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.

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 www.SaveMyFertility.org.

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.

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 2^nd, 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 www.artsofcourageproject.com.

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).

The oncofertility community aims to educate both oncology and reproductive specialists throughout the United States and across the globe. Over the past five years, the Oncofertility Consortium has done this through an annual conference and monthly Virtual Grand Rounds. This year, we’ve gone one step further in providing clinical education by offering continuing medical education credits (CMEs) to health care providers, including physicians, nurses, and physicians assistants.

This program, called Oncofertility Online, allows health care providers to watch virtual presentations from the 2012 Oncofertility Conference and receive CME credits for their participation. In addition, providers can now watch live or recorded presentations from selected Virtual Grand Rounds (October 2012 – October 2013).

If you are interested in receiving CMEs by watching these recordings, just find a presentation and follow the instructions, which include taking a brief pre-test, watching the recording, and taking the post-test!

Also, you can join the next live Virtual Grand Rounds on Thursday, December 13th, 2012 at 10 AM Central Time on the “Reproductive Impact of Cancer Treatments and Fertility Preservation Options for Cancer Patients” which will be led by Jennifer Hirshfeld-Cytron, MD, MSCI, Assistant Professor, Obstetrics & Gynecology, University of Illinois Medical Center and Mary Ellen Pavone, MD, Assistant Professor, Obstetrics & Gynecology, Northwestern University. View the current list of the 2013 Virtual Grand Rounds here.

Oncofertility is an interdisciplinary field at the intersection of oncology and reproductive science. While those two fields make up the breadth of this discipline, it only touches the surface of what future clinicians need in their academic repertoire to successfully navigate this field.  In “Preparing an Interdisciplinary Workforce in Oncofertility: A Suggested Educational and Research Training Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation, author Christos Coutifaris, MD, PhD, argues that the education and training of oncofertility professionals should involve, “oncology, pediatrics, reproductive science and medicine, biomechanics, material science, mathematics, social science, bioethics, religion, policy research, reproductive health law, and cognitive and learning science.”

Going forward, the National Institute of Health (NIH) has an ambitious agenda requiring multifaceted scientists and clinicians properly trained in both research and medicine. Ideally, physicians would be trained not only clinically, but they would also be prepared for investigative careers. According to Dr. Coutifaris, “the ultimate goal is to prepare reproductive endocrinologists, pediatric and adult oncologists, and surgeons, for investigative careers that focus on the reproductive, endocrine, and fertility needs of cancer patients and survivors.” By doing so, oncofertility specialists would be at the forefront of translational medicine, further benefiting the reproductive outcomes of cancer patients.

Dr. Coutifaris presents a well-laid training program for future oncofertility specialists. This includes establishing an executive steering committee responsible for the overall direction of the program, an advisory board to aid and shape the content of the program, an expert and diverse group of faculty members to mentor trainees, and research training, specifically focusing on the human oocyte. There should also be a comprehensive program evaluation in place to monitor the success of the program.

Having a dedicated oncofertility program in place to ensure that fertility options for young cancer patients is factored into their cancer care, is imperative.  Training and educating the next generation of oncofertility specialists will lay the foundation for improved cancer care and reproductive outcomes. Read, “Preparing an Interdisciplinary Workforce in Oncofertility: A Suggested Educational and Research Training Program,” to learn more about educating the next generation of oncofertility specialists. Participate in our new series of CME-accredited Virtual Grand Rounds to increase communication and education among healthcare providers.

Talking with teenagers about fertility can be awkward and uncomfortable. Talking with teenagers and their families about a cancer diagnosis is devastating. How do we do both at the same time and ensure that the importance of fertility preservation is understood in light of the traumatic timing? Studies among adult cancer survivors show that fertility is their most prevalent concern, thus we need to develop a method for relaying this information to young cancer patients and their families in a timely and sensitive manner. In the article, “The Birds and the Bees and the Bank: Talking with Families Amidst a Cancer Diagnosis,” by Gwendolyn P. Quinn, Caprice A. Knapp, and Devin Murphy, in Oncofertility Medical Practice: Clinical Issues and Implementation, the authors propose using a new method for initiating these discussions.

Patients and their families often look to health care providers to guide them in their decision-making process. Receiving a cancer diagnosis is very traumatic and can leave both the patient and their parents in a highly emotional state. They may not remember all that they were told in that initial discussion, but unfortunately decisions need to be made in that moment that will have an impact on their life many years later. Depending on the cancer diagnosis and the treatment protocol, loss of fertility may be a consequence., and needs to be addressed.

Studies show that communicating with patients using interactive tools, increases a patients understanding of the information being presented. Additionally, understanding is further increased, specifically when individual decision-making is involved, using a values clarification exercise or tool. According to the authors, “A values clarification tool (VCT) is often used in environments in which a common shared vision or purpose is required, the goal of which may be to develop the common vision, define roles, or develop long-range plans.” A VCT serves as a primer for future decision-making because it does not asks participants to ponder hypothetical situations, but instead aids them in defining the values and beliefs that influence their behavior. The authors maintain, “The open-ended statements of the VCT encourage patient/parent and administrator to begin a dialogue so that the patient/parent may process the idea of having children first, and then consider their feelings about possibly not being able to have children in their future.”

Allowing young patients to take an active role in making decisions about their fertility by evaluating their own beliefs and behaviors, and processing the idea of potential infertility, can actually serve to empower their decision-making process. Studies show that adolescent and teenage cancer survivors have clear expectations about parenthood and having biological children, yet are not always able to fully express these desires. The VCT can be a helpful tool in initiating these types of discussions. Read, “The Birds and the Bees and the Bank: Talking with Families Amidst a Cancer Diagnosis.” Learn more about your fertility options by visiting our Virtual Patient Navigator.

We are happy to be hosting Helen Picton, BSc, PhD, FSB for her Virtual Grand Rounds presentation tomorrow, October 25th, 2012, at 10 AM Central Time, entitled, “From Basic Science to Clinical Application- the Facts and Future of Ovarian Cryopreservation for Fertility Preservation.”  Dr. Picton’s work focuses on characterizing ovarian follicles during growth and maturation, and the developmental competence of in vitro oocytes, and will inform her discussion of the research behind ovarian tissue freezing and how to apply that technique in a clinical setting now, and as we move forward with advancements in the reproductive field.

Receive free CME’s tomorrow by participating in tomorrow’s Virtual Grand Rounds (VGR) with the Oncofertility Consortium. VGR’s are live videoconferences with experts in the fields of reproduction, cancer, and oncofertility. They provide researchers, clinicians, and others the opportunity to hear emerging research findings from anywhere across the globe and participate through a live videochat. This year, the Oncofertility Consortium is also able to offer free CME credits to health care providers through these live virtual events.

At 10 AM, Central Time, click here to watch Dr. Picton present her Virtual Grand Rounds.

This weekend kicks off the 68^th annual meeting of the American Society for Reproductive Medicine (ASRM) in San Diego, CA and runs through October 24^th.  ASRM was founded in 1944 by a small group of fertility experts in Chicago and since then, distinguished members of ASRM have led the development of the field of reproductive medicine.  They were the first physicians to perform many of the standard procedures used by fertility specialists today, including donor insemination and in vitro fertilization, and they have helped form key legislation and fought for reproductive rights when public policy in reproductive matters did not exist.

Today, ASRM members reside in all 50 of the United States and in more than 100 other countries.  ASRM is multidisciplinary, with members including obstetrician/gynecologists, urologists, reproductive endocrinologists, embryologists, mental health professionals, internists, nurses, practice administrators, laboratory technicians, pediatricians, research scientists, and veterinarians. Needless to say, the Society is an authority on reproductive medicine and has been for over half a century, and at this year’s conference, a very important announcement is going to be made: egg freezing is no longer considered an “experimental” fertility preservation technique.

The practice of freezing eggs has long been controversial with many experts arguing there’s too little data on how well it works or how safe it is. Up until now, clinicians mostly recommended it for female cancer patients whose fertility may be at risk as a result of cancer treatment in situations where embryo banking is not an option or as an additional safeguard to embryo banking. The published report upgrading egg freezing from experimental to standard, prepared by the Society for Assisted Reproductive Technology (SART) Practice Committee, reviewed nearly 1,000 published studies about egg freezing and concluded that sufficient studies have been done to warrant considering egg freezing as a clinically available technique due to improved freezing and thawing techniques.

So what does this mean for cancer patients? Removing the “experimental” label may make it easier for cancer patients to receive insurance coverage if they choose egg freezing as their method of fertility preservation. It may also become a more appealing choice if it’s considered a clinically standard technique. Although there are no guarantees in any fertility preservation technique, patients may be less likely to choose experimental procedures over conventional ones.

We will have more information for you next week as this story unfolds and the report is published…