Getting Your Groove Back: Inviting Intimacy and Sex Back into Your Life

Jean presents her “Getting Your Groove Back: Re-Establishing Intimacy after Cancer©” poster at the May 2012 AOSW conference.

Returning to a “normal” sex life following treatment for breast cancer is a topic that isn’t often addressed in conversation between health care providers and young survivors of breast cancer. One common side effect of treatment is that a pre-menopausal woman’s cycle stops. Not only are many survivors experiencing menopause 15 to 20 years earlier in life, their libido is practically non-existent. While individuals are told that they will be put into menopause, many survivors report that no one explains what that means. Menopause brings hot flashes, vaginal dryness and sexual spontaneity goes missing in action. Feelings of bewilderment and frustration are quietly tolerated and unquestioned because the cancer is being treated. Managing those side effects with compassion and love is a priority in keeping intimacy alive, even if it is a different kind of intimacy.

As an oncology-certified social worker and licensed clinical social worker, I have had multiple conversations with young women surviving breast cancer on the topics of intimacy, sex and body image. Questions like, “When do I tell someone about cancer?” often arise. The answer is simple: when you’re ready. I am not suggesting this is a simple conversation and you have no obligation to tell potential partners about your cancer journey until and unless you’re ready. Now, young survivors giggle when they hear me add this caveat: If your clothes are coming off, you might want to stop and have that conversation.

YSC conducted a recent survey of young breast cancer survivors. 51% of respondents stated they wanted information regarding sexuality and intimacy while 37% of respondents desired more support in managing personal relationships.

While I was working as an oncology social worker at Emory University Hospital, the topics of intimacy, sex, body image and the like led to my establishing a six-week workshop in 2010 called, “Getting Your Groove Back: Re-Establishing Intimacy after Cancer©”. After joining YSC’s staff in April 2011, we launched a pilot group. A second group met this spring and another is scheduled to begin later in the summer. I would have to say that one of the biggest successes of the workshop so far has been watching a shift of thinking from “I have a broken vagina,” to “I have a different vagina.”

The workshop goals include returning to the dating world, establishing intimate relationships or reclaiming yourself after a breast cancer diagnosis. Getting Your Groove Back (GYGB) uses journaling techniques to cultivate an action plan for self-care. This program invites healing and creating new paths for re-establishing intimacy after cancer. Group activities include writing exercises pertaining to attitudes and belief systems around body image, intimacy, hopes and desires; establishing short and long-term goals in order to increase overall life satisfaction; and engaging in group discussion. Writing exercises include: listing thoughts on love, sex and intimacy; date-night-for-one ideas; and a one-to-one dialogue with your body.

I had the privilege of presenting a poster about the workshop at the May 2012 Association of Oncology Social Workers (AOSW) national conference, which resulted in confirmation that these themes are universal and come up often. Every oncology social worker who dropped by the poster commented that they listen to survivors all around the country express concerns about the lack of this kind of information and the desire for the opportunity to obtain it and discuss their feelings.

If you are a young women surviving breast cancer, ask questions. If your oncology team is not the “go-to” resource for the answers, advocate for yourself! Ask to speak to a social worker if one is available. Seek help from certified sex therapists. Ask your OB/GYN or PCP. Or … email me.

In the meantime, play around with one of these journal techniques and see what surfaces:

How Do I Love Me?  Let Me Count the Ways…Make a list of 10 things you love about yourself and then give yourself a little feedback after the list is complete. Notice how you feel. Did anything surprise you?

One Fun Thing I Want to Do This Summer is____________. Fill in that blank, write about it for 5 minutes. Read over what you wrote. Is there a chance you can do it? What is one step toward that One Fun Thing?

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Categories: Guest Bloggers

The 4th Annual Congressional Women’s Softball Game

The 4th Annual Congressional Women’s Softball Teams

I was overwhelmed with pride last Wednesday as I watched women from Congress and the Washington Press Corps face off to raise funds and awareness for young women affected by breast cancer in the fourth annual Congressional Women’s Softball Game in Washington, D.C.

The Congressional Women’s Softball Game was founded in 2009 by Rep. Jo Ann Emerson (R-MO), Sen. Kirsten Gillibrand (D-NY) and Rep. Debbie Wasserman Schultz (D-FL), a young breast cancer survivor herself. Now in its fourth year, the game continues to emphasize the player’s bi-partisan commitment to women’s health and fighting breast cancer.

In a time when many of us around the country are having a hard time understanding what is going on in Congress, I felt proud to see female elected leaders from both sides of the aisle come together to play side-by-side to generate public awareness that young women can and do get breast cancer, as well as critical funds to help YSC address the unique needs facing young women diagnosed with this disease.

Brianna Keilar (CNN) and I talked at the after party about how there is no other event like this in our entire country where Democrats and Republicans truly unite for a cause. House Speaker John Boehner and House Democratic Leader Nancy Pelosi were in attendance, along with other notables such as Labor Secretary Hilda Solis, Senator Lindsey Graham, House Majority Leader Eric Cantor, House Minority Whip Steny Hoyer, and Representative Dennis Kucinich, who was also there to support his daughter, Jackie Kucinich, a reporter at USA Today and member of the Press Corps team. Everywhere you looked you spotted familiar faces that you are used to seeing on TV while you make dinner.

I was also in awe of the press “Bad News Babes” team. These are women we see covering the nation’s news day after day. It was invigorating to hang out with them and hear that they are interested in helping to spread the word that young women can and do get breast cancer. Having NBC’s Andrea Mitchell MC the game after her own battle with breast cancer last year made her presence even more powerful this year as she delivered the play-by-play calls throughout the evening.

The Capitol Police, snipers, bomb-sniffing dogs, and large black SUV’s created a certain buzz in the air, but seeing Debbie Wasserman Schultz hanging out with her beautiful daughter in the dugout cheering on her Republican teammates moments later reminded me that she’s also a wife, mother … and a woman whose life has also been affected by breast cancer.

Days like last Wednesday make me feel proud to be an American and a part of YSC.

Huge thanks to McDonald’s for serving as Lead Sponsor of the game!

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No Way Am I Wearing Those!

Terry Black Flare Skort Padded

Riding a bike from Philadelphia to Washington, D.C., or from Thousand Oaks to Foothill Ranch in Southern California? How hard can it be?

I registered for both YSC Tour de Pink three-day East and West Coast rides without owning a bike or any of the bike gear that cyclists so proudly wear, such as those funny, clicky shoes or those ridiculous helmets. The first piece of cycling gear I purchased was …. (drum roll, please) … riding shorts.

As a grown woman flirting with a new sport, I think you have the opportunity to pick and choose what you like about the fashion that sport has to offer … and I don’t like bike shorts. Plain and simple.

After I hit the 10-mile mark on the stationary bike at the gym, I understood the reason for the padded seat … but why do women have to wear such unflattering shorts?
I asked other women what they wear and was directed to a bunch of fun websites that understand my frustration with the sport’s fashion. I was thrilled when I found “skort” bike shorts. The huge bike pad is in the shorts, but the shorts are covered with an a-line skirt. How cool is that?

I’m high maintenance, I admit it … but at least I’ll feel less self-conscious than I would wearing traditional bike shorts!

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Categories: Taking my Body Back

An Advocate’s Testimony

YSC Co-founder Joy Simha testifies before the Senate Appropriations Subcommittee on Defense in support of funding for the FY 2013 DOD BCRP on June 6, 2012.

In 1994, I was a happy-go-lucky, single, 26-year-old focused on my career and family. Breast cancer and advocacy weren’t anywhere on my radar. All that changed when I found a lump under my right nipple and was subsequently diagnosed with breast cancer. Suddenly, I was focused on medical treatments and finding my new normal as a very young cancer survivor.

Discouraged by the lack of resources available and concerned about the underrepresentation of young women in breast cancer research, I came together with two other young breast cancer survivors in 1998 and co-founded Young Survival Coalition (YSC). YSC was the first nonprofit organization to focus exclusively on the unique needs of young women diagnosed with breast cancer, and it began as a grassroots advocacy movement to increase the quality and quantity of life for young women diagnosed with breast cancer.

YSC realized that if we were really going to accomplish our mission, we needed to partner with other organizations. We have been working with the National Breast Cancer Coalition (NBCC) since our inception. NBCC’s mission is to end breast cancer by January 1, 2020, through education, advocacy and action. YSC is a board member organization of NBCC.

On June 6 18 years after being diagnosed and almost 15 years after co-founding YSC, I testified before the Senate Appropriations Defense Subcommittee in Washington, D.C. It was not my first time. But, someone asked me about the experience and how I felt. It got me thinking. The first time I testified, I was overwhelmed with the idea of asking members of the U.S. Senate to make breast cancer research funding a priority. Then I stopped to think about all the amazing young women and men that we lose to this awful disease, including a very long list of friends: Randi Rosenberg (diagnosed at 32) who passed away at the age of 44 in 2010, Lisa Muccilo (diagnosed at 27) lost her battle at the age of 33 in 2003, and Mary Knipp (diagnosed at 35) who died at 43 in 2006.

All of these ladies lived past their five-year survival marks, and they enriched and inspired my life. They all lobbied for the Department of Defense (DOD) Breast Cancer Research Program (BCRP), so I felt like it was a gift to testify for the program. I also thought of all the knowledgeable advocates who do this very difficult work because we need to better understand how to end breast cancer. Knowing that I am standing before senators representing all of them and so many families affected by this disease, I feel inspired and driven to bring the group’s perspective to this influential subcommittee. This is not my story alone.

So, how does one make a case for a line item in the appropriations budget to help fund high-impact, innovative, collaborative and high-risk research? The proof is in the pudding. The DOD BCRP has worked since 1992. Targeted therapies, like Herceptin, have been developed as a direct result of this program. Biomedical research is being transformed. Innovation and dedication can be seen in the applications and at the decision-making table. To end this disease, we need to continue investing in this effort.

At the DOD BCRP, informed advocates of all levels sit at the table. As one of those advocates, I can tell you we ask for the money and ensure the program only funds critical research that will impact our lives. For eight years, I’ve watched how well that decision process works. It’s easy to speak up for something that you know produces results. Since I am a NBCC Project LEAD® graduate and attend the yearly Advocate Summit, those who run the program know I am educated and qualified to serve effectively.

So, when asked whether I’m nervous about testifying in front of the Senate, the simple answer is no. I don’t have the time nor the luxury to be nervous. This year nearly 290,000 women and men will be diagnosed with breast cancer, and we continue to lose about 40,000 annually to this disease. They, along with our future generations, need the DOD’s peer-reviewed BCRP.

The women who were in surgery, chemotherapy or undergoing other treatments when I testified on June 6 had a much tougher task that day than I did. The families who were helping their loved ones in a hospice know what a difficult task is. I just needed to stand before the committee to represent all of them and emphasize the need to continue the innovative, high-risk, high-reward, collaborative work done by the BCRP in its mission to eradicate breast cancer.

I feel honored to have had the opportunity to represent all of the individuals whose lives are affected by this disease.

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Categories: Guest Bloggers

T-DM1: What We Know

The American Society of Clinical Oncology (ASCO) ASCO Logomeeting is always an interesting and informative event. Researchers travel from around the globe to hear and share research results in all areas of oncology. Every year the media reports “breaking news,” which can make it sound as though a cure for cancer is near or a new drug will be in your clinic tomorrow. Careful review, however, is needed to determine whether the media reports are accurate.  This year’s breast cancer “breaking news” was in regard to trastuzumab emtansine (T-DM1), a Phase III trial called EMILIA, in people with HER2-positive metastatic breast cancer (mBC) — specifically those who had previously received treatment with Herceptin® and a taxane chemotherapy. This study was sponsored by Genentech, the developer of T-DM1.

At ASCO, the EMILIA data presented showed an additional 3.2 months of progression-free survival (PFS) and a potentially encouraging trend towards overall survival (OS) when compared with the control arm. Toxicities were also fewer in the group who received T-DM1. This data was interim (not final), as the EMILIA study is still ongoing. The interim analysis shows some promising data, but the study still needs to be completed and all data finalized and analyzed fully. T-DM1 will also need to go through the drug approval process before it can be offered in clinical practice outside of clinical trials.  The abstract of this presentation is available for you to read, and you may also want to read the following blog written by Laura Nikolaides of the National Breast Cancer Coaliton (NBCC) which dives into the science and presents the T-DM1 information in an easy-to-understand way.

So what does this all mean to our population? It means ask questions, seek information and understanding, and use your resources! We encourage you to learn more! Two of YSC’s partner organizations will be hosting teleconferences, Living Beyond Breast Cancer and CancerCare. Listen-in,  ask questions and never be afraid to read the actual research. If you would like to learn more about the science of breast cancer and how to decode research results and media reports, NBCC, offers a science training course called Project LEAD.

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What Is ASCO?

There are only a couple cities in the United States that have a building large enough to hold 34,000 people. Chicago is one of them. The American Society of Clinical Oncology, which everyone in the cancer community calls “ASCO,” holds its annual conference, one of the largest cancer meetings in the world, every June in Chicago … and YSC attends every year.

Last year, a month after I was hired as YSC’s CEO, I came to ASCO and Chicago for the first time. The mesmerizing architecture of the city was a bit distracting, but once I made my way to the convention center, I realized how big the world of cancer really is.

Imagine a college lecture hall, the biggest one you have ever seen in real life or on television – and then multiply that size by 10,000 – that’s how big the “talks” at ASCO are. While the size of this conference is noteworthy, it also illustrates the enormity of this gathering’s topic: cancer.

For those of you not intimately acquainted with cancer – and that’s a good thing – there are two primary cancer doctors: surgeons, the ones who surgically remove tumors from your body, and oncologists, the ones that treat your entire body with the hope that the cancer won’t spread. Of course this is a huge generalization and oversimplification of a complex industry and professionals, but I think it’s a good starting point for those just learning the language of cancer.

All of these doctors live and work in their own countries and cities. In some cases, they might work in small, local hospitals and not have anyone with whom they can discuss new science or complex cases. Others are busy treating their patients, which makes it hard to carve out time to read up on new discoveries and research. So, once a year, healthcare professionals from around the world meet in Chicago to learn and discuss new discoveries, cases and the latest research findings. I think this is cool.

Two other groups comprise this 34,000 person get-together: pharmaceutical companies and nonprofits.

The pharmaceutical companies use this gathering as an opportunity to tell doctors about their new drugs and what they are working on. Imagine where doctors can walk up and down aisles until they find something that relates to them, learn more about it, and incorporate it in their work, if appropriate. That is what ASCO is like.

When you first arrive in the exhibition hall, which is around the size of five football fields, your attention is directed to a very prominently positioned group of booths … this is where nonprofits live during this five-day gathering.

You might wonder why nonprofits like YSC feel it’s important to attend a meeting for doctors. It all comes back to the best possible care for those diagnosed with cancer. As doctors browse the aisles looking for possible treatment options for their patients, they’re also looking for new ways to help their patients navigate the journey we call cancer – that’s where we come in. Nonprofits serve a critical role in ensuring that doctors are also educated about ways they can help support the emotional part of the human being they are trying to save.

I wouldn’t want to attend a meeting with 34,000 people every weekend, but once a year it’s nice to witness the world’s cancer doctors getting together to try to rid the planet of cancer.

Look forward to seeing you in 2013, ASCO!

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Sometimes You Just Have To Meet F2F

Houston F2F

Houston F2F

When a young woman is diagnosed with breast cancer, she may feel completely alone and as though she’s the only woman under 40 to ever receive such terrible news. The unfortunate reality is there are more than a quarter of a million young women living in the U.S. today who were diagnosed with breast cancer before their 41st birthday. And, YSC is here for all of them. It is our intention to make sure that no young woman feels alone as she navigates the various phases of her survivorship.

Because YSC is a national organization that has staff, volunteers, donors, and partners all over the country, my job as CEO entails a great deal of travel. I cannot effectively lead YSC from behind my desk. So, I take advantage of every opportunity to get to know people in person.

I truly value the feedback I receive from the young women we exist to serve. This year, my priority is to meet as many members of the “YSC family” as humanly possible. Some of the things I’d like to know are: Who they are (personalities)? What do they need? What they’re going through (as individuals)?

Therefore, starting in March, every time I travel to a different city I will host a face to face meeting with YSC survivors in the area whenever possible, creating what I now refer to as my “CEO F2Fs” of 2012.

Thus far, I’ve met with the spectacular women of Seattle, where I enjoyed an entertaining evening listening to their individual stories, experiences supporting one another and efforts to connect with other young survivors new to the area. Next, I had a small gathering with amazing volunteers in Houston who help to raise funds for YSC through their dedication to our mission. After that was a wonderful conversation with our outstanding ladies in Phoenix, where we brainstormed fun and creative activities young women affected by breast cancer can do together, as well as new ways to support one other. Most recently, I was in Chicago, where I appreciated meeting that affiliate’s magnificent volunteer leaders and survivors new to YSC living in the Chicago area.

There is no agenda for these get-togethers. Their sole purpose is for me to get to know the women we serve, hear their stories and obtain their feedback on how YSC can better support our existing constituents, as well as expand our reach so more young survivors know YSC is here to help them with comprehensive resources, support and educational materials. I also hope that, after speaking with me, the women in YSC’s family across the country will feel confident that I’m dedicated to fulfilling YSC mission and raising awareness that young women can and do get breast cancer.

Anyone can read on YSC’s web site that I am a young woman diagnosed with breast cancer, actively in treatment, that I feel like YSC saved me when I was diagnosed less than two years ago, or that I’m still actively involved in my YSC community in NYC. But, I know reading about someone isn’t enough … you need to meet face to face (or F2F) to truly get to know another person.

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Categories: YSC SYNC - Survivors

A Long Time Ago in a Trailer Far, Far Away

2004 YSC Tour de Pink

Tour de Pink’s Inaugural Riders. From left to right, Peter Finder, Matt Purdue, Noel Knecht, Matthew Rivera and Josh Jacobstein.

Most YSC stories don’t begin with four grown men sleeping together in a cramped trailer parked on a gravel driveway. But this one does. As the story goes, this bizarre episode is one of the legends of the first-ever Tour de Pink ride.

In 2004, long-time YSC supporter Lisa J. Frank and I hatched the crazy idea of a long-distance bike ride to raise awareness and funds for YSC. That first ride started at the Wellness Community near Boston and finished at the NYU Cancer Institute in New York, covering 220 miles in four days. To keep expenses to an absolute minimum and ensure that YSC received almost every penny we raised, we vowed to cut corners whenever possible.

Only five riders took part: me, Peter Finder, Josh Jacobstein, Matthew Rivera and Noel Knecht, a young breast cancer survivor diagnosed at age 32. Lisa trained her butt off and raised a ton of money, but, sadly, couldn’t ride because she was diagnosed with a recurrence of breast cancer less than two months before our ride.

Along the way, we suffered rain, cold, headwinds and … how shall I say this? … less-than-ideal accommodations. One night we stayed at a family’s small rural home in southern Massachusetts. Noel was given the guest bedroom, while we four guys stuffed ourselves into sleeping bags and crammed into a pop-up trailer in the driveway. Needless to say, none of us felt like Sleeping Beauty the next morning.

The next night, we stayed at a larger house in central Connecticut — but one not quite large enough. We slept on mattresses on the floor, sharing the living room with each other and the family’s big dog. Our rest stops were whatever convenience stores we could find. Our SAG fleet was one rented SUV, driven from town to town by a network of volunteers. But somehow, someway, we all finished the ride in one piece. We only lost Noel once, and that was just for a few minutes. And we even raised more than $26,000 for YSC!

Eight years later, our Tour de Pink events are professionally managed, and multi-day riders get to stay in comfy hotels and eat catered food … a far cry from our first ride! In 2012, YSC will host four outdoor rides (East Coast, West Coast, Atlanta and Northern Minnesota) and two indoor spinning events.  Tour de Pink will welcome more than 1,400 riders and volunteers from all over the country. More important, the concept that raised $26,000 that first year now generates more than $1 million for YSC annually. The vast majority of that money goes toward providing free programs, resources and educational materials that help ensure no young woman ever has to face breast cancer alone.

Thanks to the hard-working YSC and G4 Events staff members, courageous riders, selfless volunteers and thousands of individual and corporate donors, who have taken Lisa’s and my idea and run … well, ridden … with it!

Today, Lisa is the President of YSC’s Board of Directors and Co-Chair of Tour de Pink. I remain a volunteer Co-Chair of the events.

This October, YSC CEO Jennifer Merschdorf, who was kind enough to let me hijack her blog for a day, will join us for her first Tour de Pink ride. I’ve promised her she won’t have to sleep in a trailer.

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Categories: Guest Bloggers

What You See Is What You Get

Problems and Solutions Street SignThis spring I met with Cortés Saunders-Storno, Director of Alumni Relations at the University of San Francisco, where I earned my MBA in 2004. I hadn’t been on the campus of Lone Mountain since I graduated. It was a blast backward in time!

My experience in USF’s executive MBA program changed my life. While that sounds dramatic, it isn’t meant to be. I was a different person at the end of the program — and I could never go back.

People probably feel that way at any school they attend. I’m not claiming USF is that different from other schools and we know that timing is everything, but for me in my life at that moment — it was exactly what I needed.

When I walked through those doors again, I was consumed with memories I had forgotten … memories of working full-time and going to school full-time at night and on the weekends — and the feeling that I would never come up above water.

Cortés was wonderful and we clicked instantly. One thing she said stuck with me — she expressed that what she liked most about meeting me and hearing my story is how real it felt. That not everyone goes along a path that is perfect — sometimes you have to fall to your knees and beg life to stop throwing bad things at you — and then have the strength and determination to rise to the next level.

I guess that’s kinda my thing. I am a normal person. I have educated myself and paid my dues in the business world. I was diagnosed with breast cancer at 36. And now, I write this blog in an effort to be transparent to our community.

There are no smoke and mirrors with me. What you see is what you get. I’m not perfect and I make mistakes, but I promise to always learn from them and be the best person I am capable of being each and every day.

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Words of Wisdom

2012 C4YW Group PhotoMy first week as CEO of YSC, I received an email that I will never forget. It was from one of the co-founders of the organization, Joy Simha. I was only eight months out from diagnosis when I was appointed CEO of YSC and still actively in treatment.

Joy had already spent a great deal of time that week educating me on the history of the organization, but the words in her email had a message to convey that was far more significant to me.

I printed out that email, and, to this day, it hangs above my desk so all the staff of YSC can read it.

“When we are diagnosed with breast cancer, we learn about how to help ourselves. After we go through treatment, we are done helping ourselves. When we learn about the science of breast cancer, we learn how to help all women. We can’t sacrifice one for another or cure only ourselves. Now we start working for the community. It is not about my cancer or her cancer or my disease or her disease. It is about doing what is right for the majority of those living with and dying from the disease. We sit around a table and share our personal stories when they are relevant to illustrate a point or highlight some data we are discussing. We do not answer a scientific question with anecdotal evidence. We are part of a community, and we do whatever is necessary to benefit that entire community.”

– Joy Simha
YSC Board Member and Co-Founder

Thank you Joy, your guidance and friendship mean the world to me.

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