Many of you may already know about the widely popular organization, Stupid Cancer, but for those of you who are new to our blog, Stupid Cancer is the nation’s largest support community for young adult survivors of cancer. They support a global network of survivors, caregivers, providers and advocates to ensure that no young adult is unaware of the age-appropriate resources available to them. Stupid Cancer empowers young adults affected by cancer through innovative and award-winning programs and services, including Stupid Cancer Happy Hours, the Stupid Cancer Show, and the annual OMG! Cancer Summit for Young Adults.

The annual OMG! Cancer Summit for Young Adults is the premier oncology conference and social networking event for the young adult cancer movement. A pivotal healthcare event, OMG! is one of the largest gatherings of young adult patients, survivors, caregivers, professionals and advocates in the world. The event inspires thousands to get organized, build community and unite as one to drive change. In April, Stupid Cancer hosted its sixth OMG! Cancer Summit in Las Vegas, NV, and attracted over 600 attendees. As one would expect, Stupid Cancer makes the weekend-long event not only informative but also FUN, with events such as an ice cream social, and Stupid Cancer pub trivia.

Over the last few years, members of the Oncofertility Consortium have attended OMG! to help young survivors understand their fertility options and provide resources and pertinent information to young adults whose fertility may have been affected by their cancer treatment. This year, Consortium member, Laxmi Kondapalli, MD, MSCE, moderated two breakout sessions entitled, “Fertility: Rights & Options With, Through, And Beyond Care.” Dr. Kondapalli served as the clinical expert and reproductive health specialist alongside Alice Crisci, advocate and Founder of Fertile Action, and Jennifer Rockman, ovarian cancer survivor.

The framework of their session revolved around all the different routes to parenthood available to young cancer survivors, including banking eggs, embryos, ovarian tissue, and semen; using a gestational carrier; and pursuing adoption. Dr. Kondapalli stated that the overwhelming theme that evolved from the sessions was the lack of information presented to newly diagnosed cancer patients regarding the potential impact on their fertility. Attendees were eager to learn about the different tests available to gauge fertility, such as ovarian reserve testing for women and semen analysis for men. They also wanted to learn more about their fertility options following cancer treatment and, specifically, how their treatment may have impacted their fertility. Participants left armed with information and resources, and even Dr. Kondapalli’s personal email address, should they need her clinical expertise at any point in their fertility journey.

To learn more about your fertility options, visit SaveMyFertility.org, or contact us at 1.866.708.FERT (3378).

Did you know that this week is National Infertility Awareness Week (NIAW)? NIAW is a movement that began in 1989 to raise awareness about the disease of infertility and encourage the public to understand their reproductive health. RESOLVE: The National Infertility Association founded this movement to:

• Ensure that people trying to conceive know the guidelines for seeing a specialist when they are trying to conceive.
• Enhance public understanding that infertility is a disease that needs and deserves attention.
• Educate legislators about the disease of infertility and how it impacts people in their state.

Infertility is a disease of the reproductive system that impairs the body’s ability to perform this basic function.  Pediatric and young adult cancer patients undergoing treatment are at high risk of having impaired fertility as a result of their disease or its treatment. Reproductive medicine provides a number of sophisticated options for assisted reproductive technologies (ART) such as egg, embryo, and sperm banking, ovarian tissue cryopreservation, and third party reproduction options (egg, sperm, and embryo donation, and gestational carrier/surrogacy) which help many people achieve parenthood.

Studies show that fertility preservation can bring hope to a patient undergoing cancer treatment, that there will be options and renewed life beyond their cancer diagnosis. Studies also indicate that individuals who do not receive fertility preservation information or treatment options following a cancer diagnosis are more likely to experience profound emotional consequences once they began to navigate family planning. While adoption and third party options make parenting possible, it does not always eradicate the feeling of loss one can suffer as a result of impaired fertility.

In support of NIAW, we ask you to help us and join the movement to increase and protect access to all family building options, and to help make fertility preservation counseling part of comprehensive cancer care in pediatric and young adult patients. For more information about your fertility options, please visit www.SaveMyFertility.org.

Several of our recent blog posts have discussed fertility preservation in females, so we’d like to take a little time to shine a light on some interesting oncofertility research focused on males. The Oncofertility Consortium is committed to exploring the reproductive future of all young cancer survivors, and we have several members dedicated to advancing male fertility preservation. While oncofertility in males is relatively straightforward (sperm banking), investigators are currently researching ways to preserve fertility in pre-pubescent males in a procedure called testicular tissue cryopreservation. A chapter entitled, “Fertility Preservation in Males,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authored by Landon Trost, MD, and Robert Brannigan, MD, examines this experimental procedure.

Sperm banking is not an option for prepubertal boys who are not yet producing sperm; however, they do have stem cells in their testes that are poised to begin producing sperm. As a result, investigators are researching other ways to preserve their reproductive function, and testicular tissue cryopreservation is a technique that shows promise. According to the authors, “Although pre-pubertal germ cells do not contain mature [sperm], they do demonstrate the presence of spermatogoniual diploid stem cells, which maintain the capacity to differentiate into mature cells given the appropriate microenvironment.” In other words, the tissue houses immature sperm cells that have the ability to transform into mature, functioning sperm provided the appropriate environment. Researchers are working on protocols that would enable physicians to use the frozen/thawed testicular tissue and stem cells to produce sperm in the laboratory or by re-implanting, years later, back into the individual.

Despite the promise that testicular tissue cryopreservation shows, it’s important to note that this is still an experimental procedure limited to IRB approved research facilities, and currently there is no way to use this tissue for reproductive purposes. There have been no studies to date demonstrating that a technique has been developed to transform the frozen testicular tissue into viable sperm, in vivo or in vitro. The idea behind this procedure is that at some point, technology will evolve enough to use the cryopreserved testicular tissue in assisted reproductive technologies.

Not only are there logistical limitations with the frozen tissue, but there are also some ethical concerns too. According to the authors,  “Given the underlying malignancy in patients undergoing testicular tissue extraction, there is concern regarding the potential for reseeding the cancer when the cryopreserved tissue is reintroduced in the native host.” For this reason, and due to the technological factors, testicular tissue cryopreservation is currently very limited. To learn more about male fertility preservation options, please visit www.SaveMyFertility.org.

The month of November kicks off the sixth annual Movember fundraising campaign to raise vital awareness and funds for men’s health issues, specifically prostate and testicular cancer initiatives.  Every November, men are encouraged to grow out their moustaches for the entire month in support of men’s health. Last year, Movember raised over half a million dollars in Chicago alone and almost $300 million has been raised worldwide since 2003.

This year’s theme of Movember & Sons, reminds us how knowledge is shared and wisdom gets passed down from one generation to the next. This year Movember & Sons focuses on family and generational health — essentially, the knowledge transfer that happens from dad to son — and then, later in life, from son back to dad.

The Movember campaign goals are as follows:

Survivorship: To fund survivorship initiatives that provide information and support for men and their families affected by prostate and other male cancers that helps them make informed decisions and improves their quality of life, include information about fertility preservation.

Awareness and Education: To significantly increase the understanding of the health risk that men face and encourage men to act on that knowledge.

Prostate Cancer Research: To fund catalytic research and clinical trials infrastructure that leads to significantly improved diagnostic and prognostic tests and treatments to reduce the burden of prostate cancer.

Influencing Change in Men’s Health: To fund research that helps to inform health policy and knowledge translation that accelerates improved health outcomes for men.

The funds raised are directed to programs run directly by Movember and their men’s health partners, the Prostate Cancer Foundation and LIVESTRONG Foundation. Together, the three channels work together to ensure that Movember funds are supporting a broad range of innovative, world-class programs. For more information on these programs and other Movember initiatives, please visit the following websites: Prostate Cancer Foundation, LIVESTRONG Foundation, Awareness & Education, and Global Action Plan.

So start growing out those moustaches men, and if you’d like to learn more about your reproductive health after a cancer diagnosis, please visit out SaveMyFertility.org or visit our Virtual Patient Navigator.

Infertility has been associated with psychological distress and can have a negative impact on quality of life in cancer survivors.  Reproductive concerns are often sited among young cancer survivors prior to, and following cancer treatment. A number of fertility preservation (FP) options are available to preserve patients’ future reproductive ability. For men, sperm banking is a clinically established method, and a relatively straightforward procedure in comparison to FP for women, which is more complex. In a new article published in the Journal of Clinical Oncology by authors Gabriela M. Armuand, Kenny A. Rodriguez-Wallberg, Lena Wettergren, Johan Ahlgren, Gunilla Enblad, Martin Ho ̈glund, and Claudia Lampic, entitled, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors,” the authors investigate male and female cancer survivors’ perception of fertility-related information and use of FP in connection with cancer treatment during reproductive age.

The authors used a sample of 484 survivors diagnosed from 2003 to 2007 identified in population-based registry in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at the time of diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Study participants were asked to fill out a questionnaire assessing their experience with FP and knowledge of FP techniques following a cancer diagnosis.

The majority of male participants reported having received information about treatment impact on fertility (80%) and more than half of the men banked frozen sperm (54%). Among women, less than half reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women, or 2%, underwent FP.  Sex was the single most important predictor for receipt of information about FP; a man was 14 times more likely to report having received such information than a woman. The results of this study are even more interesting when you take into account that in Sweden, infertility treatment is part of the tax-funded health care system; therefore, FP is available to all patients with cancer. Nonetheless, this did not seem to have an impact on female access to FP information and services.

The results of this study suggest significant sex differences when conveying fertility-related information and the use of FP. As a result, the authors argue that there is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decision-making regarding their treatment and future reproductive options. In an effort to meet the needs of young female cancer patients, the Oncofertility Consortium developed educational materials to help young women and their families better understand their fertility preservation options. Read, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors.”

At the Oncofertility Consortium, we stress the importance of collaboration among clinicians, basic scientists, and the humanities in an effort to ensure that cancer patients have fertility options after treatment. This is no small feat, but the emerging field of oncofertility is constantly evolving as new fertility preservation techniques are developed, existing ones are improved and the impact of gonadotoxic cancer treatment is examined. In a new article written by oncofertility researchers, Katherine E. Dillon and Clarisa R. Gracia, and edited by Jacqueline Jeruss, in the journal, Current Treatments in Oncology, entitled, “Pediatric and Young Adult Patients and Oncofertility,” the authors explore the various fertility preservation options available to pediatric and young adult patients and argue that a team approach is needed between oncologists and reproductive endocrinologists in order to provide the best outcomes for young patients.

Among the fertility preservation techniques currently available, the authors discuss options available for both males and females including lesser known options for females such as oophoropexy (relocating the ovaries out of the radiation field to protect them from exposure during treatment), and hormone replacement therapy for pre-pubertal cancer patients. Options available for males are sperm banking and testicular tissue banking for pre-pubescent males. Testicular tissue banking is still experimental and requires further scientific development.

Increasing numbers of pediatric and young adult cancer patients are surviving well into their reproductive years, therefore the authors state that clinicians need to be informed about the impact of cancer therapies on both males and females, as well as the available fertility preservation techniques for this demographic. They also maintain that it is imperative for clinicians to understand the most recent advances in oncofertility to better understand the future direction of the field and potential fertility preservation techniques that will one day be practiced in a clinical setting. To read, “Pediatric and Young Adult Patients and Oncofertility,” please click here.

A recent study was just published by oncofertility researchers examining the effect of establishing a formal fertility preservation program on the number of male cancer patents who received a fertility preservation consultation and pursued sperm cryopreservation. Established sperm cryopreservation has been available at Northwestern University since 1999 but it wasn’t until 2005 that an oncofertility program was established.

The paper, “Improved Fertility Preservation Care for Male Patients With Cancer After Establishment of Formalized Oncofertility Program,” describes the Northwestern program that consists of a variety of tools to increase fertility care for young cancer patients. Seminars and grand rounds educate physicians and nurses in oncology and reproductive endocrinology. Provider knowledge gaps, logistical constraints, and economics concerns, which have previously been identified as barriers to fertility preservation, were addressed in the trainings. Patient materials in English and Spanish, as well as a hotline also provide information to the non-medical community. The hospital’s electronic medical record system was modified to ask physicians of new oncology patients whether fertility preservation was discussed. Interested patients could then be referred to the fertility preservation patient navigator and a subsequent consultation.

For male cancer patients, such as those identified in the study, a fertility preservation consultation occurs with a urology specialist who discusses the potential reproductive and sexual health impacts of cancer treatment. Options to preserve fertility, which include sperm cryopreservation, are also discussed. The patient navigator at Northwestern shepherds each patient throughout the fertility preservation process and integrates it within the oncology treatment.

In the study, Sheth, Sharma, Helfand, Cashy, Smith, Hedges, Köhler, Woodruff, and Brannigan reviewed cases of male cancer patients age 18-55. The number of fertility preservation consultations and procedures were identified between 2002 and 2012. Though the number of patients remained relatively constant across this time period, an average of more 22 patients per year were offered consultations prior to the implementation of the program compared with more than 64 per year afterwards. In addition, of male cancer patients age 18-40, the percentage offered a consultation increased from 23.4% to 43.3% during that time. Furthermore, the percentage of consulted patients who chose to undergo sperm cryopreservation increased from 77.9% to 90% after implementation of the program.

Prior to the onset of the program, male patients with leukemia/lymphoma or testicular cancer were most likely to bank sperm and the number of these patients increased between 2002 and 2010. However, patients with other types of cancers, such as those with brain, gastrointestinal, head and neck, prostate, and bone or soft tissue malignancies, were most increased after the oncofertility program began at Northwestern, indicating that the program successfully educated new oncology professionals to discuss fertility in the cancer context.

Though significant headway has been made in the past decade, the authors of the paper in the Journal of Urology, stress the need for continued efforts to further increase the numbers of young cancer patients that receive a fertility consultation. Read the entire article.

This March, the United States Supreme Court will hear oral arguments about its first case on oncofertility. The case involves the Capato couple, a husband and wife from Florida who dealt with Mr. Capato’s diagnosis of esophageal cancer.  Prior to beginning cancer treatment, the Capato’s learned that Mr. Capato’s chemotherapy could destroy his fertility and, as such, choose to preserve his fertility by banking sperm.  Despite the cancer treatment, Mr. Capato passed away from his disease. Mrs. Capato decided to continue their wishes as a couple and use Mr. Capato’s banked sperm to have their children through in vitro fertilization.

In 2003, 18 months after the death of her husband, Mrs. Capato gave birth to twins. As a widowed mother of twins, Mrs. Capato applied for Social Security survivors’ benefits. According to the Social Security Administration website, these benefits are intended to help the family of a worker who passes away and that 98 of every 100 children are eligible for benefits if a working parent dies.

However, Mrs. Capato’s application for her children to receive survivors’ benefits was denied. According to the Social Security Administration, the Capato twins are not actually Mr. Capato’s children since they were conceived after his death. This first decision was based, in part, on a Florida law that states that a child cannot receive inheritance from a parent who was dead at the time of conception. Mrs. Capato appealed this decision twice and was denied both times. Finally, the Third Circuit decided on the Capato twins’ behalf stating that the term “child” refers to the biological offspring of Mr. Capato, which they are.

The case that is going to the Supreme Court is called Astrue v. Capato as the Social Security Administration, is commissioned by Michael J. Astrue. Social Security Administration has a policy of denying survivor benefits when a child is conceived after a parent’s death and they are asking for guidance for the court on when to decide when these children should be beneficiaries.  We look forward to hearing more about this case in the next few months and will keep our readers updated. More insights into the legal aspects of oncofertility are available from some of the researchers at the Oncofertility Consortium:

• Medical hope, legal pitfalls: Potential legal issues in the emerging field of oncofertility by Gregory Dolin, MD, JD; Dorothy E. Roberts, JD; Lina M. Rodriguez, Teresa K. Woodruff, PhD
• Domestic and International Surrogacy Laws: Implications for Cancer Survivors by Kiran Sreenivas and Lisa Campo-Engelstein, PhD

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 maya-harper@northwestern.edu

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, www.SaveMyFertility.org and www.MyOncofertility.org, 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, www.gemmedormienti.it. In the Section “Domande,” are Italian translations of the MyOncofertility.org 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!