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. 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

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!

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!

Recently I dipped my foot into the real estate market and began looking for a place we could call home. I followed all the steps that most anyone else would: I hooked up with a real estate agent (*Todd), I began scouring all the listings in my price range and after a few visits to “the house”  I sent a text to Todd and said, “I’m ready to make an offer.” Within an hour, he was at my door and ready to draw up a contract.

We sat down at the table and began to fill out the contract making idle chit chat along the way. He asked me what I did for a living and it dawned on me that over all this time, I had never shared my occupation with him.  It seemed kind of strange that this was the first time it had ever come up. “I work at the Oncofertility Consortium at Northwestern University.” He gave me sort of a strange, but knowing look and I told him that oncofertility was essentially fertility preservation for young cancer patients.  Well little did I know that we had more than real estate to talk about…

Without going into the play by play of our entire conversation, I’ll give you the abbreviated version: Todd was diagnosed with testicular cancer at the age of 18, he underwent fertility preservation before he began treatment for his cancer, and now in his mid 30s, he and his wife have two children through ART with the help of our own Dr. Kazer at Northwestern Memorial Hospital.  Small world!

Todd shared with me the awkward moment when his oncologist at Elmhurst Hospital discussed fertility preservation with him shortly after diagnosis while he sat there next to his mother. “I would have said yes to anything she asked just as long as she stopped discussing this with me in front of my mother!”  Ultimately though, at 18 years of age, Todd made the decision on his own (albeit out of a sense of urgency to quickly move on to the next topic) to bank sperm and preserve his future fertility.

Luckily for Todd, he had known his wife since his cancer diagnosis so she knew right off the bat what it would take for them to have children someday, and she was onboard.  Fast forward 15 + years later and Todd has a three year old and a one year old that he never could have imagined at 18 would be so intrinsic in his life and in his marriage.  “I’m so glad I did that, that someone talked to me about it and gave me options because you’re not thinking about it in that moment.” Maybe Todd wasn’t, but thankfully for him, someone else was.

It’s not uncommon for people to gift others with money on a birthday, or a graduation, at a wedding, etc.., but what about when people really need it? What about when people are in times of personal crisis?  Statistics show that 60% of all bankruptcies are a result of medical costs with most people unable to pay for emergency medical care even with the help of insurance. GiveForward, a fundraising website, was created to help individuals cope with a medical emergency with the financial and emotional support of family and friends.

GiveForward is a fundraising website which allows it’s users to create secure, fundraising webpages to raise money for emergency situations. The majority of fundraising pages are created to cover medical costs with 60% of beneficiaries fighting cancer. According to Ariana Vargas, Development Associate with GiveForward, the organization seeks to empower the friends and family of a loved one going through an illness to provide both emotional and financial support through a fundraising webpage. “It can be hard to know what to do or say when a loved one faces a medical emergency. GiveForward wants to help answer the question, ‘what can I do?’”

GiveForward provides support in addition to the fundraising tool available on the website to make the financial impact for the beneficiary more effective. Personal fundraising coaches are assigned to each individual in order to make the process as easy as possible considering all the stress the beneficiary is already under. Fundraising coaches help beneficiaries in a number of ways including, providing them with email templates to send out to family and friends when asking for donations as well as checking up with them throughout the process to give them tips and guidance for reaching their fundraising goals.

Several cancer patients have used GiveForward to raise money for fertility preservation procedures and Ariana is one of the members at GiveForward who helps them raise the funds they need in the short timeframe they have. She states that many cancer patients needing fertility preservation have discussed this with close family and friends so asking a family member to kick off the fundraiser with a substantial amount, really can set the tone for high donations. Like anything else though, “what you put into it is what you’ll get out of it,” so if you spend the time to personalize your fundraiser to those you are asking to contribute, you’re more likely to reach your goal.

This Sunday, August 7^th, you can find the GiveForward fundraising team at the Susan G. Komen Breast Cancer Walk finish line at Soldier Field in Chicago, IL. They’ll be wearing gray t-shirts with a pink elephant encouraging people to start talking about the elephant in the room and erase the stigma behind asking for help. For more information or to see examples of fundraisers, including those for fertility preservation procedures, please visit www.GiveForward.com.

Planning a family post-cancer can be a complicated process if a patient’s fertility was compromised during their cancer treatment. Depending on a cancer survivor’s prior treatment regime and subsequent fertility options, a number of family planning options may be available to them.  I spoke with Angela Lawson, PhD, a Psychologist at Northwestern Memorial Hospital in the department of Reproductive Endocrinology to learn more about what reproductive options are available to cancer patients who have been left infertile as a result of their cancer or cancer treatment.

One option for women who have banked eggs prior to cancer treatment or whose ovaries are still intact, but do not have a functioning uterus, is to use a gestational carrier. A gestational carrier or surrogate is implanted with an embryo, to which she may or may not have a genetic relationship with, and then carries the fetus to term. Once the baby is born, he/she is then legally placed with the intended parents where they then sign their names on his/her birth certificate.

Individuals can either go through an agency to find a gestational carrier or they can choose someone they know, possibly a friend or family member. Going through an agency can cost upwards of $100,000 with costs to the carrier, the agency, insurance and IVF to stimulate egg production. Going with someone you know is less costly and often makes people more comfortable knowing they have a personal relationship with the carrier that precedes the surrogacy. Personal relationships can lead to more emotional implications – the surrogate should feel comfortable giving the child to the intended parents knowing they will remain in the periphery of his/her life. Check out our blog, Delivering Hope, to learn more about one family’s incredible experience with surrogacy.

An option available to women who do not have the use of their own eggs, but can carry a fetus, is egg donation, whereby the cancer survivor follows a similar selection process as they would if they used a gestational carrier. Often, the medical community prefers the recipient use an anonymous donor rather than use donor eggs from someone they have a personal relationship with. This prevents complications that can arise in the event that the egg donor experiences any complications later in life which may impact her fertility before she has the opportunity to parent a child. If using an agency, egg donation is currently entirely anonymous.

All potential gestational carriers and egg donors go through a rigorous medical and psychological screening to ensure that they are being honest about themselves, to ensure they are stable and that they are not at risk for emotional vulnerability which can pose problems once the child is born. According to Dr. Lawson, about 50-75% of surrogacy and egg donor arrangements make it through the screening and move forward with the process.

If egg donation and surrogacy are off the table, adoption is always a great option too.  Having a history of cancer can make the process a little more challenging as not all agencies will adopt to cancer survivors. Sometimes either the agency or the birth parents are concerned about cancer recurrence and the subsequent repercussions to the adoptive child. Bearing this in mind, the Oncofertility Consortium compiled a list of cancer-friendly adoption agencies for survivors interested in navigating this option.

For more information on your reproductive options post-cancer, please contact our Fertility Preservation Patient Navigator, Kristin Smith, to learn more about resources in your area.

In March, we blogged about a survivorship event scheduled for April 7^th 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 23^rd 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!