Category » Oncofertility

An Unlikely Surrogate

A recent story on the Today Show sparked my interest and practically begged for me to write about it. It involved cancer, fertility, and surrogacy so it seemed right up our alley, but there’s a caveat I should disclose before you read any further – the mother of the mother-to-be was carrying her daughter’s child. Are you following me so far? Keep reading…

Chicagoan Emily Jordan was diagnosed with cervical cancer when she was 30 years old, leaving both her and her husband Mike, certain that children would not be in their future. Even more devastating news would follow – when she went into surgery to have her uterus removed, doctors informed her that she was actually pregnant. Although doctors could not save the fetus, they assured Emily that they would try and save her ovaries so she could still produce eggs.

After Emily’s surgery, she and Mike underwent invitro fertilization (IVF), but because she no longer had a uterus, they needed a surrogate to carry their embryo. At the time, her 52 year old mother Cindy, was anxious for a grandchild and heartbroken for her daughter because she couldn’t carry her own child. Cindy offered to be her daughter’s surrogate.  Emily and Mike initially dismissed her proposal thinking it was not a realistic option. After broaching the subject with Emily’s OB/GYN, she found out that her mother was exceptionally healthy, and actually a good surrogate candidate, so Emily and Mike made the joint decision to have Cindy carry their child.

According to Emily, “This is just a continuation of everything she has done for me her entire life, which is to make sure that I have the best life possible. This just reaffirms everything I know about her and love about her.” Just days after Emily turned 32, baby Elle Cynthia Jordan was born via C-section.  Even though the procedure required hormone shots for several months, Cindy said she would do it again: “When I watch both of them hold that baby and look into her face, it’s like everything I could have imagined wanting for them, better than I could have imagined.
This is what it was all about for me.”

To see the full story on Today, click here. To learn more about fertility options for cancer patients, including surrogacy, please click here.





The Role of Fertility Preservation Patient Navigators in Oncofertility Management

As you may have heard us mention a time or two before, the 3rd book in the oncofertility series, Oncofertility Medical Practice: Clinical Issues and Implementation, was just released on and is available for purchase. Besides just letting our readers know that important piece of information, we’d also like to give you an inside look into the wealth of knowledge this informative new book contains. To begin, let’s take a look into chapter 13, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” by Kristin Smith, Brenda Efymow, and Clarisa Gracia to see the true role of patient navigators in oncofertility management.

Adolescents and young adults facing a new cancer diagnosis need immediate access to oncofertility care in order to maximize their fertility preservation options. In order to do this, patient navigators act as the go-between among a variety of health care providers including oncologists, and reproductive specialists, during a highly stressful and complex time following a cancer diagnosis. According to the authors, “Within the health care setting, the patient navigator bridges institutional and disciplinary boundaries so that cancer patients are able to receive timely information regarding fertility preservation options.” Once cancer patients receive this pertinent information, they are better able to make informed decisions about their course of treatment.

Cancer patients making the decision to preserve their fertility have a limited timeframe to process and make this decision that individuals not facing a cancer diagnosis often do not have to navigate. They do not have the time to flesh out their decision and/or save up for the expensive procedure.  According to the authors, “The average out-of-pocket cost for invitro fertilization (IVF) in the United states is $12,500.” A fertility preservation patient navigator can assist patients by directing them to programs established to defray the cost of fertility preservation, or draft appeal letters to insurance companies, which can result in a savings of thousands of dollars.

Finally, patient navigators act as the “experts” in fertility so that oncologists don’t have to be.  They serve not only the patient, but also the provider, making a complex topic more accessible to healthcare professionals who may be uncomfortable with their level of knowledge in oncofertility, increasing the likelihood that they will not refer patients for consultation.  At Northwestern, Fertility Preservation Patient Navigator Kristin Smith works closely with healthcare professionals, shepherding patients between specialists in oncology, urology, and reproductive endocrinology.  Kristin is also the face of the new Fertility Preservation Patient Navigator website, designed to provide virtual assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. To learn more about this website, read our blog, “Introducing the Virtual Patient Navigator for Fertility Preservation,” by Kate Waimey Timmerman, or click here to go directly to the website.

To learn more about the Patient Navigators’ role in fertility perseveration, read, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” in Oncofertility Medical Practice: Clinical Issues and Implementation.


Fertility Preservation in Current Oncology

In 2006, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients in response to the increased likelihood of young men and women at risk of losing their fertility due to cancer and its treatment. Nonetheless, studies show that many young cancer patients still are not receiving important information related to their fertility, which would allow them to make informed decisions on their course of treatment.  In a new study in Current Oncology, entitled, “Fertility Risk Discussions in Young Patients Diagnosed with Colorectal Cancer,” authors, A. Kumar, A. Merali, G.R Pond and K. Zbuk performed a retrospective chart review for patients less than 40 years of age with newly diagnosed colorectal cancer between 2000 and 2009, to identify the frequency of fertility preservation discussions.

The investigators reviewed eligible health charts for any indication that a fertility discussion had taken place after initial diagnosis. If there was a documented discussion, investigators then reviewed the charts to see if any follow-up had been done via an oncologist or a reproductive specialist.  Demographic and treatment information was extracted from the charts.

The study identified 59 patients who met all the criteria for inclusion (18-40yrs old, year of diagnosis, stage of cancer, type of treatment, etc). Of those 59 patients, 35 were men and 24 were women. Their average age was 34, and 95% of the selection had received chemotherapy treatment for their cancer.

The study found that only 20 of the 59 patients received fertility counseling and 2 of those 20 did not receive a follow-up discussion with a reproductive specialist. The study also found that age was the most important factor as to whether or not an individual received a fertility discussion. Men and women under the age of 35 were more likely to receive a fertility discussion than those over 35.  Finally, the investigators observed no significant difference in the frequency of discussions after 2006, when the ASCO guidelines were published.

The results of this study demonstrate that the fertility risks associated with colorectal cancer treatment and fertility perseveration options available to newly diagnosed cancer patients, were discussed infrequently.  As we know, fertility preservation options are available; however, unless a patient or their clinical team are proactive about exploring those options, young cancer patients may not be getting the pertinent fertility information they need in a timely fashion. This study highlights the need for more health care professionals to discuss fertility risks with their patients prior to undergoing cancer treatment.

Read, “Fertility Risk Discussions in Young Patients Diagnosed with Colorectal Cancer.”

“Life Interrupted,” Shares the Unique Challenges of a Young Adult with Cancer

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.


The Need for Greater Awareness About Fertility Preservation

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.


Now Available on! Oncofertility Medical Practice: Clinical Issues and Implementation

Thus far, it’s safe to say that both cancer survivors and the medical community have acknowledged the importance of patient counseling and the pursuit of fertility preservation options prior to starting cancer treatment. Over the last year, the oncofertility consortium has been busy putting together the third book in the oncofertility series with some of the most prominent members of the oncofertility community. The first book, Oncofertility: Fertility Preservation for Cancer Survivors, addressed the complex reproductive issues associated with the treatment of malignant diseases by recognized leaders in the field who discussed scientific advances, applications of modern technology, psychosocial implications, ethical considerations, and current options for men and women confronted with therapies that affect fertility. The second book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, moved beyond oncofertility as a science and medical technology and to addressed the social, legal, and ethical ramifications of the field.

Oncofertility Medical Practice: Clinical Issues and Implementation, the third in the series on fertility preservation for cancer patients, explains the latest practices and emerging treatments in oncofertility and provides necessary information on the successes, risks, and limitations of fertility preserving technologies. Oncofertility Medical Practice: Clinical Issues and Implementation is an up-to-date resource for all those practicing in the field of oncofertility, but this book is specifically geared toward clinicians.  As with the previous two books, Oncofertility Medical Practice: Clinical Issues and Implementation is written by an impressive multi-disciplinary group of specialists in the fields of oncology, reproductive endocrinology, urology, patient navigation, bioethics and many more. Chapters and authors include:

  • Gonadotoxicity of Cancer Therapies in Pediatric and Reproductive-Age Females by Jennifer Levine, MD
  • Gonadotoxicity of Cancer Therapies in Pediatric and Reproductive-Age Males by Jill P. Ginsberg, MD
  • Fertility Preservation in Males by Landon Trust, MD & Robert Brannigan, MD
  • Embryo and Oocyte Banking by Lynn M. Westphal, PhD and Jamie A.M. Massie, MD
  • Ovarian Tissue Cryopreservation and Transplantation by Laxmi Kondapalli, MD, MS
  • The Role of In Vitro Maturation in Fertility Preservation by Peter S. Uzelac, MD, Greg L. Christiansen, PhD, and Steven T. Nakajima, MD
  • Mitigating the Risk: The Role of Ovarian Transposition and Medical Suppression by Jaime M. Knopman, MD, and Nicole Noyes, MD
  • The Birds and the Bees and the Bank: Talking With Families About Future Fertility Amidst a Cancer Diagnosis by Gwendolyn P. Quinn, PhD, Caprice A. Knapp, PhD, and Devin Murphy, PhD
  • Addressing the Three Most Frequently Asked Questions of a Bioethicist in an Oncofertility Setting by Lisa Campo-Engelstein, PhD
  • Pregnancy in Cancer Survivors and Patients by Eileen Wang, MD
  • Communication Between Oncofertility Providers and Patients by Jennifer Mersereau, MD
  • Setting up an Oncofertility Program by H. Irene Su, MD, Lindsay Ray, BSN, and R. Jeffery Chang, MD
  • Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide by Kristin Smith, Brenda Efymow, RN, BSN, and Clarisa Gracia, MD
  • Preparing an Interdisciplinary Workforce in Oncofertility – A suggested educational and research training program by Christos Coutifaris, MD, PhD
  • Clinical Cases in Oncofertility by Clarisa Gracia, MD
  • Appendix – Oncofertility Resources for the Clinician by Kate E. Waimey, PhD

Click here for more information or to place an order on the groundbreaking new book, Oncofertility Medical Practice: Clinical Issues and Implementation, at

New Article Calls for Female Fertility Preservation Best Practice Guidelines

Fertility concerns should be addressed with all newly diagnosed reproductive age cancer patients before their treatment begins. Although some treatment courses are thought to be more damaging to fertility than others, it is imperative that every patient is well-versed about the potential impact their treatment may have on their reproductive future in order to make informed decisions regarding fertility preserving procedures. In a new article in the Journal of Assisted Reproduction and Genetics, entitled, “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer,” the authors, ISFP Practice Committee, Kim SS, Donnez J, Barri P, Pellicer A, Patrizio P, Rosenwaks Z, Nagy P, Falcone T, Andersen C, Hovatta O, Wallace H, Meirow D, Gook D, Kim SH, Tzeng CR, Suzuki S, Ishizuka B, Dolmans MM, discuss different types of cancer and their treatment and the corresponding affect on fertility arguing for the importance of standardized fertility preservation counseling prior to treatment.

In “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer,” the authors discuss specific types of cancer (luekemia, lymphoma & breast cancer) incident and survival rates, as well as effects on gonadal function. For newly diagnosed breast cancer patients, factors affecting gonadotoxicity are age of the patient, and dose and number of cycles of some types of chemotherapeutics, called alkylating agents. The authors further clarify that many studies measure future fertility risk based on the likelyhood of amenorrhea, which can vary greatly depending on the types of chemotherapy.

In many cases, young breast cancer patients require additional cancer treatment given after the primary treatment, such as chemotherapy after surgery (mastectomy or lumpectomy), to lower the risk that the cancer will come back. The best time for fertility preservation is after surgery and before subsequent chemotherapy or radiation treatment begins. Egg or embryo banking is often recommended as a fertility preservation option for women before chemotherapy. Cryopreservation of embryos or oocytes requires hormonal stimulation which increases the levels of hormones, such as estrogen, in a woman’s body. For women with breast cancer, especially estrogen receptor positive types, this may cause proliferation of the cancer cells and the authors state that these risks should be discussed before the treatment. In addition, they state that women who require urgent cancer treatment, cryopreservation of ovarian tissue should be considered.

All patients who desire to preserve fertility should be counseled and informed about currently available fertility preservation options by their healthcare team. Recommendations should be individualized to the patient dependent on their diagnosis and treatment plan. The authors of “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer” state that, in general, fertility preservation before cancer treatment is strongly recommended if the chance of losing fertility is over 30 % with cancer therapy. Patients or clinicians interested in learning more about fertility preservation for a particular case can call the Oncofertility Consoritum’s FERTline for tailored information.



The National Cancer Institute Focuses on Oncofertility

About 70,000 adolescents and young adults (ages 15-39) are diagnosed with cancer each year in the United States. During cancer treatment, adolescents and young adults (AYA) may focus all of their energy on getting through treatment. Some may not have spent much time talking or thinking about life after cancer treatment, and the impact their cancer treatment may have on their survivorship. Life after treatment often presents a new set of challenges and fertility may be one of the challenges that survivors face once treatment ends and family planning begins.

The importance of fertility options for AYA’s diagnosed with cancer has not been lost on the National Cancer Institute (NCI), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training. Recently, the NCI featured oncofertility in the NCI Cancer Bulletin, a distinguished news source for the latest in cancer research, in an article entitled, “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research.”

Understanding fertility outcomes for the AYA cancer population is imperative to improving the cancer treatment process and ensuring that fertility preservation discussions become standard procedure in comprehensive cancer care. Fertility preservation is of special concern for AYA cancer patients, a group that historically has been underrepresented in clinical research studies. “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research,” explores the unique approach that the Oncofertility Consortium used to get their attention and increase AYA participation in clinical studies: social media.

The success of this new outreach effort can be seen in the Consortium’s Fertility Information Research Study (FIRST). FIRST is a fertility information research study for young women who are facing or have faced cancer treatment. Researchers want to learn more about how cancers and treatments affect the reproductive health of young survivors, and whether or not cancer survivors wish to have children in the future or not.

When FIRST was initially launched, researchers had some difficulty recruiting study participants, due to the challenges AYA’s pose to researchers (in other words – they can be hard to track down). After some initial brainstorming, they decided to utilize their relationships with some of the leading AYA advocacy groups such as Stupid Cancer and Imerman Angels to reach the AYA population. After the first posting about the study on Twitter and Facebook, researchers received 15 calls from cancer patients willing to participate. Today, FIRST has 200 participants and counting, many of them learning about the study via social media.

To learn more about how the Oncofertility Consortium is changing the face of comprehensive cancer care through social media, read “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research.”

Cancer, Fertility, and the Supreme Court

On March 23, 2010 the Patient Protection and Affordable Care Act was signed into law. This bill was designed to fill some of the health care gaps that prevented many Americans from receiving affordable health insurance. Since that time, the legality of the bill has been questioned and this past Thursday, the Supreme Court of the United States of America found the principle components of the bill to be constitutional in a case titled National Federation of Independent Business v. Sebelius (the Secretary of Health and Human Services).  One of the most controversial aspects of the bill requires that all American citizens acquire health care insurance or face a tax penalty, was also upheld. Many young cancer patients and survivors who are concerned with their fertility have also been affected by the bill and are assured that the changes implemented by the law are here to stay, as follows.

Beginning on September 23, 2010, the bill established that children under age 19 could no longer be denied health insurance coverage due to a preexisting condition, allowing parents of young children to freely change jobs without fear that their child would be denied insurance coverage under the new employer’s insurance. That date was also significant for older children, as children were allowed to maintain health care coverage under their parents plan until the age of 26 (previously it was 18 or higher if the child was a full time student) regardless of where they live or dependent/marital status.

Now that the Supreme Court has upheld the legality of the Act, additional changes will be implemented on January 1, 2014. Starting then, health insurance companies will no longer be able to deny coverage to anyone because of pre-existing conditions. This includes anything from cancer to pregnancy and will give young survivors the ability to get a job without risk of losing insurance coverage. Additionally, people will not be restricted to annual or lifetime limits, allowing young cancer survivors to face their survivorship without worrying about the financial ruin that may come with a recurrence.

Read more oncofertility coverage on the Affordable Care Act:

New Fertility and Cancer Study from Oncofertility Consortium Member, Jennifer Mersereau, MD

Advances in cancer treatments give young women more hope for survival than ever before, but many treatments can leave women unable to naturally conceive a child.  The University of North Carolina (UNC) Fertility Preservation Program, a member of the National Physicians Cooperative, provides options for female patients of reproductive age newly diagnosed with cancer, but the decision to initiate fertility preservation must be made quickly, before cancer treatment begins.  General lack of knowledge about reproductive functioning, stress related to processing the cancer diagnosis, urgency, and insufficient support while attempting to make the decision, all serve to degrade this process often leading to later decisional regret.

As a result, Oncofertility Consortium member, Dr. Jennifer Mersereau, and UNC Fertility are conducting a multidisciplinary research study that evaluates a ‘Decision-Aid” designed to help reproductive-aged women (age 18-42) make decisions about fertility and cancer. This collaborative project between a reproductive endocrinologist, clinical psychologist, and oncology experts involves a new interactive, web-based decision aid that is used in concert with fertility preservation counseling.  If this decision aid proves to be beneficial, this web-based tool may potentially be used for patients who do not have easy access for a full fertility preservation consultation.

Study Details:

  • Study participants will have a routine consultation appointment with a fertility specialist at UNC Fertility to discuss fertility, cancer, and treatment options for fertility preservation. Note that this visit is considered part of routine medical care.
  • Participants will plan for an additional 45-60 minutes at the time of their consultation to watch a web-based presentation about fertility preservation and decision-making.  They will also complete questionnaires at that time.
  • Participants will be asked to complete 2 additional web-based surveys, one approximately one week after the consultation, and one approximately 6 months later.

Findings from this pilot evaluation will support a grant application for a multi-site study to investigate community effectiveness and accessibility. Study participants will receive a $50 gift card for full participation, to compensate for their time and effort. If you are in the Chapel Hill area and interested in taking part in this study, please call for a consultation appointment (919-966-1150) or send an email to jem *at* with your name, phone number and times that you can be reached. Your contact information will not be shared with anyone outside the study. For more information about this study, please click here.

*Supported by a grant from the UNC Lineberger Cancer Center.

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