Category » Oncofertility

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 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.

Penn Med Student Perspective on Oncofertility

Last week, the 2011 Oncofertility Consortium Conference: Priorities for Sustainable Oncofertility Research and Patient Care, was held here in Chicago. One of the more than 150 attendees was a University of Pennsylvania medical school student, Katie Dillon, who works with Clarisa Gracia, MD, MSCE on oncofertility clinical research. She wrote an article for Making the Rounds, a blog from the Perelman School of Medicine at the University of Pennsylvania, which we are posting here.


By Katie Dillon

A Trip to Chi-town for Science!

This past week I traveled to Chicago for the Oncofertility Consortium, an annual conference held at Northwestern to discuss advances in the field of fertility preservation for cancer patients. As mentioned in my previous post, I am currently taking a year out from medical school to conduct clinical research in infertility, my field of interest. Oncofertility is an area in which my mentor, Dr. Clarisa Gracia, specializes.

Dr. Christos Coutifaris, Katie Dillon, and Dr. Clarisa Gracia

The field looks at cancer treatments like chemotherapy and radiation that are toxic to the reproductive organs. For a long time these effects have been a medical afterthought, as the focus on survival after cancer diagnosis took precedent over other health concerns. But as improved cancer therapies result in better prognoses, it is necessary to consider the side effects associated with treatment. Specifically it is important to think about fertility preservation before cancer treatment begins so that patients may have options down the road for building families…Read more about Katie Dillon’s trip to the 2011 Oncofertility Consortium Conference.


View a new documentary about the Oncofertility Consortium‘s first five years, A Roadmap for the Future: Inquiry, Discourse, and Innovation in the Oncofertility Consortium, which was first premiered at the Oncofertility Gala last Monday evening.

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 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).

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

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

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.

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