By Cathryn Smeyers

A recent article in the Chicago Tribune entitled “New programs give hope to young cancer patients about bearing children,” discusses the field of oncofertility and how it can positively impact the lives of female cancer patients.

The article opens with the story of Jenna Benn, an Oncofertility Consortium favorite who was diagnosed with a form of lymphoma in her late twenties.  For Benn, the possibility that she could lose her fertility from life-saving cancer treatment was of great concern.  Fortunately, as Northwestern is the home base for the Oncofertility Consortium, Benn was in good hands and immediately introduced to Kristin Smith, the hospital’s Fertility Preservation Patient Navigator.  Smith outlined the primary fertility-sparing options that exist for young women facing cancer diagnosis: embryo banking, egg banking, ovarian tissue banking, or surgical procedures to remove or protect the ovaries.  Benn ultimately opted for egg banking and had her own eggs frozen before undergoing six rounds of intensive chemotherapy.

As the article goes onto discuss, though, unlike Benn, not all female cancer patients are made aware of the potential threat to their fertility and the choices available to them.  Dr. Teresa Woodruff coined the term “oncofertility” in 2006, and it is still a relatively young field.  While great strides have been made in availing patients of fertility preservation options, challenges still exist.  For example, there are many doctors who feel that it’s important to stay focused on saving a patient’s life and not necessarily her fertility.  Many women who are informed of their options are ultimately deterred by the cost of fertility preservation measures, which can run between $10,000-$15,000 and are not often covered by insurance.  Also, ethical questions arise with the question of how to handle unused embryos.

Everyday, the Oncofertility Consortium and our partners are working to overcome these hurdles.  We spread the word through our research, blogs, iphone app, and advocacy work.  After her struggle with cancer and fertility preservation, Benn is now a regular contributor to the Oncofertility Consortium and was our featured guest at last year’s gala.  Living in remission and now newly engaged, Benn runs her own cancer support group called Twist out Cancer, which “leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment.”  Make sure to check out their upcoming event Brushes with Cancer, an evening celebrating survivorship and hope through art, music and storytelling, on Wednesday April 17^th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

Fertility preservation in young cancer patients has come a long way in the last decade, as both patients and the medical community have galvanized to improve the information and reproductive technologies available surrounding oncofertility. In response to the increased likelihood of young men and women losing their fertility due to cancer and its treatment, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients.  In recent news, the American Society for Reproductive Medicine (ASRM) announced that egg freezing would no longer be considered an “experimental” fertility preservation technique, making it easier for cancer patients to receive insurance coverage if they choose egg freezing as their method of fertility preservation. These developments stemmed from substantive evidence that fertility preservation among cancer patients facing fertility impairing treatment is an ethically sound practice, and in a new article entitled, “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, the authors share a reproductive specialist’s view of oncofertility counseling that is important for the practicing oncologist to consider.

First, by discussing fertility preservation with their patients, oncology providers are allowing them to make informed decisions about their reproductive futures. To date, there is no evidence indicating that by discussing oncofertility with patients, it compels them to participate; rather, it demonstrates that they are receiving comprehensive cancer care, which includes survivorship care. In fact, according to the authors, “evidence indicates that patients with cancer who receive counseling about fertility preservation experience less long-term regret than those patients who do not receive counseling, even if the patients choose not to pursue fertility preservation.” Sharing this information with patients may also increase patient confidence in the medical community if they see that they are being treated as a whole person and not just a cancer diagnosis.

Next, an ethical concern raised surrounding oncofertility centers on the disposition of embryos and tissue, specifically as an increasing amount of biologic material is cryopreserved as a result of fertility preservation. Nonetheless, the authors argue that the burden on society will be minimal, since most cryopreserved material comes from healthy, infertile patients actively trying to conceive. They also claim that by striving for advances in fertility preservation options, fewer patients will choose to freeze embryos because they will have other options, reducing the potential ethical issues surrounding embryo ownership.

Finally, the authors address the argument that the allocation of funding and research dedicated to fertility preservation could be better utilized in other medical fields, since it affects such a small percentage of people. Gracia and Jeruss state, “although this may have been a legitimate concern in the past, the research accomplished under the auspices of fertility preservation thus far has furthered the understanding of reproductive physiology, leading to significant breakthroughs in the field of reproductive medicine.” It’s also important to note that these breakthroughs have a ripple affect and can lead to improved fertility options for healthy infertile patients, improved contraception methods, and the conservation efforts of endangered species. Read “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, to learn more about reproductive medicine and the ethical concerns surrounding oncofertility.

According to the American Cancer Society, there are now more than 13.7 million cancer survivors in the United States. That number is expected to grow to nearly 18 million by 2022. After decades of focusing on treating cancer, we now face the challenge of helping survivors achieve a good quality of life once treatment has ended. According to the U.S. Centers for Disease Control and Prevention and the National Cancer Institute, 64% of adults diagnosed with cancer today can expect to be alive in five years. For children, survival rates range between 70% and 92%, with the 10-year survival rate at 75%.

For many, a cancer diagnosis may lead to a change in a person’s priorities regarding relationships, family planning, career, or lifestyle. Survivorship issues sometimes affect other areas of life after cancer treatment. Support services can help you deal with physical, emotional and day-to-day issues such as:

• Difficulty on the job or in school
• Changes in relationships with loved ones, friends or coworkers
• Loss of self-esteem
• Concerns about body image changes
• Problems getting health or life insurance coverage
• Stressors related to financial issues

As a result of the steady increase in cancer survivors each year, survivorship aftercare is gaining ground in treatment plans and witnessed in the uptick of organizations being formed to address the various physical, emotional and psychological needs survivors face. One such organization, The Arts of Courage Project, ACP, was formed “to create an empowering opportunity for cancer survivors to express themselves artistically.” The ACP objective is simple: pass it on. As a recent breast cancer survivor, founder Jorie Gillis has a deep desire to give back to an incredibly supportive community of cancer survivors. Combining her expertise and training in art, marketing, and now cancer, Jorie is following her passions and using them with the hopes of giving back.

On March 2^nd, in Chicago, IL, the ACP is hosting an evening art event to raise awareness as well as charitable funds for cancer survivorship initiatives. The event is meant to draw anyone touched by cancer, and all who support the fight against cancer. If you are interested in helping those who are currently in the throes of dealing with a cancer diagnosis, or want to share your story/art within the survivor community, then you are encouraged to come out and celebrate! 100% of the proceeds will go to a charitable cancer foundation. ACP is actively seeking artwork created by anyone affected by cancer to showcase and auction at this event. For more information including registration, cost, venue, and how to donate your artwork, please visit The Arts of Courage Project website at www.artsofcourageproject.com.

Today marks the start of the 36^th annual APHON (Association of Pediatric Hematology/Oncology Nurses) Conference in Pittsburgh, PA. The conference is designed for pediatric and adolescent and young adult (AYA) hematology/oncology nurses and allied healthcare professionals who wish to explore ways to enhance their practice. This year’s expanded hematology offerings aim to provide an in-depth knowledge base and understanding of the principles of caring for patients with hematologic disorders. Educational sessions that focus on research, clinical management, and psychological issues are designed to provide attendees with the knowledge and support to enable them to influence pediatric and AYA hematology/oncology nursing and allied healthcare.

On Friday, Oct 5^th from 8-9am EST, Northwestern’s own, Barbara Lockart, MSN, RN, CPNP, CPON, will be presenting, “The Science and Hope of Fertility Preservation.” As the emerging field of oncofertility gains ground, we are thrilled to have a venue to discuss fertility preservation among healthcare providers that serve not only as clinicians, but often as advocates as well. It is imperative for parents and caretakers to understand that cancer treatment, including stem cell transplant, may put children and adolescents at risk for infertility. There is a growing awareness that maintaining fertility is important to families and that infertility is a concern for patients throughout the treatment continuum. Fertility preservation is a rapidly evolving field with lifelong implications for the physical, emotional, and spiritual health of patients. Barbara will examine the state of fertility preservation science, as well as guidelines for determining which patients are appropriate for intervention. She will also discuss the role of the nurse as advocate, educator, and researcher.

Overall, the conference seeks to teach the field about current trends and new information in pediatric and AYA hematology/oncology, as well as learning from shared experiences. It will be an exciting combination of speakers, posters, meetings, and preconference workshops and of course, the issues surrounding social media, technology, and therapeutic boundaries will be a hot topic for discussion. If you would like to attend this exciting conference, please visit the APHON Conference homepage for more information about registration, the agenda, and preconference workshops and education sessions being held.

Suleika Jaouad is a 24-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” appears weekly in the New York Times. Suleika chronicles her experience as a young adult with cancer and the unique challenges she faces such as infertility, psychosocial issues, and survivorship.

I first came across her blog several months ago when it came to my inbox as a “Google Alert.” Suleika had written a post about being a young cancer patient facing infertility. She wrote, “Leukemia is an emergency, and oncologists are the first responders: They are trained to beat cancer; everything else must take a back seat. It was only after I asked about fertility that the doctors told me about the available options.” Faced with the harsh reality that her cancer may leave her infertile, she chose to undergo fertility preservation.

The decision to preserve her fertility was not made in haste. Her chronicle of the decision to bank her eggs drew me in and I began to follow her blog regularly. At the time, Suleika only 22, wrote about how being diagnosed with an adult disease ( acute myeloid leukemia – a form of cancer usually reserved for the elderly) thrust her into an adult world she wasn’t quite ready to exist in yet. Still feeling like a child and reliant on her parents in so many ways (emotional, financial, etc…), she was suddenly forced to live her life “out of sequence.”

Yet, deciding to preserve her fertility wasn’t the hardest decision she had to weigh after her initial diagnosis.  Moreover, exactly which method was going to be the most effective and least disruptive to her present and future life, proved to be the most difficult decision to make. She writes, “I looked across the table at my boyfriend. We had met only eight months earlier, and here we were, considering the benefits of freezing embryos with his sperm (the option with the greater chance of success) versus freezing only my eggs. It was awkward territory.” Suleika put off the decision for as long as possible, but when pressed by her medical team, within minutes she had made the decision to bank only her eggs.

Suleika went to her appointments at the fertility clinic with her boyfriend, feeling out of place among the other women, wearing her college sweatshirt with the caption, “Class of 2010.” Obviously older than her, the other woman were nonetheless all there for the same reason – hoping to create life, one way or another.

Read more “Life Interrupted,” here.

Over the last twenty years, advances in fertility preservation techniques have made oncofertility more accessible to women diagnosed with cancer or other fertility impacting diseases. Despite this good news, the academic journal, Cancer, recently reported that between 1993 and 2007, only 4% of women between the ages of 18-40 diagnosed with cancer, sought out fertility preservation. In Cancer Today, a medical magazine issued by the American Association for Cancer Research, addresses this disparity in a new article entitled, “Fertility Preservation Catches On, But Slowly,” arguing that new cancer patients need information and referrals to reproductive specialists immediately after diagnosis to ensure they have the best possible chance of preserving their fertility if they choose to do so.

Studies show that discussing fertility preservation with a cancer patient may depend on several factors including education, socioeconomic status, sexual orientation, and whether or not the cancer patient already has children. According to Cancer Today, “college graduates [are] up to 40% more likely to be counseled than those without a bachelors degree.” Teresa K Woodruff, reproductive endocrinologist and director of the Oncofertility Consortium maintains that this disparaging information highlights the gap between getting fertility preservation counseling and taking action.  She also argues that “cancer patients need to be seen on that same day as diagnosis or within the next 24 hours,” by a reproductive specialist.

So what can we do to ensure that every young cancer patient has the same opportunity to preserve his or her fertility prior to treatment? The Oncofertility Consortium has led the way not only research, but also in advocacy, making fertility preservation a public discussion so that both clinicians and patients are aware of the potential damage cancer treatment can have on fertility. The more knowledge one has, the more likely they are to make an informed decision in that critical timeframe between diagnosis and treatment.

To read, “Fertility Preservation Catches On, But Slowly,” in Cancer Today, please click here. If you or someone you know needs information on fertility preservation, including options, techniques, clinics, cost, etc., please click on links below for more information.

• National Fertility Hotline (866.708.FERT) to speak with a Fertility Preservation Patient Navigator
• SaveMyFertility: an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment, and protecting their hormonal health after treatment.
• Fertility Preservation Patient Navigator: A website designed to help patients learn more about their options for family building.
• MyOncofertility: A patient education resource provided by the Oncofertility Consortium.

The number of Americans with a history of cancer is growing due to the aging and growth of the population, as well as improving survival rates. In response to this demographic trend, The American Cancer Society (ACS) and the National Cancer Institute (NCI) compiled a comprehensive survivorship report providing current and projected cancer prevalence estimates for the United States, information on the common effects of cancer and it’s treatment, and survivorship resources.

The ACS defines a cancer survivor as any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life. There are at least three distinct phases associated with cancer survival, including the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival. In reality though, survivorship encompasses many different scenarios including:

• Living cancer-free for the remainder of life
• Living cancer-free for many years, but experiencing one or more serious complications of treatment
• Living cancer-free for many years, but dying after a late recurrence
• Living cancer-free after the first cancer is treated, but developing a second cancer
• Living with intermittent periods of active disease requiring treatment
• Living with cancer continuously without a disease-free period

According to the NCI, an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and of that total, 10% are men and women under the age of 39. The three most common cancers among male survivors are prostate (43%), colon and rec- tum (9%), and melanoma (7%). Among female survivors, the most common cancers are breast (41%), uterine corpus (8%), and colon and rectum (8%). As of January 1, 2022, it is estimated that the population of cancer survivors will increase to almost 18 million: 8.8 million males and 9.2 million females.

Many children, adolescent and young adult cancer survivors must cope with the long-term effects of treatment, such as infertility and sexual dysfunction. For younger survivors, the loss of fertility can be life-changing, with irreversible consequences that can affect quality of life. Women under 35 are at risk for infertility and premature menopause, even when their menstrual cycle resumes. Toxic effect of chemotherapy on the ovaries increases with older age, higher doses, and longer duration of treatment. Male infertility from cancer surgery or radiation can result from anatomic changes, hormonal imbalances, or lower production and quality of sperm. Cancer patients, caregivers, and survivors must have the information and support they need to play an active role in decisions that affect treatment and quality of life.

For a list of cancer care resources, including survivorship information, please visit our Patients page. To read  Cancer Treatment & Survivorship Facts & Figures, please click here.

The adolescent and young adult (AYA) cancer survivor network is  slowly starting to build steam as more and more people begin to recognize the special needs of this demographic. AYA’s not only face a cancer diagnosis at a young age, but as a result, they may also struggle with late-effects of their treatment including infertility, heart problems, and psychological trauma. Stemming from the need to address these concerns, AYA groups have started to pop up all over the country providing a supportive gathering space, whether online or in person, for young cancer survivors to meet other people who may share a similar experience.

Arising from the need to connect young cancer survivors with one another, nature, and themselves, sprang True North Treks (TNT). We wrote about TNT in an earlier blog, but for those of you who don’t know, I’ll give you a little recap of what this great organization is all about.  TNT is an organization that supports AYA’s by taking them on short term treks in nature that focus on learning mindful awareness practices, connection to other survivors, and the beauty and balance of the great outdoors. TNT believes that this is “good medicine, especially for those who find themselves in transition after cancer treatment.”

One of the great things about TNT is that they are a group totally equipped to deal with the needs of young cancer survivors, specifically they’re medical needs. Some participants on past treks have only been out of treatment for a short time and still have to deal with IV’s, medication, and fatigue. The trek leaders have the experience and proper equipment to ensure that almost any survivor can participate on one of their treks. These are not expeditions designed to push survivors to their physical limits, but rather they are excursions for the soul and the spirit.

An upcoming event that True North Treks is co-sponsoring for AYA’s is the 1^st Annual Chicago SUP YACS Classic (Stand-Up Paddleboard and race, ride, and glide for Young Adult Cancer Survivors). This event is taking place on July 29^th in Chicago, IL, at Montrose Beach and is open to the public. If like me, you have never been on a paddleboard in your life, but think it sounds cool, there is a stand-up paddleboard clinic (a SUP 101 if you will) that newbies can take part in near the race start. There is a small registration fee, which will go toward programming for young adults with cancer. There is nothing like Chicago in the summer (told from a true Chicagoan) and no better feeling than knowing you are doing something that will benefit so many fantastic young survivors!

To register for this event, please visit the 1^st Annual Chicago SUP YACS Classic webpage. To learn more about True North Treks, please visit our Patient Resources webpage.

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.”

This week is the 10^th Annual National Young Adult Cancer Awareness Week, beginning April 2^nd and ending on April 8^th. In April 2003, National Young Adult Cancer Awareness Week was launched, and organizations and clinical institutions throughout North America began partnering to raise awareness about the unique needs of this age group. The young adult cancer population is defined as anyone who has been diagnosed with cancer between the ages of 15 to 39, and according to the National Cancer Institute (NCI), more than 70,000 young adults are diagnosed with cancer each year.

Young adults with cancer face unique concerns such as fertility, body image, cognitive function, long-term effects, education, insurance and employment. They also deal with distinct issues based on their age group, still reaching for their goals and dreams, which many older cancer patients have already achieved. For many young cancer patients, they envision themselves with a biological family at some point in their lives so fertility is a top concern for the young adult population.

In 2003, when National Young Adult Cancer Awareness Week was founded, there were few groups or organizations advocating for young adults with cancer. Today though, there is a large movement on behalf of this age group providing a number of services, programs, and networking opportunities including the Oncofertility Consortium, Stupid Cancer, and Imerman Angels among so many others.  There is something for everyone!

For more information on community resources for young adults with cancer, please visit the Patients page of our website. You will find support groups and organizations that cater to the specific needs of young adults diagnosed with cancer. In the meantime, help us bring awareness to the young adult cancer community by spreading the word about National Young Adult Cancer Awareness Week!