Building a Successful Fertility Preservation Program

More and more healthcare organizations, hospitals, and clinics are interested in learning about fertility preservation and how exactly an oncofertility program is developed. The Oncofertility Consortium holds a 1-day course entitled, Clinic 101, to teach health care providers the necessary steps involved in developing their own fertility preservation program or ways to strengthen their existing program. Nonetheless, we understand that not everyone can make it to Chicago for this course so a few of our Consortium members put together a little “how-to” to help you get started.  In “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authors H. Irene Su, Lindsay Ray, and R. Jeffrey Chang, provide a first hand account of what is needed to build an oncofertility program through their experience developing a program at the University of California, San Diego (UCSD).

First, starting an oncofertility team requires engaging a medical team with various clinical backgrounds: oncologist, reproductive endocrinologist, urologist, patient navigator/nurse, anesthesiologist, supportive oncology, etc., to commit to communicating and working together from the onset of diagnosis through survivorship. Often, the oncologist and reproductive endocrinologist are the ones to assemble the oncofertility team, in part because they are the clinicians involved in the immediate diagnosis and aftermath of a cancer diagnosis in a pediatric, adolescent, or young adult cancer patient.   Collective expertise in managing oncofertility patients is crucial to a successful treatment plan.

Another important aspect of building an oncofertility program is to establish a marketing/communications team to help educate health care providers and medical practices’ about fertility preservation.  It is also imperative for the marketing team to reach the local pediatric and young adult cancer community to encourage young cancer patients and their caregivers to be proactive in their cancer care so they can make informed decisions about their course of treatment.  Websites, grand rounds, exhibits, educational materials, and resources all help to facilitate effective outreach efforts.

Finally, after a clinical team has been established and outreach and marketing efforts put in place, an oncofertility program needs a financial counselor to assist patients in locating resources to defray the cost of fertility preservation. At this time, most fertility preservation treatments are not covered by insurance. This can have a strong influence on a cancer patient’s decision to pursue oncofertility services; however, knowledgeable financial counselors can help direct patients to the appropriate financial assistance programs and help negotiate oncofertility packages in their own institutions.

To learn more about building a fertility preservation program, please read, “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

October is Breast Cancer Awareness Month

October is Breast Cancer Awareness Month, which is an annual campaign to increase awareness of the disease. Countries around the globe have started celebrating Breast Cancer Awareness Month, with 31 days spotlighting prevention, education, and finding a cure. While most people are aware of breast cancer, many forget to take the steps to have a plan to detect the disease in its early stages and encourage others to do the same. We have made a lot of progress but still have a long way to go!

As Breast Cancer Awareness Month gets under way, consider how you will make a difference this month in the lives of the one in eight women who will be diagnosed with the disease. Whether it’s donating to charities that directly fund cancer treatment or pressuring government to take real action, make your involvement have the most impact.

Know The Facts:

Each year, approximately 70 thousand men and women age 15 to 39 are diagnosed with cancer in the US. Breast cancer accounts for roughly 15% of all cancers in this age group. Young women with breast cancer struggle with many issues either not present or much less severe in the lives of older women; including, the possibility of early menopause and effects on fertility.

Get Involved with Legislation:

To make meaningful change in the lives of those living with breast cancer, Breast Cancer Action is urging advocates to “move beyond ‘awareness’ and pink ribbons.” The 2012 Breast Cancer Action Mandate urges government officials to push legislation that keeps corporations from polluting the environment and pushes pharmaceutical companies and biotech firms to prioritize patients over profits.

Support Grassroots Organizations:

It’s not just the big name charities that you should be supporting. Consider getting involved with grassroots organizations that are tackling the issues that don’t garner mainstream attention. The Young Survival Coalition for example, focuses exclusively on the unique issues young women with breast cancer face. It provides comprehensive resources, support and education to address every phase of a young woman’s breast cancer experience. The Keep Abreast Foundation also works specifically with young people educating them on how to eradicate breast cancer for future generations.

Tomorrow: Receive Free CME Credits for Zsolt Peter Nagy, PhD– Vitrification: State Of The ART For Oocyte And Embryo Cryopreservation

Tomorrow launches this year’s cadre of Virtual Grand Rounds for the Oncofertility Consortium. For those who are not aware of these special rounds, they are live videoconferences with experts in the fields of reproduction, cancer, and oncofertility. The rounds provide researchers, clinicians, and others the opportunity to hear emerging research findings from anywhere across the globe and participate through a live videochat. This year, the Oncofertility Consortium is also able to offer free CME credits to health care providers through these live virtual events.

We are happy to be hosting Zsolt Peter Nagy, PhD for his presentation tomorrow, October 11, 2012 at 12 PM Central time, for his talk on vitrification, the rapid freezing technique used in assisted reproductive technologies (ART). Dr. Nagy will discuss the current state of vitrification in two fertility preservation options for young female cancer patients, oocyte and embryo cryopreservation.

At Noon, Central time, click here to watch Dr. Nagy present his Virtual Grand Rounds

Or sign up to receive free CME credits while participating in Dr. Nagy’s presentation

APHON Releases Fertility Preservation Position Statement

Yesterday we posted a blog about the 36th annual APHON (Association of Pediatric Hematology/Oncology Nurses) Conference being held right now in Pittsburgh, PA.  It’s an exciting time for us because not only do we have a member of the Oncofertility Consortium presenting on fertility perseveration at the conference (Barbara Lockart, MSN, RN, CPNP, CPON), but also because APHON has recently released a position statement entitled, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients. The strides that have been made since the Oncofertility Consortium’s inception in 2007 are truly on display here and we couldn’t be more excited!

Nurses are often the thread connecting young cancer patients and their families to pertinent information that can sometimes be overlooked in the urgency of a cancer diagnosis and subsequent treatment planning process.  As studies have shown, fertility issues and options are often not addressed at diagnosis for several reasons (age of the patient, diagnosis, gaps in provider knowledge, etc.); however, several studies report childhood and AYA cancer patients are interested in learning about fertility preservation options, including those that are experimental.

It is APHON’s position that, “discussions regarding fertility preservation occur with all patients and families as early in the treatment trajectory as possible (prior to treatment whenever possible). These discussions should continue throughout treatment and follow-up care as patients continue to grow and develop.” Currently, many pediatric facilities do not have the resources available to offer fertility preservation in their institutions, but they have the option of partnering with reproductive or adult centers that provide fertility preservation services. Collaboration between centers is vital for a successful treatment experience for patients, families, and their healthcare team. The Oncofertility Consortium provides both patients and health care professionals with resources for locating established fertility preservation centers, as well as providing a national fertility hotline, FERTLINE, answered by a Fertility Preservation Patient Navigator who can provide you with additional information.

In addition to that, pediatric oncology nurses’ expertise may be needed to provide adult healthcare providers with information about the unique psychosocial and developmental needs of childhood and AYA oncology patients and their families. They can also be a great resource for patients and families who may not have enough information independently to inquire about specific issues such as cost, insurance coverage, success rates, and storage concerns.

As evidenced by their position statement, APHON is supporting the Oncofertility Consortium’s quest to ensure that all patients, providers, and caregivers have the ability to make informed decisions regarding fertility preservation in the face of a cancer diagnosis. Please take a moment to read, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients, and learn more about fertility preservation resources nationwide.

36th Annual APHON Conference: October 4th-6th

Today marks the start of the 36th 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 5th 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.

 

Guest Blog: Building and Evaluating an Interdisciplinary Team in Oncofertility

Members of the Oncofertility team were invited to guest post on the NIH Team Science Toolkit blog and we are happy to announce that the blog was just posted. Read the beginning of the blog below.

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Over the past decade, federal funding has played a key role in encouraging the advancement of interdisciplinary team science.  The 2007 Roadmap for Medical Research Initiative, which was created by the National Institutes of Health, is one such example.  The Initiative was designed to bring diverse experts together to solve extremely challenging public health problems, from obesity to mental illness. The Initiative launched a number of programs, including the Oncofertility Consortium (oncofertility.northwestern.edu). The Consortium is an interdisciplinary team of researchers and clinicians created with the goal to expand the reproductive future of young cancer survivors through advanced research and improved clinical care. Given that 10% of cancer patients are diagnosed during or before their reproductive years and that survivorship rates exceed 80%, fertility is a significant survivorship consideration for the 135,000 patients under age 45 who are diagnosed each year and for their families. The subfield of oncofertility (at the intersection of oncology and reproductive medicine) was launched with federal financial support, and the participation of scientists, clinicians, social scientists, humanities scholars, and others to address this issue…Read the rest of this blog on the Team Science Toolkit blog.

Watch the 2012 Oncofertility Conference LIVE!

For those of you who don’t know, the 2012 Oncofertility Conference: Dialogues in Oncofertility,  is taking place as we speak in Chicago, IL. We understand that not everyone can come to us, so we want to bring the Oncofertility Conference to you. Please visit our conference home page, and watch a live stream of this dynamic event. Even better, we are offering Continuing Medical Education (CME) credit so if you’re interested in adding some to your repertoire, please click on the link for those. We hope you can join us!

Watch the live broadcast now!

Watch AND earn CME credits now!

2012 Oncofertility Conference AGENDA

Killing two birds with one stone? Understanding common genetic features of breast cancers and ovarian tumors

The more we understand about our genes, the more we understand genetic diseases and eventually, how to best treat them.  The recent efforts of a nationwide consortium of researchers suggests that the origins of the type of breast cancer a patient is diagnosed with may inform the most effective course of treatment.

The study, published in Nature on September 23rd, is one of the most comprehensive studies of breast cancer to date.  The study revealed that the gene expression profile for one of the most aggressive forms of breast cancer, basal-like carcinoma, is more similar with ovarian tumors than with other breast cancer subtypes.

The four main breast cancer subtypes: Luminal A, Luminal B, HER2, and basal-like, were confirmed and characterized by leading researchers at several institutions as part of The Cancer Genome Atlas Network.  The study is part of an NIH funded initiative with the Cancer Genome Atlas Network to build maps of genetic changes in common cancers.  While most historical studies of breast cancer have utilized one or two methods to analyze and characterize the gene profiles of breast cancers, six parallel technologies were used for this study to examine mutations and defects in DNA, RNA, and proteins.  Consortium scientists analyzed tumors from 507 women, with nearly 350 tumors being analyzed using all six technologies.

Basal-like breast tumors are also known as “triple negative” tumors.  Triple-negative tumors lack receptors for the hormones estrogen, progesterone, and human epidermal growth factor 2 (HER2), which are the gene targets of a number of approved chemotherapies such as Tamoxifen and Herceptin.  However, no receptor hormones means no drug targets.  Basal-like tumors are a considered high-grade, indicative of an abnormal appearance of the cells under a microscope and a tendency to grow and multiply more rapidly. These tumors have a poor prognosis for treatment and are more prevalent in younger women, women with BRCA1 and BRCA2 mutations, and women of African-American descent.

Currently, basal-like breast tumors are treated like most other breast cancers, using similar chemotherapy strategies.  However, basal-like breast tumors are aggressive and not been shown to respond well to therapies targeting hormone receptors or to standard chemotherapy regimens.  Consortium researchers found that each subtype could be identified by unique genetic markers, and that mutations in only three genes, TP53 (tumor suppressor gene 53), PIK3CA and GATA3, occurred in common with all four subtypes.  These findings suggest that not all breast tumors are alike and therefore, may not respond similarly to the same chemotherapy regimens.

Consortium scientists found that basal-like and HER2 tumor subtypes were characterized by the highest mutation rates.  Basal-like tumors shared common features with ovarian tumors and lung cancers, including high rates of TP53 mutations, BRCA1 inactivation, and a loss of RB1 and cyclin E genes, which are known to promote genome instability.  The study shows that 80% of basal-like tumors had TP53 mutations and approximately 20% also have mutations in the BRCA1 or BRCA2 genes. Mutations in the TP53 gene have been strongly linked to poor treatment outcomes, while BRCA1/2 mutations are known to increase breast and ovarian cancer.

A growing body of research suggests that tumors should be characterized and treated based on the presence of abnormal genes and abnormal gene expression profiles rather than on their location in the body.  Consistent with these findings, consortium researchers found that basal-like tumors are genetically more similar to ovarian tumors based on their genetic profiles.  Ovarian tumors are also characterized by a high frequency of TP53 mutations, widespread genomic instability and share other gene mutations in common with similar frequency.   These results give biologic reasoning to consider the potential benefits to patients with basal-like tumors to be treated with platinum-based chemotherapies currently approved for the treatment of ovarian cancer or PARP inhibitors which target tumors with BRCA1 and 2 defects.

Clinical trials are a lengthy but necessary step to determine if platinum-based compounds, currently used to treat cancers elsewhere in the body, and/or PARP inhibitors hold promise for patients diagnosed with basal-like breast carcinoma.  For now, this study offers much needed insight into the origins of the most aggressive form of breast tumor and promising possibilities for future personalized treatments.

First mother-to-daughter uterine transplants offer fertility hope for cancer survivors

After nearly ten years of research, a team of 20 doctors and specialists at the University of Gothenburg in Sweden, have performed the first mother-to-daughter uterine transplants in two Swedish women.

The two women, both in their 30s, received new wombs donated by their mothers on September 15th and 16th without complications.  One of the women was born without a uterus, while the other, a cervical cancer survivor, had to have her uterus removed many years prior.

The uterine transplant procedure was developed as a reproductive technology to allow women of childbearing age, who lack a uterus, to bear children.    Both women began hormonal treatments for in-vitro fertilization before the surgery.  Frozen embryos will be thawed and transferred to their new wombs once doctors have determined that they are healthy enough to support a pregnancy.

According to the Centers for Disease Control (CDC), more than 600,000 hysterectomies are performed annually in the US.  Although the vast majority of hysterectomies are performed electively as a treatment for symptoms associated with gynecologic disorders, removal of the uterus is frequently recommended when cancer of the cervix, uterus, vagina, fallopian tubes and/or ovaries is invasive.  Similarly, hysterectomy is recommended in cases of uterine fibroid tumors, endometriosis and uterine prolapse.

Uterine transplants are unique amongst organ transplants in that they are not required as a life-saving intervention.  Because the procedure is not regarded as life-saving, researchers had to perfect the procedure to make it as safe as possible using non-human primates.  The first successful transplant for the team was reported via a series of publications lead by Mats Brannstrom around 2003.  The team of more than 10 surgeons who performed last weeks uterine transplants, trained together for several years first with mice, reporting successful pregnancy and offspring.  The team has since been successful in other animal models including baboons.

Although it is too soon to know, the mark of success for these transplants, and one performed last year by Turkish doctors using a womb from a cadaver, is a successful pregnancy.  If successful, the option of uterine transplant may affect thousands of women of reproductive age that have had to have their uterus removed due to uterine or cervical cancer, endometriosis, and those born without a uterus due to genetic disorders such as Turner’s Syndrome.

 

Chicago, Stupid Cancer, and Cocktails!

The Oncofertility Consortium often partners with Stupid Cancer, a non-profit organization that empowers young adults affected by cancer through innovative programs and services, to ensure that the needs of the adolescent and young adult (AYA) cancer community are prevalent in the scientific community. Young adults account for 72,000 new diagnoses each year, or roughly 10% of the cancer population. AYA cancer patients face a variety of hurdles along their medical journeys. While survival rates for young children and elderly cancer patients increased over the past few decades, rates for 15 to 40 year-olds are unchanged.

This year, Stupid Cancer founder, Matthew Zachary, will be a featured speaker at the 2012 Oncofertility Conference, highlighting the special needs of the AYA cancer community. Not only will he be speaking at the conference, but he will also be performing a piano concerto at our cocktail event, An Evening for Pediatric and Young Adult Cancer Survivors, Thursday, September 27th, at the Ann and Robert H. Lurie Children’s Hospital. We are so excited to have Stupid  Cancer take an active role in the conference this year because of their incredible ability to connect young cancer patients with a support network that they may not have known about otherwise. One of the more popular networking events that Stupid Cancer hosts across the country are informal “Happy Hours,” to promote its mission and provide entertainment to young cancer patients. These kinds of events connect patients undergoing treatment, those in remission, and healthcare professionals in a continuing effort to ensure that young cancer patients get the best support possible.

Fortunately for Chicagoans, Stupid Cancer is partnering with Imerman Angels, an organization that matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer, to host a Happy Hour on Thursday, September 27th from 7-9pm at Moe’s Cantina following the Oncofertility Conference.  In the words of Stupid Cancer, “Come out for a different kind of social mixer with no pressure, no judgments, no stigma and—best of all—no sitting around a circle sharing your feelings. Chill out, make friends and hang with folks who don’t care if you have one boob, one ball, port scars or a serious lack of eyebrows.” For more details, visit Stupid Cancer Chicago Happy Hour or click here to register for the 2012 Oncofertility Conference. We hope to see you there!

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