A Personal Story of Preventative Ovarian Removal

A few weeks ago, at the American Society of Clinical Oncology (ASCO) conference, I walked over to the Bright Pink organization’s booth to introduce myself. In doing so, I met a young woman manning the station as a volunteer for the organization and we hit it off immediately, sharing stories about our kids and families. As the conversation gravitated back toward our respective organizations, she told me that her sister, Kristin Nelson, had undergone fertility preservation prior to having an oophorectomy. She gave me Kristin’s information and told me to contact her to learn more about her experience and possibly help others through her story.

Immediately upon getting in touch with Kristin, she was very open about her experience and the impact it’s had on her life 3 years later. At 34 years old, Kristin tested positive for the BRCA1 gene, making her significantly more susceptible to breast and/or ovarian cancer than someone without the gene . Her parents urged her to get tested for the gene after 3 out of 4 of her paternal aunts were diagnosed with either breast or ovarian cancer, one testing positive for BRCA1 as well as her father.  “I was shocked when I found out I had the gene. I was 34 years old, single, I didn’t know where to turn. I always thought about my fertility and wanted to have children so the thought of having to get rid of my ovaries was devastating.”

On the advice of a Clinical Psychologist specializing in medical decision-making, Kristin began looking into fertility preservation. After several mammograms, MRI’s and biopsy that proved to be negative, she knew she had to be proactive in order to save both her life and her fertility. She met with a fertility specialist and decided to bank both eggs and embryos before undergoing an oophorectomy. She also donated ovarian tissue from both of her ovaries to the Oncofertility Consortium in 2008 for research. A month later, she had a double mastectomy (removal of both breasts) and began showing symptoms of menopause.

Now at 38, Kristin has become the “go-to-girl” at Bright Pink when young women need to have their ovaries removed and are struggling with the repercussions of that. “I have never felt an ounce of regret because I took control of the situation.” This is the message that Kristin tries to convey to the women she speaks with – to be proactive and take control of your health and your fertility. To learn more about the Bright Pink organization or about your fertility options via information contributed by the Oncofertility Consortium, please visit www.bebrightpink.org.

Good News in Cancer Diagnosis and Survival – For Some

Every year, the American Cancer Society (ACS) compiles data from the National Cancer Institute, the Centers for Disease Control and Prevention (CDC), and others, to inform the public about the estimated cancer statistics for that year. The current year’s assessment had just been released – with good news. While more than 1.5 million people will be diagnosed with cancer this year, incidence rates either held stable or decreased in the past year, continuing a trend that started in the late 1990s, and more than half of them will survive their disease. The new study emphasizes the importance of issues, such as fertility, on the many survivors of cancer.

Unfortunately, cancer success and survival rates have not affected all segments of the population equally, as we’ve previously discussed. The ACS paper, “Cancer statistics, 2011: The impact of eliminating socioeconomic and racial disparities on premature cancer deaths,” also highlights disparities in cancer death rates. The analysis looked at deaths across education levels, which is frequently used as a measure of socioeconomic status. It found that cancer deaths in people a high-school education or less were more than twice as high as those for patients with a college diploma. In younger people especially, these premature deaths from cancer have a greater economic and social impact, as they are loosing more years off their lives than older people.

In addition, racial disparities were also found in these survival rates. Across all cancers African American men were 33% more likely to die from their cancer than white men. At the recent Cancer Survivorship and Sexual Health Symposium held in Washington DC, Jesse Parker, Chairman of Health and Wellness of 100 Black Men, stated that increasing cancer screenings could have a great effect on these statistics. In addition, African American women have a 17% higher death rate than white women, despite having a 6% lower incidence rate. As in men, decreased screening, delayed diagnosis, and treatment may also cause this disparity. Interestingly, other ethnic groups have lower incidence rates than Caucasians except for some cancers that are related to infections, such as human papillomavirus or hepatitis, and behaviors, such as smoking. According to the ACS, the elimination of these educational and racial disparities could save the lives of more than 60,000 people per year.

These new statistics also identified the probability of developing invasive cancers before the age of 40. In 2011, this means that 1 in 69 men and 1 out of every 47 women will be diagnosed with cancer. For this population especially, fertility is an important area of survivorship.

Young Cancer Survivors Connect Over Cocktails

In March, we blogged about a survivorship event scheduled for April 7th at the Museum of Science and Industry entitled A Night at the Museum: An Evening for Young Adults Touched by Cancer and we’re back to report what an outstanding success it was! The event targeted cancer survivors between the ages of 21-39 specifically to focus on the unique challenges this demographic of survivors face.  Over 250 young adult cancer survivors, caregivers, family, friends and others touched by cancer attended the landmark event and the response from the cancer community has been overwhelming.

According to Jorie Rosen, Manager of Community Relations at the Robert H. Lurie Comprehensive Cancer Center and one of the organizers of this event, “attendees learned about advocacy programs and support services to help them proactively manage their physical and emotional health.” The purpose of the event was to teach young adult cancer survivors how to be their own advocates, and to let them know that they are not alone – there is a network of support that is designed to meet their needs. Survivors were able to have a cocktail, participate in a panel discussion with both providers and fellow survivors, and take a private tour of the You! The Experience Exhibit.

As survivors navigated the exhibit, providers and advocates were stationed along the way fielding any and all questions the attendees had.  Oncofertility Consortium Patient Navigator, Kristin Smith was on hand to discuss fertility preservation options and resources, which proved to be a hot topic among young survivors. Attendees expressed that they wanted to learn more about fertility and cancer, specifically long-term fertility concerns post cancer. Individuals seeking more information about fertility preservation can also visit SaveMyFertility.org, where they can find the resources they need to take control of their reproductive future.

Thanks to the hard work of the cancer care community, A Night at the Museum: An Evening for Young Adults Touched by Cancer was a huge success.  We were able to connect individuals affected by cancer with survivorship resources and more importantly, with each other. On June 23rd at 6:30pm, young adult survivors will get another opportunity to make connections at the Stupid Cancer Survivorship Bootcamp at Sub 51 in Chicago, IL hosted by I’m Too Young for This, the Oncofertility Consortium and Imerman Angels. Come join us and help the young adult cancer community get educated, organized, mobilized and empowered!








































Oncofertility: Training the Next Generation of Physician Researchers

Cristina Thomas (top) with her mentors in the Woodruff Lab, Candace Tingen, PhD, and Min Xu, PhD.

Cristina Thomas is like many young students at Northwestern University. She spends her time studying, participating in school activities, and having fun with her friends. In addition to all this, over the past four years she has worked in the laboratory of Teresa K. Woodruff, PhD, on a variety of projects dealing with ovarian follicle development. A few weeks ago, all the hard work paid off when Cristina was awarded the Constance L. Campbell Award, one of just a few prestigious awards given to graduating biology students at Northwestern.

In her research, Cristina investigated some factors that may aid in the development of future fertility techniques for cancer patients, such as in vitro follicle growth. Specifically she examined how different oxygen concentrations and the presence of theca cells or macrophages (white blood cells) may increase the growth and survival of follicles. Some of this work was recently published in the journal Reproduction in a paper titled, “A macrophage and theca cell-enriched stromal cell population influences growth and survival of immature murine follicles in vitro,” by Tingen et al.

In addition to investigating new techniques, Cristina also worked with researchers to determine whether existing fertility preservation techniques are appropriate for specific cancer patients. She and a medical fellow examined the number of antral (more mature) follicles in ovaries from 140 patients with ovarian cancer and correlated those follicle numbers with the severity of the ovarian masses. These results may affect the fertility preservation treatments offered to ovarian cancer patients in the future and can guide development of additional oncofertility techniques.

A gender studies minor, Cristina also enthusiastically participated in the Oncofertility Saturday Academy, where she organized fellow undergraduate students to mentor younger girls in the Chicago program. These undergraduates provided advice on the college application process and gave the high school students a tour of Northwestern’s campus.

Cristina will continue to employ her research and oncofertility expertise as she enters the next phase of her life, as a medical student at Northwestern’s Feinberg School of Medicine. She is only one example of how the Oncofertility Consortium is training the next generation of medical specialists in the principles of oncofertility.

Repropedia: A reproductive dictionary for oncofertility

The Oncofertility Consortium often uses technical terms when discussing cancer and fertility preservation. In an effort to remove the jargon from reproductive science, Cathryn Smeyers, Program Manager of the Center for Reproductive Research, created Repropedia, which is what we link to on our blog when terms need to be defined. We asked Cathryn to tell us a little more about Repropedia and this is what she had to say:

By Cathryn Smeyers


Education and outreach are primary goals of the Center for Reproductive Research (a Specialized Cooperative Centers Program in Reproduction and Infertility Research -SCCPIR- funded by the National Institutes of Health), and this is what drew me to the Program Manager position.  A few months ago, Dr. Woodruff and I met to discuss the development of the outreach component of the Center, and she proposed the idea of creating an online reproductive dictionary to provide the public with words and definitions they could use to understand reproductive health and biology.  Thus, Repropedia was born.

As we fleshed out the details of our initial concept, we decided to make the website more dynamic by adding images and video clips of scientists/clinicians defining various terms and eventually adding an audio component.  We also added an “Ask an Expert” link, which allows users to submit a question or solicit additional information. The questions are fielded by members of the Woodruff Lab.

Our target audience for Repropedia is the general public and students interested in learning more about oncofertility.  We want these definitions to be accessible to everyone so we avoid using jargon in the definitions. To ensure accuracy and clarity, I assembled an editorial board with members from the Woodruff Lab. Every time we add a new term,  lab members review the term before it’s officially added to the site.

Our goal with Repropedia is that it will continue to evolve and grow.  We want individuals throughout the reproductive health and science communities to contribute terms/definitions, images, and video clips. In May, the annual SCCPIR research meeting was held in Chicago, just a few blocks away from the Northwestern University campus.  This afforded us the opportunity to solicit video contributions from PIs, postdoctoral fellows, and graduate students from centers throughout the country.  We also ask any scientists/clinicians visiting the Woodruff Lab to make a contribution to the site.

If you would like additional information about Repropedia or are interested in contributing additional terms, images, or video clips to this important resource, please visit the website or contact me at c-smeyers@northwestern.edu for additional details.  This work is supported Award Number U54 HD041857 from the Eunice Kennedy Shriver National Institute of Child Health & Human Development.

Oncofertility Consortium at the 2011 Cancer Rights Conference

A cancer diagnosis often carries a number of legal issues, including insurance coverage, employment and taking time off work, access to health care and government benefits, etc… These legal issues can have a serious affect on an individual’s already compromised health causing stress and confusion, which can be overwhelming. When these legal issues are not addressed, people may find that although they have gotten through treatment, they are left in financial and emotional crisis.

On June 24th, the Oncofertility Consortium is partnering with the Cancer Legal Resource Center (CLRC) to kick off the 2011 Cancer Rights Conferences, the first being held in Chicago, IL. CLRC is the host and organizer for this free conference series with additional events being held in Washington DC on September 23rd and Ann Arbor, Michigan on October 21st. CLRC is a national program developed in 1997 by both the Disability Rights Legal Center and the Loyola Law School Los Angeles to provide free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

The 2011 Cancer Rights Conference in Chicago will provide patients, survivors, and the health care community with important information pertaining to cancer-related legal issues.  Cancer-related legal issues range from employment and disability concerns to life insurance options and education rights of children and young adults with cancer.  Over 200 people are expected to attend the Chicago Conference and registration is still open so sign up for this free event to learn more about your rights and receive free legal advice.

If you are unable to attend this conference series, CLRC also offers individuals struggling with cancer-related legal issues a national, toll-free telephone assistance line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

New iPhone App Tells Doctors How To Save Cancer Patients’ Fertility

Northwestern launches app and micro-website for healthcare providers and patients

By Marla Paul —Cancer treatment can destroy a patient’s fertility, but not all physicians are familiar with the risks and options to preserve   it. Now there’s an app for that.

A new iPhone app, launched June 2, will give oncologists a quick   reference guide for preserving the fertility of children, women and men diagnosed with cancer. The information for physicians and patients also is available on the new micro-website www.savemyfertility.org.

The app and website were created by the Oncofertility Consortium of Northwestern University, a national group of physicians and scientists dedicated to saving the fertility of cancer patients through research and education.

“Deciding how to best protect an adult’s or child’s fertility should be part of every physician’s discussion with a newly diagnosed cancer patient,” said Teresa Woodruff, director and founder of the Northwestern Oncofertility Consortium. “We created the app and SaveMyFertility to help patients and their physicians have this vitally important discussion and make much more informed decisions about fertility preservation.“

Woodruff also is chief of fertility preservation at Northwestern University Feinberg School of Medicine and a member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

“Oncologists are the gatekeepers to fertility preservation,” Woodruff added. “Now a physician can quickly access this information when he or she is with a cancer patient. And it also allows a doctor to e-mail a fact sheet in English or Spanish to a patient.”

The app is debuting June 2 at the American Society of Clinical Oncology Annual Meeting in Chicago and at ENDO 2011, The Endocrine Society’s scientific sessions in Boston.

In addition to the app, 20,000 pocket guides on fertility preservation are being mailed to healthcare providers around the country.

The project was developed in partnership with the Oncofertility Consortium and The Endocrine Society. It was funded by educational grants from EMD Serono and Merck.

MEDIA CONTACT: Marla Paul at (312) 503-8928 or marla paul@northwestern.edu


Oncofertility Academy Student Receives Top Honors

Back in February, we blogged about one of our sister programs for the Oncofertility Saturday Academy (OSA) called, the Pennsylvania Academy for Reproductive Sciences otherwise known as the PARS program. Similar to OSA, the PARS program was started to teach high school girls about the research, clinical care and bioethics of fertility and cancer.  The PARS program was so successful that one of their former students, Emtithal Mahmoud, won the Pennsylvania state-wide science fair for her oncofertility research.  We contacted Emtithal (Emi) to learn more about her experience with the PARS program and below is what she had to say:

Q: Why did you initially apply to participate in PARS?

A: I have been interested in biology and all things related since seventh grade. I just love learning about life and its many mechanisms. Also, since I want to become an MD/PhD, I thought this would be a perfect opportunity to broaden my knowledge. After all, you can only learn so much in school.

Q: What did you learn from PARS? Do you think it’s a good opportunity for young women? Why?

A: I learned the fundamentals of the female reproductive system. Additionally, I was introduced to some pressing modern issues and learned how the material PARS covered could be applied to solve them. Lastly, I got a glimpse of the teamwork it takes to move the field forward. I think this is a wonderful opportunity for young women because the experience it provides is useful both academically and in every day life.

Q: Why did you decide to do a research project with us?

A: The experience I had with PARS was so wonderful that I found myself completely fascinated by the topic of reproduction. I decided to continue working with PARS in the hopes of prolonging the experience by using what I learned along with new information to go more in depth.

Q:  How did you decide on your research topic? How did you conduct the research? What did you find?

A: After learning about oncofertility at PARS and the negative effect of chemo on fertility, I really wanted to know more so I spoke with several PARS professors and some more research. I decided to research the effects of environmentally relevant doses of arsenic on the early stages of the reproductive system (follicular development, oocyte maturation, and early embryo development to the blastocyst stage). I conducted my research by doing an invitro study using a mouse model. I found that exposure at the levels I tested severely compromise follicular development and the nuclear competency of the oocyte. I also found that these doses arrest embryonic development to the blastocyst stage in a dose response fashion.

Q:  What happened with the science fair? What were your results?

A: I won second place in the local fair and first place in the regional fair.

Q: Did you feel adequately prepared to compete in the science fair based on your research efforts with our team?

A: Definitely!

Q:  What advice would you give to young women looking to become involved in science either in college or as a career?

A: Begin by seeking opportunities like these to broaden your knowledge and explore the different career options. If you are interested, learn more by asking professionals to clarify anything you don’t understand. Also, doing a research project is a fantastic way to enhance your learning experience.

It’s important to note that the success of the Oncofertility Academy is due in large part to the amazing teachers who work with these young women. One teacher in particular, Ericka Senegar-Mitchell, PhD runs an Oncofertility Academy called Be Wise in San Diego in affliation with UCSD. Among her many accomplishments, Dr. Senegar-Mitchell was recently named as a finalist for the California Teacher of the Year. We’re so proud to have such a prolific group of people committed to the field of oncofertility!

Oncofertility in the Journal of Adolescent and Young Adult Oncology

In the first volume of the Journal of Adolescent and Young Adult Oncology (JAYAO), a pioneering new cancer journal dedicated to the adolescent and young adult oncology population, an article by Oncofertility Consortium members Gwendolyn P. Quinn, PhD and Caprice A. Knapp, PhD entitled “Assessing the Reproductive Concerns of Children and Adolescents with Cancer: Challenges and Potential Solutions,” discusses the need for social science research in fertility preservation for adolescents with cancer. Knapp and Quinn consider the challenges in conducting research focused on the psychological reproductive concerns in the pediatric oncology population and offer solutions for them when possible.

To begin, when clinicians and researchers are conducting studies on the adolescent cancer population, they are often forced to use the same measures of study that are used on adult patients. This is often not suitable for the adolescent population because it doesn’t correlate with their specific needs. This opens the door for a potential solution – creating new survey instruments that target this population. Devising new ways to measure outcomes can be time consuming and often it can be difficult to recruit young cancer patients to participate in these studies.  Although there is not much we can do about timing, we can look to groups such as the Oncofertility Consortium to provide participants for the surveys as well as new ways to take measurements that are relevant to the constituent group being targeted.

Why is it so hard to get adolescent recruits for studies centered on reproductive concerns? Often it is because parents or legal guardians are the final decision-makers for their children and not all parents are comfortable with providers having fertility conversations with them. Although parents and providers both acknowledge that fertility is a concern for adolescents undergoing cancer treatment, they often disagree as to whether or not the adolescent should be informed about this risk. Parents want their children’s health restored and for them, that means their child being cancer free first and foremost. Parents also sometimes feel that their child may not be well-equipped to process both a cancer diagnosis and their potential loss of fertility so they choose not to burden their child with the former.  Quinn and Knapp suggest that studies need to address the reasons that some parents do participate in these studies and the reasons why others don’t in an effort to determine “generalizability.”

Adolescents and children have specific needs when it comes to cancer treatment that differ from an adult’s trajectory. Fertility preservation can be hard for a young person to understand, but it is important nonetheless and more effective instrumentation is needed to assess the evolving needs of pediatric oncology patients. To read Quinn and Knapp’s entire article, “Assessing the Reproductive Concerns of Children and Adolescents with Cancer: Challenges and Potential Solutions,” click here.

Chicago Celebrates National Cancer Survivor’s Day

On June 5th, the 18th Annual Cancer Survivors Celebration & Walk is taking place in Chicago, IL, at Grant Park. This leisurely, non-competitive 4 mile walk is a family-focused, community awareness event dedicated to bringing together cancer survivors, friends and family, and all those who have been touched by cancer.  It’s an event to honor cancer survivors with food, entertainment, and an opportunity to sign the Dedication Wall – a 25ft x 50ft white wall with markers at the base of it allowing people to write messages to the cancer community (a message to loved ones lost, encouragement to participants in the walk, thanks to a doctor who has helped them, etc…).

Jennifer Bowker, Manager of Communications at the Lurie Comprehensive Cancer Center, and one of the organizer’s for this year’s Walk, spoke with me in detail about the upcoming event. “We hold the walk in conjunction with National Cancer Survivor’s Day and the definition of a ‘cancer survivor’ is from the moment of diagnosis, through the rest of your life, you’re a cancer survivor.” Ms. Bowker said that this is her favorite event because it brings people in the cancer community together and embodies a spirit of positivity and camaraderie. It’s also the largest event of its kind nationally, with 4,000 people expected to participate.

As participants progress along the walk route, they will pass a series of posters called The Faces of Cancer.  Each poster houses a picture of a cancer survivor and a brief quote from them.  It inspires those walking and encourages others in their fight against the disease. One of those Faces taking part this year is Jenna Benn.  She is a 29 year old Gray Zone Lymphoma survivor, who preserved her fertility prior to beginning her cancer treatment.  She is currently undergoing her 6th and final round of chemotherapy and is looking forward to participating in the Walk on June 5th. You can see a touching video about Jenna’s experience as a cancer survivor here or visit her blog, Kill it in the Butt! and read about how she made the decision to bank her eggs before starting chemotherapy.

The 18th Annual Cancer Survivor’s Celebration & Walk is a time to celebrate cancer survivors. It’s a time to honor those who are currently fighting the disease, those who are in remission and those we have lost to cancer. To register or for more information, visit the 18th Annual Cancer Survivor’s Celebration & Walk. This is not a fundraising event nor are participants required to walk the entire 4 mile course.  If you register for the walk online by June 3rd, it only costs $15, but there is registration on the day of the event costing $25.  Please come out and show your support for this amazing event!

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