Category » Oncofertility

Foundation for Women’s Cancer: Working to Eradicate Reproductive Cancers

This year at American Society of Clinical Oncology Conference we met so many great advocacy groups who are invested in the cancer community whether through programming, research, outreach or education. Often we look to specific groups who specialize in a particular area of cancer care to provide us with information. On this occasion, we happened to meet with a group who does it all – The Foundation for Women’s Cancer, formerly known as the Gynecologic Cancer Foundation.

Celebrating its 20th anniversary in 2011, the Foundation for Women’s Cancer is an organization dedicated to expanding public awareness, education, research and training to improve the prevention, early detection and optimal treatment of gynecologic cancers such as ovarian, cervical and uterine cancer.  This national organization is dedicated to the eradication of all reproductive cancers through three unique programs:  research, awareness and survivorship.

The Foundation for Women’s Cancer has three primary research objectives to positively impact cancer care; their first mission is to support young scientists who are interested in pursuing a dual career path in both research and clinical care. The second is that they provide young scientists with seed money (averaging between $25,000-50,000 per year) to set up laboratories and find governmental funding to expand their research. The third directive is that their research should contribute in new and innovative ways to cancer research and care.

The Foundation for Women’s Cancer focuses on ovarian, cervical and uterine cancers and provides classes for survivors on Saturday’s throughout the nation, led by leading gynecologic oncologists. In these classes, survivors can get the latest information about their particular disease and its effects, including fertility options. Specifically with cervical cancer affecting predominately young women of reproductive age, fertility is an important concern for patients.

To learn more about the Foundation for Women’s Cancer, visit You can also see a list of upcoming Saturday Survivorship courses to find out if  any will be in your area. Finally, on November 6th,  the National Race to End Women’s Cancer fundraising event sponsored by the Foundation for Women’s Cancer will be held in Washington D.C. with all proceeds going to cancer research. Click here to get more information or to register.

Smartphone Apps Provide New Tools for Cancer Care

In today’s world, more and more professionals are relying on smartphone technology as part of their daily lives. Healthcare providers are no exception, with apps being designed in lieu of cumbersome pocket-guides to meet their diagnostic and medical information needs. In oncology, access to the most recent information and tools available at the point-of-care is critical for both providers and patients in the fight against cancer.

In April 2011, the Nurse Oncology Education Program (NOEP) a non-profit project of the Cancer Prevention and Research Institute of Texas launched their first iPhone app called AvidNurse. AvidNurse includes a quick-reference guide to cancer screening recommendations, BMI conversions, pain scales, and medication calculators. Nurses in all fields of practice can provide personalized and in-depth medical information about a patient’s risks for breast, prostate, colorectal, and lung cancers. NOEP Director Joni Watson, MSN, RN, OCN says, “As trusted and respected healthcare professionals, nurses can be confident sharing information via AvidNurse on tobacco cessation, cancer prevention, detection, treatment, and pain management.”

Along with AvidNurse, smartphone apps including iSaveFertility, a free mobile resource for health care providers and their patients to help navigate fertility preservation, are helping to change the face of cancer care. Providers rely on the apps to give them the most up-to-date healthcare information which in turn benefits the patient by ensuring they are well-informed and in control of their cancer treatment.

To download AvidNurse for $3.99, please visit the iTunes store. To learn more about iSaveFertility, visit and download the free app.


Cancer and Fertility Needs of the LGBT Community

Across the United States this weekend, Lesbian, Gay, Bisexual, and Transgender (LGBT) communities are celebrating the impact that LGBT people have on the world. Parades and other events from New York to Chicago to San Francisco commemorate the gay pride movement. The Oncofertility Consortium frequently hears about the needs of gay cancer patients, especially as it pertains to relationships, sexuality, and fertility. At the recent Cancer Survivorship and Sexual Health Symposium, Anne Katz, RN, PhD, discussed impediments LGBT people may face when diagnosed with cancer.

Katz referred to the “culture of heterosexism” in the medical community, including assumptions of male-female sexual relationships that can marginalize LGBT people. Often this occurs, not through intentional discrimination, but by through a lack of awareness and knowledge in the medical community. Part of this is caused by a paucity of research about cancer in the LGBT community and the research that does exist tends to focus on gay men and the AIDS epidemic.

In addition, once cancer patients do disclose their sexual orientation, medical providers may make assumptions about the patient’s desire to have children. A recent survey of oncologists and hematologists found that providers may not discuss sperm banking to all young male cancer patients. Their decision to offer fertility preservation revealed assumptions about patients needs based on characteristics, including sexual orientation.

So what can providers do to facilitate discussions with LGBT patients? Katz stated that small changes in behavior, such as referring to a patient’s “partner” rather than “husband” or “wife” opens the door. Other changes include providing same sex-oriented brochures in waiting rooms, making sure the office staff and medical forms are inclusive, and eradicating assumptions that gay men and lesbians are not interested in fertility.

Out With Cancer, a social network for cancer survivors is committed to improving the quality-of-life of LGBT cancer survivors through education about new clinical trials, personal stories, peer-to-peer mentoring, and events. They also work to educate the medical community of the specific needs of LGBT patients, such as discussions about fertility.

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

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, 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!








































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 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.

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!

Best Practices in Fertility Preservation Communication

The website, Get Inside Health: Your Exclusive Guide to Health and Well-Being, recently conducted an interview with Oncofertility Consortium member Gwendolyn Quinn, PhD, entitled “Preserving Fertility in Cancer Patients: Two Views.”  Dr. Quinn is a researcher at the Moffit Cancer Center and Research Institute as well as an Associate Professor at the University of South Florida. Dr. Quinn has conducted surveys of oncologist’s referral practices and in the interview she discusses her findings and gives recommendations for improved communication practices between patients and providers.

According to Dr. Quinn, because the percentage of young people surviving cancer has increased dramatically, providers need to focus on “quality survival” for cancer patients and this includes fertility preservation.  Dr. Quinn states, “patients have not routinely been asking about concerns about fertility, partially because they are unaware it’s even an issue and partially because they’re afraid to ask for anything beyond survival.”  This is exactly why it is up to the provider to broach the topic of fertility preservation, especially at a time when the patient may not be able to think beyond their diagnosis and initiate fertility preservation dialogue on their own.

Dr. Quinn also discusses the ASCO guidelines for discussing fertility preservation with patients and states that the guidelines are not meant for oncologists to pick and choose who they should have fertility preservation conversations with. The guidelines include all patients of reproductive age regardless of what their prognosis is. Recently there have been a growing number of families interested in posthumous reproduction if a patient does not survive their disease. Many oncologists acknowledge that they are not comfortable having fertility preservation conversations with patients who have a poor prognosis; however, Dr. Quinn argues that providers need to set their personal values aside and consider what the patients needs are.

Finally, Dr. Quinn discusses the role of the oncologist in the fertility preservation dialogue. She states that while it’s not their responsibility to have a full discussion with a patient regarding fertility preservation, it is their responsibility to let them know their options and then refer them to a reproductive endocrinologist. The full interview with Dr. Quinn, “Preserving Fertility in Cancer Patients: Two Views,” is available now.

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