Oncofertility and Womanhood in Muslim Communities

As you’ve seen in previous blog posts, we’ve discussed the religious implications of assisted reproductive technologies (ART) in certain faiths and challenged ourselves to rethink oncofertility in the context of religious traditions. Through analysis and close examination, we can often discuss the challenges oncofertility poses to religious communities in a way that encourages thoughtful reflection. One area I knew little about and wanted to better understand was how the practice of oncofertility fit into Islamic conceptions of motherhood. To do this I turned to Dr. Ayesha S. Chaudhry’s, “Unlikely Motherhood in the Qur’an: Oncofertility as Devotion.”

To start, Muslim attitudes toward ART are by no means uniform, and often depend on the inclination of the legal scholars in any given community. In general though, Muslim jurists have been obliging on matters of reproductive technologies, so long as paternity is protected. When it comes to oncofertility, the repercussions are minimal if the ovarian tissue belongs to the woman it was removed from and any eggs removed are fertilized by the husband or future husband only. Using donor sperm becomes problematic since it puts paternity into question and establishing the patrilineal lineage of a child is paramount in Islamic law. This is the main reason why adoption is not allowed in Islam.

Although Muslim women would face few barriers in Islamic law if they were to pursue oncofertility procedures with their husband, they may struggle with the role of God in their infertility. Muslim means, “submission to God,” and it’s an important value for followers to exemplify. According to Dr. Chauhdry, “Muslim women might feel that by choosing to engage in fertility-enhancing technology, they are demonstrating a lack of trust in God and that they are not ‘submitting’ to His will in the matter of their infertility.” Thus it would be a huge religious obstacle if Muslim women felt that they were subverting God’s will rather than submitting to it.

While there is pressure to procreate in Muslim communities, motherhood is not considered essential to womanhood, therefore her infertility or potential infertility need not compromise her identity. While only one of Muhammad’s 11 wives bore him children, they are nonetheless referred to as “the Mothers of the Believers” in the Qur’an. Nevertheless, offspring is considered a basic marital right and impotence or infertility are grounds for divorce. This further complicates the decision-making process to pursue fertility preservation methods as opposed to being content with God’s will.

In Dr. Chauhdry’s “Unlikely Motherhood in the Qur’an: Oncofertility as Devotion,” in Oncofertility: Ethical, Legal, Social and Medical Perspectives, she offers new ways for women to think about their choices when making fertility preservation decisions. She uses Qur’anic stories to provide a religious framework which places fertility preservation in a sympathetic context rather than a subversive one. To learn more, read the full chapter here.

Oncofertility from the Perspective of a Physician

Addressing fertility preservation with a newly diagnosed cancer patient may seem like a daunting task for a healthcare provider, but studies show that cancer survivors who did not learn about fertility preservation options were more likely to feel distressed by this, impacting their quality of life. Whether or not an individual pursues fertility preservation, patients want to know what their options are so they can make an informed decision regarding their future fertility. So why do many healthcare providers fail to discuss fertility preservation with their patients after diagnosis?

Many physicians face communication challenges when discussing fertility preservation with their patients. These barriers can be related to either a physician’s own personality or relationship with the patient, but oftentimes it stems from a lack of knowledge about fertility preservation options and referral sources. Although male fertility preservation is pretty straightforward, female fertility preservation isn’t. This is a particular problem with emerging technologies that are still experimental as a healthcare provider may not know all the available options well enough to comfortably speak about them with patients.

Physicians also struggle with discussing fertility preservation with patients that have low health literacy, patients from cultures or religions that do not support assisted reproduction or patients who do not speak English.  Patient and provider interactions are already complex, but these factors make the conversation particularly challenging. In the event of a non-native speaker, even when an interpreter is used, it’s unclear what is “lost in translation” between patient and provider and how much has been effectively communicated.

Finally, one of the most delicate issues a physician faces is broaching fertility preservation with a patient who has a poor prognosis or is in the late stages of cancer. Healthcare providers have expressed their discomfort with telling a patient they have a low survival rate and broaching fertility preservation in the same conversation. The dynamic involved with giving someone a grim diagnosis and then changing gears and asking them whether or not they’ve ever thought about having children, is complicated in the best case scenario.

These are only a few examples of the challenges physicians face when discussing fertility preservation with a patient. Other factors include the age of the patient at the time of diagnosis and a physician’s attitude toward delaying treatment, particularly in the case of female patients. Understanding these challenges is important to overcoming them.  The Oncofertility Consortium identifies such barriers, works to find solutions, and then promotes those solutions to the clinical community through the National Physicians Cooperative.  To learn more about this topic, please read “Healthcare Provider Perspectives on Fertility Preservation for Cancer Patients,” by Gwendolyn P. Quinn, PhD and Caprice A. Knapp, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Cancer, Fertility and Environmental Implications

A rapidly expanding body of research indicates that many reproductive health problems and cancers may be caused by exposure to chemicals that are widely dispersed in our environment and which we come into contact on a daily basis. These problems include infertility and cancers of reproductive organs. Chemicals are commonly highlighted in media stories and public policy debates due to increasing evidence of exposure in the population and potential health risks. These chemicals are particularly harmful when exposures occur during vulnerable periods of development.

On April 19th, the Institute for Women’s Health Research hosted Dr. Tracy Woodruff, Associate Professor of Obstetrics, Gynecology and Reproductive Sciences and Director of the Program on Reproductive Health and the Environment at the University of California, San Francisco. Dr. Woodruff has done extensive research and policy development on environmental health issues, with a particular emphasis on reproductive and development health in relation to exposure to environmental chemicals.

Recently in the media, we have been inundated with messages about the dangers of environmental chemicals such as Bisphenol A, otherwise known as BPA. BPA is used extensively in producing certain hard plastics made into many products such as baby bottles and canned food lining. It is an endocrine disruptor that in mice causes numerous harmful physiological effects, and some research suggests that corresponding studies in humans produce similar results.  This chemical as well as other environmental contaminates are particularly damaging when exposure occurs during development stages such as in utero and puberty.

According to Dr. Woodruff, “the majority of people in the US have some measurable amount of pesticides and chemicals in their body and the timing that they were exposed is as important, if not more important than how much they were exposed to.” Studies show that children who were exposed to environmental chemicals in utero are more likely to develop childhood leukemia. In addition, women who were exposed to environmental chemicals during significant developmental stages are more likely to suffer from infertility or vaginal cancers.  Coinciding with this evidence, both the Endocrine Society and the National Cancer Institute have released reports concurring that exposure to environmental chemicals can lead to adverse reproductive outcomes, infertility and certain cancers.

So what can we do to avoid the ubiquitous presence of pesticides, BPA and other harmful environmental chemicals? On an individual level, we can reduce our consumption of processed foods. That is to say we should buy less canned and packaged goods and buy more fresh foods whenever possible. When buying fresh foods, we need not break the bank and buy all organic, but there are certain foods with a higher amount of residual pesticides that you should try and buy organic whenever possible. Another way to reduce your exposure to harmful chemicals is by microwaving your food in glass rather than plastic. Finally, you should be especially diligent about reducing your exposure to environmental chemicals if you are pregnant or have small children in an effort to reduce their likelihood for health issues down the line. Through simple lifestyle modifications, we can  minimize our exposure to chemicals which have been linked to both infertility and cancer and reduce our likelihood for adverse health conditions.

Family Planning and Cancer

Planning to start a family can be an exciting and exhilarating time. Oftentimes people discuss issues along the lines of finances, space, school districts, career trajectory, etc… The logistics that will have an impact on whether or not you are ready for this next step and/or what you need to do to get ready. Once you’ve covered all the bases, then comes the fun part, “trying” for baby.  This is how we imagine it goes for most people, but of course it’s never that easy and in the case of a young cancer patient or cancer survivor, “trying” for baby can take on a whole new meaning.

Earlier this month, Gilda’s Club Chicago launched a new group to address the specific issues cancer patients and survivors face when thinking about starting a family. The group is called, “Starting a Family after Cancer,”  and it’s held the first Thursday of every month from 9:30-10:30am on the 5th floor of Prentice Women’s Hospital in the Supportive Oncology Suite.  The group is facilitated by Rebecca Fritz, LCSW from Gilda’s Club Chicago and Kristin Smith, Fertility Preservation Patient Navigator for the Oncofertility Consortium.

According to Rebecca, the sessions will involve a 30 minute presentation on different topics each week, followed by 30 minutes of open discussion. “We encourage anyone who has an issue around oncofertility to come – young people interested in fertility preservation before beginning treatment, an adult survivor thinking about thawing out an embryo or an adult who wants to start a family and is interested in adoption…” The program was developed with a lot of flexibility to ensure that as their following grows, each individual’s needs and concerns can be addressed.  “Starting a Family after Cancer,” provides a place not only for discussion, but also to share experiences and receive support from the cancer community.

The group welcomes walk-ins, but encourages registration to make sure they have enough space and refreshments for all participants. Contact Kristin Smith at ksmith12@nmff.org if you would like to attend the next session on May 5th. To learn more about this group or other groups offered by Gilda’s Club Chicago, please visit www.gildasclubchicago.org.

Collaboration and Consistency in Oncofertility

Counseling cancer patients on their fertility options can be a complicated process. Clinicians caring for cancer patients bear the responsibility for making sure that their patients are well-informed and understand all of their options.  As treatment regimes evolve, determining whether or not an individual’s fertility will be compromised can be difficult. For those that elect to have fertility preservation, their options are specific to not only their treatment plan, but also the type of cancer they have, their age at the time cancer treatment begins and ends, pre-existing fertility, etc… There are also risks involved with the procedures required to acquire reproductive tissue as well as with IVF medications. Collaborative work and research as modeled by the Oncofertility Consortium, will help in establishing a set of guidelines specific to oncofertility patients that clinicians can use to help counsel them on their options.

Effectively treating the cancer is an oncologist’s first priority, but ideally they also initiate the conversation about fertility preservation with patients as well. Since current data in the field is often incomplete or limited, clinicians need to be careful not to solely rely upon that for their counseling sessions.  It’s important for clinicians to offer patients options for further discussion with someone who has expertise in reproductive medicine and assisted reproductive technologies (ART). Collaboration between the oncologists and the reproductive medicine specialists is the best way to make sure that a patient is receiving consistent information for their specific case and that they are being treated in a timely manner.  This collaboration also makes the entire medical team accountable to the patient’s treatment, both for cancer and fertility preservation.

In order to successfully ensure that a patient has been properly educated on all of their fertility preservation options, including all of the risks and the “unknown’s,” it’s recommended to implement a process for obtaining informed consent from an oncofertility patient. One way to do this is by following the American Society for Reproductive Medicine’s (ASRM) practice committee guidelines for counseling and consenting patients in regard to fertility preservation.  ASRM guidelines address experimental therapies, considerations for posthumous reproductive decisions, relationship changes (divorce), safety precautions and variety of other issues that are relevant to fertility preservation in oncofertility patients.  Referring to existing guidelines is helpful in achieving consistency; however, as the field of oncofertility evolves collaborative work and research is needed to answer the remaining questions associated with fertility preservation and cancer.

To learn more about counseling and consenting oncofertility patients, please read, “Counseling and Consenting Women with Cancer on their Oncofertility Options: A Clinical Perspective,” by Emily S. Jungheim PhD, Kenneth Carson PhD, and Douglas Brown PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Post Cancer: Pregnancy, Adoption, and Infertility

Preparing to parent after cancer treatment can be both an exciting and a terrifying journey depending on what your experience with cancer was and what your current parenting options are.  A recent podcast entitled “Adoption or Infertility Treatment after Cancer,” broadcast by Creating a Family, a nonprofit providing education and resources for infertility and adoption, tackled this issue with a panel of four experts, including Irene Su, M.D., MSCE, Assistant Professor of Reproductive Medicine at University of California in San Diego (UCSD) and member of the Oncofertility Consortium. The panel spoke in depth about issues surrounding pregnancy, adoption, infertility and recurrence.

One topic that particularly stuck out in my mind was the discussion as to whether or not attempting to become pregnant after treatment increased a cancer survivor’s chance of recurrence, specifically with hormone related cancers such as breast cancer.  According to Dr. Su, “most studies show that there is not an increased risk for recurrence; however, the majority of oncologists would suggest that a patient wait until they are out of the recurrence stage before attempting to get pregnant.” Beyond the clinical aspect of this issue, is the personal. The fear that many women have of recurrence if they were to get pregnant, regardless of what science suggests. After having been through such a traumatic and life changing experience, not every woman is emotionally prepared to invest in a pregnancy. Those that do make that decision should consult with both a high-risk obstetrician and a reproductive endocrinologist to insure that they are in the care of health professionals that understand the specific issues relevant to cancer survivors.

An alternative for cancer survivors interested in having children, but not wanting to attempt pregnancy or being left infertile as a result of treatment, is adoption.  Adoption can sometimes be a little more complicated for cancer survivors because not all adoption agencies allow cancer survivors to adopt for fear that the child will lose the adoptive parent to the disease or that the parenting experience will not be optimal due to the possibility of recurrence. Other adoption agencies have specific guidelines for how long an individual has to be cancer free before they are eligible to adopt. For example, in Korea there is a five year wait and in China, the waiting period is 10 years without recurrence before you are eligible to adopt. Many domestic adoption agencies have a shorter wait time, but ultimately it is determined on a case by case basis. In 2010, members of the Oncofertility Consortium performed an analysis of domestic and international adoption agencies as they pertained to cancer survivors and then compiled a list of cancer-friendly adoption agencies that survivors could refer to when researching their options.

As a result of the complicated dynamics involved with parenting post cancer, it’s important for newly diagnosed cancer patients to know their options in terms of fertility preservation before beginning treatment. According to Dr. Su, “there are no exact studies about infertility and cancer, just a strong idea about likelihood,” so it’s important to be well-informed about fertility preservation and your specific options. There are many different roads to parenthood, but the more informed you are, the better off you’ll be. To listen to this podcast, go to http://www.creatingafamily.org/radioshow.html.

Deciding Your Future in Cancer’s Wake

Young cancer patients who choose fertility preservation in the midst of a cancer diagnosis reveal their belief in a future for themselves and in their body’s ability to create life even when faced with death. Oncofertility technologies offer possibilities to cancer patients asking them to contemplate creating life during a time when their own is in question.  This changes the road to parenthood in some ways, yet the overwhelming desire to create a future for oneself remains the same. Understanding this innate desire can help healthcare practitioners be more prepared to guide their patients in the decision-making process.

Even if a cancer patient chooses fertility preservation, there are no promises that they will later become parents so what drives the decision-making process if there are no guarantees? Some suggest that the hope for a future and new life embedded in the idea of fertility may negate many of the painful feelings associated with cancer. This idea of an “imagined” future allows the patient to confront their current diagnosis and the dire circumstances surrounding it with a renewed sense of hope and determination. Fertility preservation can become a coping mechanism for cancer patients allowing them to see a life post-cancer.

Although some may argue that it is irresponsible to pursue fertility preservation if you are not prepared to be exceptional parent in that moment, choosing fertility preservation doesn’t necessarily mean that you are choosing to be a parent. It means you are choosing to have options. It means you are protecting your right to have a biological child when and if you decide that it is right for you. For adolescents, it may mean you are placing value on your future and your imagined self as an able and fit parent.  In studies, researchers have found that an individual’s capacity to aspire to a healthy and positive future is often linked to their current well-being.

In order to provide the best possible care for cancer patients seeking fertility preservation, the healthcare community needs to understand the decision-making mechanisms underlying those choices.  It may be the innate desire to have a child or it may be a method for creating future goals and setting the stage to achieve those goals. Either way, they need the proper support and guidance to navigate the intersection between life and death. To learn more about this topic, please read “Choosing Life When Facing Death: Understanding Fertility Preservation Decision-Making for Cancer Patients,” by Shauna L. Gardino, PhD and Linda L. Emanuel, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Cryo 2011: Refining Fertility Preservation

Many young cancer patients prior to treatment undergo fertility preservation applications that utilize cryopreservation techniques such as egg banking, embryo banking and sperm banking. On July 24th – 27th, the 48th Annual Meeting for the Society of Cryobiology will be held at the LaSells Stewart Center on the campus of Oregon State University in Corvallis, Oregon.  Essentially, this is a meeting of scientists who study the biophysics and applications of freezing and thawing cells (human cells, plants cells, blood cells, etc…) to be thawed out later and used for various applications.  Cryobiologists attempt to get water outside of cells and instead fill them with cryoprotectants and then do the opposite process when they thaw cells or tissue out.

One of the Consortium’s members, Mary Zelinski, PhD is helping to organize a symposium on cryobiology in assisted reproductive technology with Steve Mullen, PhD speaking on oocyte cryopreservation. Steve Mullen is a scientist at 21st Century Medicine and trained in both cryobiology and reproductive physiology. According to Dr. Zelinski, “he understands both fields which is rare and this is a gap in training that would benefit fertility preservation.”

The Society of Cryobiology in general is small because few people work solely in cryopreservation as a career.  Cryo 2011 is an important conference because it’s essential to get the individuals who understand the physics behind cryopreservation together to work with other scientists in related fields.

The conference will have 7 keynote speakers on various topics including, anhydrobiosis and oocyte cryopreservation. The conference is also offering a limited number of student travel awards to offset the cost of travel, lodging and meeting registration fees.  To apply for a travel award, a student must submit an application form by April 25, and participate in one of the student presentation competitions. Finally, organizers of the conference are calling for abstracts. The deadline for submission is May 2nd. For more details on Cryo 2011, go to www.cryo-2011.org.

Gilda’s Club Chicago: Creating Community Through Cancer

Cancer is a disease that touches many people’s lives both directly and indirectly thereby creating a need for community based cancer support organizations. One such organization, Gilda’s Club, opened their signature Red Door in 1995 and since then, has been fostering a community of free support for men, women and children living with cancer as well as their caregivers and friends. What sets Gilda’s Club apart from other organizations is their unique ability to recognize and respond to the needs of the local cancer community through innovative programming.  Gilda’s Club Chicago was initially focused on bringing the cancer community together in their home-like clubhouse in the River North neighborhood, but within the last two years, the organization expanded their program to Chicago hospitals, creating their own unique niche in cancer care.

Gilda’s Club Chicago’s hospital initiative began out of need to bring cancer support services to individuals who might not be able to easily access the clubhouse.  This original program provides networking, support groups, workshops, education and social activities for patients, survivors, caregivers and friends at several local hospitals.  Outreach Coordinator, Amy Coleman said that the main goal of the hospital initiative was to continue “creating community by bringing people together.”  Currently the program at the Lurie Cancer Center has approximately 20 hours of programming which include yoga classes, T’ai Chi, arts and crafts as well as networking groups on such topics as “Parenting with Cancer,” and “Starting a Family After Cancer.” Coleman also said that in the next few months, they’re hoping to increase their presence at Lurie.

Another great benefit of the hospital initiative is the convenience it provides to patients, caregivers and friends. Oftentimes patients find their way into the programs offered through Gilda’s Club while they are waiting for their appointment. According to Amy, “you’ll often find patients in here with their buzzers participating in a session while they are waiting to be called in by the doctor.” Parents undergoing cancer treatment can also bring their children to some of the workshops which provide a great alternative to sitting in the waiting room as well as one less thing a parent has to be concerned about in an already strenuous time.

To find out more about what Gilda’s Club Chicago has to offer, including programs and events for young adults with cancer, please visit the website at www.gildasclubchicago.org. Their hospital programming can currently be found at:

 

Male Fertility Preservation: More Than Just Sperm Banking

Fertility preservation for men is a usually a relatively straightforward process involving the collection of a sperm sample and cryopreserving it for later use. While this procedure works for many individuals, it isn’t an option for everyone, including boys who are too young to produce sperm or male cancer survivors whose fertility has already been affected by cancer treatment. Two techniques may help meet their needs.

Previously it was assumed that most male survivors of cancer whose semen contained little to no sperm were incapable of fathering children, but a new surgical technique called microdissection testicular sperm extraction (TESE) can give these men a new way to achieve fertility.  TESE enables doctors to extract healthy sperm cells from men whose testicles have been severely damaged by chemotherapy. Once the sperm is extracted, an in vitro fertilization technique is applied to fertilize an egg, potentially resulting in pregnancy. Much of the success rate of sperm retrieval was determined by the type of chemotherapy the men received, with men being treated for testicular cancer being the best candidates for this procedures and men who were treated for sarcoma, having the lowest success rate.

In addition to sperm extraction as a male fertility preservation method, new research suggests that boys could have testicular tissue removed and kept in storage for later use. In a recent study, scientists grew mouse sperm in a laboratory from testicular tissue that had been frozen for up to 25 days. Researchers cultivated small pieces of tissue from the testes of baby mice on a gel steeped in nutrients and after several weeks, they collected viable sperm from the tissue. The mouse sperm appeared to be healthy and produced 12 live births of mouse pups that went on to have young of their own. Thus far, this has been the most successful attempt to grow sperm from testicular tissue in the laboratory acting as a potential stepping stone to the creation of human sperm in the future.

It is important that men know all their fertility options when faced with cancer or a disease whose treatment may compromise their ability to reproduce. These techniques may give men and young boys the potential of parenthood.

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