into the realm of their discussions.

Nevertheless, these large venues are designed to serve as catchalls for what many still consider a heterogeneous disease with one set of problems and one set of solutions. Young survivorship is treated as an after-thought — a side conversation in a small conference room in annex B of the convention center. Despite good intentions, these meetings have barely begun to skim the surface when it comes to exploring the unique challenges of managing breast health, breast cancer and survivorship in young women as compared to our older counterparts.
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YSC Research Think Tank
Breast Cancer in Women Younger Than 40 Years
ASCO Annual Meeting


YSC, on the other, hand has tackled this problem head on.

Last month, YSC hosted a truly one-of-a-kind event in the Washington D.C. area, bringing together breast cancer scientists and advocates to discuss the most pressing issues surrounding how to improve upon the quantity and quality of life for young women with breast cancer. Even the nor’easter did not stop us!

Together, we formed a small yet vocal constituency representing universities, cancer centers and health care nonprofits from Boston to Texas to Seattle. Our voices echoed what has been said many times before: that young women are highly underrepresented in scientific literature and that more research is needed to progress further in this area.

The energy in the room was both contagious and magnetic as scientists and advocates explored ways to bridge the gaps in our understanding of this unique and wretched disease. In work groups, we thoroughly reviewed and summarized existing literature as it pertained to young women on six distinct topics: Quality of Life & Survivorship; Treatment; Metastases; Risk Factors; Fertility; and Pregnancy.  For two days, conversations buzzed around what we know, what we do not yet know and what we deemed to be top research priorities for YSC moving forward. Although each person’s motivation differed slightly, we were all there for the same reason: to do everything in our power to create a world without breast cancer.

During the symposium, we paid special tribute to Randi Rosenberg and Kat Werner, two legacies and driving forces behind research on breast cancer in young women. Through their contributions we have begun to develop a strong vision and advocacy plan for addressing the needs of younger women. A 2003  article, Breast Cancer in Women Younger Than 40 Years, co-authored by Randi and published in the International Journal of Fertility, attests to the lack of information about and available to young women — an area that sadly still remains poorly understood nearly a decade later. We intend to carry on Randi and Kat’s work, to push forward what was so near and dear to their hearts and, simply, to make them proud.

So, what’s next, you ask? Plenty!

YSC is in the process of compiling, reviewing, and discussing the information gleaned from this symposium.  This information will be used to draft a prioritized research agenda for young women with breast cancer and to author a State of the Evidence Report which will be submitted for publication in peer-reviewed journals in order to scream from the rooftops: “here we are!” and “pay attention!” In doing so, it is our hope that one day the research community will give us our due attention and truly, fully address the needs of young women with breast cancer.

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C4YW 2013: Sisterhood is Forever

Sisterhood-YSC-resized(Update 4.2.13: The “Sisterhood” t-shirt referenced in the second paragraph is now available for purchase in YSC’s online store)

There is really no way to describe it to those who have not attended. C4YW is a respite for those who have been diagnosed young with breast cancer … for three short days. It’s a place where you feel normal again. It’s a place where the things being discussed are somehow relevant to you. It’s a place where some of the most amazing women I have ever met come together and thrive together.

This year YSC sold a t-shirt at C4YW that said “Initiation sucks. Sisterhood is forever.” We just created this t-shirt and were curious if the women attending C4YW would like it. We had only three of these t-shirts left when the conference wrapped. While a t-shirt is just a shirt, it represents something powerful.

Referring to breast cancer as a “sisterhood” might seem odd to some, but when I think about the strong connections women make with other survivors through both YSC and this conference, sisterhood is the only word powerful enough to explain to other people what these women mean to each other … and to me personally, as a young survivor myself. None of us wanted to be here — but we are — and now we are bound, much like sisters.
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Sexy After Cancer
Passionate Nutrition
Breast Cancer Fund

This was my second time attending C4YW. I was so impressed with the breakout session topics and speakers. The sex and intimacy workshop by Barbara Musser was awesome, and the Healthy Eating After Breast Cancer by Jennifer Adler was so informative. There was a Lesbian Women: Dating and Relationships session, as well as workshops geared toward the men who were there to support their partners.

In my opinion, our final plenary speakers, Nancy Buermeyer and Connie Engel from Breast Cancer Fund stole the show. As a woman who has worked in the environmental arena for years, the mission of Breast Cancer Fund is close to my heart. Nancy and Connie did an outstanding job of explaining environmental considerations and providing realistic steps we can all take to lower the impact and level of chemicals to which are our bodies are exposed. As they spoke, I looked around the room and noticed many of the 650 attendees were taking notes. It made me feel proud to see so many of my sisters engaged and know we can deliver such important and meaningful information to the young women we exist to serve.

In the end, we know that money makes the world go around. So, it’s important to give a shout out to our partners who made this amazing meeting possible: Susan G. Komen for the Cure, Eisai, Celgene, Amgen, Avon Foundation for Women, Breast Cancer Wellness, Genentech, Oakley and so many others.  Thank you!

Love also makes the world go around — I felt surrounded by it at C4YW and honored to be a part of this unique sisterhood.

Hope to see you in Florida next year (Orlando, February 21–23, 2014)!!!

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Categories: YSC SYNC - Survivors

YSC Responds to JAMA Article on Breast Cancer Incidence

JAMAAn article published in the Journal of the American Medical Association (JAMA) on February 26, 2013, discusses the incidence of breast cancer in the United States and concludes that the number of young women presenting with metastatic disease at initial diagnosis has been increasing over time.  Given the subject matter of this article, YSC believes it is important to share with our constituents what this article says and what it means for young women diagnosed with breast cancer.

In “Incidence of Breast Cancer with Distant Involvement Among Women in the United States, 1976 to 2009,“ [hereinafter “JAMA article”] the authors examined data from the U.S. National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database to find trends among breast cancer diagnoses.  The authors observed a “small but statistically significant increase in incidence of breast cancer with distant involvement [metastasis to distant location such as bone, brain, lung, etc.] for women aged 25 to 39 years” of age. (JAMA article, at 805).  This increase accounted for the women who presented with metastatic (Stage IV) disease at time of initial diagnosis.  According to the SEER 9 database, the incidence of women in the U.S. aged 25 to 39 who presented with metastatic disease at initial diagnosis went from 1.53 per 100,000 women in 1976 to 2.9 per 100,000 women in 2009. The authors do not know the cause of these results and admit that further studies to corroborate their findings are necessary.

So what does this study mean to YSC, to young women diagnosed with breast cancer, and to healthy young women?  First, there is no cause for alarm or panic.  As the authors of this article state, their observations need to be corroborated and if that can be done, then further research is needed to ascertain why these numbers appear to be rising.  The JAMA article is a retrospective observational study, and as such, gives us very limited information.  This study does not and cannot explain why the distant diagnoses may be rising in young women.  As the authors admit, those diagnosed with distant disease at the time of their initial diagnosis is “relatively small.”  We also need to bear in mind the limitations of retrospective surveillance data.  SEER 9 data only captures 10% of the U.S. population from nine specific areas that may or may not be representative of the whole country.

How does this study affect young women already diagnosed with breast cancer?  It doesn’t.  This article does not address the risk of recurrence or metastasis for a young woman previously diagnosed with breast cancer.  Its findings applied to metastatic disease at initial diagnosis and not recurrence or spread of disease.

How does this study affect healthy young women?  The study does not warrant any change to YSC’s position that all young women should be familiar with their breasts, know what is normal for their body, and go to their healthcare provider if they find something that is not typical.  As the JAMA study revealed, the incidence of localized and regional disease in 25 to 39 year olds has not changed since the 1970s. From 2005-2009, the median age at diagnosis for cancer of the breast was 61 years of age. Approximately 0.0% were diagnosed under age 20; 1.8% between 20 and 34; and 9.9% between 35 and 44.  See http://seer.cancer.gov/statfacts/html/breast.html#incidence-mortality

Does this article show a need for breast cancer screening in women aged 25 to 39?  No.  Current screening methods are not effective in young women.  Recent research calls into question the benefits of screening mammography for women under 50.  Just last December, a paper by one of the JAMA article authors and Dr. Gilbert Welch showed the harms that mammography screening has caused over the last three decades.  See http://blog.youngsurvival.org/?p=2046.

Last, but certainly not least, this study shows the need for young women to be informed about science, statistics and critical review of study reports and media summaries of those reports.  If you are interested in learning more, we encourage you to consider attending Project LEAD, a training course offered by the National Breast Cancer Coalition, which is now accepting applications for its annual Institute.  http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/

Regardless of the exact number of young women diagnosed with metastatic disease at initial diagnosis, it is too many.  There is an urgent need to study metastatic disease, especially in young women who are generally understudied and excluded from metastatic clinical trials. YSC has always emphasized the importance of researching breast cancer in young women and this article supports that need.

A comprehensive summary of the article, explanation and commentary can be found in YSC’s detailed statement.

YSC would like to thank Joy Simha for her input and assistance with developing this statement.


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Categories: Guest Bloggers

From Drifting to Found: YSC Gave Me a Community

PrintI thought it would be easy to write a blog post about what the YSC community boards have meant to me in the five years since my breast cancer diagnosis. However, I was wrong. The feelings this topic raises are very strong for me and are hard to corral into words.

Nonetheless—here goes. Five years ago last month, I was diagnosed with Stage 2 breast cancer. I was a freelance writer smack in the middle of many projects; and I was trying to plan a family. In addition, I was a vegetarian and a devoted yoga-doer. I’d rejected the pill for health reasons, I drank in true moderation, and I’d smoked maybe ¾ of a cigarette in my life. Didn’t that count for anything?

I found local resources—my hospital’s breast cancer support group, for example. And these resources were great, but, as is common, I found that many of my co-survivors were a good deal older than I was and at a different stage of life. They had grandkids; they collected social security. They didn’t have to worry about the income they’d lose during treatment or to have anxiety attacks about the prospect of losing health insurance. Some, even as they faced chemo and surgery and radiation as I did, flat-out told me they felt bad for me. I appreciated their concern, but this didn’t feel especially helpful.

Then, one night, I discovered YSC’s web site and its community bulletin boards. And there, finally, were photos of women who looked like me. And I could see their “stats”—where they’d started out, diagnostically, and where they were now. Did someone have my pathology? My stage of disease? How was life going for her?

I was grateful to see that people were finding humor, and lots of it, even in difficulty. There were stories of wigs gone bad, dates during chemo, clueless coworkers saying any number of annoying things. One girl, diagnosed at Stage 3, asked in her stats, “Why do I always have to ‘go big’?” It was funny. My shoulders unclenched. I would not be pitied here, and I would not be alone.

I found, through the YSC boards, a group of women who’d be starting chemo when I would—March 2008. We christened ourselves the March Moxies. I can’t overstate how much it helped me, as I headed into treatment, to know they were doing the same. Each day I’d report to them on my side effects, my hair (and then lack of), my hopes and fears, and, in fact, the clueless things my own coworkers ended up saying; and I’d eagerly read their reports of the same. I loved and needed them so much that, when my treatments continued on a bit longer than that of other Moxies, I attached myself to another cyber-group of women, the Mayflowers, who were still in treatment. What we all experienced together created a permanent bond.

Five years have felt like five minutes and also, in some ways, like a lifetime. I’ve gained  invaluable advice about treatments, options, side effects, and recovery, as well as an amazing community and very dear friends. I’ve also cried again and again over beloved YSC sisters lost far too soon. The loss doesn’t get easier. I never get used to it; nor would I want to. But I carry these friends with me always, and I’m grateful to feel them in my heart.

Knock every piece of wood, my own current health status is good, and I hope that my “stats” will give hope to others. Not all the life issues that concerned me five years ago have been resolved, but I’m here to continue to work on them, to reach for my goals, and  to experience what life brings. I’m happy to be available for newly diagnosed women, as others were there for me when I was diagnosed. I’m here to say you too can do this, and you will not be alone.

I love the newly revamped boards. They’re streamlined and easy to use, but they offer some great new features. One is the Member Map, which helps you find YSCers in your area. There’s nothing like the power of young survivors getting together, one-on-one or in groups, to comfort, laugh, cry, celebrate, or simply share a meal. I spend time with YSCers in my hometown and also, if possible, everywhere I travel. If you’re in New York City or coming here, let me know—I would absolutely love to see you.

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Categories: Guest Bloggers

YSC’s Research Think Tank Remembers Randi Rosenberg (1965-2010)

Diagnosed with breast cancer at the age of 32 in 1998, Randi Rosenberg was one of the original founding members of Young Survival Coalition (YSC) and its third board president. Her drive to enact change fueled her talented way of engaging the busiest people on the planet to get involved in solving the problem of early onset breast cancer.

Randi Rosenberg (1965-2010)

Randi Rosenberg (1965-2010)

Randi was incredibly smart, funny, inspiring and inquisitive. Although petite, her larger-than-life contagious, collaborative energy filled up a room and motivated others to accomplish common goals. She was a woman who could change the world … and she did.

It was Randi’s view that unlocking the answer to early onset breast cancer was the key to curing most women of breast cancer and that in order to force a national agenda, young survivors of all cancers needed to band together. Her work with the Steering Committee of LIVESTRONG’s Young Adult Alliance (now Critical Mass) in 2006 resulted in Closing The Gap: A Strategic Plan, one of the strongest and most powerful agendas in history to address young adult oncology issues.

She believed that the support young women received at YSC would sustain them in good times and bad.

Randi was diagnosed with bone metastasis in 2006. She died of her disease on February 15, 2010. She leaves behind her partner, Matt Purdue, their beautiful daughter, Alexandra Marais, brothers Lee and Scott, and her mother, Roberta (Bobbi) Rosenberg.

We will be forever grateful for the passion, dedication and joie de vivre that Randi gave to YSC. She taught us that significant change can happen when a few people unite to make a difference.

And so it is that we held a Research Think Tank last week in Randi Rosenberg’s honor – just one week shy of the three-year anniversary of her passing, as happenstance would have it. We gathered researchers, clinicians and advocates who care about increasing the quality and quantity of life for young women affected by breast cancer together in one room so we could collaborate at a level that Randi would have applauded. She truly believed that if we could unlock the key to why young women got breast cancer then we could perhaps better understand it in all women. The think tank proved that Randi lives on in so many of our hearts as we work together to try to improve young women’s lives.

We will honor Randi’s legacy and carry her spirit with us as we continue to ask the key questions that drive forward advances in research pertaining to early onset breast cancer.


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Categories: Guest Bloggers

Channeling Kat at YSC’s Research Think Tank

YSC Research Think TankI was very excited when I got the email last July from Kat Werner inviting me to be part of a YSC project called the Research Think Tank.  The email explained that in 2001 YSC had convened a “Medical Research Symposium on Young Women and Breast Cancer,” which resulted in a white paper that set an agenda for the future direction of research in young women.  Now YSC was re-evaluating the state of the research, in order to identify what “holes” still existed in breast cancer research pertaining to young women.  Kat invited me to be a part of the Think Tank, and I jumped at the chance.

You see, despite my degree in English and my almost total avoidance of science courses in college, I have become a medical science geek. I visit websites that report new medical developments.  I have attended the San Antonio Breast Cancer Symposium for the past two years, and I have reviewed grant proposals for the Department of Defense Breast Cancer Research Program.  So this self-described science geek was thrilled to be invited to be a part of the Research Think Tank that would be a collaboration between advocates and researchers to set a revised agenda for young women with breast cancer.

In preparation for the conference itself, Think Tank advocates were divided into work groups, and each work group was assigned a broad area on which to focus.  I was assigned to the Treatment work group.  This group focused its efforts on analyzing research concerning surgery, chemotherapy, radiation, and endocrine therapy specifically in young women and then identifying important issues which had not yet been studied.  What struck my group most as we were exploring the existing research is the total lack of a uniform definition of what constitutes a “young woman with breast cancer.”  Many studies appear to use menopausal status as a surrogate for age, often with no indication that anyone has confirmed the patient’s actual menopausal status.  More significantly, of the studies that have classified women by age, there are studies defining “young women” as those under age 35, those under age 40, those under age 45, and—somewhat astoundingly—those under age 65.  Without a common definition of who is a “young woman with breast cancer,” how will researchers ever be able to reach meaningful conclusions on the appropriate treatment for these women?

Which leads me back to why the upcoming YSC Research Think Tank is so important.  A study presented at last year’s San Antonio Breast Cancer Symposium appeared to show that breast cancer in women diagnosed at age 40 or younger responds differently to chemotherapy—almost as if it is a different disease.  Yet this disease is not being systematically studied in this group of women. This is a perfect example as to why we need to focus researchers to help make a measurable impact in the lives of young women affected by breast cancer.

While I have been looking forward to the Think Tank meeting since last July, my excitement has been somewhat dampened by the tears I’ve shed since Kat’s sudden death last September.  Kat had a remarkable talent for cutting through the scientific doublespeak and getting to the heart of the issue or the hole in the science.  She respected the researchers, but she also commanded their respect due to her depth of scientific knowledge and her ability to clearly articulate the survivors’ perspective.  She was never intimidated by the researchers she met because she believed we could only truly find a cure if advocates and scientists worked together.  While I know that others had a part in initiating this Think Tank, it truly reflects Kat’s heart and soul.  It hurts to know she won’t be physically present at the conference she planned to lead, but I hope that I, along with all the advocates and scientists, can channel her spirit as we work to outline the necessary research strategy it will take to improve the lives of young women affected by breast cancer.

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Categories: Guest Bloggers