Category » Fertility Preservation

October 2nd: The Lynn Sage Breast Cancer Town Hall Meeting

According to the American Cancer Society (ACS), a woman in the United States is diagnosed with breast cancer every three minutes. This breaks down to a 12 percent, or 1 in 8, lifetime risk for women of developing breast cancer in the U.S. and right now, there are about two and a half million breast cancer survivors. Chances are, those of you who are reading this blog have been affected by breast cancer either personally or indirectly, through family and/or friends who have been diagnosed.

For those of you with questions about breast cancer treatment options, family history, diagnosis and support services, the Lynn Sage Breast Cancer Town Hall Meeting will take place on Sunday, October 2nd at Northwestern University’s Chicago campus. It is an interactive discussion with Northwestern healthcare providers, providing you with an opportunity to have your questions answered by experts, learn about local and national support networks and meet with breast cancer advocacy groups.

Among the expert panel of healthcare providers will be our own, Kristin Smith, answering any questions you may have regarding fertility preservation and fertility options prior to and following cancer treatment. Joining Kristin will be a panel consisting of a cancer geneticist, radiation oncologist, survivorship and support expert, and a surgical oncologist. It’s a great venue to get more information and meet others, who may have gone through or are going through, a similar experience with breast cancer.

The town hall meeting is a free event and open to the public. There will be ample time provided for attendees to ask questions and get answers from our expert panel so come prepared with your most pressing concerns. For more information, including registration and directions, please visit www.cancer.northwestern.edu or call 312.695.1304. Walk-ins are always welcome so don’t let a little thing like registration hold you back! The most important thing is that you join us and get the answers and support you need.

Introducing the FIRST Fertility Registry for Cancer Survivors

One out of 48 women will develop invasive cancer before age 40. Many young women will survive their cancer treatment and live long lives that include decisions on building a family.   Currently, there is a lack of data on the long-term reproductive outcomes in young women after cancer treatment. Investigators at the Oncofertility Consortium recently launched the first long-term study to investigate the reproductive impact of cancer treatments on women. The Fertility Information Research Study (FIRST) is a registry project that will collect this information from and for female cancer survivors.

We are happy to announce that women who want to participate in science and help the next generation of cancer patients can now be a part of this study. Any woman between 18 and 44 who is less than three years from a cancer diagnosis or treatment can sign up for the study. Interested women can call the FERTLINE (866-708-FERT [3378]) or contact the study team by email (ayastudy@ucsd.edu) to learn more about the study.

Participants will be asked to complete an online questionnaire yearly that will assess a variety of women’s health outcomes, from fertility to abnormal periods to premature menopause. This information will help researchers learn the scope of reproductive problems after cancer with just a few minutes of effort each year.

If you are a young woman who has had cancer or cancer treatment, or know women who are, please think about signing up for the FIRST Registry by calling the FERTLINE at 866-708-FERT (3378) or contacting the study team at ayastudy@ucsd.edu.  With your help, we can help guide counseling and treatment of future young women.

Upcoming Cancer Rights Conference: Washington DC

In June this past summer, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for a one-day conference event kicking off their 2011 Cancer Rights Conference series. It was a great success and provided many attendees with valuable information regarding cancer-related legal and financial issues. One attendee at the conference said: “This program was awesome. Everything presented was valuable information. As a cancer survivor it is comforting to know there is someone out there looking out for us. Thank you so much CLRC for all you do. You make a difference in our lives!”

On September 23rd, the 2nd CLRC Conference is being held in Washington DC and there is still time to sign up for this informative and FREE event. The conference will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit www.CancerRightsConference.org to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.

Fertility Preservation and Motherhood

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

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

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

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

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

Fertility Preservation: Childless by Choice

We hope that all patients of reproductive age who are diagnosed with cancer have the opportunity to discuss oncofertility with their provider shortly after diagnosis. This conversation should include the options, risks, benefits and various outcomes of available fertility preservation techniques. Oncofertility decisions can have a big impact on a cancer patients life, both in the moment and as they move forward through treatment, recovery and remission.

One aspect of oncofertility decision-making that needs to be explored is the impact the actual conversation can have on a newly diagnosed cancer patient. This discussion may have a significant effect on patients who were previously ambivalent or not interested in having biological children.  What was not an issue in this individual’s life prior to their diagnosis may now become something with which they struggle.  It’s true that not everyone plans to have children and what you may feel in your mid-20s could certainly change as you age and your life circumstances change. Nonetheless, men and women often make a conscious decision not to have children.

Discussing fertility preservation may lead a cancer patient to struggle with a decision that was already made prior to their diagnosis because they feel it should be important to them.  A cancer patient’s journey is complex and although fertility preservation options provide so much hope and joy to some, it can be a mixed blessing for others.  According to Leonard Sender, MD in “Reading Between the Lines of Cancer and Fertility: A Providers Story,” “having children is no longer a default expectation of becoming an adult, or even of getting married.” Thus, a provider shouldn’t assume that just because a patient can have children, doesn’t necessarily mean they want to.

For a newly diagnosed cancer patient, all the decisions they make will have a big influence on their lives from the point of diagnosis onward.  It’s important for providers to consider that not all patients want fertility preservation and that these decisions may have been weighed and assessed long before the cancer diagnosis, not because the patient is focused on other aspects of their treatment. To read more about this, including a case study of a cancer patient who chose not to pursue fertility preservation, please read “Reading Between the Lines of Cancer and Fertility: A Providers Story,” by Leonard Sender, MD in Oncofertility: Ethical, Legal, Social and Medical Perspectives

 

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).

Fertility Preservation: It’s a Small World After All

Recently I dipped my foot into the real estate market and began looking for a place we could call home. I followed all the steps that most anyone else would: I hooked up with a real estate agent (*Todd), I began scouring all the listings in my price range and after a few visits to “the house”  I sent a text to Todd and said, “I’m ready to make an offer.” Within an hour, he was at my door and ready to draw up a contract.

We sat down at the table and began to fill out the contract making idle chit chat along the way. He asked me what I did for a living and it dawned on me that over all this time, I had never shared my occupation with him.  It seemed kind of strange that this was the first time it had ever come up. “I work at the Oncofertility Consortium at Northwestern University.” He gave me sort of a strange, but knowing look and I told him that oncofertility was essentially fertility preservation for young cancer patients.  Well little did I know that we had more than real estate to talk about…

Without going into the play by play of our entire conversation, I’ll give you the abbreviated version: Todd was diagnosed with testicular cancer at the age of 18, he underwent fertility preservation before he began treatment for his cancer, and now in his mid 30s, he and his wife have two children through ART with the help of our own Dr. Kazer at Northwestern Memorial Hospital.  Small world!

Todd shared with me the awkward moment when his oncologist at Elmhurst Hospital discussed fertility preservation with him shortly after diagnosis while he sat there next to his mother. “I would have said yes to anything she asked just as long as she stopped discussing this with me in front of my mother!”  Ultimately though, at 18 years of age, Todd made the decision on his own (albeit out of a sense of urgency to quickly move on to the next topic) to bank sperm and preserve his future fertility.

Luckily for Todd, he had known his wife since his cancer diagnosis so she knew right off the bat what it would take for them to have children someday, and she was onboard.  Fast forward 15 + years later and Todd has a three year old and a one year old that he never could have imagined at 18 would be so intrinsic in his life and in his marriage.  “I’m so glad I did that, that someone talked to me about it and gave me options because you’re not thinking about it in that moment.” Maybe Todd wasn’t, but thankfully for him, someone else was.

Fertility Preservation for Endangered Species

In this blog, Mary Zelinski, PhD continues her reports from the annual meeting of the Society for Cryobiology held in Corvallis, Oregon, July 24-27. In this post, she relay’s the findings of Dr. Pukazhenthi, on the importance of fertility preservation for endangered species. Read the first and second posts on Cryo2011 here.

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By Mary Zelinski, PhD-Dr. Budhan Pukazhenthi, Reproductive Physiologist at the Center for Species Survival, Department of Reproductive Sciences, Smithsonian Conservation Biology Institute, gave a fascinating presentation on “Cryopreserving Endangered Species Gametes, Embryos and Gonadal Tissue:  Challenges, Successes and Future Directions.”  He noted that the field of cryobiology has long been touted as a valuable tool for the conservation of endangered wildlife species, and that in the last 25 years cryobiology has gradually emerged as a contributing science to the field of conservation.  The systematic collection, storage and use of biomaterials, i.e. “Genome Resources Banking”, has yielded a dynamic repository of biological specimens being used to enhance genetic management of sustainable populations.

He outlined four specific challenges facing reintroduction of genetic diversity into future generations of wildlife:  1) limited fundamental knowledge about individual species, including the difficulty of collecting gametes from some species; 2) species diversity in gamete and embryo structure, function and cryosensitivity; 3) variation among donors; and 4) influence of lack of heterozygosity on cyrosurvival.  Since results from one species rarely translate to another, there is a critical need for continuous, species-specific cryobiological research.

Use of this overall approach has resulted in a number of conservation success stories that go beyond milestone births of one or two offspring from frozen sperm or embryos.  He cited examples such as the use of cyropreserved sperm for the past two decades in the recovery program of the black-footed ferret and the production of multiple litters of two felid species, Brazilian ocelot and caracal, from cryopreserved embryos.  He predicted that wildlife programs will benefit from fertility preservation strategies currently being developed for humans.  Initial efforts in cryopreservation of ovarian tissue, seminiferous tubules and testicular tissue, in follicle maturation and germinal-vesicle storage show potential for use in species conservation.

Dr. Pukazhenthi also noted that most cyro-tools are considered in the context of mammals, but that there has been significant progress in other taxa, including birds, amphibians and marine life.  His laboratory has made progress in cryopreservation of coral sperm and fish embryos.  He concluded by saying that an appreciation for Genetic Resources Banking is emerging beyond the immediate interest of cyrobiologists and reproductive biologists wherein cryobiology is not only being recognized as a method for storing and moving important genomes, but as an essential component of the ability to monitor genetic diversity and diseases in rare populations.

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Stay tuned next week to hear reviews of the final keynote speakers at this year’s meeting of the Society for Cryobiology or read the first and second posts on Cryo2011.

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.

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