Category » Oncofertility

Some Thoughts on Judaism and Fertility after Cancer

Religion and oncofertility strive to maintain an open and mutually beneficial dialogue in order to meet somewhere in the middle.  Oddly enough, science and theology often overlap, albeit outside of the lab, so it’s important to bridge any gaps that may exist in the current debate surrounding reproductive technology and certain faiths.  The benefits that fertility preserving techniques can have on the quality of life of a cancer patient needs to align with their religious beliefs if that proves to be an issue in their decision-making process.

One of the many religions that are open to the relationship between science and faith is Judaism. Judaism, specifically Orthodox Judaism, has many different movements that adhere to common principles.  One key feature that these different movements share is their dedication to both the written and the oral Torah. The Torah refers to the first 5 books of both the Jewish and Christian bible and Judaism teaches that the Torah is of divine origin and represents the word of G-d. (In this blog, we will practice the Jewish custom of spelling G-d as a measure of respect for the religion, which comes from the tradition of never spelling the Hebrew equivalent of the name).

The Torah contains 613 miztvot, or commandments, with the first stating to “be fruitful and multiply.”  One of the hallmarks of orthodoxy is that it encourages intellectual questioning in order to live morally and ethically in a way that G-d requires of his followers. Thus, one could presume that for an Orthodox Jew facing a cancer diagnosis, it is a religious obligation to preserve their fertility and their ability to bear children – that science and religion are not in fact in conflict, but working together to sustain G-d’s commandment, “be fruitful and multiply.”

According to Sherman Silber, MD, in “Judaism and Reproductive Technologies,” even the  “strictest orthodox Jewish theology maintains that the Torah is not in conflict with reproductive technologies…for cancer patients of reproductive age, Jewish law ultimately requires every effort to safeguard the possibility for future parenthood.” This even holds true in some cases of gamete donation, specifically ovarian tissue cryopreservation. In Judaism, religious leaders may not encourage egg or sperm donation because their use may be seen as breaking the marital bond; however, ovarian tissue donation is allowable because “the egg is being ovulated within the body of the intended mother.”

Many followers of Judaism agree that mankind needs to find it’s way to G-d through intellectual reasoning and mindful conflict resolution, in order to live their lives the way G-d intended. From that we can deduce that Judaism, although not aligned with all fertility preservation techniques, engages in an open and thoughtful dialogue with the science of oncofertility To learn more about Judaism’s relationship with reproductive technologies, please read Sherman Silber’s, “Judaism and Reproductive Technologies,” in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

 

Ethical Implications of Investigational Fertility Preservation Research

The goal of oncofertility is to preserve the future fertility of cancer patients and ensure they have reproductive choice after they’ve finished treatment. Not all methods of fertility preservation are considered “established” techniques meaning they are viewed as experimental and must be offered under Institutional Review Board (IRB) protocols (an IRB is a committee that has been designated to approve, monitor, and review biomedical research involving humans in order to protect the rights and welfare of the research subjects).

Oocyte and ovarian tissue cryopreservation are two separate techniques that still need basic and clinical research before they can become established methods of fertility preservation. As a result, research participants are needed for the use of oocytes and ovarian tissue. This creates the question, “who is the most appropriate population to participate in investigational fertility preservation research?”

Populations who have participated in research or who have been suggested as good potential participants are: cancer patients, fertility patients, women who are already donating oocytes for reproduction and healthy research volunteers donating oocytes or ovarian tissue for the sole purpose of research.  Each group comes with their own ethical and theoretical challenges, but for the sake of time, we’ll focus specifically on cancer patients.

In the case of ovarian tissue cryopreservation, researchers rely primarily on cancer patients for ovarian tissue, allowing patients to donate up to 20% of their ovarian tissue for research purposes. According to Michelle McGowan, PhD, in “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” there is a concern that cancer patients who participate in investigational fertility preservations studies “may raise the potential for false hope both for fertility preservation and for cancer treatment.” McGowan argues that even though cancer patients are in a position to benefit from the outcomes of the research, they are also the most vulnerable because they may not understand that a technique is still considered investigational.  This means that there is a possibility they may remain infertile after the procedure.

Nonetheless, while there are certain drawbacks associated with each potential research participant population, cancer patients are the most ideal candidates for research since they are the ones who will benefit from their outcomes the most.  Healthy research participants risk damaging their reproductive health by participating in investigational fertility preservation research whereas a cancer patient’s fertility is already at risk so participation may be the best option for preserving their future fertility.  To learn more about the ethical implications of participation in fertility preservation research, please read, “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” by Michelle McGowan, PhD., in Oncofertility: Ethical, Legal, Social and Medical Perspectives. To learn about joining a research study involving ovarian tissue cryopreservation, contact the national FERTLINE at 866-708-FERT (3378).

SHARE: Support Services for Women Affected By Breast or Ovarian Cancer

Here at the Oncofertility Consortium Blog, it’s important to us that our readers who may be diagnosed with cancer or know someone that is, have a wealth of resources to tap into for support. A cancer diagnosis often leads to questions and concerns throughout the trajectory of the disease. Having organizations and support services readily available can be invaluable to a cancer patient.

One such resource is a long-standing organization founded in the late 70s, called SHARE (Self-Help for Women with Breast or Ovarian Cancer). SHARE’s mission is to create and sustain a supportive network and community of women affected by breast or ovarian cancer. SHARE brings women with breast or ovarian cancer and their support network of family and friends, together with survivors to provide participants with the opportunity to receive and exchange information, support, strength and hope. SHARE’s work focuses on empowerment, education and advocacy to bring about better health care, an improved quality of life, and a cure for cancer.

SHARE supports, educates, and empowers people affected by breast or ovarian cancer. The organization helps people face their feelings and fears, communicate effectively with their doctors, and make informed decisions about their health. All of SHARE’s services are free of charge, confidential, and provided by survivors. SHARE’s services include telephone support, educational programs, support groups, and public-health initiatives.

SHARE is managed by survivors helping people affected by breast or ovarian cancer and its support services and educational programs are provided in both English and Spanish. The organization also hosts Pink and Teal Seminars in which people learn about the risks, treatments, and early detection of breast and ovarian cancers from the unique perspective of survivors.

For a list of SHARE’s educational programs, including the support group, Young Women and Breast Cancer: Creating a Family After Cancer Treatment,  please click here. To learn more SHARE and the services they provide, please visit www.sharecancersupport.org.

GiveForward Makes Fertility Preservation Possible

It’s not uncommon for people to gift others with money on a birthday, or a graduation, at a wedding, etc.., but what about when people really need it? What about when people are in times of personal crisis?  Statistics show that 60% of all bankruptcies are a result of medical costs with most people unable to pay for emergency medical care even with the help of insurance. GiveForward, a fundraising website, was created to help individuals cope with a medical emergency with the financial and emotional support of family and friends.

GiveForward is a fundraising website which allows it’s users to create secure, fundraising webpages to raise money for emergency situations. The majority of fundraising pages are created to cover medical costs with 60% of beneficiaries fighting cancer. According to Ariana Vargas, Development Associate with GiveForward, the organization seeks to empower the friends and family of a loved one going through an illness to provide both emotional and financial support through a fundraising webpage. “It can be hard to know what to do or say when a loved one faces a medical emergency. GiveForward wants to help answer the question, ‘what can I do?’”

GiveForward provides support in addition to the fundraising tool available on the website to make the financial impact for the beneficiary more effective. Personal fundraising coaches are assigned to each individual in order to make the process as easy as possible considering all the stress the beneficiary is already under. Fundraising coaches help beneficiaries in a number of ways including, providing them with email templates to send out to family and friends when asking for donations as well as checking up with them throughout the process to give them tips and guidance for reaching their fundraising goals.

Several cancer patients have used GiveForward to raise money for fertility preservation procedures and Ariana is one of the members at GiveForward who helps them raise the funds they need in the short timeframe they have. She states that many cancer patients needing fertility preservation have discussed this with close family and friends so asking a family member to kick off the fundraiser with a substantial amount, really can set the tone for high donations. Like anything else though, “what you put into it is what you’ll get out of it,” so if you spend the time to personalize your fundraiser to those you are asking to contribute, you’re more likely to reach your goal.

This Sunday, August 7th, you can find the GiveForward fundraising team at the Susan G. Komen Breast Cancer Walk finish line at Soldier Field in Chicago, IL. They’ll be wearing gray t-shirts with a pink elephant encouraging people to start talking about the elephant in the room and erase the stigma behind asking for help. For more information or to see examples of fundraisers, including those for fertility preservation procedures, please visit www.GiveForward.com.

Cancer, Fertility, and the Big “D:” Divorce

Fertility concerns rank high among newly diagnosed cancer patients of reproductive age. There are several options available to patients interested in preserving their fertility before treatment begins. An often selected choice among patients with a spouse or a committed partner is embryo banking.

Embryo banking is an assisted reproductive technology (ART) procedure in which embryos are created by mixing an egg with “the best” sperm to form an embryo and then cryopreserving those embryos for future reproductive use.  Individuals must go through the proper legal channels to ensure that there is a trajectory for the embryos should they not use them. Currently their options are disposing of them, donating them to research or another individual or continuing to store them.

As one would imagine, deciding the fate of your embryos can be a complicated process. What may sound like an ideal solution to your potential infertility, does not come without a series of ethical and legal concerns that need to be addressed and resolved prior to undergoing any procedures.  While there are several ethical and legal scenarios that come into play, I’d like to focus on the issue of divorce. What happens to the embryos when a couple is no longer a couple?

I’d venture to say that most married couples, particularly those that are making the choice to bank embryos, are not thinking about the theoretical demise of their partnership. Having said that, with a divorce rate as high as 60% in some areas, this is inevitably a scenario that will be presented to a couple contemplating this procedure. It forces them to look into the future, even if only imaginary, and determine the fate of their embryos if divorce or separation were on the horizon.

If a couple decides to store the unused embryos, and then later divorces, what happens if one or the other partner wants access to those embryos? What happens if you no longer want those embryos to be used, but you former partner strongly disagrees? What if a couple decides to allow the use of the embryos regardless of separation and/or divorce, and then find themselves in a difficult divorce where they can no longer stand to be in the same room together, let alone ponder the idea of co-parenting? How can they decide together what will happen to their embryos if they can’t even decide who gets custody of the patio furniture?

It’s hard to imagine theoretical scenarios becoming a reality when you’re making important future decisions and you’re a united front. Still, it’s an important part of the process that’s put in place to safeguard both parties in the event you’re not in a space where you can make these decisions together anymore. To learn more about the ethical and legal dilemmas in oncofertility, please visit the Oncofertility Consortium’s Social Science and Humanities Projects.

Cancer Survivorship Programs: Beyond Treatment

As a result of earlier detection and improved treatments, cancer survival statistics have dramatically increased. Some survivors may live with cancer as a chronic disease requiring periodic treatments, while others may go into long-term remission. As many survivors have learned, recovery is often not the end of the cancer experience. Toxic cancer therapies can leave you with late effect health issues that require lifelong surveillance and recovering from the social, emotional and financial trauma of cancer is a process that doesn’t always end with the last treatment.

After years of focusing on treating cancer, researchers, clinicians and advocates are now recognizing the unique challenges that survivors face once treatment has ended. This need has resulted in a number of cancer survivorship programs being developed across the country, dedicated to providing comprehensive and sustained after-care specific to cancer survivors.  Many of these survivorship programs are also designed to meet the needs of pediatric and young adult cancer survivors, who because of their young age at the time of diagnosis, struggle with physiologic and psychosocial effects different from those of older cancer survivors.

One such program, the Survivors Taking Action & Responsibility or STAR program found at the Robert H. Lurie Comprehensive Cancer Center works in conjunction with the STAR program at Children’s Memorial Hospital in Chicago to meet the needs of adult survivors of pediatric cancer.  Patients are referred to the STAR program five years after diagnosis if they remain in clinical remission and are directed to a network of supportive services specific to this demographic. STAR program survivors have a number of concerns depending on their particular treatment regime which often include fertility questions. The STAR program links these survivors up with reproductive specialists, allied health professionals and support groups to help navigate family planning.

The Cancer Survivorship Program at The Children’s Hospital of Philadelphia (CHOP) is another program that recognizes the important issue of fertility as it relates to long-term quality of life. The Cancer Survivorship Program at CHOP is very invested in offering fertility preservation options to the patients and families who are seen in Oncology. Oncofertility Consortium member and Reproductive Endocrinologist, Clarisa Gracia, MD, MSCE, sees many of the individuals in this program to offer potential ways to preserve fertility and to discuss family planning for individuals whose fertility has been compromised as a result of treatment.

For more information about nationwide survivorship programs, please visit the National Coalition for Cancer Survivorship. You can also visit the National Cancer Institute for a list of additional survivorship resources, including publications, studies, and statistics.

Teacher Education Programs Spread the Oncofertility Message

Summer Teacher Fellowship Team (L-R): Mark Prosise (Curriculum Developer), Amy Elliott, Kari Bodine, Miranda Bernhardt (Lab Coordinator), Sowmya Anjur, Kristen Perkins (Curriculum Coordinator), Nadia Reynolds (Fellowship Coordinator); not pictured: Qurrat Waheed. Photo by Eugene Galdones.

By Nadia Reynolds – The Oncofertility Summer Research Fellowship (OSRF), a program that brings science teachers and college undergraduates into the Woodruff Lab, was initiated in 2009 with the support of a two-year American Recovery & Reinvestment Act grant.  For the past three years, high school biology teachers and Oncofertility Saturday Academy (OSA) alumnae have been hired to work in the Woodruff Lab over the summer, through the OSRF program.  Two teachers and two OSA alumnae participated in 2009, and five teachers and three OSA alumnae participated in 2010.

This year, OSRF was supported by the main Oncofertility Consortium grant, and four teachers were selected to participate in the program.  The teacher fellows included: Sowmya Anjur, a veteran teacher for Illinois Math & Science Academy, Qurrat Waheed, a new teacher at Westinghouse College Prep, and Kari Bodine and Amy Elliott, both teachers at Lakes Community High School.  The teacher fellows learned about the science behind fertility preservation, the bioethical issues surrounding the field of oncofertility, and participated in the development of new high school science lab modules called the Northwestern University Biology Investigations in Oncofertility, or NUBIO.

NUBIO includes a set of labs that were developed via a collaboration between local high school teachers and researchers in the Woodruff Lab in an attempt to teach students basic biology skills and advanced biotechnology techniques through the context of cancer, reproductive science, and oncofertility.  The teacher fellows expanded upon the already developed NUBIO labs as individual summer projects, which included new units on cancer, bioethics, and patient case studies.

OSRF was a huge success this year, and we wish all of our teacher fellows the best as they return to their schools in the fall to pilot NUBIO!  And next week we welcome the OSA alumnae student fellows into the lab!

Supportive Oncology for Comprehensive Cancer Care

Yesterday I had the opportunity to tour the Supportive Oncology Suite with our Fertility Preservation Patient Navigator, Kristin Smith. The Supportive Oncology Suite is part of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University’s Maggie Daley Center for Women’s Cancer Care, located within Prentice Women’s Hospital. Prentice already has a reputation for being a first class facility with great technology and of course, an amazing view of Chicago’s lakefront.  Fortunately, I was able to see what all the fuss was about once I stepped out onto the 5th floor and made a quick right into the space Kristin calls her “office.”

Once inside and past reception, I entered what is called the Healing Boutique. This relaxing atmosphere has a wall of windows looking out onto Lake Michigan with 2 chairs set up in front of a large mirror. It’s a space where cancer patients who have lost their hair to chemotherapy can come in and get a free wig fitting courtesy of the American Cancer Society. It’s also a space where patients can come in and find more holistic resources for cancer care. They can select from a variety of calming music to borrow while they are receiving their treatment in the infusion suite or several cookbooks to take home geared toward cancer patients, selected by a certified dietician. Patients can also just come here to relax or meet with the supportive oncology staff which includes psychologists, physical therapists, nurses and patient navigators.

Down the hall is a massage and acupuncture room where patients can receive up to 5 free treatments from a certified masseuse and/or acupuncturist. Often patients receive these services in the infusion suite while they are undergoing chemotherapy treatment. Across from that room are 2 offices housing psychologists that meet with cancer patients and survivors to discuss any questions, concerns or issues that they may be struggling with or need additional support with, including fertility concerns.  Finally, as you reach the back of the suite, there is a rehabilitation room where cancer patients can come every Wednesday and receive help with health issues such as lymphedema, a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling. The Supportive Oncology suite serves as a one-stop-shop for cancer patients who can visit with their oncologist and receive rehabilitative services in the same place.

The 5th floor, Supportive Oncology suite also houses weekly group meetings sponsored by Gilda’s Club Chicago for patients, survivors, family and friends. In addition, the dieticians in the supportive oncology suite will be starting a weight management/weight loss group beginning after Labor Day.  It will be an 8 week structured program focusing on healthy diets, exercise, food preparation and gradual, sustained weight loss open to any patients at Northwestern Memorial Hospital and may be of particular interest to cancer patients and survivors with fertility concerns.  Make sure to stop by and visit this great resource if you are in the Chicago region or visit the American Cancer Society to find resources in your own area.

Family Planning Post-Cancer: Reproductive Options

Planning a family post-cancer can be a complicated process if a patient’s fertility was compromised during their cancer treatment. Depending on a cancer survivor’s prior treatment regime and subsequent fertility options, a number of family planning options may be available to them.  I spoke with Angela Lawson, PhD, a Psychologist at Northwestern Memorial Hospital in the department of Reproductive Endocrinology to learn more about what reproductive options are available to cancer patients who have been left infertile as a result of their cancer or cancer treatment.

One option for women who have banked eggs prior to cancer treatment or whose ovaries are still intact, but do not have a functioning uterus, is to use a gestational carrier. A gestational carrier or surrogate is implanted with an embryo, to which she may or may not have a genetic relationship with, and then carries the fetus to term. Once the baby is born, he/she is then legally placed with the intended parents where they then sign their names on his/her birth certificate.

Individuals can either go through an agency to find a gestational carrier or they can choose someone they know, possibly a friend or family member. Going through an agency can cost upwards of $100,000 with costs to the carrier, the agency, insurance and IVF to stimulate egg production. Going with someone you know is less costly and often makes people more comfortable knowing they have a personal relationship with the carrier that precedes the surrogacy. Personal relationships can lead to more emotional implications – the surrogate should feel comfortable giving the child to the intended parents knowing they will remain in the periphery of his/her life. Check out our blog, Delivering Hope, to learn more about one family’s incredible experience with surrogacy.

An option available to women who do not have the use of their own eggs, but can carry a fetus, is egg donation, whereby the cancer survivor follows a similar selection process as they would if they used a gestational carrier. Often, the medical community prefers the recipient use an anonymous donor rather than use donor eggs from someone they have a personal relationship with. This prevents complications that can arise in the event that the egg donor experiences any complications later in life which may impact her fertility before she has the opportunity to parent a child. If using an agency, egg donation is currently entirely anonymous.

All potential gestational carriers and egg donors go through a rigorous medical and psychological screening to ensure that they are being honest about themselves, to ensure they are stable and that they are not at risk for emotional vulnerability which can pose problems once the child is born. According to Dr. Lawson, about 50-75% of surrogacy and egg donor arrangements make it through the screening and move forward with the process.

If egg donation and surrogacy are off the table, adoption is always a great option too.  Having a history of cancer can make the process a little more challenging as not all agencies will adopt to cancer survivors. Sometimes either the agency or the birth parents are concerned about cancer recurrence and the subsequent repercussions to the adoptive child. Bearing this in mind, the Oncofertility Consortium compiled a list of cancer-friendly adoption agencies for survivors interested in navigating this option.

For more information on your reproductive options post-cancer, please contact our Fertility Preservation Patient Navigator, Kristin Smith, to learn more about resources in your area.

Foundation for Women’s Cancer: Working to Eradicate Reproductive Cancers

This year at American Society of Clinical Oncology Conference we met so many great advocacy groups who are invested in the cancer community whether through programming, research, outreach or education. Often we look to specific groups who specialize in a particular area of cancer care to provide us with information. On this occasion, we happened to meet with a group who does it all – The Foundation for Women’s Cancer, formerly known as the Gynecologic Cancer Foundation.

Celebrating its 20th anniversary in 2011, the Foundation for Women’s Cancer is an organization dedicated to expanding public awareness, education, research and training to improve the prevention, early detection and optimal treatment of gynecologic cancers such as ovarian, cervical and uterine cancer.  This national organization is dedicated to the eradication of all reproductive cancers through three unique programs:  research, awareness and survivorship.

The Foundation for Women’s Cancer has three primary research objectives to positively impact cancer care; their first mission is to support young scientists who are interested in pursuing a dual career path in both research and clinical care. The second is that they provide young scientists with seed money (averaging between $25,000-50,000 per year) to set up laboratories and find governmental funding to expand their research. The third directive is that their research should contribute in new and innovative ways to cancer research and care.

The Foundation for Women’s Cancer focuses on ovarian, cervical and uterine cancers and provides classes for survivors on Saturday’s throughout the nation, led by leading gynecologic oncologists. In these classes, survivors can get the latest information about their particular disease and its effects, including fertility options. Specifically with cervical cancer affecting predominately young women of reproductive age, fertility is an important concern for patients.

To learn more about the Foundation for Women’s Cancer, visit www.foundationforwomenscancer.org. You can also see a list of upcoming Saturday Survivorship courses to find out if  any will be in your area. Finally, on November 6th,  the National Race to End Women’s Cancer fundraising event sponsored by the Foundation for Women’s Cancer will be held in Washington D.C. with all proceeds going to cancer research. Click here to get more information or to register.

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