Who Makes Fertility Decisions in Pediatric Cancer Patients?

Young women and men facing cancer treatments are forced to confront not only their cancer diagnosis, but also the potential loss of their fertility. Each individual case and treatment plan may affect fertility differently; however, healthcare providers should inform their patients about fertility preservation options. At Northwestern, the Oncofertility Patient Navigator immediately reaches out to newly diagnosed cancer patients and their families to discuss options for preserving fertility. This decision is complex enough for an adult, but what happens if the cancer patient is a child? In a perfect world, two parents who have their child’s best interests at heart can discuss the situation and come to a joint decision as to how to proceed with the child’s treatment collaboratively and amicably.

As in many life situations, the ideal is far from a reality that it is much more complicated.  First it is important to bear in mind that families are asked to make life altering decisions on fertility shortly after their child has been diagnosed with cancer. The difference between fertility decisions with a cancer patient and an average person seeking treatment for infertility is time –cancer patients need to make decisions and begin fertility preservation procedures quickly.

Imagine you just find out that your 7 year old daughter has been diagnosed with cancer and now you are meeting with the Oncofertility Patient Navigator only hours after you’ve received this information. You are in this meeting with your husband who is not your child’s biological parent, but has been in the child’s life since she was a baby. The biological father has been involved, but not to the extent that the stepfather has. You disagree on how to proceed and your child’s young age prevents her from participating fully in the decision making process. The question then becomes, who has more authority in making the decision for the child – the mother and stepfather, the mother, the father, etc..?

Other issues may arise in the fertility preservation of legal minors, including an adolescent child disagreeing with his or her parents on whether or not to pursue fertility preservation. This could be basic adolescent rebellion or there could be some fundamental ideological or religious differences between the parents and the child that need to be addressed. A health care provider familiar with the ethical dilemmas in oncofertility may help guide the family to a resolution that is hopefully consistent with the beliefs and values of everyone involved.  It is important for the adolescent child to feel that they have some autonomy over their body and their treatment options; however, assuming that the parents have the child’s best interests in mind, they may be better equipped to make rational decisions at such an emotionally charged time.

Facing infertility is a difficult issue, but coupled with a cancer diagnosis and impending cancer treatment, it can seem overwhelming. Families face significant personal and ethical decisions when they are dealing with a minor’s fertility options.  These decisions become even more difficult when the families do not agree on how to proceed. In these instances, who has the final say? It’s a complex dynamic and one that needs to be explored more thoroughly as we examine fertility preservation in a pediatric cancer context. You can read more about this topic in “Whose Future is it? Ethical Family Decision Making About Daughters’ Treatment in the Oncofertility Context,” by Kathleen M. Galvin, PhD., and Marla L. Clayman PhD., in Oncofertility: Ethical Legal, Social, and Medical Perspectives.

Treating Infertility in Developing Countries

Recently I read a piece by Lisa Campo-Engelstein, PhD and Amanda Fleetwood, PhD arguing for the inclusion of low cost assisted reproductive technology (ART) centers in the Global South, a term used for developing countries in academic literature. They reason that ART services give women reproductive autonomy and can alleviate the stigma that infertility brings to women and their families. Specifically focusing on three low cost ART centers in sub-Saharan Africa (Sudan, South Africa and Tanzania), I wondered how these centers were accessible to the people they were meant to reach. How do we define “low cost” in areas were the average monthly take home pay is between $50-60, but the reduced treatment cost for ART is $300? How do we reach the people that need this service the most – the people that are unable to get to these centers due to a lack of infrastructure within their particular region?  How do we engage the local population to take advantage of these services and monitor them when or if they do considering the immense stigma attached to infertility? All questions that need to be addressed, but at the heart of it is, “is there a need for these services and if so, how can we make it happen so that it reaches the people it was meant to assist?”

Certainly one can argue that by creating low cost ART centers we are only treating the symptoms of a much larger problem (infertility due to sexually transmitted diseases and poor healthcare services), but regardless of this debate, it doesn’t detract from the fact that there are still couples suffering from infertility that need reproductive choices. Taking that a step further, in many countries umbrellaed into the term, “the Global South,” children are so highly valued that a woman who does not produce any children will very likely suffer a stigmatization that devalues her status in the community and can lead to more extreme conditions such as ostracism and violence in certain areas. It’s also important to note that in most cases women are blamed for infertility issues, whether or not this is actually the case, so by giving them reproductive options you are facilitating women’s autonomy in the public as well as the private sphere.

I think there are a lot of variables that come into play when we begin to think about low cost ART centers; funding, access, resource distribution, eligibility, etc… Nonetheless, after careful reflection and an admitted “change of heart,” I believe that if implemented with prevention strategies and the mission to help those most in need of this service, it will prove to be an incredible resource for women (and men) in the Global South. For more information on ART and the Global South, please read, “The Impact of Infertility: Why ART Should Be a Higher Priority for Women in the Global South,” in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

National Growth of Oncofertility Informal Science Education

The 2011 senior class of the Oncofertility Saturday Academy

This past Saturday, 32 students from the near south side of Chicago were not hanging out at home or at the mall. Instead these juniors and seniors in high school were attending the fifth annual Oncofertility Saturday Academy at Northwestern University.  For the next four weeks, these young women will be exposed to different aspects of oncofertility in order to increase their science literacy and instill in them a passion for science.

On Saturday, the junior students, who will spend the month focusing on oncofertility research, performed experiments using fertility preservation techniques in Teresa Woodruff’s laboratory. The senior students began their clinical oncofertility experience learning how to give a pelvic exam and practicing on the same plastic models that medical students use. The Oncofertility Saturday Academy, part of the Women’s Health Science Program, also exposes these students, from Young Women’s Leadership Charter School on the near south side of Chicago, to careers in science and medicine. This Saturday, the juniors were paired with Physician Assistant trainees while the seniors learned from medical students. The high school students also listened as Tiffany, a cancer survivor, and her husband discussed their experiences fighting cancer and preserving their ability to have biological children.

The Oncofertility Consortium also provides similar informal education programs in San Diego, Oregon, and, most recently, Philadelphia. This past summer, investigators and clinicians from the University of Pennsylvania started the Pennsylvania Academy for Reproductive Sciences (PARS) to teach 10 high school girls about the research, clinical care, and the bioethics of fertility and cancer.

The Philadelphia group held another session this fall and are preparing for a spring academy, which begins on March 5th. The young women in this program range from freshman to seniors and attend schools throughout the greater Philadelphia region. The girls beginning the PARS program in March will have the opportunity to perform in vitro fertilization of mice eggs, see a working operating room, and even perform a transabdominal obstetrical exam on one of the pregnant facilitators of the program! Over the next few weeks we will continue to update our readers on the national activities of the Oncofertility Saturday Academy.

Catholicism and Fertility Preservation – Evolving Together

Assisted Reproductive Technology (ART) first came onto the Vatican’s radar in the early 1950s and by 1956 Pope Pius XII, proclaimed artificial reproduction as unlawful in the Catholic Church, because it produced human lives by separating procreation and normal sexual function.  Fast-forward to Catholic moral teaching today and you will find that it accepts some forms of ART; however, only those that involve a married couple engaging in sexual intercourse resulting in procreation without any physician interference in the act itself. Some of these applications include hormonal treatments and surgery for endometriosis.  With those guidelines in mind, some of the current technologies in oncofertility seem to be consistent with Catholic moral teaching, specifically autologous ovarian tissue transplantation (OTT) which involves removing ovarian tissue to be frozen and thawed for re-implantation at a later date. This transplantation provides undamaged follicles to the cancer survivor and can restore normal endocrine function, allowing her to procreate “naturally,” according to the church.

In a recent article in Theological Studies, Paul Lauritzen, PhD, and Andrea Vicini, MD, PhD, discuss the potential dialogue between theologians and evolving technologies, such as OTT. As a former graduate student of a very traditional Jesuit university, I have a pretty clear understanding of Catholic moral teaching and traditionally the Catholic response to ART has not been favorable. I asked Paul Lauritzen, philosopher and ethicist, if he found that conscience and technology were mutually exclusive or if they had the ability to meet each other halfway in an effort to move forward with some reciprocity? He replied that, “what you find if you pay attention to the kind of debates raised by emerging technology is that many religious traditions seek to wrestle with the issues raised by the new technology in ways rooted in tradition to be sure, but also seeking to engage the new technologies in creative ways and often what happens is there is a kind of give and take.”  In the article “Oncofertility and the Boundaries of Moral Reflection” Dr. Lauritzen also recognizes the interdisciplinary approach the oncofertility community has taken. In our discussion he stated that, “there’s been an effort to engage both religious leaders and also those familiar with the ethical teachings of religious traditions to get them to reflect on the technology from within those traditions and at least help frame how the tradition is likely to approach the technology.”

In order for OTT to even get on the radar of the Vatican, enough people at the grassroots level would have to question this application and bring enough attention to it so those questions start to filter up. This line of questioning and discussion has already opened up at the Oncofertility Consortium and with time, one can hope that it reaches the Pope. You can read the full article in “Oncofertility and the Boundaries of Moral Reflection” here.

Surrogacy: An Important Fertility Preservation Option for Cancer Survivors

Often when we think of assisted reproductive technology (ART) in the emerging field of oncofertility, we assume that this technology is available to all women of reproductive age following cancer treatment – that with some manipulation of eggs or embryos transferred back into a woman’s body, they have the potential to become pregnant. Unfortunately for some women, their cancer treatment leaves them unable to gestate for a number of reasons including: the effects of radiation on the uterus, the removal of the uterus (hysterectomy) or the potential negative effect of chemotherapy on hormone regulation.  In these situations, if a woman has banked her eggs or embryos she then has the option, the only option at this time, of using a surrogate to have a biological child.

Choosing surrogacy as a means of having a biological child necessitates a significant amount of research in order to fully understand the complicated legal, ethical and economic implications of an already emotional and personal decision.  Decisions need to be made about which type of surrogacy you will pursue – altruistic or commercial – will you be compensating someone or not? Does your state even allow you to compensate a surrogate and if not, what are your options in other states? In surrogacy, a lot of what you decide to do depends on your geographical location and the laws and practices of that particular region.

Commercial surrogacy can be costly omitting a large number of people from opting in which makes international surrogacy a more accessible option to individuals with financial limitations. When choosing international surrogacy you will have to establish how to navigate another country’s legal and/or governmental system. Some countries have very limited governmental regulations while others are highly restrictive so working with an experienced and knowledgeable surrogacy broker may help you to avoid potential legal complications.  A broker is there to protect your rights as the biological parents and to make sure that the surrogate chosen is prepared emotionally and physically to follow-through as contracted with the surrogacy agreement.

Regardless of the logistics of surrogacy, as we see an increase in cancer survivors through improved treatment plans, we will also see an increase in surrogacy arrangements. When discussing fertility preservation options with patients, it is the responsibility of the provider to also let the patient know about surrogacy in the event the cancer treatment leaves them unable to gestate. In order to make an informed decision about their fertility options, patients need to have all their possibilities laid out in front of them.  You can read more about this topic in “Domestic and International Surrogacy Laws: Implications for Cancer Survivors,” by Kiran Sreenivas, PhD and Lisa Campo-Engelstein, PhD, in  Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Brain Tumor Community Rallies Around Website

I recently had a conversation with Jill de Bartok, the program manager for patient services at the National Brain Tumor Society (NBTS), about their ever-growing programs. NBTS funds cutting-edge science and serves as a resource for researchers and medical professionals.  It also provides services for patients, families, and caregivers, including a website to educate this community and help them make informed decisions during their treatment journey.

Brain tumors are abnormal growths of tissue within the brain that may or may not be malignant, or cancerous. Like blood-born cancers, some brain tumors are more prevalent in younger people or children than adults but every brain tumor is unique and, as such, requires individualized treatment plans. In talking with Jill de Bartok, she said that many unique difficulties in brain tumor care comes from the “cognitive changes and changes in parts of the brain from the tumor or treatment.”

These cognitive effects can cause seizures, personality alterations, or result in an inability to work or attend school. In addition, brain tumors can damage parts of the brain that produce hormones important in reproduction, causing infertility. Treatment for brain tumors can include surgery, chemotherapy, and radiation, all of which may also affect the fertility of brain tumor patients.

The NBTS focuses much of its research and patient services on quality of life issues. In early 2010, the NBTS launched my.braintumorcommunity.org to provide patients and caregivers an opportunity to share their stories and learn from each other through discussion forums, profiles, and friendship building. These discussions guide the NBTS staff to provide additional information on their “Headquarters blog. According to de Bartok, the NBTS “aims to improve the quality of life for everyone involved in all phases of the journey,” through the site. The NBTS also holds Family Caregiver Workshops in partnership with treatment centers and organizations, to help family members best care for the unique needs of brain tumor patients, and additional awareness events around the country. A Quality of Life initiative further obtains input from experts to ensure that NBTS programs have the most significant impact on the brain tumor community

Late Effects of Cancer Treatment: Infertility and More

We often discuss the late effects of cancer treatment, those that become evident after therapy ends, on this blog. One reproductive late effect of treatment is premature menopause, which can be caused by chemotherapy or radiation damage to the ovaries. Even women who continue to have normal periods throughout cancer treatment may experience a shortened period of fertility and enter menopause as early as their 20s. But late effects of cancer treatment vary considerably and can include surgical problems, secondary cancers, and cognitive difficulties.

Last week, the cancer community was dismayed to learn that Matthew Zachary, the Founder of I’m Too Young For This! and a 15-year brain cancer survivor suffered a stroke as a result of radiation therapy. The symptoms of the transient ischemic attack (TIA) seem to have been temporary and Zachary will be going through a series of detailed tests this week with his neurologists. Since the radiation in 1996, Zachary has experienced a series of late effects and, fortunately, all of them have been temporary.

The episode raises a serious issue in cancer survivorship that affects all of us. Even when fertility needs are covered (Zachary is the proud father of 9-month-old twins), survivors of pediatric, adolescent, and young adult cancers carry additional side effects of treatment with them for the rest of their lives. As survival rates continue to increase, more research efforts are needed to address quality of life issues for those who’ve beaten cancer. What is the best way to increase research on the late effects of cancer treatment? Increased funding.

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I’m Too Young for This! and Imerman Angels will present the inaugural Stupid Cancer Happy Hour for the Chicago cancer community this Thursday at Rockit Bar & Grill (22 West Hubbard St.).

Fertility, Femininity, and Cancer

When I was a teenager and in my 20s, I never thought deeply about having children or becoming a mother. By the time I turned 30, I was very busy with graduate school and work, pushing the idea of children even further back into the recesses of “possibilities” for my future. In fact, the older I got, the more I questioned whether or not I ever wanted children at all…until one day I did. What happens when a woman’s ability to conceive and carry a child is no longer a physical possibility due to cancer or its treatment? What does it mean to create and carry a child and what are the options for those whose bodies are unable to perform this function? Does a cancer diagnoses in women of reproductive age or pre-reproductive potential impact our perception of them as “mother” or “woman” if their fertility becomes affected as a result of their illness?

These questions made me think about my own experience as a woman and a mother and how that has been influenced by my environment and personal experience. As a self-proclaimed feminist and advocate for women’s rights, I was always reticent to link women with motherhood for the very obvious reason that not all women are mothers nor do all women aspire to become mothers.., however now that I am one.., my sense of purpose is very much tied to that identity. The process of having a biological child has been integral to my womanhood and I understand on a much deeper level, the desire to want to protect and preserve one’s fertility so that the option of having a child with my own genetic make-up is a possibility. If I were diagnosed with cancer or another illness threatening my reproductive potential, would that force me to reconsider my social role as a woman? Would I at least want the opportunity to discuss my reproductive options so that infertility would not have to be a defining characteristic of my post-cancer life?

These issues as well as those related to pregnancy, birth and fertility are a part of a larger discussion in the emerging field of oncofertility. As demonstrated above, cancer and infertility are not just defined by medical factors, they are also someone’s personal experience embedded in a larger societal and cultural context. In “Placing the History of Oncofertility,” Sarah Rodriguez, PhD argues that society, culture and personal issues all coincide along with medical factors to influence the field of oncofertility and will continue to shape the field requiring a deeper inspection of oncofertility’s history in an attempt to better understand how it impacts the lives of women. Rodriguez’s chapter can be found in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Fertility Research: Standing on the Shoulders of John Rock

The Oncofertility Consortium at Northwestern University is officially closed today due to a record-breaking blizzard in Chicago. The snow day gave me an opportunity to read a chapter in Malcolm Gladwell’s book What the Dog Saw about John Rock, MD, an American doctor and scientist who was integral to many of the advances fertility medicine has seen in recent generations.

From the 1920’s through the 1960’s, John Rock worked as an obstetrician and gynecologist in Massachusetts. As a clinician, Rock saw many patients and couples dealing with infertility. These cases motivated the Harvard-trained doctor to research possible treatments for infertility, some of which are now used to preserve the fertility of young cancer patients.

In the 1940’s, Rock worked with Miriam Menkin to attempt in vitro fertilization with human eggs, or oocytes. In 1944, they published their work in the journal Science. In those experiments, Menkin and Rock described their efforts to fertilize 138 oocytes with sperm and, in three cases, recorded changes in the oocytes that appeared to be post-fertilization cell division. Since, the team never attempted to implant the presumed embryos in a woman, it is not known if the eggs were actually fertilized and viable. Despite this uncertainty, the work that Rock and other scientists performed in these early years was integral to the birth of Louise Brown, the first child born from in vitro fertilization, in 1978.

John Rock also researched techniques now used to preserve the fertility of male cancer patients. In the 1950′s, he worked to perfect sperm banking, which requires freezing and then thawing a sperm sample without damaging the motility or mobility of the sperm. Again, Rock was ahead of his time and successful sperm cryopreservation methods were not developed until the 1970’s.

Dr. Rock may be most well-known for his true scientific passion, birth control. A devout Catholic, Rock first became involved in the contraceptive movement during the 1930’s when he founded a birth control clinic that taught the rhythm method, a church-sanctioned technique that calculates a woman’s reproductive cycle and limits sex between a couple to the infertile period of the cycle. Rock also collaborated with researchers who developed the first hormonal birth control pill and was convinced that this technique, like the rhythm method, was a natural form of contraception and would also be approved by the Catholic church. Needless to say, that did not happen.

Next Thursday, February 10, the Oncofertility Consortium will host Margaret Marsh, PhD, and Wonda Ronner, MD, as they discuss their research on John Rock in a Virtual Grand Rounds at 10 am CST. Join the discussion here through Adobe Connect .

Ovaries: Organs or gametes?

Female cancer patients interested in preserving their fertility prior to treatment may choose from a variety of options including egg banking, embryo banking, or ovarian tissue cryopreservation. While some fertility preservation techniques, such as egg and embryo baking, require a 2 to 3 week delay in cancer treatment, ovarian removal and cryopreservation allow women to proceed with cancer treatment almost immediately. After the survivor is cancer-free and wants to have a child, pieces of her ovary can be transplanted back into her body to begin releasing eggs that are unaffected by chemotherapy and radiation. Most cases of ovarian tissue transplantation are called autografts since the donor and recipient are the same. In a few rare cases, women have received ovarian tissue from other individuals, usually sisters.

These rare cases raise an interesting question to ethicists at the Oncofertility Consortium; should ovarian transplantation between two women be legally treated like organs or gametes? The US government regulates organs listed under the National Organ Transplantation Act and sale of these organs is prohibited. In contrast, gametes, such as eggs and sperm, are unregulated and legally able to be purchased and sold. While ovaries are definitely organs, they also hold genetic material with the potential to become life. Oncofertility ethicist Lisa Campo-Engelstein, PhD, discusses these issues in a recent publication titled “Gametes or Organs? How Should we Legally Classify Ovaries Used for Transplantation in the USA?

The article, published in the Journal of Medical Ethics, discusses that the intended use of the ovary should play a major part in categorizing the donation. One 30-year-old woman identified in the article lost her fertility after cancer treatment for non-Hodgkins lymphoma. Her sister donated an ovary to her so she could carry and give birth to a child. In contrast, another patient requested autotransplantation of her own ovarian tissue not to have a child but to relieve early onset menopausal symptoms. While these two intended uses of ovarian tissue are quite different, they may play roles in the legal, ethical, and insurance designations of such transplants.

In the article, Dr. Campo-Engelstein suggests that ovarian tissue should be classified as a gamete because, in either case, once ovarian tissue is donated to a recipient, it may be used to produce offspring, even if that was not the original intent. It is important to remember that these cases are quite rare and it is unlikely that ovarian tissue donation will become common. However, the Oncofertility Consortium believes it is necessary to include ethical scholars into the discussion of any emerging technology as their insights can help guide the scientific research.

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