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A new journal article by Oncofertility Consortium members explores the fertility and parenthood concerns of adolescent and young adult (AYA) female cancer survivors and the various components that lead to their reproductive decisions. The qualitative study that begot this article aimed to provide additional insight into how AYA survivors make fertility and parenthood decisions and what barriers they face along they way. “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors,” by oncofertility researchers Jessica R. Gorman, Samantha Baily, John P Pierce and Irene Su in the Journal of Cancer Survivorship, presents in depth information on an issue that has not been thoroughly explored in existing scholarship.

Six themes emerged from the analysis of the data gathered from study participants: (1) A hopeful but worried approach to fertility and parenthood, (2) Frustration with a lack of choice or control over fertility, (3) Young survivors want information about their fertility, (4) Young survivors want better continuity of care in survivorship, (5) Cancer diagnosis and related fertility problems introduce relationship challenges, and (6) Decisions about parenthood are complicated.[1]

The overriding theme of this study and something the Oncofertility Consortium is working tirelessly to improve, is the importance of collaborative, comprehensive medical care for young cancer patients. Study participants described feeling disappointed with the care they received as patients and the lack of coordination among providers treating them.  Specifically for patients experiencing long-term side effects such as the loss of fertility, much of the burden of managing their care fell onto them as their providers focused on their immediate need for treatment and did not discuss at length or in some cases, at all, potential long term consequences of treatment. These findings are consistent with previous research suggesting that there is an unmet need for fertility preservation counseling at the time of diagnosis.

Understanding the concerns of young cancer survivors is the first step toward developing an effective and appropriate treatment plan that is consistent with the needs of the AYA population. As we now know, the AYA cancer community presents its own set of unique challenges when devising a comprehensive treatment regime. Collaboration among health care providers is an important step toward improving the quality of care from cancer patient to cancer survivor. Click here to read, “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors.”

It is only January and already the Oncofertility Saturday Academies (OSA) are off to a busy start. Last weekend, Mary Zelinski, PhD, who heads one of the Oncofertility Consortium‘s research projects, launched this year’s Oregon academy at the Oregon Primate Research Center (ONPRC). A group of 10 high school students comprised of eight girls and two boys got an overview of oncofertility and a tour of the research center. The students come from different schools, two of them driving up to an hour to attend the Saturday programs.

In addition to a tour of the primate center, the OSA students performed hematoxylin and eosin (H&E) staining on sectioned ovaries. This coming weekend, they will have the opportunity to view these sections under a microscope. H&E staining is widely used in biological research as it stains the cell nucleus blue and other structures a pink or red color.  This year, the Oregon OSA will meet in the newly completed Science Learning Lab at the ONPRC. The educational research lab, supported by a generous grant from a private donor, can accommodate up to 24 students and will greatly expand the opportunities available for visitors to interact with Primate Center researchers. An open house will be held tomorrow, Friday, January 27^th and will provide the OSA students a place to learn about oncofertility and basic science research over the next few weeks.

Simultaneously, tomorrow is the launch of the Chicago OSA program with juniors and seniors in high school from five schools in the Chicagoland area. In the next few weeks we will, continue to share more about both of these exceptional programs, and the OSA programs at the University of Pennsylvania and University of California at San Diego.

In case you haven’t heard about the Cancer Smashers, you must continue reading and get to know this fantastic group of young people banning together to raise money to eradicate cancer. Let me begin by telling you who they are and what they’re all about. Then we’ll get into all the cool things that they do to raise money and awareness for cancer research.

For starters, Cancer Smashers is a unique group of kids ranging in age from 10 years old to 19 years old who joined forces in 2011 to raise money and awareness for cancer research.  Their goal is to help promote the H Foundation, an all-volunteer group founded by businesspeople in the western suburbs of Chicago that decided they could make a difference in the fight against cancer, and the Goombay Bash, an annual cancer fundraiser held in downtown Chicago. Money raised by the Cancer Smashers and the H Foundation goes directly to cancer research and funds work being done at Northwestern University’s Robert H. Lurie Comprehensive Cancer Center.

The Cancer Smashers help out by doing a variety of activities from assisting at events to building floats for parades or simply by being a support system to someone who is diagnosed with cancer.  Most recently, the Cancer Smashers came to the Woodruff Lab at Northwestern University to spend one-day learning about scientific research through lab exercises, such as extracting DNA from strawberries and also making alginate beads. Founder and Chair of Cancer Smashers, Beth Tischler, thought it was important for the kids to see exactly where the money they raise is going to, by visiting the Woodruff Lab and participating in some of the work the researchers do. Nadia Reynolds and Cathryn Smeyers, members of the Woodruff Lab and organizers of the Oncofertility Saturday Academy (OSA), participated in the event explaining, “The kids were really enthusiastic and excited to be a part of the research that’s being done here at Northwestern.”

What’s up next for the Cancer Smashers? For the week of January 23-27, the school’s Student Council will be selling paper “fists” for only $1.00. The buyer of the fist will personalize it by writing the name of a person who has been affected by cancer that they would like to honor. The fist will then be displayed on the walls of the school of their choice. The school district that sells the most fists is the winner!! To learn more about the Cancer Smashers and watch some videos about them, go to www.cancersmashers.com. You can also see them in action this Friday on CBS 2 news. Make sure you check it out!

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. Evidently the 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