There are more than 400,000 female cancer survivors below age 40 in the United States today, due primarily to the relatively large number of young women who are diagnosed with, and beat, breast cancer. Approximately 70% of breast cancers are identified as estrogen receptor-positive (ER-positive), meaning they express estrogen receptors and grow when exposed to the hormone estrogen. Tamoxifen, an estrogen receptor antagonist (meaning it prevents activation) is used to reduce cancer recurrence and mortality in premenopausal women with ER-positive cancers. Current general practice encourages women to take Tamoxifen for at least 5 years after an initial cancer diagnosis to reduce the risk for relapse but a recent study indicates that longer Tamoxifen treatment may be even better.

The recent study published in The Lancet examined the relapse and mortality rates of women who took Tamoxifen for 10 years after initial cancer diagnosis, rather than the established 5. The authors identified that 15 years after diagnosis, cancer recurrence rates were 3.03% in the 5-year tamoxifen-treated women, compared to 2.54% in the 10-year treated women. Similarly, death in these survivors occurred in 2.29% of the 5-year treated women versus 1.64% in the women who were on tamoxifen for 10 years. These results indicate that some women may want to extend tamoxifen therapy to get maximal benefit from the drug.

It is important to note that, in the study, the majority of benefit from tamoxifen did occur in the first five years of treatment so some women may still choose to take the drug for 5 years. Multiple factors, including side effects that negatively impact quality of life, may cause women to choose the shorter treatment schedule. These include endometrial cancer, venous thromboembolic events, cataracts, hot flashes, and other symptoms associated with menopause. Currently, up to 50% of patients discontinue tamoxifen prior to reaching the 5-year mark and women under age 40 are at highest risk to discontinue therapy.

In addition to side effects, considerations about fertility may affect tamoxifen adherence rates in younger women. Tamoxifen is a teratogen, meaning it can cause prenatal malformations. Thus, young cancer survivors who are interested in pregnancy may be hesitant to take the extra years of tamoxifen examined in the study. For example, a 30 year-old woman diagnosed with cancer may be able to wait until age 35 to have children but not able to wait until age 40, when her reproductive chances have declined significantly. Given the new study and individual considerations for young women, each ER-positive breast cancer survivor should discuss the pros and cons of extending tamoxifen therapy in 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).

A new website has just been launched to provide assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. As many of you know, the Oncofertility Consortium has a patient navigator for Fertility Preservation, Kristin Smith, who answers the national (and global) FERTline hotline. Kristin is experienced at talking to patients and providers about the best reproductive options for cancer survivors at all stages of treatment. But what happens when a young person would like to review these options in the middle of the night or do not have access to a phone?

Now patients and their clinicians can go to the new Patient Navigator for Fertility Preservation website, which includes an interactive tool to provide information on the available options for males and females, before or after puberty, and before, during, or after cancer treatment. This website can be found at FertilityPreservation.Northwestern.edu.

On the website, patients can also watch tutorials that explain normal male and female fertility and how these are impacted by different cancer treatments such as radiation, chemotherapy, and surgery. They can also watch videos of personal stories from people young people who have chosen a variety of the fertility preservation options available, including sperm banking, oocyte and embryo banking, and ovarian tissue cryopreservation. Watch the videos of Tiffany, Jonny, Matthew, Jenna, Dan, and Abby here.

The website is also built in a new platform, called responsive design, which allows viewers to interact with the site on any device including PC, tablet, or cell phone. The website automatically changes configuration for each type of device allowing for a smooth user experience for every person viewing the site.

Finally, the patient navigator website, which is hosted by the Department of Obstetrics and Gynecology at Northwestern, identifies some of the many partner programs within the Chicago area, including other departments within Northwestern, the Institute for Women’s Health Research, and the Ann & Robert H. Lurie Children’s Hospital of Chicago.  Together these resources aim to ensure that all young patients and their families are provided with reproductive options in the midst of a cancer diagnosis.

Earlier this month fertility experts announced an important milestone for assisted reproductive technologies (ART).  Since the birth of Louise Brown in England 34 years, the first “test tube baby”, an estimated 5 million babies have been born as a result of in vitro fertilization (IVF) and similar technologies.

The International Committee for Monitoring Assisted Reproductive Technologies (ICMART) presented their data in Istanbul, Turkey at the 28^th meeting of the European Society of Human Reproduction and Embryology based on values of IVF treatment cycles administered worldwide in 2008 and added probable numbers for the last three years.

IVF and similar treatments, such as intracytoplasmic sperm injection (ICSI), are the major forms of infertility treatment utilized when other methods have failed.   IVF and ICSI are procedures done in a laboratory setting.  During IVF, sperm is placed in a special petri dish with unfertilized eggs.  The sperm and eggs may belong to the male or female wishing to conceive or from a donor.  During ICSI, a form of IVF, sperm is directly injected into the egg.   After fertilization, the resulting embryos are transferred into the uterus of a woman or cryopreserved (frozen) for future use.

Success rates for IVF and ICSI have stabilized since 2008 at around a 32% pregnancy and live birth rate for each embryo that is transferred.

According to ICMART experts, approximately 1.5 million IVF and ICSI treatments are administered every year throughout the world.  The majority of treatments, one-third, are administered in Europe.  However, the US and Japan are the most active countries per capita.

Despite the overall success of IVF, the effectiveness of fertility treatments declines in women over the age of 32.  According to the Society for Assisted Technology (SART), a woman in her early 40s only has a 4% chance of achieving a healthy pregnancy using her own eggs for IVF.

Because of the poor success rates of IVF in women as they age, fertility experts warn against couples waiting to have children who may have a false sense of confidence for what ART can offer.

It is important to consider the IVF milestone in context.  It is currently estimated that 10% of the global population, within reproductive age, is infertile.   According to the Centers for Disease Control and Prevention (CDC), infertility affects both men and women.  In the United States alone, approximately 7.3 million women of childbearing age (15 to age 44) have difficulty getting pregnant or staying pregnant.   In the most recent CDC report, approximately 4.7 million sexually experienced men have sought fertility help in their lifetimes. Of these, 18.1% were diagnosed with male-related infertility problems.

The use of ART has doubled over the past decade in the US according to the CDC.   The current trend toward postponing the age of first pregnancy has brought attention to the natural limits of fertility.  However, there are numerous other known causes of infertility that affect both men and women including genetic abnormalities, certain diseases, such as cancers and their medical treatments, behavioral risk factors, as well as exposure to harmful environmental and occupational factors.   Although women’s infertility is given greater consideration, infertility is not solely a women’s health issue, rather a growing public health concern.

As previous studies have shown, women diagnosed with cancer during their reproductive years often do not receive adequate consultation, and sometimes none at all, regarding the fertility risks of cancer or its treatment.  Fertility is a unique survivorship issue that young cancer patients face, which can impact their quality-of-life after cancer treatment.  In the African American (AA) community, although more AA women are diagnosed with early-onset breast cancer than Caucasian women, little is known about patient awareness related to fertility or the rate at which providers are communicating potential fertility issues.

A new article in Supportive Care in Cancer by Oncofertility researchers, Susan T. Vadaparampil, Juliette Christie, Gwendolyn P. Quinn, Patrice Fleming, Caitlin Stowe, Bethanne Bower and Tuya Pal, entitled,  ”A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” examines patient/provider communication in the African American breast cancer population.  The authors studied AA women under the age of 50, diagnosed with invasive breast cancer between 2005 and 2006 in an effort to better understand the fertility communication and awareness barriers that may be in place for AA women being treated for breast cancer.

Similar to other studies, the authors found that a substantial proportion of young AA breast cancer patients were unaware of the impact breast cancer treatment would have on their fertility.  One half of young AA women diagnosed with breast cancer reported no discussion with their providers of fertility risks associated with their treatment.  The exception -women who were younger, had no children or few children, and had not undergone tubal ligation were more often aware of the fertility risks posed by their treatment.

The results of this study suggest that better communication and awareness about fertility is critical in order for AA patients to make informed decisions about their treatment.  In line with prior research, definite plans for childbearing, relationship status or sexual orientation should not play a role in whether or not someone is informed about their fertility risks. To learn more about this study or to read, “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” please click here.

Breast cancer is the number one cancer women are diagnosed with; however, the survival rate for young women diagnosed with cancer in its early stages has improved considerably over the last 20 years.  Today, many young women diagnosed with breast cancer can expect long-term survival, but premature menopause, infertility and psychosocial effects such as depression and anxiety may affect their quality of life. In a new article, Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, authors Jessica Howard-Anderson, Patricia A. Ganz, Julienne E. Bower and Annette L. Stanton, examine three key components of functioning that appear to be significant to young breast cancer survivors: quality of life (QOL) health issues, menopause and infertility, and behavioral health outcomes.

The authors conducted a literature review using 26 articles found in PubMed, specifically focusing on women under the age of 51, to determine QOL health issues with breast cancer survivors.  What they found was that young women’s QOL was compromised mentally and emotionally due to loss of fertility, weight gain, premature menopause, sexual function disorders and transition issues. Young breast cancer survivors reported a higher incidence of depression and anxiety than older breast cancer survivors, as a result of this QOL issues.

The authors go on to argue that the QOL health outcomes facing young breast cancer patients may be avoided if the cancer is treated not only based on the type of cancer, but by the age of the patient. They state that young breast cancer patients have different needs and therefore may warrant a different treatment regime.  “By tailoring adjuvant therapy regimes and giving cytotoxic therapy only to those who may benefit, we can mitigate some of these side effects, but the long life expectancy for these young women also provides a window of opportunity for cancer prevention and health promotion activities.”

Overall, what is needed for young breast cancer patients is an established measure for how to treat this demographic that takes into consideration their long life expectancy, including fertility and menopause awareness, as well as behavioral health outcomes.  More studies need to be conducted which evaluate patients pre and post cancer treatment to properly access their QOL before and after they were treated for cancer and potentially suffer any long-term side effects from their treatment. The Oncofertility Consortium provides information and guidance to oncologists, endocrinologists, and other health care providers concerned with expanding the reproductive options of cancer patients and survivors. To read Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, please click here.

A cancer diagnosis can be daunting to put it mildly, but add to that potentially sterilizing chemotherapy and radiation regimes and a young cancer patient faces a future of uncertainty in terms of their fertility. Fertility preservation is an option which should be discussed with both men and women, but it can be particularly challenging with young women due to the fact that it can be time intensive (not all cancer patients have the time to undergo IVF) and because mature gametes are difficult to access. A new article by Oncofertility Consortium members, Francesca E Duncan, PhD, Jennifer K Jozefik, BS, Alison M Kim, PhD, Jennifer Hirshfeld- Cytron, MD, and Teresa K Woodruff, PhD entitled, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients, argues that gynecologists are in a unique position as primary care providers (PCP) for many young women, to provide cancer patients with fertility preservation options and information pre and post-cancer treatment.

The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients focuses on young women and serves to provide gynecologists with a general understanding of how cancer therapies can affect fertility, what fertility preservation options are available to adolescent girls and young women, and how to access reproductive function pre and post cancer.  For example, the authors discuss the most common forms of fertility preservation techniques including egg banking, embryo banking and ovarian tissue cryopreservation. Every cancer patient has different options based on unique intrinsic factors including diagnosis, treatment course, age, ovarian reserve prior to treatment or anit-mullerian hormone (AMH) levels, and timing. It’s also important to note that fertility preservation options are constantly expanding as research translates to clinical practice.

The authors state that gynecologists have an opportunity to be an essential part of the oncofertility team because they interact more regularly with their patients throughout their cancer treatment and beyond. As we know, oncofertility is a multidisciplinary field requiring a team-based approach. The authors assert that, “gynecologists need to educate their patients about oncofertility because despite measures to introduce oncofertility into oncology settings, patients frequently report that they are not provided with ample information concerning fertility preservation,” from their oncologists. Therefore, the gynecologist acting as a PCP is in the most ideal role to communicate this important information.

To learn more about fertility-impairing cancer treatments, fertility preservation options, and the gynecologist’s role in oncofertility, click here to read, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients.

A new journal article by Oncofertility Consortium members explores the fertility and parenthood concerns of adolescent and young adult (AYA) female cancer survivors and the various components that lead to their reproductive decisions. The qualitative study that begot this article aimed to provide additional insight into how AYA survivors make fertility and parenthood decisions and what barriers they face along they way. “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors,” by oncofertility researchers Jessica R. Gorman, Samantha Baily, John P Pierce and Irene Su in the Journal of Cancer Survivorship, presents in depth information on an issue that has not been thoroughly explored in existing scholarship.

Six themes emerged from the analysis of the data gathered from study participants: (1) A hopeful but worried approach to fertility and parenthood, (2) Frustration with a lack of choice or control over fertility, (3) Young survivors want information about their fertility, (4) Young survivors want better continuity of care in survivorship, (5) Cancer diagnosis and related fertility problems introduce relationship challenges, and (6) Decisions about parenthood are complicated.[1]

The overriding theme of this study and something the Oncofertility Consortium is working tirelessly to improve, is the importance of collaborative, comprehensive medical care for young cancer patients. Study participants described feeling disappointed with the care they received as patients and the lack of coordination among providers treating them.  Specifically for patients experiencing long-term side effects such as the loss of fertility, much of the burden of managing their care fell onto them as their providers focused on their immediate need for treatment and did not discuss at length or in some cases, at all, potential long term consequences of treatment. These findings are consistent with previous research suggesting that there is an unmet need for fertility preservation counseling at the time of diagnosis.

Understanding the concerns of young cancer survivors is the first step toward developing an effective and appropriate treatment plan that is consistent with the needs of the AYA population. As we now know, the AYA cancer community presents its own set of unique challenges when devising a comprehensive treatment regime. Collaboration among health care providers is an important step toward improving the quality of care from cancer patient to cancer survivor. Click here to read, “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors.”

A recent blog post in the academic journal, Nature, explores a new report by the Nuffield Council on Bioethics (an organization in England that examines and reports on ethical issues in biology and medicine), suggesting that women who donate their unfertilized eggs to research deserve to be compensated. Currently in the United Kingdom, direct compensation for egg donation to research or for infertility treatments is prohibited by law. In the US, while direct compensation for egg donation to infertile couples/individuals varies by state, the only state that is allowed to use public funding to purchase unfertilized eggs for research purposes is New York.

The report argues that since egg donors are not compensated, researchers must rely on altruistic egg donors, which are few and far between. In a letter written to the academic journal Cell Stem Cell, scientists Kevin Eggan and Douglas Melton from Massachusetts discuss the issues they ran into when trying to recruit egg donors for a study they did in 2006-2007. They spent $100,000 on advertising over a 2-year period and although they initially received over 200 respondents, once they found out they would not be compensated, all but one dropped out of the study. Eggan and Melton’s findings suggest that if direct compensation for unfertilized eggs were legalized, more women would participate in egg donation for research purposes.

Ethical concerns and objections have been raised regarding egg donation, one in particular – the exploitation of the poor and disenfranchised. Some scholars and ethicists argue that if egg donation were monetized, it would lead to the comodification of the vulnerable, particularly poor and college-aged women. If a price tag were put on eggs, might a woman discount the burdens of submitting to egg stimulation and retrieval in exchange for the chance to earn $5,000 to $10,000, the going rate for eggs used in infertility treatments?

The flip side to this argument is that labeling this practice exploitative is overprotective and paternalistic. Why should egg donors for research be required to be more altruistic than those giving their eggs for reproductive purposes? Why compensate one for their time, burden, expenses and risks, but not the other?  Also, it is argued that there is a greater social value in donating eggs for research than there is in donating eggs for infertility treatments. Although at the Oncofertility Consortium, our scientists do not do research on donated eggs, they do study donated human ovarian tissue which is essential for advancing clinical practice in fertility preservation.

There are a number of arguments that can be made (and have been) for or against compensatory egg donation, but the fact remains that researchers residing in areas that compensate egg donors have higher participatory rates for their studies. This suggests that with the proper protocols in the place (i.e., a national registry which tracks egg donors limiting the amount of times they can donate, proportional and modest payments to egg donors, etc…), compensating egg donors for research studies may yield higher participation rates.

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By Maya M. Harper, M.A.

Every year, 70,000 adolescents and young adults (AYAs) between the ages of 15-40 are diagnosed with cancer. They may experience this diagnosis as a devastating twist of fate that has the potential for derailing their life from its current track. However, with the changes in the oncology field, cancer has become something that is survivable. People can and do have full lives after cancer.

The cancer treatments that can save a person’s life are not without risks. One of these risks is loss or impairment of fertility. There are proactive measures, such as sperm banking and embryo freezing, that a person can take if they have time before treatment. However, they may not find out about these services until it is too late. Even if they are presented with options, they must make decisions when they are already overwhelmed with making decisions about cancer treatment.

It is not uncommon nowadays for people to put off having children or even thinking about children until 30 or later. A cancer diagnosis means that a young adult may have this decision thrust upon them without warning. They may not have a partner. Kids may be the furthest thing from their minds. They have to make the decision not only of whether they want children, but also whether they are willing to have a child with the intervention of medical technology. Heterosexual people, in particular, may have always assumed that they could have children “naturally” someday. They may have much to consider. Fertility issues can also impact the romantic relationships of young adults who have been diagnosed with cancer.

Our new study – An Examination of Cancer Related Fertility Concerns– seeks to find out how people learn about and feel about fertility implications of cancer and cancer treatment. We would also like to find out whether there are differences in the ways that people of various sexual orientations and genders experience these implications. Heterosexual people and LGBT (lesbian, gay, bisexual, and transgender) people may tend to have different views of biological reproduction even prior to a cancer diagnosis.

Therefore, we are recruiting people who were diagnosed with cancer as young adults. We’d like to talk with them about their experiences for 45 minutes to an hour. I am excited to begin this study, because it is something that is truly novel. We are looking at oncofertility through a different lens than has been done before.  We may find interesting and useful results about the roles of sexual orientation and gender with respect to oncofertility. If you are interested in the study, please contact Maya Harper at maya-harper@northwestern.edu

Motherhood has long been viewed as a valued role for women, regardless of whether or not every woman is a mother or plans on being one. In all fairness, it is a defining role for many women and something that gives their lives added meaning. I can certainly understand how this could be a principle role in one’s life – I feel as though motherhood, among other things, gives my life purpose and a completeness stemming from conceiving, carrying and raising a child.

Historically, women who did not have children were viewed as unfortunate (I am referring primarily to middle class, white women). Their primary role was in the home and children were a large part of “keeping a home.” Before women entered the paid workforce, their primary job was to have and care for children. As you can imagine, women who for whatever reason were unable to bear children, suffered socially and emotionally as a result of their infertility. The idea of being complete, of being a whole woman was challenged by their childless identity.

In a new article by Sarah Rodriguez, PhD and Lisa Campo-Engelstein, PhD, entitled, “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” they explore the idea of wholeness experienced though organ transplantation, specifically ovarian tissue transplantation in infertile women.  Women began requesting medical interventions for infertility as early as the beginning of the 20^th century suggesting the “cultural resonance of pregnancy and motherhood.”  As surgical interventions to correct infertility grew in popularity, infertility was no longer seen as a “personal misfortune… [but instead] a medically treatable condition.”

In their article, Rodriguez and Campo-Engelstein argue that ovarian tissue transplantation can serve, through the act of biological reproduction, to render women whole, meaning to conceive and carry a pregnancy naturally. By utilizing case studies that span over a century, they show that the idea of wholeness embodied in biological motherhood still permeates women’s identities thus, organ transplantation that restores fertility in women helps facilitate this idea of completeness.

To learn more about this and the history of ovarian transplantation, please read “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” by Sarah Rodriguez and Lisa Campo-Engelstein. You can also find their research on fertility in, Oncofertility: Ethical, Legal, Social, and Medical Perspectives.