Chicago Celebrates National Cancer Survivor’s Day

On June 5th, the 18th Annual Cancer Survivors Celebration & Walk is taking place in Chicago, IL, at Grant Park. This leisurely, non-competitive 4 mile walk is a family-focused, community awareness event dedicated to bringing together cancer survivors, friends and family, and all those who have been touched by cancer.  It’s an event to honor cancer survivors with food, entertainment, and an opportunity to sign the Dedication Wall – a 25ft x 50ft white wall with markers at the base of it allowing people to write messages to the cancer community (a message to loved ones lost, encouragement to participants in the walk, thanks to a doctor who has helped them, etc…).

Jennifer Bowker, Manager of Communications at the Lurie Comprehensive Cancer Center, and one of the organizer’s for this year’s Walk, spoke with me in detail about the upcoming event. “We hold the walk in conjunction with National Cancer Survivor’s Day and the definition of a ‘cancer survivor’ is from the moment of diagnosis, through the rest of your life, you’re a cancer survivor.” Ms. Bowker said that this is her favorite event because it brings people in the cancer community together and embodies a spirit of positivity and camaraderie. It’s also the largest event of its kind nationally, with 4,000 people expected to participate.

As participants progress along the walk route, they will pass a series of posters called The Faces of Cancer.  Each poster houses a picture of a cancer survivor and a brief quote from them.  It inspires those walking and encourages others in their fight against the disease. One of those Faces taking part this year is Jenna Benn.  She is a 29 year old Gray Zone Lymphoma survivor, who preserved her fertility prior to beginning her cancer treatment.  She is currently undergoing her 6th and final round of chemotherapy and is looking forward to participating in the Walk on June 5th. You can see a touching video about Jenna’s experience as a cancer survivor here or visit her blog, Kill it in the Butt! and read about how she made the decision to bank her eggs before starting chemotherapy.

The 18th Annual Cancer Survivor’s Celebration & Walk is a time to celebrate cancer survivors. It’s a time to honor those who are currently fighting the disease, those who are in remission and those we have lost to cancer. To register or for more information, visit the 18th Annual Cancer Survivor’s Celebration & Walk. This is not a fundraising event nor are participants required to walk the entire 4 mile course.  If you register for the walk online by June 3rd, it only costs $15, but there is registration on the day of the event costing $25.  Please come out and show your support for this amazing event!

Best Practices in Fertility Preservation Communication

The website, Get Inside Health: Your Exclusive Guide to Health and Well-Being, recently conducted an interview with Oncofertility Consortium member Gwendolyn Quinn, PhD, entitled “Preserving Fertility in Cancer Patients: Two Views.”  Dr. Quinn is a researcher at the Moffit Cancer Center and Research Institute as well as an Associate Professor at the University of South Florida. Dr. Quinn has conducted surveys of oncologist’s referral practices and in the interview she discusses her findings and gives recommendations for improved communication practices between patients and providers.

According to Dr. Quinn, because the percentage of young people surviving cancer has increased dramatically, providers need to focus on “quality survival” for cancer patients and this includes fertility preservation.  Dr. Quinn states, “patients have not routinely been asking about concerns about fertility, partially because they are unaware it’s even an issue and partially because they’re afraid to ask for anything beyond survival.”  This is exactly why it is up to the provider to broach the topic of fertility preservation, especially at a time when the patient may not be able to think beyond their diagnosis and initiate fertility preservation dialogue on their own.

Dr. Quinn also discusses the ASCO guidelines for discussing fertility preservation with patients and states that the guidelines are not meant for oncologists to pick and choose who they should have fertility preservation conversations with. The guidelines include all patients of reproductive age regardless of what their prognosis is. Recently there have been a growing number of families interested in posthumous reproduction if a patient does not survive their disease. Many oncologists acknowledge that they are not comfortable having fertility preservation conversations with patients who have a poor prognosis; however, Dr. Quinn argues that providers need to set their personal values aside and consider what the patients needs are.

Finally, Dr. Quinn discusses the role of the oncologist in the fertility preservation dialogue. She states that while it’s not their responsibility to have a full discussion with a patient regarding fertility preservation, it is their responsibility to let them know their options and then refer them to a reproductive endocrinologist. The full interview with Dr. Quinn, “Preserving Fertility in Cancer Patients: Two Views,” is available now.

Chicago Stupid Cancer Boot Camp: Oncofertility and Survivorship

One of my favorite things about working in the cancer community is meeting young adult cancer survivors. I have never met such an energetic group of people who deal with a life-threatening disease, beat that disease, and are committed to preventing other people from going through similar suffering. For those of you who have ever met Jonny Imerman or been to the Lurie Cancer Survivors’ Walk, you know what I mean.

I am proud to say that this summer, the Oncofertility Consortium will have the chance to participate in one such event with young cancer survivors, their caregivers, and providers. On June 23, the I’m Too Young for This! Cancer Foundation will hold their first-ever Stupid Cancer Boot Camp in Chicago, IL. The event will include a keynote talk by the Consortium’s own Oncofertility Patient Navigator, Kristin Smith, who will describe her experiences guiding young patients through fertility discussions before and during cancer treatment. She will also talk about the many reproductive options for survivors who did not preserve their fertility prior to cancer treatment.

The Boot Camp will include a panel of survivors to convey their own insights into life after cancer. These exciting athletes and professionals will discuss everything from health and wellness to dating and relationships.  And like all other young people, survivors need their own dose of fun so the evening event will also include quite a bit of “networking” in the club-like atmosphere below Hub 51 in Chicago’s River North neighborhood. Join hosts Matthew Zachary , Jonny Imerman, and the large number of community partners, to get educated and empowered about Oncofertility and Survivorship on Thursday, June 23 at 6:30 pm at Sub51 (51 West Hubbard Street) in Chicago IL. Register today!


Fertility Preservation across the Pond: Global Oncofertility

The medical community has known for a very long time that chemotherapy is disruptive to reproductive function and that young women undergoing chemotherapy have a greater chance of entering early menopause. In the 1970s, two articles were published acknowledging these two issues: Depletion of Growing Follicles and Premature Menopause, indicating a growing awareness among the scientific community that fertility preservation needed to be addressed. Since then, we have seen a steady increase in fertility preservation programs across the United States and the world.

Over the last 30 years in the United Kingdom, the survival rate for young adults with cancer has increased dramatically resulting in the current statistic that 70% of young people with cancer will survive 5 years or more after their last treatment.  In addition to that, the incidence of pediatric cancer has increased, requiring a closer examination of fertility impairments as a result of cancer treatment as well as preventative measures that can be performed prior to treatment to protect reproductive function. Over the last 10 years, publications in the UK addressing fertility preservation have more than doubled demonstrating a growing interest in this sub specialty, oncofertility.

A recent visitor to the Oncofertility Consortium, Dr. Richard Anderson, Professor of Clinical Reproductive Science at the University of Edinburgh, spoke at the Oncofertility  Virtual Grand Rounds yesterday and discussed how the fertility preservation program at the Queens Medical Research Institute is administered. Similar to the Oncofertility Consortium, Dr. Anderson states that good colleagues from diverse backgrounds are needed to ensure that a program runs smoothly. A set of criteria is also needed to determine which individuals are good candidates for fertility preservation. This is especially important in Scotland, where the resources (i.e., number of fertility treatments available) are limited by the federal health system. A functioning registry, which requires an effort from both the provider and the patient, is required to keep the links of communication open to ensure that the tissue is being properly handled.

Currently, the fertility preservation program in the United Kingdom does not have an organization similar to the National Physicians Cooperative, which Dr. Anderson argued would only benefit the success of the program going forward.  Through his visit we were able to share our experiences in this burgeoning field and gain insights into how we can work together on this intractable problem in an effort to address fertility preservation globally. A video of Dr. Anderson’s presentation entitled, “Fertility Perseveration: Where We Are, and How We Got Here,” is available now.


Cancer and Careers: Understanding the Professional Needs of Young Survivors

Younger cancer patients and survivors deal with a deluge of information during medical treatment. In addition to this new, almost full-time job, survivors also have to balance their professional lives. Many of the same young patients who must make fertility choices quickly after a cancer diagnosis also have to contemplate their career, such as the decision to tell employers about their medical status or take an extended leave from work.


In 2001, a group of executive professionals in the cosmetic industry got together and realized that many of them had received a cancer diagnosis. These career professionals had all modified their career paths without the support of others who had experienced similar barriers. They decided to form a new advocacy group, called Cancer and Careers, to empower and educate people with cancer and help them thrive professionally while also beating cancer.


Cancer and Careers now provides on-line, teleconference, and in-person career coaching to thousands of professionals. The group provides legal, financial, and organizational information to both survivors and their coworkers during cancer treatment. In addition they help survivors with resume coaching, such as explaining a gap in employment, during job hunting.


Cancer and Careers puts on local and national events for cancer survivors with job issues, questions, or just looking for a community of like-minded people. In a few weeks, the group will host an evening in Chicago for working women, The Beauty of Caring Event, to provide career, beauty, and wellness tips to these inspiring survivors. The event, on Wednesday, June 1 will provide guidance for women to look and feel as good as possible on the job.


Later in June, the group is holding their National Conference on Work and Cancer in New York City. The free meeting on June 17th will include sessions on legal issues (including health insurance), job re-entry, and a special discussion on the career challenges of young adults.

The Oncofertility Consortium: Building the Bridge across Disciplines

The Oncofertility Consortium was developed with the insight that a multidimensional approach would be required to solve the intractable problem of fertility loss in young cancer patients. By bringing together individuals with diverse backgrounds in basic science, the humanities and the social sciences, we could provide more comprehensive cancer care to young patients and better equip them with options for starting a family in the future. This engagement has been beautifully illustrated in a recent article written by Lisa Campo-Engelstein, PhD and Sarah Rodriguez, PhD entitled, “Two Chicks in a Lab with Eggs,” which describes some of their experiences as senior research fellows at the Oncofertility Consortium.

Both Lisa and Sarah agree “putting scientists and humanists ‘on the same team…’ established a level of camaraderie and trust from the get-go, thereby allowing professional relationships and projects across disciplines to flourish.”  What makes their experience unique, and I think, more substantial, is that Sarah is a historian and Lisa is a philosopher – neither are scientists, although they both worked in the Woodruff Lab. Their fellowships were part of a burgeoning academic movement that approaches education and learning from a multidisciplinary standpoint.

The idea that we can benefit from interdisciplinary work is not a new one, but the practice of actually seeing it done is relatively new and the results speak for themselves. Engaging in this kind of learning experience can only enhance our understanding of how other disciplines produce knowledge, which in turn changes how we produce knowledge in our own fields. In Sarah and Lisa’s experience, they stated that “by being embedded in the lab, we both learn[ed] more about reproductive science and enable[d] scientists in the lab to think about their work away from the bench.”

Even though the concept of knowledge exchange seems like a win-win for everyone, it doesn’t remove the stigmas we sometimes harbor for “other” disciplines. I myself worried how I would fit into this “scientific” community when I began working at the Consortium, but in the few short months I’ve been here, my perception of scientific work has changed and my own base of knowledge has grown. Sometimes you just have to jump into the unknown head first and do so with an open mind and a willingness to learn. You’ll soon find that we all have something to learn from each other.  To learn more about Lisa and Sarah’s experience as fellows at the Consortium, click here to read their article, “Two Chick’s in a Lab with Eggs.”

Fertility Preservation Then, Now and Going Forward

On May 16th, Richard Anderson, PhD, MD will be delivering an Oncofertility Virtual Grand Rounds entitled, “Female Fertility Preservation in Practice: Where We Are, and How We Got Here.” Dr. Anderson is a consultant at the Royal Infirmary of Edinburgh and a Professor of Clinical Reproductive Science at the University of Edinburgh. He specializes in infertility and reproductive endocrinology with particular interests in disorders of ovulation in women and male reproductive function. His presentation is a highly anticipated event at the Consortium and asks us to reflect on the impact the Oncofertility Consortium has had on fertility preservation in cancer patients over the last five years.

One of the many important resources provided by the Oncofertility Consortium is the National Physicians Cooperative (NPC): a nationwide network of Fertility Preservation sites that are strongly aligned with cancer centers serving children, men and women. The NPC was built to teach fertility specialists about the specific needs of cancer patients. These needs include an immediate need for fertility preservation in a short amount of time, patients that include adolescents and children, and treating individuals who may experience fertility complications from the cancer itself or due to treatment.  NPC sites are trained to provide individualized consultations and interventions for fertility preservation options. They also advance clinical care by participating in multicenter studies designed to improve fertility preservation methods and care delivery. When patients choose ovarian tissue banking at NPC sites, they can also contribute small portions of human ovarian tissue to a national ovarian tissue repository, providing an important resource for translational research that to develop new fertility preservation techniques for cancer patients. While the Consortium originally aimed to establish 4 NPC centers throughout the United States, today, patients can be referred to one of over 55 sites. Based on individual site reporting, the NPC provides more than 2,700 oncofertility consultations per year, showing the significant need for this growing team.

Another important resource the Oncofertility Consortium provides is the Fertline: a National Fertility Preservation phone line (1.866.708.3378 (FERT)). The Fertline was established to meet the needs of NPC patients and providers whereby they can call or contact us via our website ( and receive personalized responses depending on their specific cancer and the resources available. Patients are triaged as appropriate for consultation and fertility preservation treatments in their own locale. The Patient Navigator is responsible for taking these calls and helping patients across the country navigate through treatment. On average, our Patient Navigator consults with approximately 30 newly diagnosed cancer patients, primarily women, each month.

To learn more about fertility preservation and oncofertility then, now and going forward, please watch Dr. Richard Anderson’s Oncofertility Virtual Grand Rounds, May 16th at 10am Central Standard Time.

Cancer & Fertility: Actualizing Your Dreams of Parenthood After Cancer (Santa Monica, CA)

This Saturday on April 30th, Karine Chung, MD, MSCE, a member of the Oncofertility Consortium‘s National Physicians Cooperative, will be speaking at an event called Cancer and Fertility: Actualizing Your Dreams of Parenthood after Cancer. The event is being held at the Santa Monica Library from 2-4:30pm (PST) and hopes to attract young cancer survivors and caregivers throughout the cancer community who are interested in learning more about fertility options following treatment.

Andrea Stratton, Service Manager for the Fertile Future Program, which is funding the event, states that the program works with non-profits, such as the Oncofertility Consortium, to provide financial assistance for individuals with limited means.  The program also coordinates with cancer related non-profit organizations to educate patients and providers on fertility preservation options for newly diagnosed cancer patients.

At Saturday’s event, survivors will learn how to check their fertility after cancer treatment, available options for individuals who preserved their fertility before cancer treatment, and finally options for individuals whose fertility has already been impacted by treatment. Cancer and Fertility will feature a knowledgeable set of panelists consisting of a Reproductive Endocrinologist (Dr. Karine Chung), a Young Adult Oncologist, a Urologist/Andrologist and most importantly, cancer survivors sharing their stories on starting a family after cancer.

Along with an exciting and informative panel, there will be plenty of professional resources on hand for individuals who would like to learn more about particular options or questions they have in regard to starting a family after a cancer diagnosis. Additional resources will include an adoption agency representative, a genetic counselor, a legal assistance program representative and a surrogacy agency representative.

Beverages and snacks will be provided during the event followed by a free Stupid Cancer Happy Hour at Barney’s Beanery hosted by I’m Too Young for This. For more information, please visit the Cancer and Fertility event page at

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.

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