YSC Attends BCY1 Breast Cancer in Young Women Conference

Stacy Lewis, Anna Cluxton and me at the BCY1 Conference in Dublin.

Along with Chief Program Officer and Deputy Chief Executive Stacy Lewis, Ex Officio Board President Anna Cluxton, Medical Advisory Board members Dr. Ann Partridge and Dr. Judy Garber, I attended the BCY1 Breast Cancer in Young Women Conference November 8-10, 2012 in Dublin, Ireland. This three-day conference directed to medical practitioners and researchers focused solely on issues pertinent to young women (40 and under) diagnosed with breast cancer. Organized by the European School of Oncology (ESO), approximately 300 medical professionals and patient advocates from over 47 countries attended. YSC also presented four posters at this event which summarized our survey results and work on the Long-Term Survivor Guide, Post-Treatment Navigator, Metastatic Resource Kit, and Healthcare Provider Educational Program. One of our submissions, titled “Young and Metastatic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally to the entire conference by Stacy Lewis.

 The conference debated whether the biology of breast cancer in young women is unique and whether more aggressive treatments should be ordered solely because a woman is “young.” While all speakers acknowledged that young women are more likely to be diagnosed with aggressive forms of breast cancer and have a worse prognosis than their older counterparts, it is not clear why this is occurring. Some speakers believed that the tumor itself is different in younger women, while others believe that the tumors are the same, but it is the surrounding microenvironment of the young woman which is different:  a “seed” vs. “soil” dispute. We heard presentations and updates on hereditary breast cancer, emerging technologies, surgery/radiotherapy/chemotherapy, use of bisphosphonates in the adjuvant setting, and metastatic disease. Quality of life issues including fertility, early menopause symptoms, relationship issues and pregnancy were also examined.

 A common theme that surfaced repeatedly during this conference: we just don’t know enough about this population of young patients and the best ways to treat them. In the young metastatic population in particular, the scarcity of data and the reluctance of trial sponsors to include younger women in their studies was noted.

 While many examples of research needed in this population were shared throughout the conference, one quandary in particular caught my attention because it is a decision that almost all young women diagnosed with breast cancer must confront: lumpectomy + radiation vs. mastectomy. Research shared at BCY1 said that with lumpectomy and radiation, younger women have local recurrence rates 9.2% higher than older women. Based on this research, mastectomy is commonly recommended for younger patients. However, the speaker was not aware of any research that looked at the recurrence rate with mastectomy in younger vs. older women and compared that recurrence rate to lumpectomy and radiation. It may be that local recurrence rates are higher in young women, no matter which surgery is chosen. It is simply not clear. In addition, although new radiation technologies should be safer, it will take time to determine whether this is true, especially for young women who will have a longer lifespan during which long-term side effects may arise.

Two aspects of this conference reassured me. First, it was encouraging to attend a high-level scientific conference where the focus was solely on young women and where quality of life issues were deemed worthy of scientific discussion. Second, it was wonderful to hear the praise from advocates and the medical community about the value of YSC and the good work we do.

BCY1 also reaffirmed for me the value and need for our upcoming YSC Research Think Tank. In 2001, YSC organized the first medical research symposium focused on young women and breast cancer.  The resulting white paper showed where gaps in knowledge existed.  But, these gaps persist today. A large amount of research is still desperately needed in our population of young women diagnosed with breast cancer. We simply must learn more so that our constituents have the information they need to make their best, informed choices. For our Think Tank, we have assembled teams of medical professionals and skilled advocates to focus on six core issues pertinent to our population:  risk factors unique to young women; pregnancy-associated breast cancer; treatment; metastases; fertility; and quality of life/survivorship. These workgroups are currently assessing what we do and do not know in these six target areas. At our in-person Think Tank meeting in February 2013, these workgroups will meet in person to debate and strategize. The outcome of this meeting will be a list of high priority research questions that will be published and presented to the research community, with the goal of improving the quality and quantity of life for young women diagnosed with breast cancer.

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Categories: Guest Bloggers

Screening Mammography in the News Again – Understanding the Research

Screening Mammography is in the News Again!  Published in the New England Journal of Medicine, “Effect of Three Decades of Screening Mammography on Breast Cancer Incidence,” by H. Gilbert Welch, Ph.D, and Archie Bleyer, Ph.D, this new research review shows that screening mammography only increases the amount of early-stage cancers detected and has not decreased the number of late-stage cancers found, as one would hope.  Instead of saving lives, it causes more than one million women to be treated for a disease that they never would have died from.

As an 18-year veteran of breast cancer survivorship, I resolved long ago that I can be a part of the solution or a part of continuing the problem.  There are so many people out there who are promoting myths.  In my own personal breast cancer advocacy work, I knew that before I sent a message, I wanted to make sure what I said was factually correct.  When I was first diagnosed with breast cancer I was told: “Early Detection Saves Lives.”  I believed it at first, until some of my friends started to die of the disease and I noticed some of them were diagnosed with smaller tumors and had a better prognosis than my own.  I began to better educate myself about what that statement about early detection meant and realized in our zest to say something empowering and helpful, we have perpetuated a myth.

This new research by Welch and Bleyer raises serious concerns about the value of screening mammography and clarifies that the effect on mortality rate is likely smaller, with the harm of overdiagnosis likely larger, than previously recognized.  This study is only related to screening and not diagnostic mammograms, where a woman (or man) has a mammogram to investigate whether an existing lump is cause for concern.  There is no debate about the usefulness of diagnostic mammograms.

Welch, from Dartmouth University, has explained his research findings in an easy-to-understand video. Please watch it!

One must consider the fact that there is an extraordinary cost to treating more than a million women for breast cancer.  Surgery, chemotherapy and radiation all cost a woman very much in her life.  They lose body parts, they are exposed to toxic chemicals and treatments, and they lose time with their family, from their job and doing all of the things they love best, while undergoing treatment.  They are put at risk for other diseases, as Robin Roberts was when she contracted myelodysplastic syndrome (MDS) after breast cancer treatment.  Some lose their jobs as a result of debilitating treatments.  Chemotherapy robs others of their fertility or sexual function.  Some women die from side effects of their treatment.  There is a cost to the treatment for breast cancer.

This research reinforces how important it is that we be a part of the solution and that solution involves moving beyond the search for early detection and moving into the cure for breast cancer.  Sign the petition to show that you believe we need to solve the real problem of breast cancer and that you would like the President of the United States to take a leadership position in helping us to end breast cancer.

In November of 2009, YSC responded to the U.S. Preventive Services Task Force’s then newly released recommendations on screening mammography. To learn more, read YSC’s statement.

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Categories: Guest Bloggers

Breaking News from San Antonio: Tamoxifen for 10 Years?

I’m at the San Antonio Breast Cancer Symposium and as you may have seen on Facebook, Twitter, and the news, study results from the ATLAS trial were released here yesterday.  The study suggested that taking Tamoxifen for 10 years, instead of stopping after five years, may be beneficial for estrogen-receptor positive women diagnosed with breast cancer.  But what do these study results really mean and how will they impact young women?

Currently, premenopausal breast cancer patients who are estrogen-receptor positive (their cancer grows in the presence of estrogen) are prescribed Tamoxifen for a course of five years.  The Adjuvant Tamoxifen:  Longer Against Shorter (ATLAS) trial, examined whether there was benefit in continuing Tamoxifen for five more years, for a total of ten.  Study results were reported at the San Antonio Breast Cancer Symposium yesterday and released the same day online in The Lancet.

In the ATLAS study, 6,846 estrogen-receptor positive women around the world were randomly allocated to two groups.  The five-year group stopped taking Tamoxifen at the five-year mark.  The 10-year group continued taking Tamoxifen for another five years.  After 7.6 years of follow-up, study results show a reduced risk of recurrence, reduced breast cancer mortality, and reduced overall mortality, in those women who stayed on Tamoxifen for 10 years.  Patients in the study were 80% compliant with taking their medication.

While a benefit was seen in this study to continuing Tamoxifen for five additional years, these benefits were modest.  Between years 5 to 14 after initial diagnosis, breast cancer mortality was 15% for those women who stopped Tamoxifen at 5 years and 12.2% for women who continued for 10 years.  The cumulative risk of recurrence during years 5 to 14 was 21.4% for women who took Tamoxifen for 10 years, compared to 25.1% in the group who stopped at five years.

Overall, the patient population in this study tended to have low nodal involvement and most participants were over the age of 45 at time of initial diagnosis.  53% of the 10-year group were node negative and 54% of the five-year group were node negative.  Only 16% of both groups had four or more nodes involved.  Also, only 19% of the 10-year group and 18% of the five-year group were under age 45 at time of diagnosis.  In both the five and 10-year group, 89% of study participants were postmenopausal at time of their entry into the ATLAS trial.  In the five-year and 10-year groups , 47% and 48% of patients respectively had tumor sizes ranging from 1 to 20 mm (equivalent to 2 cm or under), while 39% and 38% respectively had tumor sizes between 21-50 mm (2 to 5 cm).

Tamoxifen also has its risks and side effects and the longer treatment did increase side-effects.  In particular, the women who continued on Tamoxifen for 10 years had a higher rate of endometrial cancer (3.1%; 116 occurrences) than those who stopped at year five (1.6%; 63 occurrences), between years five to 14.  The authors stated that this risk is more pronounced in postmenopausal women and that there would be “little risk” to premenopausal women of endometrial cancer.  While death from stroke or pulmonary embolism were comparable between the five-year and 10-year groups, a table showing “Non-neoplastic disease; ever hospitalized or death” shows a higher number of strokes (130 to 119), pulmonary embolus (41 to 21) and Ischemic heart disease (127 to 63) in the 10-year group compared to the five-year group.

Overall, more data is needed and ATLAS data will continue to be gathered and analyzed.  The study authors noted that trials comparing 10 years to five years will need to be followed up for at least 15 years from diagnosis, given the fact that the protective effects of Tamoxifen extend beyond the time that it is taken.  “Longer follow up of ATLAS (and a meta-analysis of all such trials) will be needed to assess the full benefits and hazards throughout the second decade.”  In addition, more data is needed on younger women.

So, what does this study mean for young women diagnosed with breast cancer?

First, if you are estrogen-receptor positive and have been prescribed Tamoxifen, this study supports the benefits of that medication.  Even if you take only five years of Tamoxifen, the benefit of that treatment continues throughout the first 15 years after diagnosis.  Second, if you are a longer-term patient, who is about to complete their five years of Tamoxifen or have completed your five years recently, you may want to speak with your physician about continuing the medication.  The results of this study support that decision, but as noted above, there are drawbacks as well and the benefits appear to be modest.   In addition, there are other side effects to Tamoxifen not examined in this study, including hot flashes and weight gain, which may impact your quality of life.  You will need to discuss your medical history with your oncologist to weigh the risks versus benefits of continuing on Tamoxifen.

Finally, a particular concern with this study is the impact that this study may have on young women’s family planning.  Many young women already wait until they have completed their five-year course of Tamoxifen before trying to start a family.  Will this study cause that delay to become 10 years?  And, are the modest benefits shown in this study worth that?  That is a very personal decision and again, we recommend speaking with your physician.

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Categories: Guest Bloggers

Imagine If

Some days the world of breast cancer that we live in seems larger than I can manage. I want to shake my fists when I hear about another diagnosis or scream out loud when we lose another young woman. Will it ever end?

I know there are many smart and determined people working around the clock to try to cure breast cancer … and I have 100% faith that they will do it, someday. But how long do we have to wait? Is there something we can do to end this once and for all?

The answer is yes.

YSC has joined forces with the National Breast Cancer Coalition (NBCC) to present President Obama with a challenge: The challenge is to make ending breast cancer one of his priorities during the next four years.

Imagine if that happened?

NBCC announced on Tuesday that former President Bill Clinton will serve as the Honorary Chair of Breast Cancer Deadline 2020, NBCC’s strategic plan of action to end breast cancer by January 1, 2020.

So, now we need to get President Obama on board. Imagine how much we could accomplish if the current President of the United States decided to do everything in his power to end this disease. Imagine how fast the right researchers would get funding. Imagine researchers sharing their findings to ensure the deadline was met. Imagine if the entire country unified to make this happen. Imagine that such a cure could lead in the fight against all cancers.

To ask the President to consider this extraordinary challenge, YSC and NBCC must show President Obama that the American people want this to happen. In order to do this, we need to collect enough signatures to show the President we are serious. And we only have two more weeks to do this.


Please sign this petition.
Please send an email with the petition URL (below) to everyone at your company .. asking them to sign.
Please send an email to all of your friends and family, asking them to sign the petition.


So many young women have faced chemo, radiation and surgeries with their heads held high. This is a moment to show every young women with breast cancer that WE ARE ALL FIGHTING WITH YOU … you are not alone!!!

Imagine if breast cancer no longer existed. That’s something worth fighting – and signing – for.

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November 12 Webinar: Healthcare Reform and What the Affordable Care Act Means for You


Click to enlarge.

Please join me for my November 12 webinar on healthcare reform, the 2012 Presidential election and what it means for young women affected by breast cancer.

What does the Affordable Care Act mean to you? I think this is a question that we ask ourselves as the conversations continue in the political arena, as well as in our daily lives; whether you are a young woman with breast cancer, a long-term survivor, caregiver, health care advocate or simply interested in better understanding the U.S. system of health care coverage.

As a young survivor, I had a crash course on health care policy upon diagnosis. My professional and personal backgrounds collided that fateful April Fool’s Day in 2009. Upon learning of my diagnosis at age 30, and in the cross hairs of losing my health care coverage, I decided to take a slight change in my legislative policy focus and team up with a group of legislators from across the country to work on the crafting of the Affordable Care Act (ACA).

During this time, I learned that our health care system does not always provide the best options or quite possibly any option at all, when someone is diagnosed with a serious illness. Between me and the state legislators, who were mostly health committee chairs or staunch advocates for health care, we were able to look at the breakdown of the current system and provide valuable insight and input on the federal front to ensure that state implementation would be more seamless and viable.

With this experience, I have put together a webinar focused on information that is relevant to the young survivor community to date. Included in the webinar, participants will learn more about my story and how it intersects with the passage of the ACA; the timeline and main components of the law; highlights for those diagnosed with cancer; what the Supreme Court decision and the election mean for the law; and how to find additional resources to aid in future decision making.

Not only was this a way to take back my health and find all pathways to insurance coverage, but also it was a means to utilize my knowledge for crafting strong policy and negotiating for others. I’m presenting this webinar as a way to give back to the community and better help others as they go through their personal story with cancer and health care. I hope you’ll join me for this informative webinar!

Monday, November 12, 2012
7 p.m. EST/ 6 p.m. CST/ 4 p.m. PST

Reserve Your Seat Now!
or email info@youngsurvival.org

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Categories: Guest Bloggers

Navigating Breast Cancer and Employment


Common Concerns:

A breast cancer diagnosis can raise a multitude of questions and concerns – not just questions about treatment and healthcare – but also legal questions about employment, insurance and income.

•    What will happen with my job?
•    How do I ask for time off to see my doctor?
•    Can my employer fire me for missing too much work?
•    If I lose my job, what will happen to my insurance benefits?
•    How will I pay my bills?

In the Breast Cancer Legal Project at the Atlanta Legal Aid Society, Inc., we often hear questions just like these from our clients. I represent clients who are navigating healthcare access issues, applying for long-term or short-term disability benefits, requesting reasonable accommodations from their employers, appealing health insurance coverage denials, applying for Social Security disability benefits and facing disability discrimination. This article is intended to provide you with general information, not legal advice tailored to your unique situation. It is always best to consult with an attorney about your specific employment or insurance questions before taking any action, but finding an attorney to answer your questions when your income is limited is often a challenge. This article is intended to bring you some comfort in knowing that you are not alone in your concerns and that there are resources and organizations out there to help.

Can my employer fire me for missing too much work?

The Family Medical Leave Act (FMLA) is a federal law that can provide up to 12 work weeks of unpaid, job-protected leave in a 12-month period to eligible employees who need to take time off work due to a serious health condition or to care for an immediate family member with a serious health condition. The FMLA does not apply to all employers and employees. To find out whether the FMLA may apply to you or your employer, you can find some general information at these websites:

•    U.S. Department of Labor: http://www.dol.gov/whd/fmla/#.UHndCLQ1b8s
•    Workplace Fairness: www.workplacefairness.org
•    Cancer and Careers: www.cancerandcareers.org

If I lose my job, what will happen to my insurance benefits?

The Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that gives workers and their families who lose their health insurance benefits the right to choose to continue group health insurance benefits for a limited time under certain circumstances, such as job loss, reduction in hours worked, death, divorce and other life events. To find out more about COBRA, you can visit this website:

•    U.S. Department of Labor: http://www.dol.gov/dol/topic/health-plans/cobra.htm#doltopics

What will happen with my job, and how do I ask for time off to see my doctor?  

The Americans with Disabilities Act (ADA) is a federal law that protects “qualified individuals with disabilities” from employment discrimination by qualified employers. Under the ADA, an individual can request a “reasonable accommodation,” such as amodification or adjustment in job responsibilities, schedule or work environment, from a qualified employer.  You can find further information on how the ADA might protect someone with a cancer diagnosis at these websites:

•    U.S. Department of Justice: www.ada.gov
•    U.S. Equal Employment Opportunity Commission: http://www.eeoc.gov/facts/cancer.html
•    For information on requesting a “reasonable accommodation,” you can visit the Job Accommodation Network site at www.jan.wvu.edu.

The Breast Cancer Legal Project (BCLP) and other cancer legal services:

BCLP was created in 2005 to provide cancer-related legal services to low-income breast cancer patients, survivors, and caregivers in metro-Atlanta. We work closely with social workers, healthcare providers and advocates from other nonprofit organizations to identify and resolve the legal issues that negatively impact our clients’ quality of life and impede their ability to focus on survival, treatment and wellness.

Although we specifically serve low-income individuals in the metro-Atlanta area, there are resources available to provide support and guidance to people living with or surviving cancer across the country.

•    The National Cancer Legal Services Network (NCLSN) has a nationwide, online directory of cancer legal services programs. NCLSN “promotes the increased availability of free legal services programs so that people affected by cancer may focus on medical care and their quality of life.”  www.nclsn.org.

•    The Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles, “provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.”  www.cancerlegalresourcecenter.org. They also have state-specific information available online and a national, toll-free Telephone Assistance Line (866-THE-CLRC) that individuals can call.

It is both comforting and empowering to be armed with information about your rights. In the Breast Cancer Legal Project, we know that helping our clients navigate the legal challenges that a cancer diagnosis can bring is essential to encouraging peace of mind and maintaining quality of life.

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Categories: Guest Bloggers

Hurricane Sandy Update – November 5, 2012


Dear YSC Constituents, Friends, and Partners –

The building in which YSC’s headquarters is located, at 61 Broadway in downtown Manhattan, re-opened briefly on Monday, November 5, but without heat or phone service. And, we’ve just learned from the building’s management that there will be no heat in the building for the remainder of the week.

Therefore, YSC’s New York office will be closed this week (Nov 5-9th) and, unless the conditions in our office change, the staff in our New York office will be working from home the rest of the week and available via email and their cell phones.

The main YSC phone number is also down as a result of the storm, and we do not have information on when it will be up again. We are deeply sorry for any frustration this might have caused and we will post an update as more of the systems come online.

If you need to reach someone immediately – please email any of the staff below:


Jennifer Merschdorf, CEO:



Stacy Lewis, Program Department:



Lori Atkinson, Community Engagement Department:



Jenna Glazer, Development Department:



Suzanne Beckmann, Marketing and Communications Department:



Heather McGrew, Operations and Finance Department:



We appreciate your patience during this time and stay safe!


Thank you,

Jennifer Merschdorf


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The Power Lies with You

2012 YSC Tour De Pink Riders at the U.S. Capitol

As October winds down and we all begin to shift our focus to Thanksgiving and the winter holidays, it is important to remember that our voice matters and we can each make a difference.

We are all so busy balancing our lives that I sometimes question whether a small action I take really does makes a difference. Then I think about how angry I would be if I didn’t have the ability to express my opinion and someone else made my decisions for me. But, it is hard to find the time and I always wonder if anything ever really changes.

It doesn’t help that the national elections are around the corner. On the one hand, they can inspire people to take action for what they believe in; on the other, all the fighting and mud-slinging can be off-putting.

Through my years of working in advocacy, I’ve learned that small steps result in giant movements and the power of the people is larger than most of us think. Because of that strong belief YSC has endeavored to gather 13,000 signatures during the next month on behalf of all the young women with breast cancer in our community.

This is no joke … it’s probably one of the biggest challenges I’ve ever taken on. It’s very serious and immediate … if you have been diagnosed with breast cancer this is a chance to join the movement. If you know someone who has been diagnosed with breast cancer, this is an opportunity to advocate for them and join the fight!

I am tired of this disease … and I am tired of young women dying from it.

We are each just an individual, but we have enormous power to enact change when we work together. For that reason, YSC has partnered with the National Breast Cancer Coalition (NBCC) to help ensure that the voice of the breast cancer community is heard by our President and other elected officials. More important to me, is that the voice of young women diagnosed with breast cancer and all those who love them is also recognized.

The 13,000 signatures represent the 13,000 young women who will be diagnosed with breast cancer during the next year. If you know a young woman affected by breast cancer – this is a way to show her you are willing to use your voice to fight for her!

Sign this petition  and send it to your friends, family and colleagues. Ask them to sign it and send it to everyone they know. Send it to every person you know and remind them that we have the ability to create change if we unite as a community … and we need their help! Send this petition to everyone you can think of … because we must be successful … the YSC community and those who are not able to fight on their own need us!

You have my word – NO ONE who signs this petition will be put on a list and their email addresses will never be used to spam them. I am not trying to build YSC’s database – I am trying to change the conversation.

I wonder how long it will take to collect 13,000 signatures?

The power lies with you.


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I Will Never Forget Tour de Pink 2012


Lisa J. Frank riding in front of Jennifer Merschdorf

Tour de Pink is hard. Some think it might be too hard … but I think it’s just right. It’s supposed to be hard. Because it’s about proving to yourself that you’re just as strong, if not stronger, than everyone else … even though you had breast cancer.

On the final day of our Tour de Pink West Coast ride, the route took us up a hill that was miles long and seemed to go on forever. I’ll be honest … when we started climbing I was a bit worried, but as I got into a routine in my lowest gear, I knew I would get to the top … it was just going to take me awhile.

As I pedaled slowly up the hill, my mind drifted back to my Tour de Pink East Coast ride two weeks earlier and how nervous I was on that first morning. I’d never ridden more than 45 miles at one time and I wasn’t sure if I was ready for the challenge ahead of me.

Each day on that first tour, I rode for 6+ hours straight, on hills in Pennsylvania I thought would be the end of the line for me, through the Amish country which was beautiful, the historic battlefields of Gettysburg and further and further south towards our destination of DC.

I was the last rider in on both day one and two of the East Coast ride … but it was hard to feel sorry for myself, since the pride I felt was radiating from my body and obvious to everyone. I rode every day with women I love who inspire me. I was surrounded by a community that wouldn’t let me fail … not succeeding was impossible. And … I did it!!!

One-and-a-half weeks later, I was standing at the start line during the first day of the West Coast ride and I was a different person. I couldn’t wait to get on my bike. The scenery of Southern California as you can see from the photos is beyond beautiful. Riding under the Santa Monica pier, along the Pacific Coast Highway and the smell of the ocean along the way – was amazing.

As I’m remembering all of these incredible experiences from my first double TdP adventure – I’m still climbing that hill that would never end.  My legs are starting to burn and I’m wondering if I need to pull over and rest before continuing on. And at that exact moment, I feel the hand of an elite cyclist (who is also riding in TdP) on my back and he PUSHES ME up the hill!!! I was so excited, thankful and relieved. My legs were able to rest for a few minutes as I gained my strength. He said a few words of encouragement and confirmed I was good to keep going on my own. As he let go, I felt the weight of the hill back on my legs. But, I still can’t believe what I saw next … he turned around and rode back down this giant hill to go get another survivor and push her up.

That is Tour de Pink.

Rider helping rider in Tour de Pink West Coast

The tour is about strength, determination,and hard work … but it’s also about the sense of community, family and love that we feel for each other. In so many ways you could say that Tour de Pink shows the best side of humanity for three days … and 200 miles, which we all need to experience to help remind us how good the world and humans can be.

And one final comment: To all the survivors who rode this year – no matter which coast you rode on … You are an inspiration to me and to everyone whose life you touched this year. Congratulations on a job well done!!! I hope to see you next year!!!

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Categories: Taking my Body Back

Lisa J. Frank


31 Faces, 31 Days - Breast Cancer Isn't Pretty, and It Isn't Pink

Lisa Frank — YSC Founding Member, Board President and YSC Tour de Pink® Co-Founder

Lisa with her family.

From l. to r., Father Jerry, brother Paul and mother Carol with Lisa at TdP East Coast.

It was 1998; I was 36 and focused on my career as a lawyer. I was enjoying time with friends and having fun dating when I was diagnosed with stage I breast cancer. There was a history of cancer in my family but not breast cancer. Cancer was the last thing on my mind. I was living a busy life and had no plans of stopping.

After my lumpectomy, I went through chemotherapy and radiation and took Tamoxifen. I was so fortunate to have the love and support of my family and friends who were with me every step of the way.

By 2004, I was back to living my life and thought my cancer journey was over. On August 31, I felt something in the scar tissue on my left breast and was re-diagnosed — this time with stage II breast cancer.

Lisa with partner Steve.

Lisa with partner Steve.

I didn’t want to feel like I would always have this weight on my shoulders worrying when the cancer would show up in the other breast, so I opted for a bilateral (double) mastectomy. I was in a relationship with a wonderful man, and my breasts were not going to define me. Cancer wasn’t going to win.

Since the beginning, I was part of Young Survival Coalition (YSC) and connected with other young women who faced breast cancer. With each diagnosis I called my YSC support network to get help. I had questions and needed all the information I could get about treatment and reconstruction options. I could be open and honest with this group without fear of scaring them or sanitizing my concerns.

When I completed surgery for my mastectomy and began to heal, I started to feel like myself again. Since 1994 I had been cycling and had even completed numerous AIDS multi-day charity bike rides.  After my recurrence in 2004, I was mostly off my bike, but I wanted to get back on it.

At the finish of Tour de Pink West Coast

At the finish of Tour de Pink West Coast.

In 2004, a fellow YSC volunteer, who was himself an avid cyclist and racer, and I created the idea of a long distance bike ride to raise money to support YSC and raise awareness that young women can get breast cancer. There weren’t any official bike rides supporting breast cancer, and we saw this as a great opportunity to give back and have a great adventure together. I didn’t ride the first year because I was still recovering, but I organized the fundraising and ride logistics.

This ride became the annual YSC Tour de Pink East Coast ride. To date, YSC Tour de Pink has generated more than $6 million to support young women affected by breast cancer and consists of three outdoor bike rides, with indoor events around the country.

In 2011, as I was about to become YSC’s Board president I found out my breast cancer had returned. This time it spread to my parotid gland, spine, lower back and sacrum. I was 49 and facing breast cancer again. But, like before, I knew I would win this round and got right down to doing just that!

I recently celebrated my 51st birthday and am so proud of that. Every day I wake up and say, “I will fight this. I will live and live well for a long time.” I look forward to telling everyone who asks how old I am. Every birthday is a good one because not having a birthday, well, I don’t consider that an option.


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