Category » Fertility Preservation

Calling all Cancer Survivors to Evaluate Fertility Fact Sheets

The Oncofertility Consortium and the Hormone Foundation developed fact sheets for men, women, and children to learn about the impact of cancer on their fertility, hormonal management, and fertility options. These fact sheets are available at, a website which provides patients and providers with information about the reproductive health of cancer patients and survivors. They are offered for men, women, and children and come in both English and Spanish versions.

In an effort to evaluate the usefulness of the fertility preservation fact sheets, a new on-line survey is being conducted by Oncofertility Consortium members, Marla Clayman, PhD., and Sara Barnato, M.D., called,  “Evaluation by patients of the effectiveness of Fact Sheets developed to provide information on fertility preservation options and hormonal health after treatment.” They are evaluating the fact sheets in order to improve and expand upon them. All interested parties need to do is review a fact sheet in English or Spanish, and complete a short survey. Any cancer survivor age 18-44 may participate.

By participating in this new survey, survivors are not only helping themselves to better understand their cancer experiences but also potentially helping future patients. The more feedback oncofertility researchers receive, the better they are able to distinguish the impact these fact sheets have on cancer patients and survivors.

Interested survivors will be asked to read a Save My Fertility fact sheet, consent that they are between 18 and 44 years old, and complete a short survey. This short, on-line study makes it easy for cancer patients and survivors to help advance cancer research.  We are hopeful that we we’ll have at least 100 participants before the New Year, so please take the time to complete the survey before December 31st!

Learn more about this new survey.


Oncofertility in the Journal of Adolescent and Young Adult Oncology, Take 2!

I’m excited to be writing about the second issue of the Journal of Adolescent and Young Adult Oncology (JAYAO) , the first cancer journal of it’s kind. This second issue is no small feat – many journals come and go and it takes a dedicated editorial staff and readership to keep the ship afloat. JAYAO has succeeded in putting out interesting and engaging articles that keep me (and everyone else!) coming back for more.

My favorite feature of JAYAO is the last section, “Voices of AYAO,” which shares stories from real patients and survivors, in their own words.  It’s great to hear about AYA cancer from the people who have lived it or are still living through it. It’s especially poignant after sifting through and disseminating the previous journal articles because it reminds you that there is a person behind every statistic and case study.

In this particular issue, a survivor named Jenee shares her story with cancer as both an adolescent and an adult. At 15, she was diagnosed with osteosarcoma and had to have her leg amputated; at 18 she had a relapse of osteosarcoma; and at the age of 38 she was diagnosed with Stage 2B ovarian cancer. She had to have a total hysterectomy followed by six weeks of chemotherapy, sending her body into immediate menopause. “It was easier to overcome the loss of my leg than the loss of my ability to bear children,”  she states.

Jenee goes on to discuss what the loss of her fertility meant to her and how she struggled with the lack of information she received regarding her fertility preservation options. It had immediate consequences and continues to be something she must overcome.  She states, “On a daily basis, I am reminded of my dreams of being a mother in others.” Reading this was heart wrenching, but at the same time her story serves as motivation for young cancer patients, their caregivers, and providers to be more informed about fertility options for cancer patients.

To read the latest issue of JAYAO and see Jenee’s story along with a variety of multidisciplinary content, please click here.

Examining Cancer, Fertility, Sexuality, and Gender – A Study

By Maya M. Harper, M.A.

Every year, 70,000 adolescents and young adults (AYAs) between the ages of 15-40 are diagnosed with cancer. They may experience this diagnosis as a devastating twist of fate that has the potential for derailing their life from its current track. However, with the changes in the oncology field, cancer has become something that is survivable. People can and do have full lives after cancer.

The cancer treatments that can save a person’s life are not without risks. One of these risks is loss or impairment of fertility. There are proactive measures, such as sperm banking and embryo freezing, that a person can take if they have time before treatment. However, they may not find out about these services until it is too late. Even if they are presented with options, they must make decisions when they are already overwhelmed with making decisions about cancer treatment.

It is not uncommon nowadays for people to put off having children or even thinking about children until 30 or later. A cancer diagnosis means that a young adult may have this decision thrust upon them without warning. They may not have a partner. Kids may be the furthest thing from their minds. They have to make the decision not only of whether they want children, but also whether they are willing to have a child with the intervention of medical technology. Heterosexual people, in particular, may have always assumed that they could have children “naturally” someday. They may have much to consider. Fertility issues can also impact the romantic relationships of young adults who have been diagnosed with cancer.

Our new study – An Examination of Cancer Related Fertility Concerns– seeks to find out how people learn about and feel about fertility implications of cancer and cancer treatment. We would also like to find out whether there are differences in the ways that people of various sexual orientations and genders experience these implications. Heterosexual people and LGBT (lesbian, gay, bisexual, and transgender) people may tend to have different views of biological reproduction even prior to a cancer diagnosis.

Therefore, we are recruiting people who were diagnosed with cancer as young adults. We’d like to talk with them about their experiences for 45 minutes to an hour. I am excited to begin this study, because it is something that is truly novel. We are looking at oncofertility through a different lens than has been done before.  We may find interesting and useful results about the roles of sexual orientation and gender with respect to oncofertility. If you are interested in the study, please contact Maya Harper at

Bright Pink and the Oncofertility Consortium Partner Up for Fertility Preservation

Earlier this year, I blogged about a young woman and volunteer with Bright Pink, Kristin Nelson, who had preventative ovarian removal after she tested positive for BRCA1. BRCA1 and BRCA2 genes are a class of genes otherwise known as tumor suppressors, and a mutation of these genes has been linked to a significantly increased risk for the development of breast and ovarian cancer at an early age. Kristin had enough of a family history of breast and ovarian cancer to want to take measures to protect herself, should she develop cancer as well. Knowing this would impact her fertility, she decided to bank eggs and embryos prior to her oophorectomy.

Luckily, Kristin knew enough about her fertility risks with BRCA1 to pursue fertility preservation prior to her surgery, but not everyone has the same experience. In an attempt to raise awareness and education about fertility preservation in high-risk young women, Bright Pink has partnered up with the Oncofertility Consortium to present, Fertility Preservation for High-Risk Young Women National Teleconference on November 15th at 8:00EST. The teleconference seeks to help high-risk young women understand the basics of fertility concerns, their options for fertility perseveration and parenthood, and provide valuable resources that are available. Leading the information session will be Oncofertility Consortium Director, Teresa K Woodruff, along with Kristin Nelson and Melissa Synder from Bright Pink. To learn more about how you can participate in this teleconference or to register, please visit


Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

The History of Reproduction and Fertility Preservation

I recently sat in on a new fall course offering at Northwestern University, the History of Reproduction, taught by Sarah Rodriguez, PhD. Over the last few years, Sarah has contributed her historical expertise to the Oncofertility Consortium, ensuring that the Consortium receives a healthy dose of the humanities. This past summer, Sarah and I shared an office space and discovered shortly thereafter, a similar background in women’s history, and randomly, a love of Iowa.  How could I not pass up an opportunity to get my history fix in and catch up with Sarah?  So off I went…

The seminar was just the right size to foster dynamic yet intimate discussion and the students hailed from a variety of academic disciplines, including Woodruff Lab member, Robin Skory, who is pursing an MD with a PhD in Reproductive Sciences. This would definitely be my first experience sharing a history course with a student of her background, but then again I work in an organization that fosters interdisciplinary collaboration. I like that this is becoming the new norm in my life!

The study of reproduction is a relatively new specialty, and developed in large part from a focus on body politics during second wave feminism in the 1970s.  It was also in the 70s, that the first IVF baby was born, making “infertility,” more of a chronic condition as opposed to barrenness or sterility. As new technological advances made it possible for increasing numbers of infertile couples to conceive biological children, more people came forward to seek assistance with reproduction.

As more advances are made in the Reproductive Sciences, we’re seeing the paradigm shift from individuals who are infertile being treated to people being treated that may become infertile due to cancer or it’s treatment.  Infertility has also become a place where people with seemingly competing interests, converge and engage with one another. In the 70s, feminism denounced reproductive techniques claiming it reinforced certain stereotypes of women as only mothers and made them victims of patriarchal medical “advances.” Today, however, we see another side of feminist thought arguing that ART has the ability to empower women because it has the potential to enable them to take control of their reproductive future. It’s based in the same ideals, but the discourse has changed.

How did your parents view reproduction and fertility? What do you think about it today and where do you think we will we be in 25 years? How has your experience shaped how you view fertility and reproduction? These are the kinds of questions that are important to discuss and explore because how we understand our history, shapes how we see our present and ultimately guides how we map out our future.


Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!



Non-Surgical Interventions for Female Fertility Preservation

Baby rhesus monkey born during Dr. Zelinski's study

Over the past decade, women who are about to undergo sterilizing medical treatments have seen a dramatic increase in the number and success rates of methods to preserve their fertility. Women can now cryopreserve their ovarian tissue, eggs, or embryos prior to chemotherapy or radiation. However, all non-experimental forms of fertility preservation currently require surgery. What if women could retain the ability to have biological children without going under the knife? That is what oncofertility researcher Mary Zelinski, PhD, from the Oregon National Primate Research Center , and Jonathan Tilly, Vincent Center for Reproductive Biology, Vincent Department of Obstetrics and Gynecology, Massachusetts General Hospital, examined in a recent paper.

The article is based on the knowledge that cancer therapies cause programmed cell death in a woman’s immature eggs, called oocytes. Dr. Tilly discovered that one factor, sphingosine-1-phosphate (but we’ll call it S1P) prevents this cell death from occurring in mice. However, just because a fertility preservation treatment works in mice doesn’t mean it will work in humans, so Dr. Zelinski took the next step and examined whether S1P and a similarly acting compound, FTY720, also prevents fertility loss in rhesus monkeys.  These non-human primates are genetically very close to humans, have similar reproductive organs, and may indicate whether the treatment may also work in humans.

Dr. Zelinski implanted small pumps to continuously deliver S1P or FTY720 directly to the ovaries of the monkeys for one week prior to exposing the ovaries to X-irradiation. She then examined the resumption of menstrual cycles and ovarian health of monkeys treated with or without S1P. Monkeys that did not receive the S1P either never had another menstrual cycle during the study or only had one after the radiation, indicating damage to the ovaries. However, of the monkeys treated with S1P, almost all resumed their cycles within 6 months. FTY720 had an even greater protective effect: all monkeys resumed menstrual cycles within 3 months. In addition, the follicles within the treated monkeys were healthier than those who did not receive SP1 or FTY720.

As FTY720 had the most protective effects on monkey ovaries, Dr. Zelinski next examined whether these females could produce biological offspring after radiation treatment. Excitingly, all females successfully got pregnant and carried their health offspring to term. In addition, adult human ovarian cortical tissues xenografted (or transplanted between two species) into mice also exhibited a reduction in radiation-induced primordial oocyte depletion when preexposed to S1P. This work indicates that scientists are getting closer to preserving fertility and hormonal health for young women with cancer or other diseases requiring radiation treatments. Read the article or watch a news clip on this research.


Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

Fertility Preservation Goes Italian!

At the Oncofertility Consortium, we are always trying to make sure that we have the most up-to-date and accessible information regarding fertility preservation, particularly for patients. Whether we are partnering with advocacy groups to let patients know about support services available to them or we are sharing the latest research being done in fertility preservation, we want to make sure that we reach as many people as we can. One way that we work to do this is by making sure fertility preservation information shared on our partner websites is accessible to non-English speakers.

Currently, both of our sister sites, and, have Spanish translations. Spanish seemed like the logical next step to creating a larger readership and expanding our reach within the oncofertility and patient community. Now we’re on to phase 2: Italian via Dormant Buds Association and website!!

Dormant Buds is an association founded based on the ideas of a gynecologist who works at a public hospital and specializes in fertility.  After contact with dozens of patients who, because of aggressive therapies, lost their ability to have children, the doctor, along with the help of a group of volunteers, designed a reference website, In the Section “Domande,” are Italian translations of the animations. Take a look at this new website to see the latest translation!


Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!


Playboy, Cancer, and Fertility Preservation: Which One of These is Not Like the Other?

At the Oncofertility Consortium, it’s no secret that we believe in the importance of fertility preservation for young cancer patients – it’s what we’re all about. Research, education, advocacy, clinical care, you name it, we’re on top of it and constantly looking for ways we can improve the fertility outcomes of cancer patients. There is a lot that goes into this kind of work, and we receive a tremendous amount of support from the greater cancer community, individuals, academic institutions, clinicians, etc… In other words, it takes a village, and one of those villagers just so happens to be Playboy, Inc. Let me explain…

Men hoping to preserve their fertility before undergoing treatment for cancer or another fertility-threatening disease can cryopreserve, or freeze, their sperm. This is the most established fertility preservation method for males and samples are obtained in what is called a “male production room.” Before going into the room, the men are supplied with a “visual tool” to help facilitate this process and in general, a Playboy magazine is what they get.

Due to the fact that many of our male cancer patients are immuno-compromised, meaning that their immune systems are in a fragile state, they need to be provided with a visual tool that is unopened and still wrapped in plastic. This ensures that their health is not compromised in any way.  Hey, it’s giggle-inducing I know (I’m smiling as I type this post up), but it’s still a link in the chain – a part you may not give much thought to.

Which leads me to this – a big thank you to Playboy, Inc for generously donating a years worth of magazines to the Oncofertility Consortium for our male cancer patients undergoing fertility preservation! Not only are they helping out our patients, but they’re also demonstrating their belief in the importance of oncofertility by choosing to support us among the numerous opportunities they have to donate to non-profit organizations. Sometimes, it’s the little things that count the most!

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

Cancer Rights Conference Series: October 21st in Ann Arbor, MI

This past year, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for their Cancer Rights Conference series, which just wrapped up the second installment in the three-part series in Washington D.C. Now, believe it or not, the final installment of the conference series is fast approaching so if you haven’t participated yet, it’s time to get involved! Join us on October 21st, in Ann Arbor, MI, for this informative and free, one-day event. Our goal is to empower attendees to better advocate for themselves and share their knowledge with those who most need access to information and resources on cancer-related legal issues.

As always, CLRC will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.

October 2nd: The Lynn Sage Breast Cancer Town Hall Meeting

According to the American Cancer Society (ACS), a woman in the United States is diagnosed with breast cancer every three minutes. This breaks down to a 12 percent, or 1 in 8, lifetime risk for women of developing breast cancer in the U.S. and right now, there are about two and a half million breast cancer survivors. Chances are, those of you who are reading this blog have been affected by breast cancer either personally or indirectly, through family and/or friends who have been diagnosed.

For those of you with questions about breast cancer treatment options, family history, diagnosis and support services, the Lynn Sage Breast Cancer Town Hall Meeting will take place on Sunday, October 2nd at Northwestern University’s Chicago campus. It is an interactive discussion with Northwestern healthcare providers, providing you with an opportunity to have your questions answered by experts, learn about local and national support networks and meet with breast cancer advocacy groups.

Among the expert panel of healthcare providers will be our own, Kristin Smith, answering any questions you may have regarding fertility preservation and fertility options prior to and following cancer treatment. Joining Kristin will be a panel consisting of a cancer geneticist, radiation oncologist, survivorship and support expert, and a surgical oncologist. It’s a great venue to get more information and meet others, who may have gone through or are going through, a similar experience with breast cancer.

The town hall meeting is a free event and open to the public. There will be ample time provided for attendees to ask questions and get answers from our expert panel so come prepared with your most pressing concerns. For more information, including registration and directions, please visit or call 312.695.1304. Walk-ins are always welcome so don’t let a little thing like registration hold you back! The most important thing is that you join us and get the answers and support you need.

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