Northwestern Designated a Young Adult Oncology Center of Excellence

Screen Shot 2013-11-15 at 8.58.27 AMMore than 72,000 adolescents and young adults (AYA) between 15 and 39 are diagnosed with cancer each year in the U.S. While survival rates for pediatric and older cancer patients have increased over the past two decades, AYA survival rates have seen little or no improvement. Fortunately, clinical care can help to improve these rates. The Robert H. Lurie Comprehensive Cancer Center at Northwestern was just designated a Center of Excellence, indicating its superior care for AYA oncology patients .

A variety of factors may contribute to poorer outcomes in these patients. These include limited or delayed access to care which may be caused by a lack of health insurance, among other factors. Once young adults do see a practitioner, it often takes health care providers a longer time to diagnose AYAs than patients of other ages. In addition, there is inconsistency in the quality of cancer treatment, follow-up care, and psychosocial and support services for AYAs. Finally, adolescents and young adults have historically participated in clinical trials less than pediatric and older cancer patients, which may also prevent an understanding of the best medicine to treat this unique population.

To address these disparities in cancer treatment, AYA oncology leaders need to ensure that AYA patients are provided with a core group of care and information, including fertility counseling, health insurance and financial counseling, clinical trail education and facilitation, psychosocial support, and assistance to surveillance and survivorship.  The Health Care Right Initiative, which addresses the critical issues patients and their physicians face when dealing with a health crisis, has launched the Change it Back Centers of Excellence Program to facilitate the expansion of needed services to the AYA cancer population and increasing awareness about available services to patients and their families.

The Robert H. Lurie Comprehensive Cancer Center at Northwestern received its designation last week at the annual conference of Critical Mass: The Young Adult Cancer Alliance. It is only one of two centers with this important recognition. The Knight Cancer Institute at Oregon Health Sciences University is the only other center with this honor. Together these two institutions are transforming cancer care for young patients to provide them with increased survival and quality-of-life throughout survivorship.

Read about the fertility preservation program at Northwestern.

Sexual Health, Fertility, and Intimacy in Adolescent Cancer Patients

Adolescent and young adult cancer patients face unique social, physical, and emotional experiences during diagnosis and treatment that may not occur in younger or older individuals. A recent chapter in the book, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines, highlights some of these complexities, which were identified from group interviews of young adult survivors of childhood cancer. The authors, Karrie Ann Snyder and Alexandra Tate, discuss that these female cancer survivors deal with some issues that have not previously been identified in adult populations.

The chapter, Cancer-Related Infertility and Young Women: Strategies for Discussing Fertility Preservation, describes the themes that emerged from group interviews of female cancer survivors who were between 14 and 20 at the time of diagnosis. At the time of the focus groups, these women ranged from 25 to 35 and were able to provide perspectives about their treatment at the time of diagnosis and as survivors. During treatment, many of the respondents were concerned with surviving their cancer, appearance, and social issues such as friendships, relationships, and school. While some of the young women do remember hearing about the potential fertility impacts of cancer treatment, others did not. In addition the women who did hear about fertility felt that the information was vague and did not include specific information about potential fertility preservation options.

Snyder and Tate also identify that there has been little research on the consultations that occur between healthcare providers and young cancer patients regarding sexual health and intimacy. Given that cancer survivors may erroneously believe they are unable to have children, these conversations, especially to teens, are integral. Most of the women interviewed did not recall any discussions with healthcare providers and the discussions that were initiated tended to focus purely on the need to prevent pregnancy and did not discuss sexual needs, building romantic relationships, feeling desirable, or other aspects of intimacy that are often important to young people.

In addition to asking survivors about their experiences, the focus groups also investigated strategies for broaching fertility preservation with newly diagnosed patients. Healthcare providers, such as Fertility Preservation Patient Navigators, can provide support for fertility preservation patients by discussing options, liaising with the oncology team, and assisting with billing and insurance issues. Snyder and Tate call for an increased dialogue between providers and adolescent patients, which will empowers young women to become an active part of their treatment plan and their sexual health as cancer survivors. To read more about the communication needs in oncofertility, read this chapter or others in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

Oncofertility: Education and the Role of Decision-Making Tools

978-1-4614-8234-5 (1)Education materials, whether in print or web-based, have a large role in helping patients feel confident in their medical decision-making.  Continuing with our overview of Oncofertility Communication: Sharing Information and Building Relationships across DisciplinesChapter 3 focuses on the importance of education, and the role of decision-making tools, within the Oncofertility community.  The authors, Dr. Gwendolyn P. Quinn, Dr. Susan T. Vadaparampil, Ivana Sehovic, MPH, and Dr. Marla L. Clayman outline that the majority of adolescent young adult patients choose not to take steps to preserve fertility but overwhelmingly appreciate the discussion about potential fertility issues.  But how does a cancer patient make the decision of whether or not to pursue fertility preservation?  Chapter 3, Patient and Family Tools to Aid in Education and Decision-Making About Oncofertility, dives into the three components of decision-making, (1) risk appraisal (2) information integration and (3) long-term considerations.

Risk appraisal includes not only physical risks such as the effect of treatment delay on cancer outcomes and the risks associated with the fertility preservation procedures themselves, but also the psychological risks.  How will the patient feel if she is unable to have biological children and did not take steps to preserve her fertility?  Risk appraisal often goes hand-in-hand with the second component of decision making; information integration.  This involves the patient processing information about fertility preservation options, medical procedures, associated costs, as well as religious, ethical or moral concerns about these options.  The third component, long-term considerations,  relates to retrieving the stored sperm, embryos, oocytes or tissue.  How will the patient feel about using artificial reproductive technology to achieve a pregnancy?  How will their partner feel about having a child with donor sperm or eggs?

Patients facing such complex fertility preservation decisions can benefit from the use of decision aids.  The International Patient Decision Aids Standards (IPDAS) criteria for what constitutes a patient decision aid are quite specific .  The aids must 1) provide facts about the patient’s condition, options and features, 2) help people clarify their values (the features that matter most to them), and 3) help people share their value with their healthcare practitioner and others.

Chapter 3 provides examples of quality decision-making tools, ranging from Oncofertility Screen shot 2013-11-08 at 2.49.43 PMbooklets to websites such  These represent decision-making tools that were developed with multidisciplinary teams and with a scientific approach.  While these are, in no way, a replacement for a discussion with a medical professional, decision-making tools can offer patients and their families peace of mind about their choices.

Take the time to review  Chapter 3 of Oncofertility Communication and share with your colleagues.  If you have decision-making tools in your clinic or office, consider reviewing them based on the criteria outlined by IPDAS and see if they need to be edited or clarified for patients.  And please continue to explore the Oncofertility Consortium website for available brochures and information for clinicians and patients alike.

Communicating Across Diverse and Differently Literate Audiences

Screen shot 2013-10-30 at 4.09.44 PMWe can all remember a time when we have received medical information from our doctor and have walked away with little or no comprehension of what was discussed.  The second chapter in Oncofertility Communication: Sharing Information and Building Relationships Across Disciplines is entitled Communicating Across Diverse and Differently Literate Audiences and the authors, Drs. Jennifer Mersereau and Anna R. Brandon, address the challenges faced by clinicians and patients when discussing complicated medical issues.

Language barriers in medicine is an ongoing challenge as medical information is typically delivered in English while the US Census Bureau indicates that approximately 21% of the population speaks a language other than English at home.  While the language barrier seems simple to overcome, adapting information in a way that is sensitive to language and cultural differences can be very expensive and resource-intensive.  Fertility preservation is such a complex field, with overlap between medicine, embryology and statistics that much is literally ‘lost in  translation’ when communicating information to non-English speakers.  While waiting for access to adapted fertility preservation documents and websites geared towards different languages and cultures, clinicians do the best they can with the information available to them while remaining sensitive to unique cultural beliefs about cancer and treatment choices.

One way for clinicians to assist their patients in understanding information is to provide educational materials for review at home.  Educational materials geared towards lower level literacy are paramount in successful retention of information; especially in institutions that do not have a dedicated fertility preservation patient navigator to help the patient and family through their journey.  In addition to hard copy documents that clinicians will physically hand to the patient, Chapter 2 outlines methods for improving online access to similar educational materials by suggesting that websites ‘layer content’ which increases usability of the sites by allowing users at various literacy levels to utilize the site in a way and at a pace that is appropriate.

These are just a handful of examples of the information available in this chapter.  The further you dive into Oncofertility Communication, the more you will understand the complexity of the issues at hand.  While Chapter 2 specifically outlines the communication challenges faced by patients and clinicians alike, it also offers suggestions and recommendations for addressing these issues and advancing the field.  Please take the time to review Oncofertility Communication: Sharing Information and Building Relationships Across Disciplines and discuss with your colleagues.  The Oncofertility Consortium is always available to answer questions at the FERTline (866)708-3378 or

Announcing new Book on Oncofertility Communication: Sharing Information and Building Relationships across Disciplines

978-1-4614-8234-5 (1)Since the initiation of the “war on cancer” with the National Cancer Act in 1971, cancer survivorship has increased dramatically. As such survivors, especially young ones, frequently live many decades beyond their initial cancer diagnosis. With the escalating numbers of cancer survivors, comes the need to provide cancer treatment in a way that ensures a healthy and hopeful future. Since 2007, the Oncofertility Consortium has aimed to do that by exploring and expanding the reproductive future of survivors through research, clinical care, and facilitating the collaboration required to ensure that patients receive multi-disciplinary care in a time sensitive manner. To support that mission, the Oncofertility Consortium has just published the fourth book produced by the group, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines. The book, published by Springer, describes the corridors of collaboration between disciplines that are needed to bridge fields that are not traditionally used to talking with each other – e.g. oncologists, reproductive scientists, and others. The book also provides communication strategies to ensure that each discovery in our field can be broadly disseminated.

Over the next few weeks, we hope to give you a glimpse within the book’s chapters, which provide examples and information about communicating to patients and their families, and professionals, stakeholders, and the public.

The first chapter in the book, “How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience,” discusses the results of more than 60 interviews with breast cancer survivors. In addition to asking whether women remember having a discussion with a healthcare provider during their cancer treatment, the authors Karrie Ann Snyder and William Pearse, identify how the discussion occurred, the quality of that discussion, and the properties that appear to affect such conversations. The authors identify that physician (usually an oncologist) interest and knowledge, existing network with fertility specialists facilitated patient-provider discussions. In addition, patient knowledge and agency in their healthcare decision-making also had an effect on the discussions. Interestingly, differences in perceived social status – such as education, race/ethnicity, and socioeconomic position – may also affect the presence and quality of fertility preservation discussions during the cancer treatment process.

As important as the properties are that do affect discussions, are the variables that seem to have no effect. Unexpectedly, Snyder and Pearse identify that patient age and the patients’ perception of the relationship with her physician did not seem to impact the discussions. The information identified by this study, is critical to raising awareness of the need to improve communication between clinicians and patients. Read the  chapter “How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience,” and other chapters in Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and disseminate them within your community.

The Stupid Cancer Show: Perspectives on Life after Cancer

Screen shot 2013-10-15 at 1.53.47 PMHere at the Oncofertility Consortium, we’re huge fans – both personally and professionally – of Matthew Zachary, the force behind Stupid Cancer; the nation’s largest support community of young adult survivors of cancer.  Created in 2004 (first as Steps for Living, then transitioning into I’m Too Young For This! Cancer Foundation, and now Stupid Cancer), it has grown into a powerhouse resource for young cancer survivors; giving them a platform for their issues, creating a community of young adult cancer patients and survivors, and putting them in the national spotlight.

One of Stupid Cancer‘s wide-reaching programs, is The Stupid Cancer Show; an award-winning international talk show that gives a voice to millions of children, teens, and adults affected by cancer.  Their September 30, 2013 show invited listeners to learn more about Adult Survivors of Childhood Cancer.  I don’t want to give too much away – because the show is definitely worth listening to – but you will meet Michelle Whitehead-Hastings, a young wife and mother currently battling stage-4 colon cancer.  She discusses the road to her diagnosis, treatment, remission, and recurrence and how she communicates with her young children about her cancer.  Up next, Colleen Cira, a survivor of pediatric cancer, discusses long-term effects of treatment, including fertility issues, and outlines her experience with programs offered at Northwestern.  From there, you will be given insight into the clinical side of fertility preservation and cancer survivorship from Northwestern’s Fertility Preservation Patient Navigator, Kristin Smith, and Clinical Nurse Specialist, Karen Kinahan, RN, from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University‘s comprehensive follow-up STAR-Program for adult survivors of childhood cancer.  Both women are instrumental in assisting our patients through the cancer continuum.

The unique stories and perspectives shared during The Stupid Cancer Show allows listeners to learn about the challenges faced by patients diagnosed with cancer, those who have transitioned into survivorship, and the clinicians and hospital staff that are with them at each step.  Click here to listen to The Stupid Cancer Show highlighting the Oncofertility Consortium‘s own Kristin Smith and Karen Kinahan, RN.

After listening to The Stupid Cancer Show, I invite you to view Virtual Grand Rounds by Karen Kinahan, RN titled Adult Survivors of Childhood Cancer and Fertility.  For questions regarding fertility preservation options in cancer patients, please contact the FERTline at (312) 503-3378.

Celebrate and Advocate: Breast Cancer Awareness Month

Screen shot 2013-10-10 at 2.31.33 PMAs I’m sure you already know, October is National Breast Cancer Awareness Month.  The nation is awash in the color pink and adorned with pink ribbons.  Everywhere we turn we see information about breast cancer signs and symptoms, early detection, and treatment options.  This alone is reason to celebrate.  Breast cancer is no longer something that is whispered about in secrecy but rather discussed in the open with friends and strangers alike.

Even with increased awareness, breast cancer remains the leading cancer diagnosis in females proving that there is still much work to be done.  There are large advocacy organizations paving the way through research grants and education programs (organizations like Lynn SageSusan G. Komen, American Cancer Society, National Breast Cancer Coalition, National Breast Cancer Foundation, and Avon Foundation) but in recent years, we’ve seen a surge of more focused organizations.  These newer organizations are geared towards young women (with cancer or at a high risk), minorities, and more aggressive breast cancer types.  These organizations have created networks of support for populations of women who may have previously felt left out of the breast cancer conversation.

Young women can reach out to Bright Pink; a national organization focused on risk reduction and early detection of breast and ovarian cancer in young women.  African American women can connect through Sisters Network, Inc; an organization committed to increasing attention to the devastating impact that breast cancer has in the African American community. Latinas in Chicago can access ALAS-WINGS, an organization dedicated to empowering Hispanic women about breast cancer awareness. Women diagnosed with triple-negative breast cancer (tumors that are negative for all three ‘receptors’ known to fuel most breast cancers: estrogen, progesterone, and human epidermal grown factor receptor 2 (HER2)) can find support through the Triple Negative Breast Cancer Foundation.  And the Metastatic Breast Cancer Network is dedicated to raising awareness of metastatic breast cancer and giving these women greater visibility in the community-at-large.

Each organization, large or small, makes the effort to give patients and caregivers a place to find support and educational resources during the cancer journey.  Every October, we’re reminded to celebrate the progress made in the fight against breast cancer and advocate for further advances.

I invite you to visit the organizations highlighted here as well as find upcoming breast cancer awareness events in your own community.  If you happen to be in Chicago, look around the city for pink ribbons, banners, and lights for October’s Light the Way to Find a Cure, to raise awareness for the Lynn Sage Cancer Research Foundation in partnership with Northwestern Memorial Hospital and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

Research Update: New Insights into use of Ovarian Tissue After Cryopreservation

Two ovarian follicles at different stages of maturation (primary on the left, secondary on the right).

Two ovarian follicles at different stages of maturation (primary on the left, secondary on the right).

Women with ovarian lesions, such as benign or malignant tumors, or those at high risk for breast or ovarian cancer now have additional evidence that can help them decide if they would like to preserve their fertility and how. Ovarian tissue cryopreservation is an experimental fertility preservation option that may be an alternative to more established options such as oocyte and embryo banking. Ovarian tissue cryopreservation includes the surgical removal and freezing of the ovarian cortex, which contains ovarian follicles and it’s immature eggs. After later thawing, this tissue may be transplanted back into a woman once she is ready to have biological children.

Some women, such as those with ovarian tumors or with a high risk of ovarian cancer may not be candidates for this ovarian tissue transplantation. Thus, researchers at the Oncofertility Consortium are investigating the ability to mature ovarian follicles in the laboratory setting until they are able undergo in vitro fertilization (IVF).  One remaining question in oncofertility research is whether ovaries with lesions have reduced numbers of follicles, which may impact the ability to have biological children through these techniques. The paper, “Human Ovarian Tissue Cortex Surrounding Benign and Malignant Lesions,” addresses this question by examining follicle numbers in the ovarian tissue of more than 130 women.

In the article, National Physicians Cooperative (NPC) Co-director Mary Ellen Pavone MD, MSCI; NPC member, Jennifer Hirshfeld-Cytron, MD, MSCI; Oncofertility Consortium Director, Teresa K. Woodruff, PhD, and others, determined that follicle density is affected in woman with specific types of ovarian. Those with benign ovarian masses had the statistically similar number of follicles as those with physiologically normal ovaries. In contrast, women with ovarian cancer and those with a strong family history of breast or ovarian cancer had significantly reduced follicle density, although follicles were still seen in most of these tissues.

These findings, available in the journal, Reproductive Sciences, may provide fertility preservation guidance for women with ovarian lesions, and those with a strong family history of breast cancer. The authors discuss that health care providers may counsel women with benign ovarian lesions about preserving fertility with ovarian tissue cryopreservation, to be followed by either retransplantation or in vitro maturation of follicles. In contrast, providers may indicate to women with malignant cancers and those with familial breast or ovarian cancer that they may not be ideal candidates for fertility preservation, due to the reduced ovarian follicles in these tissues.

Given the new study and individual considerations for young women, each patient should discuss her specific case with her doctor. If you have a question about your reproductive options after a cancer diagnosis, contact the Oncofertility Consortium‘s FERTline at 866-708-FERT (3378).

Support The Family Act of 2013!

Imagine that you are diagnosed with cancer at 24.  On top of processing the enormity of your diagnosis at such a young age, you’re shuttled from one appointment to the next, coordinating your treatment plan in the quickest timeframe possible.  Today, treatment discussions are more frequently including information regarding fertility preservation measures which gives hope to many patients about to start their arduous cancer treatment.

Screen shot 2013-10-02 at 3.38.23 PMUnfortunately, this hope can be short lived once patients learn that fertility preservation services are not typically covered by insurance and need to be paid out-of-pocket.  Out-of-pocket, in this case, can mean a few hundred dollars for sperm banking for male cancer patients or thousands of dollars for female patients.  Fortunately, there is help on the horizon.

The Family Act of 2013 has been introduced into both the U.S. Senate and U.S.House of Representatives (S 881/HR 1851) and will provide critical financial support for young people with cancer, autoimmune disorders, and other conditions whose treatment may save their lives yet damage their ability to have children in the future.  Modeled on the existing Adoption Tax Credit (ATC), The Family Act will create a tax credit for eligible taxpayers to cover 50% of the cost of IVF and fertility preservation up to the maximum amount of the credit set by the ATC ($12,970 this calendar year).

Many professional groups (for example: American Society for Clinical Oncology, Association of Pediatric Hematology/Oncology Nurses) support and recommend fertility preservation discussions with patients prior to treatment but the cost is frequently not covered by health insurance.  This financial impact often inhibits young people from undergoing such preventative measures.  Without financial assistance for these services, patients may elect to forgo fertility preservation prior to treatment, which may result in inflated costs for the survivor and the health care system years later when trying to build a family.

The Oncofertility Consortium supports The Family Act of 2013 as it will improve the lives of patients dealing with cancer and other serious, life-threatening diseases.  We fully understand the need to provide financial support for fertility preservation for young patients prior to damaging treatments.

You can read a copy of the bill here: The Family Act of 2013 – bill

Send letters of support to your congressmen here: Letters to Senate and House of Representatives

Until The Family Act of 2013 becomes a law (must be approved by both chambers by December 2014 to do so), consider utilizing our billing templates to help navigate insurance coverage in this patient population: Oncofertility Consortium billing templates

Research Update: First Live Human Birth From Vitrified Ovarian Tissue

PNASThe reproductive community took note recently with the publication of research stating that ovarian tissue cryopreserved using a technique called vitrification, has resulted in a live human birth. Ovarian tissue cryopreservation is an experimental fertility preservation technique that involves the surgical removal of an ovary, freezing, and later thawing and transplantation when the woman is ready to have children. This technique is an option for women and girls who may not be able to undergo more established fertility preservation options but to-date only about 20 human live births have been reported using this technique.

All of the live births from frozen and thawed ovarian tissue were cryopreserved using a slow-freezing method but the recently reported birth came from tissue that was vitrified, which is a specialized fast-freezing method of cryopreservation. Vitrification has been used to significantly increase the success rates of oocyte (egg) banking over the past decade.

Ovarian tissue cryopreservation is a fertility preservation option for women and girls who may loose their fertility due to cancer treatments or disorders such as primary ovarian insufficiency. Patient 3 in the article, “Hippo signaling disruption and Akt stimulation of ovarian follicles for infertility treatment,” underwent removal of both ovaries at age 29 after losing her menstrual cycles at age 25. The ovarian cortices were dissected and vitrified. The article, published in the journal, Proceedings of the National Academy of Sciences (PNAS), describes how the tissue was processed with fragmentation into smaller cubes and treated with a set of drugs designed to stimulate the growth of ovarian follicles.

Between 40 to 80 cubes of ovarian tissue (1-2 mm2 each) were autotransplanted back to the patient via surgical placement into the oviductal serosa (the outer layer of the fallopian tube).  Estradiol levels were monitored to assess when the transplanted tissue contained functional follicles, the patient was given exogenous follicle stimulating hormone (FSH) with subsequent ultrasound to monitor growth of mature antral follicles, followed by human chorionic gonadotropin (hCG) treatment. Six oocytes were retrieved and then fertilized with her husband’s sperm using intracytoplasmic sperm injection resulting in four embryos, two of which were transferred to the patient’s uterus. Thirty-seven weeks and two days later a healthy baby boy was born.

According to Mary Zelinski, PhD, and Associate Scientist in the Division of Reproductive & Developmental Sciences at Oregon National Primate Research Center of Oregon Health & Science University, “The exciting finding is that this is the first demonstration of a live human birth from vitrified (not slow-frozen) ovarian cortical tissue after transplantation, intra-cytoplasmic sperm injection of retrieved oocytes and embryo transfer.”

While this moves the field of reproductive research forward, there is still significant work needed to improve ovarian tissue cryopreservation success rates for both slow-frozen and vitrified tissue. For example, in the current study, 27 patients received similar treatments, eight had evidence of antral follicle growth and oocytes were retrieved, but only one gave birth. In order for next-generation technologies like ovarian tissue cryopreservation to become established treatments, further research is needed to improve success rates and ensure the health of children born from such treatments. To see more information about this research, watch one of the study researchers, Nao Suzuki, PhD, discuss it at the 2013 Oncofertility Conference.

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