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.

Pregnant with Cancer

Most of the time, this blog focuses on the effects of cancer and its treatment on fertility. But what happens if you are already pregnant and then diagnosed with cancer? Suddenly you are not only focused on fostering your pregnancy but also saving your life and your growing fetus.

Cancer diagnoses occur in approximately one out of every 1,000 pregnancies and while pregnant women may be diagnosed with any type of cancer, those that occur most during pregnancy are also commonly seen in young adults. These include cervical cancer, Hodgkin’s lymphoma, malignant melanoma, and thyroid cancer. Breast cancer is the most diagnosed cancer during pregnancy and is seen in one out of every 3,000 pregnant women. Though cancer during pregnancy is not uncommon, significant gaps remain in our knowledge of how cancer, and its treatment, can affect the mother, growing fetus, or the fertility of the child in utero.

While pregnant, a woman’s body is constantly changing and these changes can mask cancer symptoms and delay a diagnosis. Possible cancer symptoms such as bloating, headaches, or body aches commonly occur in pregnancy also and may prevent timely diagnosis. Once diagnosed, many treatments may be off-limits to pregnant patients. Patients diagnosed with cancer during pregnancy face complex treatment decisions. During the first trimester of pregnancy, chemotherapeutics are associated with significant risk for fetal malformation. Even after the first three months, cancer therapies may cause problems for the developing fetus. Some types of radiation therapy, such as radioiodine, damage specific tissues but other therapies are thought to be safer. The many types of cancer treatments and variables during pregnancy have prevented the standardization of care for these women.

Little research has examined the long-term effects of cancer treatment on a child exposed to cancer therapies in utero. Significant studies are needed to examine the fertility and long-term health of these offspring. This work would be used to develop guidelines to treat women who are pregnant and facing a cancer diagnosis. In conjunction with research, expert clinicians should be trained to treat pregnant cancer patients. Moreover, cancer during pregnancy presents a unique and complex scenario that must be carefully treated by a multidisciplinary team to to provide a bright future for both mother and child.

Emerging Treatments and Education for Blood Cancers

Ten percent of all cancer cases are classified as blood cancers because they originate in the blood, bone marrow, or lymphatic tissue that frequently spreads to bone marrow. These cancers, which include leukemia, lymphoma, and myeloma, cause uncontrolled division and growth of abnormal blood cells that can crowd out other necessary blood cells. While they can affect people of all ages, lymphomas are the third most common cancers in children.

One of the greatest problems with these cancers is diagnosis. The typical symptoms of blood born cancers are also common in many non-life threatening illnesses and, as such, can delay accurate diagnoses.  These include generalized tiredness, anemia, bone aches, or bruising. Many blood cells are involved in the immune response and may be reduced in patients, who may also experience frequent infections.

The most common treatments for leukemia, lymphoma, and myeloma are chemotherapy and radiation, which have significantly increased survival rates over the last decades. Remission for these cancers is positively correlated with the amount of chemotherapy used, meaning that the greater the chemotherapy dose, the more likely the cancer cells will be destroyed. Unfortunately, increased chemotherapy also increases the risk for future infertility.

Patients at high risk for relapse or those not responding to traditional cancer therapies are candidates for stem cell transplantation. During a stem cell transplant, cancer-free cells are introduced into a patient and become integrated into bone marrow cavities to begin making healthy bone marrow and stem cells. Stem cell transplants can be used with cells from the patient, called an autologous transplant, or from cells from a donor, called an allogenic transplant. Prior to transplantation, patients undergo significant chemotherapy and whole body irradiation to kill off any remaining cancer cells and inhibit the patient’s immune system to prevent rejection of donor cells. The significant amount of chemotherapy and radiation in stem cell transplantation put patients especially at risk for loosing their fertility and such patients should look into fertility preservation options if they are interested in having biological children later in life.

Fortunately, both oncology providers and patients have many opportunities to learn more about emerging research and treatments in blood born diseases. Last Friday, the Physicians’ Education Resources hosted an event at Northwestern University’s Feinberg School of Medicine to inform providers on “Current Trends in Leukemia, Lymphoma, and Myeloma.” Patients and their families can also learn from the experts in a series of free upcoming events for the public including the Leukemia Research Foundation’s Annual Town Hall Meeting on Sunday, January 30, 2011, which will include physician panelists who will discuss how to find a treatment center, the role of genetics in blood cancers, and clinical trials for patients. Gilda’s Club of Chicago is also holding a seminar on February 2, 2011, on Improving Treatments for Blood Cancers.

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