Chicago Tribune Talks Fertility Preservation with Oncofertility Consortium Members

By Cathryn Smeyers

A recent article in the Chicago Tribune entitled “New programs give hope to young cancer patients about bearing children,” discusses the field of oncofertility and how it can positively impact the lives of female cancer patients.

The article opens with the story of Jenna Benn, an Oncofertility Consortium favorite who was diagnosed with a form of lymphoma in her late twenties.  For Benn, the possibility that she could lose her fertility from life-saving cancer treatment was of great concern.  Fortunately, as Northwestern is the home base for the Oncofertility Consortium, Benn was in good hands and immediately introduced to Kristin Smith, the hospital’s Fertility Preservation Patient Navigator.  Smith outlined the primary fertility-sparing options that exist for young women facing cancer diagnosis: embryo banking, egg banking, ovarian tissue banking, or surgical procedures to remove or protect the ovaries.  Benn ultimately opted for egg banking and had her own eggs frozen before undergoing six rounds of intensive chemotherapy.

As the article goes onto discuss, though, unlike Benn, not all female cancer patients are made aware of the potential threat to their fertility and the choices available to them.  Dr. Teresa Woodruff coined the term “oncofertility” in 2006, and it is still a relatively young field.  While great strides have been made in availing patients of fertility preservation options, challenges still exist.  For example, there are many doctors who feel that it’s important to stay focused on saving a patient’s life and not necessarily her fertility.  Many women who are informed of their options are ultimately deterred by the cost of fertility preservation measures, which can run between $10,000-$15,000 and are not often covered by insurance.  Also, ethical questions arise with the question of how to handle unused embryos.

Everyday, the Oncofertility Consortium and our partners are working to overcome these hurdles.  We spread the word through our research, blogs, iphone app, and advocacy work.  After her struggle with cancer and fertility preservation, Benn is now a regular contributor to the Oncofertility Consortium and was our featured guest at last year’s gala.  Living in remission and now newly engaged, Benn runs her own cancer support group called Twist out Cancer, which “leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment.”  Make sure to check out their upcoming event Brushes with Cancer, an evening celebrating survivorship and hope through art, music and storytelling, on Wednesday April 17th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

Reproductive Medicine and Ethical Care

Fertility preservation in young cancer patients has come a long way in the last decade, as both patients and the medical community have galvanized to improve the information and reproductive technologies available surrounding oncofertility. In response to the increased likelihood of young men and women losing their fertility due to cancer and its treatment, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients.  In recent news, the American Society for Reproductive Medicine (ASRM) announced that egg freezing would no longer be considered an “experimental” fertility preservation technique, making it easier for cancer patients to receive insurance coverage if they choose egg freezing as their method of fertility preservation. These developments stemmed from substantive evidence that fertility preservation among cancer patients facing fertility impairing treatment is an ethically sound practice, and in a new article entitled, “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, the authors share a reproductive specialist’s view of oncofertility counseling that is important for the practicing oncologist to consider.

First, by discussing fertility preservation with their patients, oncology providers are allowing them to make informed decisions about their reproductive futures. To date, there is no evidence indicating that by discussing oncofertility with patients, it compels them to participate; rather, it demonstrates that they are receiving comprehensive cancer care, which includes survivorship care. In fact, according to the authors, “evidence indicates that patients with cancer who receive counseling about fertility preservation experience less long-term regret than those patients who do not receive counseling, even if the patients choose not to pursue fertility preservation.” Sharing this information with patients may also increase patient confidence in the medical community if they see that they are being treated as a whole person and not just a cancer diagnosis.

Next, an ethical concern raised surrounding oncofertility centers on the disposition of embryos and tissue, specifically as an increasing amount of biologic material is cryopreserved as a result of fertility preservation. Nonetheless, the authors argue that the burden on society will be minimal, since most cryopreserved material comes from healthy, infertile patients actively trying to conceive. They also claim that by striving for advances in fertility preservation options, fewer patients will choose to freeze embryos because they will have other options, reducing the potential ethical issues surrounding embryo ownership.

Finally, the authors address the argument that the allocation of funding and research dedicated to fertility preservation could be better utilized in other medical fields, since it affects such a small percentage of people. Gracia and Jeruss state, “although this may have been a legitimate concern in the past, the research accomplished under the auspices of fertility preservation thus far has furthered the understanding of reproductive physiology, leading to significant breakthroughs in the field of reproductive medicine.” It’s also important to note that these breakthroughs have a ripple affect and can lead to improved fertility options for healthy infertile patients, improved contraception methods, and the conservation efforts of endangered species. Read “Lives in the Balance: Women With Cancer and the Right to Fertility Care,” by Clarisa Gracia, MD, and Jacqueline Jeruss, MD, to learn more about reproductive medicine and the ethical concerns surrounding oncofertility.

New Frontiers in Male Fertility Preservation

Several of our recent blog posts have discussed fertility preservation in females, so we’d like to take a little time to shine a light on some interesting oncofertility research focused on males. The Oncofertility Consortium is committed to exploring the reproductive future of all young cancer survivors, and we have several members dedicated to advancing male fertility preservation. While oncofertility in males is relatively straightforward (sperm banking), investigators are currently researching ways to preserve fertility in pre-pubescent males in a procedure called testicular tissue cryopreservation. A chapter entitled, “Fertility Preservation in Males,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authored by Landon Trost, MD, and Robert Brannigan, MD, examines this experimental procedure.

Sperm banking is not an option for prepubertal boys who are not yet producing sperm; however, they do have stem cells in their testes that are poised to begin producing sperm. As a result, investigators are researching other ways to preserve their reproductive function, and testicular tissue cryopreservation is a technique that shows promise. According to the authors, “Although pre-pubertal germ cells do not contain mature [sperm], they do demonstrate the presence of spermatogoniual diploid stem cells, which maintain the capacity to differentiate into mature cells given the appropriate microenvironment.” In other words, the tissue houses immature sperm cells that have the ability to transform into mature, functioning sperm provided the appropriate environment. Researchers are working on protocols that would enable physicians to use the frozen/thawed testicular tissue and stem cells to produce sperm in the laboratory or by re-implanting, years later, back into the individual.

Despite the promise that testicular tissue cryopreservation shows, it’s important to note that this is still an experimental procedure limited to IRB approved research facilities, and currently there is no way to use this tissue for reproductive purposes. There have been no studies to date demonstrating that a technique has been developed to transform the frozen testicular tissue into viable sperm, in vivo or in vitro. The idea behind this procedure is that at some point, technology will evolve enough to use the cryopreserved testicular tissue in assisted reproductive technologies.

Not only are there logistical limitations with the frozen tissue, but there are also some ethical concerns too. According to the authors,  “Given the underlying malignancy in patients undergoing testicular tissue extraction, there is concern regarding the potential for reseeding the cancer when the cryopreserved tissue is reintroduced in the native host.” For this reason, and due to the technological factors, testicular tissue cryopreservation is currently very limited. To learn more about male fertility preservation options, please visit

Our Voice, Our Narrative, Our Twists on Cancer

Below is a guest post by Oncofertility Consortium favorite and cancer survivor extraordinaire,  Jenna Benn. Jenna is a young adult Gray Zone Lymphoma survivor, who preserved her fertility prior to beginning her cancer treatment in 2011. In the excerpt below, she writes about her experience as a cancer survivor, and shares some exciting news about an upcoming event being held in Chicago this April.

By Jenna Benn

Over the last two years I have spent a great deal of time connecting with other cancer survivors to learn about their unique experiences in managing their illness. Some of of these survivors describe feelings of isolation, loneliness, ostracism and misunderstanding, whereas others describe unprecedented love and support.  Some survivors describe their experiences as colored by profound loss and repeated victimization where as others describe it as a journey filled with countless blessings.

What is clear, is that there is not one cancer narrative- not one coping strategy- nor one particular model patient experience we can look to to mimic or follow.  Our experiences- our narratives-our reflections on what was and what is-is so deeply personal.  And perhaps our experiences and the way we choose to describe them-are influenced by where we stand. Are we recently diagnosed- currently in treatment- recently relapsed or post treatment?   The options are endless and the words we choose  to describe our stories, can quickly change depending on where we are at.

In my case, with little to no statistics or research to explain my diagnosis and treatment regimen, I realized early on that I felt empowered by writing my own story. Writing became my primary coping mechanism for how to navigate an experience that was traumatic, chaotic, yet undeniably mine. As I felt increasingly lonely and isolated I was deeply concerned that I would eventually lose my own voice. There were times when I appeared silent, but I was really screaming. And there were times when I was screaming yet struggling to speak.

Read the rest of the article.

An Overview of Current Fertility Preservation Options

By Cathryn Smeyers

A recent article in the December issue American Journal of Obstetrics and Gynecology, entitled “Fertility preservation in women of reproductive age with cancer provides a comprehensive overview of the current options for fertility preservation in women with cancer. The authors identified six different options for fertility preservation, clearly outlining the benefits and drawbacks of each.

Embryo Banking

The most tried and true method of fertility preservation for women, embryo banking is like an in vitro fertilization cycle (IVF) cycle done for patients with infertility, except that the embryos are not immediately transferred into the patient.  Instead, after the oocytes are fertilized, the embryos are frozen and stored for the patient’s future use.

  • Advantages:
    • Established technique with predictable success rates
    • IVF protocol can be altered to fit patient needs
    • Disadvantages:
      • Requires the male gamete and time for ovarian stimulation
      • Potential for ethical issues with regard to handling of unused embryos

Oocyte Banking

Oocyte banking has come a long way in recent years. Like embryo banking, the patient undergoes ovarian stimulation to promote the growth of multiple oocytes.  Unlike embryo banking, these oocytes are not fertilized before being frozen.

  • Advantages:
    • Provides greater reproductive flexibility (no male gamete needed)
    • Success rates are improving
    • Disadvantages:
      • Requires time for ovarian stimulation
      • Track record not yet as strong as embryo banking

Ovarian tissue cryopreservation

Ovarian tissue cryopreservation involves the banking of ovarian tissue that can later be transplanted back into the patient to restore or improve her fertility.

  • Advantages:
    • Avoids ovarian stimulation
    • Option for pre-pubertal girls
    • Possibility of pregnancy without future ART
    • Disadvantages:
      • Experimental procedure with unproven success rates
      • Risk of reintroducing cancer in patient’s body

In vitro maturation of oocytes

In vitro maturation of oocytes involves removing immature oocytes from ovarian tissue, maturing them in vitro, and then using ART.

  • Advantages:
    • Provides greater reproductive flexibility
    • Avoids ovarian stimulation
    • Disadvantages:
      • Results in fewer viable oocytes in comparison to embryo/oocyte banking, but procedure requires a similar amount of time

Gonadal suppression with GnRH agonists
Gonadal suppression with GnRH agonists involves protecting the ovaries from the affects of cancer therapy by using hormones to suppress ovarian function at the time of treatment.

  • Advantages:
    • No surgery required
    • Preserves hormonal function and fertility
    • Disadvantages:
      • Uncertain efficacy
      • Mixed results from trials

Ovarian transposition

Ovarian transposition is a technique in which the ovaries are protected from radiation by being surgically moved from the pelvis to another area of the body.

  • Advantages:
    • Decreases the risk of ovarian failure from irradiation
    • Disadvantages
      • Useful only to patients who must undergo pelvic radiation
      • Surgical procedure required
      • Patient may require IVF/ART if fallopian tube is cut during procedure

To learn more about fertility preservation options before, during, and after cancer treatment, including which chemotherapy regimes are most likely to affect fertility, please visit


Cancer Survivorship Gets Artistic March 2nd in Chicago!

According to the American Cancer Society, there are now more than 13.7 million cancer survivors in the United States. That number is expected to grow to nearly 18 million by 2022. After decades of focusing on treating cancer, we now face the challenge of helping survivors achieve a good quality of life once treatment has ended. According to the U.S. Centers for Disease Control and Prevention and the National Cancer Institute, 64% of adults diagnosed with cancer today can expect to be alive in five years. For children, survival rates range between 70% and 92%, with the 10-year survival rate at 75%.

For many, a cancer diagnosis may lead to a change in a person’s priorities regarding relationships, family planning, career, or lifestyle. Survivorship issues sometimes affect other areas of life after cancer treatment. Support services can help you deal with physical, emotional and day-to-day issues such as:

  • Difficulty on the job or in school
  • Changes in relationships with loved ones, friends or coworkers
  • Loss of self-esteem
  • Concerns about body image changes
  • Problems getting health or life insurance coverage
  • Stressors related to financial issues

As a result of the steady increase in cancer survivors each year, survivorship aftercare is gaining ground in treatment plans and witnessed in the uptick of organizations being formed to address the various physical, emotional and psychological needs survivors face. One such organization, The Arts of Courage Project, ACP, was formed “to create an empowering opportunity for cancer survivors to express themselves artistically.” The ACP objective is simple: pass it on. As a recent breast cancer survivor, founder Jorie Gillis has a deep desire to give back to an incredibly supportive community of cancer survivors. Combining her expertise and training in art, marketing, and now cancer, Jorie is following her passions and using them with the hopes of giving back.

On March 2nd, in Chicago, IL, the ACP is hosting an evening art event to raise awareness as well as charitable funds for cancer survivorship initiatives. The event is meant to draw anyone touched by cancer, and all who support the fight against cancer. If you are interested in helping those who are currently in the throes of dealing with a cancer diagnosis, or want to share your story/art within the survivor community, then you are encouraged to come out and celebrate! 100% of the proceeds will go to a charitable cancer foundation. ACP is actively seeking artwork created by anyone affected by cancer to showcase and auction at this event. For more information including registration, cost, venue, and how to donate your artwork, please visit The Arts of Courage Project website at

Celebrating 5 Years of Stupid Cancer!

The Oncofertility Consortium was established in 2007,the same year Stupid Cancer was created (formerly know as I’m Too Young For This!), the nations largest support community for the young adult cancer movement. Since then, we have been proud supporters of this group which gives a powerful voice to the young adult cancer community. Below is a guest blog post by Founder and 17-year young adult cancer survivor, Matthew Zachary.

By Matthew Zachary

This January, I will be celebrating 17 years cancer free after being diagnosed with aggressive brain cancer at age 21. While this is a highly significant occasion for me, it’s not the only thing I’ll be celebrating as we move into 2013. Nearly six years after starting what I thought would be a small project, I celebrate huge success with you.

When Stupid Cancer was founded as the I’m Too Young For This! Cancer Foundation in 2007, I never could have imagined where I would be five years later. To date, we have:

  • Hosted 6 OMG! Cancer Summits
  • Produced 249 broadcasts of The Stupid Cancer Show
  • Organized over 500 social support events  across the US
  • Connected thousands with age-appropriate peer support resources
  • Reached over 4,500 registered users of the  Stupid Cancer Forums
  • Grown to having nearly 60,000 likes on Facebook
  • Achieved almost 13,000 followers on Twitter
  • Seen millions refer to our website for support and community

Every month, we reach an astonishing 5 million people through online and offline efforts. And yet, in spite of all that we have accomplished, there is still so much more that we want to do. Our programs require maintenance and improvement, and there are more programs that we hope to develop in the coming years.

For more information about our organization and how you can help support the young adult cancer movement, please visit I thank you for supporting our future success!

Childhood Cancer, Fertility, and Premature Menopause

By Cathryn Smeyers

When female childhood cancer survivors grow up, are they more likely to experience an earlier onset of menopause?  If so, what are the risk factors associated with early menopause?  These were the questions asked by researchers at the French public hospital organization (AP-HP), the Institute Gustave Roussy, and the Universite Paris-Sud.  Their study published in the November 12th edition of Human Reproduction and summarized on the Science Daily website, provides valuable answers.

Researchers looked at data from Euro2K, a French cohort of 3402 survivors of childhood cancer, who were under 18 at the time of diagnosis, between the years 1945 and 1986.  706 female survivors (32% had already reached the age of 40, and 7% were over 50 years old) from the Euro2K cohort participated in this study and filled out detailed questionnaires about their health (age of first period, current menstrual status, etc.). Researchers studied the age at which each of these women started menopause and also took into account any possibly associated risk factors. All the data were self-reported, and researchers did not confirm the menopausal status of study participants with medical reports or hormonal tests.

Data analysis revealed that 97 women (13.7%) went through menopause at a median age 44 years.  This is 7 years earlier than the median age of menopause in the general European population, which is 52 years.  Menopause was surgically induced for a third of these women (36%).

Researchers concluded that the women most at risk for early menopause were survivors treated after the onset of puberty using alkylating agents (with or without even a small dose of radiation to the ovaries).  They found that the primary risk factors linked to cases of early menopause include the dosage of alkylating agents received during bone marrow transplant, the radiation dosage received at the ovaries, and the older the patient is when receiving childhood cancer treatment.

While these results are in agreement with the results of earlier American studies, they differ with regard to the fact that the French research team did not find that women who had suffered from childhood cancer had a significantly increased chance of premature menopause (i.e. menopause that occurs before the age of 40).  Researchers suggest that a possible reason for this difference in findings is that patients from the French cohort were diagnosed with cancer at a lower median age than the participants in American studies (4 years old as opposed to 7 years old in a similar American study).  This could partially explain the lower incidence of premature menopause in the study population.

This study is significant because it provides us with additional information about the risk factors that affect the fertility window of female survivors of childhood cancer.  After assessing their risk of premature menopause, patients can make informed decisions regarding the timing of their family planning.  For example, women at high risk might consider trying to get pregnant at a younger age than women at low risk.

To learn more about fertility preservation before, during, and after cancer treatment, including which chemotherapy regimes are most likely to affect fertility, please visit

Virtual Grand Rounds: Reproductive Impact of Cancer Treatments and Fertility Preservation Options for Cancer Patients

This Thursday, the Oncofertility Consortium is happy to host a Virtual Grand Rounds with two clinician-researchers from the Chicago area, Jennifer Hirshfeld-Cytron, MD, and Mary Ellen Pavone, MD. Drs. Hirshfeld-Cytron and Pavone are both Assistant Professors in the departments of Obstetrics and Gynecology, at the University of Illinois Medical Center and Northwestern University, respectively. To launch our efforts to link up oncology and reproductive providers, the two presenters will give an up-to-date overview of the gonadotoxic effects of different cancer treatments including surgery, chemotherapy, and radiation therapy. Furthermore, they will provide an increased awareness about the established and emerging fertility options for young female cancer patients, before, during, and after cancer treatment.

The Virtual Grand Rounds will occur this Thursday, December 13, at 10 AM Central Time, with a talk entitled, “Reproductive Impact of Cancer Treatments and Fertility Preservation Options for Cancer Patients.” The Virtual Grand Rounds are live videoconferences with experts in the oncofertility field and allow attendees to participate through a live videochat. Virtual and in-person attendees to the rounds can also receive free continuing medical education (CME) credits by following the instructions here. Within one week of the rounds, a video recording will be posted on the Oncofertility Consortium website and CME credits also made available to viewers. To read more about receiving education credits from the Oncofertility Consortium, read about the Oncofertilty Online program.

At 10 AM, Central time this Thursday, click here to watch Drs. Hirshfeld-Cytron and Pavone present their Virtual Grand Rounds. If you are an Illinois reproductive or oncology provider, and would like to increase your local network, contact or call 312.503.2506.

New Study on Tamoxifen Suggests Longer Treatment for Some Women

There are more than 400,000 female cancer survivors below age 40 in the United States today, due primarily to the relatively large number of young women who are diagnosed with, and beat, breast cancer. Approximately 70% of breast cancers are identified as estrogen receptor-positive (ER-positive), meaning they express estrogen receptors and grow when exposed to the hormone estrogen. Tamoxifen, an estrogen receptor antagonist (meaning it prevents activation) is used to reduce cancer recurrence and mortality in premenopausal women with ER-positive cancers. Current general practice encourages women to take Tamoxifen for at least 5 years after an initial cancer diagnosis to reduce the risk for relapse but a recent study indicates that longer Tamoxifen treatment may be even better.

The recent study published in The Lancet examined the relapse and mortality rates of women who took Tamoxifen for 10 years after initial cancer diagnosis, rather than the established 5. The authors identified that 15 years after diagnosis, cancer recurrence rates were 3.03% in the 5-year tamoxifen-treated women, compared to 2.54% in the 10-year treated women. Similarly, death in these survivors occurred in 2.29% of the 5-year treated women versus 1.64% in the women who were on tamoxifen for 10 years. These results indicate that some women may want to extend tamoxifen therapy to get maximal benefit from the drug.

It is important to note that, in the study, the majority of benefit from tamoxifen did occur in the first five years of treatment so some women may still choose to take the drug for 5 years. Multiple factors, including side effects that negatively impact quality of life, may cause women to choose the shorter treatment schedule. These include endometrial cancer, venous thromboembolic events, cataracts, hot flashes, and other symptoms associated with menopause. Currently, up to 50% of patients discontinue tamoxifen prior to reaching the 5-year mark and women under age 40 are at highest risk to discontinue therapy.

In addition to side effects, considerations about fertility may affect tamoxifen adherence rates in younger women. Tamoxifen is a teratogen, meaning it can cause prenatal malformations. Thus, young cancer survivors who are interested in pregnancy may be hesitant to take the extra years of tamoxifen examined in the study. For example, a 30 year-old woman diagnosed with cancer may be able to wait until age 35 to have children but not able to wait until age 40, when her reproductive chances have declined significantly. Given the new study and individual considerations for young women, each ER-positive breast cancer survivor should discuss the pros and cons of extending tamoxifen therapy in her specific case, with her doctor. If you have a question about your reproductive options after a cancer diagnosis, contact the Oncofertility Consortium‘s FERTline at 866-708-FERT (3378).


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