Ready for Movember!!

Don’t worry, it’s not a typo – Movember is the proper name for the month of November where men join together to grow moustaches (aka the mo) for the whole month in order to fundraise and raise awareness about cancers that affect men.  The moustache is Movember’s ribbon, where “Mo Bros” are literally “changing the face of men’s health.”  Movember, which originated in Australia, has grown tremendously since its inception in 2003.  Last Movember, 255,755 Mo Bros and Mo Sistas (women who support their Mo Bros in bringing attention to men’s health) from all over the world raised $42 million from the generosity of more than one million donors.

This year, Movember will donate the money raised from the US campaign to the Prostate Cancer Foundation (PCF) and LIVESTRONG.  The PCF uses the Movember funds to support research on the treatment and prevention of prostate cancer.  The money given to LIVESTRONG will be used for a variety of projects, one of which is Fertile Hope, the fertility preservation initiative dedicated to educating and supporting cancer patients and survivors whose treatments and/or disease put them at risk for infertility.  As a Fertile Hope Center of Excellence, the Oncofertility Consortium is excited about the partnership between Fertile Hope and Movember and encourages everyone to support the cause!  For more information on male fertility preservation, please call 866-708-FERT (3378) or visit myoncofertility.org.

On a personal note, I am particularly excited about Movember because my husband is part of a Movember team.  We each have prostate cancer in our families, so the issue hits close to home.  I’ll keep you updated on his progress and share pictures of the ‘stache.  It should be a fun (and hairy) adventure!  Leave a comment and let us know about your plans to participate in Movember!

Trick or Tweet!

I’m a newcomer to Twitter, never having caught on to the Twitter craze that has become so popular among groups and individuals, young and old.  In working with oncofertility@twitter, I must admit that I am really enjoying learning how Twitter works, and most importantly, learning from members of the Twitter community.  Who knew that so much could be shared in 140 characters or less?

The Oncofertility Consortium joins a large group of cancer and fertility support organizations on Twitter to raise awareness about cancer issues, ranging from prevention to survivorship.  The exchange of ideas and information through daily and even hourly tweets allows this active community to continually grow and gain a stronger voice.  Oncofertility@twitter works to put fertility preservation at the forefront of cancer care by providing resources, giving updates, and sharing expertise on how to handle fertility-threatening diseases or treatments.  Each tweet is a teachable moment that informs patients and their families about the opportunity to secure biological parenthood after cancer.  Currently, there are 64 followers of oncofertility@twitter – follow us today and bring us closer to our goal of 100 followers by Thanksgiving!

Have a safe and healthy Halloween!

PS: Also follow us on facebook!

Oncofertility at the USA Science and Engineering Festival

The National Mall in Washington D.C. was the place to be for inquisitive minds this past weekend–the USA Science and Engineering Festival held there on Saturday and Sunday drew crowds of nearly 1 million people who took part in over 1,500 hands-on activities, exhibits, and science shows.  Our own Institute for Women’s Health Research had one of these exhibits, where Cathryn Smeyers and I were able to share information about the Women’s Health Sciences Program and to help spread the word about Oncofertility.

Did you know that the “pimento” in most cocktail olives isn’t really a pimento at all–it’s actually made from a compound that comes from seaweed?!?  No?  Well you’re not alone–this came as a surprise to most of the 2000 visitors to our booth, each of whom diligently dissected that “little orange thingy” out of an olive and found out what in the world it has to do with women’s health.  They found out that the seaweed compound inside some olives is called alginate, and each visitor got to mix some alginate with a calcium solution and watch what happened.  Even kids as young as 2 were eager to give it a try and to squish the little beads that formed when the alginate came in contact with calcium.  Our slightly older audience members were also very interested to find out how researchers at the Oncofertility Consortium are using these little alginate blobs as a sort-of artificial ovary–allowing ovarian follicles placed inside them to hold their 3D shape as they grow, so that we can learn how to grow healthy eggs outside of the body.  To learn more about this process for yourself, check out this animation at myoncofertility.org.

The Festival was a very exciting and inspiring place to be!  It was invigorating to see so many young people excited about all kinds of science, and to hopefully encourage them to become part of the next generation of leaders in science and medicine.  This Festival was the inaugural run of what will hopefully become an annual event.  Be sure to check out the 2010 Expo Days Recap Video to get a taste of what the Festival had to offer!  In the words of President Obama, “Keep exploring, keep asking questions, keep having fun.  The future of this country and the advancements of the next century are in your hands.”  “My hope is that this festival is just the beginning for all of you–that’s not just the power of science, that’s the promise of America.”

Interview with Holly: Oncofertility Patient in TIME Magazine

The October 11, 2010 issue of TIME magazine highlighted the importance of fertility preservation for cancer patients. The article discussed the mission of the Oncofertility Consortium and interviewed a young cancer survivor, Holly, who underwent fertility preservation at Northwestern Memorial Hospital in Chicago, IL. Since Holly works down the street from us here at the Oncofertility Consortium, I recently had the opportunity to sit down with her and learn more about her triumph against cancer.

The TIME article told the story of Holly’s breast cancer diagnosis and treatment in 2009. In our lunch meeting, I was surprised to learn that this was not her first battle with cancer. At age 14, Holly was diagnosed with Hodgkin’s lymphoma. As we sat down for lunch, she described the rigorous treatment of that first cancer with, “six months of chemotherapy and an additional two weeks of radiation therapy.”

Due to the type of radiation treatment, Holly knew she was at increased risk for later breast cancer so when she was 25, she began annual screenings. According to Holly, “the first year I went for monitoring was the only mammogram that was normal.” After that first screening, every yearly exam found some kind of mass that ended up being benign. But in 2009, the newest mass was diagnosed as malignant. Holly remembers the day well because it was, “two months to the day after I got engaged.”

Over the next month, Holly worked with her doctors to develop a treatment plan for the cancer and to preserve her fertility. She and her fiancé, Rich, decided to undergo hormone stimulation for embryo banking before completing the cancer treatment that may have impaired her fertility.

More than a year later, Holly is cancer-free, a newlywed, and already looking forward to using her stored embryos. “It is very exciting that these embryos could become our babies,” she said. As she sat across from me at lunch, I could see the peace-of-mind that the frozen embryos give her. According to Holly, “With all of life’s uncertainties-why add more?”

Parthenogenesis and Policy in Science Magazine

An image of a parthenote, courtesy of Alison Kim, PhD

An interdisciplinary team from the Oncofertility Consortium published a paper today in the journal Science on the intersection of politics and scientific research. The group, made up of a historian, a bioethicist, and scientists from the Oncofertility Consortium highlighted how a flawed U.S. law restricts research in fertility preservation for cancer patients. Specifically, the law prevents federal funding to pay for research that uses parthenotes in research.

Parthenotes are a group of cells derived from an egg that begins dividing without fertilization from sperm. The short policy article in Science describes the biology of parthenotes and explains their potential broad benefits for research in many aspects of cancer, fertility, and oncofertility. As we discussed in a previous blog post, parthenogenesis could be used for researchers to identify eggs that are healthy enough to begin the early stages of cell division. This activation would allow scientists to identify methods to successfully mature eggs outside of a woman’s body that are ready to be fertilized. This could help oncofertilty patients who have lost the ability to have biological children due to cancer and its treatment.

Tingen et al. also describe the history of the law-in-question, the Dickey-Wicker Amendment, which prevents the production, use, or destruction of embryos or parthenotes with federal money. In 1993, the U.S. Congress and President Bill Clinton gave the National Institutes of Health (NIH) the authority to provide financial support for human embryo research. Before funding such research, the NIH established a group of 19 experts in science, medicine, ethics, law, and social science, called the Human Embryo Research Panel to determine the moral and ethical issues raised by this research.

The panel found that the creation of parthenotes for research purposes was ethically acceptable while embryo research warranted additional review. As such President Clinton directed the NIH to prevent funding for most embryo research but allowed them to provide money for studies on parthenotes. A few years later the Dickey-Wicker Amendment was drafted to restrict all embryo research. Looking at prior legislation, these non-scientists included the term “parthenote” into the bill.

Recent legal rulings have brought embryo research and the Dickey-Wicker Amendment into the spotlight again. Rather than continue this mistake in the law, the authors in the Science article call for the removal of parthenotes from the Dickey-Wicker Amendment. They provide a more detailed explanation of their position in an upcoming article in the American Journal of Bioethics.

Learning about Breast Reconstruction

Did you know that some breast cancer patients do not receive information about breast reconstruction options at the time of diagnosis?  The Cancer Support Community (CSC) issued a survey to 840 women with breast cancer from July 14 – August 20, 2010; of these women, 762 were eligible for breast reconstruction and 43 percent reported that they did not receive information about breast reconstruction options during discussions about their treatment plans at the time of diagnosis.  To be frank, I was very surprised by this outcome, especially with the amount of breast augmentation among celebrities and high profiled people that is frequently photographed and published in the mass media.  Why are cancer patients at a disadvantage?  What is going on?

According to the Cancer Support Community, the results unveil the gap in breast cancer treatment resources and the need for a trusted, validated, and widely available single resource for patients to use in order to make educated decisions about their treatment plans.  Consequently, the CSC will be launching a new national program, Frankly Speaking about Cancer: Spotlight on Breast Reconstruction, which presents comprehensive information on breast reconstruction.  The program was developed with the mission to promote patient empowerment using both in-person and web-based resources.  Frankly Speaking about Cancer: Spotlight on Breast Reconstruction consists of three components: 1) 75 community-based patient education workshops that will be offered for free throughout the U.S. in 2011 and 2012; 2) a comprehensive patient education resource guide; and 3) multimedia education tools and online resources to provide women with breast cancer a dynamic forum to discuss breast reconstruction issues.  This effort will fill the gap and address the need for breast reconstruction information for patients to utilize at the time of their diagnosis.

Similarly, the Oncofertility Consortium provides resources to empower both health care providers and cancer patients to address fertility preservation concerns at the time of diagnosis.  Through our own experience, we have learned that even though cancer patients may decide not to pursue any fertility preservation methods, they appreciate and value being presented with the options that are available to them.  The opportunity to make informed choices at the time of cancer diagnosis is a right that the Oncofertility Consortium and Cancer Support Community work to protect and strengthen.

Cancer Survivorship 101 Conference Covers Oncofertility

This upcoming November 12, 2010, the Northwestern University Feinberg School of Medicine and the STAR Program (Survivors Taking Action & Responsibility) are hosting a regional conference in downtown Chicago, IL. The event, titled Cancer Survivorship 101: Educating Primary Care Providers in their Treatment of Cancer Survivors will teach health care professionals how to better serve cancer survivors.

This event at the new Prentice Women’s Hospital (250 E. Superior Street, Chicago, IL) will highlight how physicians, internists, nurses, social workers and other caregivers can maintain the health of both adult and childhood survivors of cancer. Experts from around the country are presenting current knowledge on post-cancer health risks, racial disparities in cancer survival, and the psychosocial care of cancer survivors.

A member of the Oncofertility Consortium will also present her work with cancer survivors. Dr. Clarisa Gracia, an Assistant Professor of Obstetrics and Gynecology at the University of Pennsylvania, is an expert in reproduction and infertility in cancer survivors. Given the results of cancer treatment on fertility, do survivors have to worry about contraception? What other post-cancer effects do cancer survivors face that may impact their reproductive health? Dr. Gracia will present answers to questions such as these in an afternoon seminar.

The event will also allow like-minded health care professional discuss their experiences with cancer survivors and examine the different models of cancer survivorship follow-up care. Physicians who attend can earn continuing medical education credits for attending the daylong conference. To register for this event, click here.

Run for Prentice’s 1st Chicago Marathon

On 10-10-10, a record number of runners started the annual Bank of America Chicago marathon across the neighborhoods of the city.  For the Oncofertility Consortium’s own Clinical Research Coordinator, Shauna Gardino, it was a warm start to her 10th marathon.  Despite the less than ideal weather conditions, Shauna completed the race with an impressive finish time to complete her milestone marathon.  For Shauna, the race was meaningful not only because of the coincidental play on numbers, but also because she ran as a member of the Run for Prentice 2010 fundraising team.

According to the team’s website, the money raised will be directed at “clinical, research, and education initiatives that support women’s health at all stages of life,” which also includes support for programs such as Gynecologic Oncology at Northwestern Memorial Hospital.  Because of Shauna’s work with the Oncofertility Consortium, whose mission aligns with that of Friends of Prentice, she felt especially inclined to support the Run for Prentice team in their inaugural year.  Their goal was to raise $150,000; Shauna exceeded her personal fundraising goal through the generous support of family and friends and the team itself raised a total of $144,571.  The team’s fundraising efforts will continue until November 15, 2010, so there is still time to contribute if you have not yet had the chance.  For any questions, please contact Kristin Clark at 312-926-4530, krclark@nmh.org.

How do you show your support and raise awareness for women’s health?  Do you know anyone who ran the marathon with the Run for Prentice 2010 team or another women’s health-related team?

Journal of Clinical Oncology Covers Adolescent and Young Adult (AYA) Cancer

On October 12, 2010 a special issue of the Journal of Clinical Oncology will highlight the importance of adolescent and young adult (AYA) cancer awareness. In an overview on AYA oncology, David M. Thomas, et al., emphasizes the “clear clinical need” for a new subfield of oncology. Issues that are important to AYA cancer patients are relevant to many clinicians, from oncologists (pediatric, medical, and radiation specialists) to nurses, psychologists, and reproductive endocrinologists.

In addition to the fertility issues that we often discuss on this blog, AYA patients need tailored approaches to care depending on their age. Unfortunately, there is a lack of data on the side effects of specific chemotherapy and radiation treatments on AYA patients. The quality of survivorship is also important to the AYA population and requires clinicians to have a broad understanding of the many life changes that patients may go through during or after treatment including attending college, entering the workforce, or starting a family.

A position statement in the same issue calls for increased training for health professionals that work with AYA populations. Specifically the authors recommend that professionals have AYA-specific clinical knowledge and can deliver appropriate care to their patients. In the case of oncofertility, this would require the clinical community to know all of the currently available fertility preservation options and deliver care by referring them to appropriate reproductive specialists. The Oncofertility Consortium tries to facilitate this process through the FERTLINE that helps providers and patients understand the fertility preservation options available in their area.

The Young Adult Alliance was started to mobilize the many organizations that care about AYA issues and holds an annual conference every year. This November, members of the Oncofertility Consortium will attend the conference and present their knowledge on navigating oncofertility patients and the different perspectives in oncofertility. We look forward to meeting with the AYA community and hearing their insights on the issues!

Watching Football and Thinking about Oncofertility

I’m a huge football fan, so most Sundays in the fall and winter are spent watching games.  Starting this past Sunday and running until the end of the month, all of the NFL teams will accent their uniforms and gear with pink, in support of the American Cancer Society’s breast cancer awareness campaign.  During one of the games, my friend commented, “I’m all about pink and bringing attention to a cause, but is this really what my donation to cancer research is paying for?”  Her question really got me thinking about how awareness campaigns are run and whether or not they fulfill their mission improve health outcomes.

Coincidentally, the Los Angeles Times published an article questioning the benefits of awareness campaigns.  The author highlighted a few reasons why awareness campaigns, specifically breast cancer awareness campaigns, may not have the impact they promise: little improvement in breast cancer mortality rates; lack of alignment of the goals of the campaign with developments in breast cancer research, which may lead to women being over-diagnosed and undergoing unnecessary treatments; and conflict of interest between purpose of the campaign (i.e. increase and improve early detection of breast cancer) and sponsorship by pharmaceutical companies that provide breast cancer drugs.  Her compelling arguments made me think about whether the Oncofertility Consortium’s own awareness efforts have similar characteristics and what could be done to strengthen its campaign.

The Oncofertility Consortium raises awareness on all different fronts by approaching solutions to fertility impairment from cancer treatment in partnership with basic scientists, clinicians, and social scientists and humanists.  Basic scientists involved in fertility preservation research use the newest, groundbreaking materials and techniques to increase cancer patients’ likelihood of having children after fertility-threatening cancer treatment.  Clinically speaking, the impact of the Oncofertility Consortium occurs at the time of a young patient’s cancer diagnosis when information is exchanged about what fertility preservation options are available.  Whether or not the patient decides to pursue fertility preservation, the critical element is that the patient, regardless of prognosis, socioeconomic status, and race, is made aware that her cancer treatment may affect her fertility and that now is the opportunity to act.  Consortium social scientists and humanists examine case studies and conduct “thought experiments” to reflect on the historical, ethical, and social implications of fertility preservation.  In all, the Oncofertility Consortium’s education and dissemination efforts avoid the potential pitfalls of awareness campaigns by staying on top of the science, respecting the patient’s wishes regarding her fertility, and examining the societal and ethical conflicts that surround fertility preservation.

Of course, the Consortium’s awareness campaign is a dynamic work in constant progress and growth.  The Oncofertility Consortium strives to engage trainees and fellows in the basic, clinical, and social sciences and humanities to become the next generation of fertility preservation experts.  Outreach to cancer support and advocacy communities continues to develop in order to spread the message of the Oncofertility Consortium through existing local and nationwide networks.  Resources such as publications, patient and provider testimonies, training videos, and conference presentations are regularly updated and added on the Oncofertility Consortium and MyOncofertility.org websites.  Through consistent vigilance and self-evaluation, the Oncofertility Consortium ensures that its awareness campaign remains effective and valuable to cancer patients and their families.

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