Many of you may already know about the widely popular organization, Stupid Cancer, but for those of you who are new to our blog, Stupid Cancer is the nation’s largest support community for young adult survivors of cancer. They support a global network of survivors, caregivers, providers and advocates to ensure that no young adult is unaware of the age-appropriate resources available to them. Stupid Cancer empowers young adults affected by cancer through innovative and award-winning programs and services, including Stupid Cancer Happy Hours, the Stupid Cancer Show, and the annual OMG! Cancer Summit for Young Adults.

The annual OMG! Cancer Summit for Young Adults is the premier oncology conference and social networking event for the young adult cancer movement. A pivotal healthcare event, OMG! is one of the largest gatherings of young adult patients, survivors, caregivers, professionals and advocates in the world. The event inspires thousands to get organized, build community and unite as one to drive change. In April, Stupid Cancer hosted its sixth OMG! Cancer Summit in Las Vegas, NV, and attracted over 600 attendees. As one would expect, Stupid Cancer makes the weekend-long event not only informative but also FUN, with events such as an ice cream social, and Stupid Cancer pub trivia.

Over the last few years, members of the Oncofertility Consortium have attended OMG! to help young survivors understand their fertility options and provide resources and pertinent information to young adults whose fertility may have been affected by their cancer treatment. This year, Consortium member, Laxmi Kondapalli, MD, MSCE, moderated two breakout sessions entitled, “Fertility: Rights & Options With, Through, And Beyond Care.” Dr. Kondapalli served as the clinical expert and reproductive health specialist alongside Alice Crisci, advocate and Founder of Fertile Action, and Jennifer Rockman, ovarian cancer survivor.

The framework of their session revolved around all the different routes to parenthood available to young cancer survivors, including banking eggs, embryos, ovarian tissue, and semen; using a gestational carrier; and pursuing adoption. Dr. Kondapalli stated that the overwhelming theme that evolved from the sessions was the lack of information presented to newly diagnosed cancer patients regarding the potential impact on their fertility. Attendees were eager to learn about the different tests available to gauge fertility, such as ovarian reserve testing for women and semen analysis for men. They also wanted to learn more about their fertility options following cancer treatment and, specifically, how their treatment may have impacted their fertility. Participants left armed with information and resources, and even Dr. Kondapalli’s personal email address, should they need her clinical expertise at any point in their fertility journey.

To learn more about your fertility options, visit SaveMyFertility.org, or contact us at 1.866.708.FERT (3378).

May is National Skin Cancer Awareness Month and this time of year brings skin, our body’s largest organ, into focus as the  weather warms up and people spend more time outside in the sun. Skin cancer is sometimes referred to as a “lifestyle disease” because its occurrence can be dramatically reduced through behavior modification, education, and early detection. Learning more about the disease and how it can be easily prevented and/or treated if found early, will hopefully inspire our readers to make some positive lifestyle changes and reduce their risk of skin cancer.

What is skin cancer exactly? Skin cancer is defined as the uncontrolled growth of abnormal skin cells. It occurs when unrepaired DNA damage to skin cells, most often caused by ultraviolet radiation from sunshine or tanning beds, triggers mutations, or genetic defects, that lead the skin cells to multiply rapidly and form malignant tumors. Cancer of the skin is often divided into two categories: non-melanoma and melanoma. The American Cancer Society estimates there are well over 1 million unreported cases of non-melanoma (basal cell or squamous cell) cancers annually in the United States. Melanoma, the more-serious form of skin cancer, is the most common form of cancer for young adults 25-29 years old and the second most common form of cancer for young people 15-29 years old. Furthermore, women aged 39 and under have a higher probability of developing melanoma than any other cancer except breast cancer, and up until age 40, significantly more women than men develop melanoma.

Current statistics show that skin cancer is the most common type of cancer in the United States, as well as some other countries, and unfortunately the incident rate continues to rise.  Although the frequency of melanoma and non-melanoma skin cancer diagnoses indicate that this disease remains a significant health concern, it’s important to note that, research and public awareness campaigns are promoting prevention and early detection of skin cancer. Staying informed with the latest news on prevention and screening are important steps in reducing your risk of developing skin cancer. Here are a few tips from the Skin Cancer Foundation for reducing your skin cancer risk:

• Seek the shade, especially between 10 AM and 4 PM.
• Do not burn.
• Avoid tanning and UV tanning booths.
• Cover up with clothing, including a broad-brimmed hat and UV-blocking sunglasses.
• Use a broad spectrum (UVA/UVB) sunscreen with an SPF of 15 or higher every day. For extended outdoor activity, use a water-resistant, broad spectrum (UVA/UVB) sunscreen with an SPF of 30 or higher.
• Apply 1 ounce (2 tablespoons) of sunscreen to your entire body 30 minutes before going outside.
• Reapply every two hours or immediately after swimming or excessive sweating.
• Keep newborns out of the sun. Sunscreens should be used on babies over the age of six months.
• Examine your skin head-to-toe every month.
• See your physician every year for a professional skin exam.

Since the 1990s, researchers have published conflicting results about the connection between cancer risk and fertility drugs. As a result, there has been a lingering concern among women that using fertility drugs may increase their risk for later developing hormone receptor positive cancers. Hormone receptor positive tumors consist of cells that express receptors for certain hormones such as estrogen or progesterone, but are most commonly known as estrogen receptor tumors. These types of tumors depend on the presence of estrogen in order to grow and spread throughout the body, making the risk for gynecologic cancers cause for concern in some women undergoing IVF treatment.

Fertility drugs have come under scrutiny because they stimulate hyper-ovulation, meaning they cause a woman’s body to produce more eggs. They have been linked to certain gynecologic cancers, such as breast and ovarian cancer. One reason research published in the 1990s may have suggested a link between fertility drugs and cancer risk, is due to the drugs that were being prescribed 20 years ago. Researchers have also blamed the mixed nature of the findings on the studies’ relatively short length, or on including women who have not given birth as they are known to have an increased risk of some cancers.

New research, however, suggests that using fertility drugs does not have an impact on your risk for developing ovarian cancer down the line. Lead author of the study and clinical fellow in the Division of Reproductive Endocrinology at the Mayo Clinic in Rochester, Minnesota, Dr. Albert Asante and his colleagues gathered medical information on 1900 women from an ongoing ovarian cancer study at the Mayo Clinic. The researchers compared 1,028 women with ovarian cancer to 872 women of similar age who did not have cancer. As reported in Fertility and Sterility, approximately 24 percent of the women who did not have ovarian cancer reported having used fertility drugs, while roughly 17 percent of women who had ovarian cancer had used fertility drugs.

The researchers took into account factors that can influence the risk for ovarian cancer, such as age and use of the birth control pill, and found no difference in cancer rates between the groups. Dr. Asante looked specifically at whether women in the study who reported being infertile- whether or not they had taken fertility drugs – had a greater chance of developing ovarian cancer, and found no added risk. He said one explanation for the result is that most of the women in his study had infertility issues, but eventually became pregnant. According to Dr. Albert Asante, “One important message [from this study] is women who need to use fertility drugs to get pregnant should not worry about using these fertility drugs.”

To read more about this new study, click HERE for the full text. To learn more about your reproductive options when faced with a cancer diagnosis, please visit www.SaveMyFertility.org.

By Marla Paul

A new gentler chemotherapy drug in the form of nanoparticles has been designed by Northwestern Medicine® scientists to be less toxic to a young woman’s fertility but extra tough on cancer. This is the first cancer drug tested while in development for its effect on fertility using a novel in vitro test.

The scientists designed a quick new in vitro test that predicts the toxicity of a chemotherapy drug to fertility and can be easily used to test other cancer drugs in development as well as existing ones. Currently the testing of cancer drugs for fertility toxicity is a time and resource intensive process.

“Our overall goal is to create smart drugs that kill the cancer but don’t cause sterility in young women,” said Teresa Woodruff, a co-principal investigator of the study and chief of fertility preservation at Northwestern University Feinberg School of Medicine. The paper was published March 20 in in the journal PLOS ONE.

The scientists hope their integration of drug development and reproductive toxicity testing is the beginning of a new era in which chemotherapy drugs are developed with an eye on their fertotoxity (fertility toxicity). As cancer survival rates increase, the effect of cancer treatments on fertility is critically important to many young patients.

Read more…

There are an estimated 13 million cancer survivors living in the US today, with projected growth to 18 million by 2020. As a result, many healthcare groups and cancer centers are not equipped to address their growing survivor populations. Stemming from this need for quality after care, researchers from the University of Kansas (KU) developed Cancer Survivorship Training (CST), an eLearning solutions provider, to help improve the lives and well-being of cancer survivors by educating and training the healthcare professionals that care for them.

CST online and community courses are designed to increase education, knowledge and skills about survivorship care through theory-based and practical continuing education online curriculum and mobile based learning. The training also provides essential tools for developing and sustaining formal survivorship programs, including oncofertility resources. The Oncofertility Consortium partnered with researchers at KU to help develop CST’s oncofertility course, providing fertility preservation education and options. As studies have shown, fertility is an important factor in many young cancer survivors quality of life following treatment, thus educating patients about their reproductive options is a critical component of comprehensive cancer and survivorship care.

Lead developer of CST, Jennifer Klemp, PhD, MPH, is an Assistant Professor in the Department of Internal Medicine at the KU. Dr. Klemp has a strong interest in patients’ quality of life issues following cancer treatment and is the Director of Cancer Survivorship at KU Cancer Center. She designed CST to deliver continuing education to health care providers actively involved in the care of cancer survivors, including; physicians, oncology nurses, mid-level practitioners, allied health professionals, and practice administrators.

CST emphasizes the importance of post-treatment survivorship care as well as the opportunity for education and prevention of late and long-term effects, including infertility, from the time of diagnosis.  The multi-disciplinary approach provides the healthcare provider with information to care for the needs of cancer survivors from the time of diagnosis and develop skills focusing on essential elements to the delivery of survivorship. To learn more about Cancer Survivorship Training, please visit www.cancersurvivorshiptraining.com or click here.

By Danielle Alyce Fanslow, Francesca Duncan, and Kate Timmerman

There are several methods of fertility preservation open to female cancer patients who wish to start a family after treatment including cryopreservation of oocytes, embryos and ovarian tissue. Cryopreservation is a method of preserving biological material by storing it at extremely low temperatures. Choosing a  fertility preservation method is highly patient-specific and depends on factors such as patient age, the availability of a partner, and/or the sensitivity of the tumor to hormones.  A good option for pre-pubertal patients and patients who must undergo treatment as soon as possible after diagnosis may be cryopreservation of ovarian tissue.  However, current techniques for tissue cryopreservation may be improved as only 22 successful pregnancies have resulted from this method [1].

A group of Oncofertility researchers at the Oregon National Primate Research Center (Ting, Yeoman, Campos, Lawson, and Zelinksi) together with cryopreservation experts (Mullen and Fahy) have been developing new methods for cryopreserving ovarian tissue with the focus on preserving follicle health and quality.  Findings from their most recent work was published in the journal Human Reproduction in an article entitled “Morphological and functional preservation of pre-antral follicles after vitrification of macaque ovarian tissue in a closed system.”  This work provides insight that may lead to improved clinical protocols for ovarian tissue cryopreservation.

The goal of cryopreservation is to minimize injury to cells from the freezing process while limiting the toxicity of cryoprotective agents [2]. The current protocol for ovarian tissue cryopreservation involves slowly freezing the tissue with low concentrations of cryoprotective agents to avoid ice crystal formation inside the cell but to allow ice formation outside the cell [1]. However, ovarian tissue has an abundance of cell types and important extracellular material making it more complex to freeze compared to isolated cells. Vitrification is a method of cryopreservation that can avoid ice crystal formation inside and outside of the cell by quickly freezing the tissue with a high concentration of cryoprotective agent [3].   This method holds tremendous promise in the setting of fertility preservation and has already been applied successfully and routinely to egg and embryo freezing. However, researchers must optimize ovarian tissue vitrificaiton before it can be used in a clinical setting.

As the amount of human ovarian tissue available for research is limited, the Zelinski group used a non-human primate model to study several variables in the vitrification process including the type and concentration of cryoprotective agent used, the cooling rate, and the warming rate.  As a means to assess the quality of the tissue in each experimental condition, the researchers isolated ovarian follicles from the tissue and used them for encapsulated in vitro follicle growth (eIVFG) – a technique that this group had previously applied successfully to the non-human primate.  The researchers then monitored follicle health, diameter, and hormone production.   Using these techniques and assays,  the Zelinski group was able to determine a set of variables that resulted in the healthiest ovarian tissue. Through the findings by the Zelinski group, the field is one step closer to developing a standard protocol for ovarian tissue vitrification that can potentially result in a high rate of successful pregnancies.

References:

1. Ting AY, Yeoman RR, Campos JR, Lawson MS, Mullen SF, Fahy GM, Zelinski MB. Morphological and functional preservation of pre-antral follicles after vitrification of macaque ovarian tissue in a closed system. Hum Repro. 2013. Feb 20^th Ahead of Print.
2. Pegg DE. The history and principles of cryopreservation. Semin Reprod Med. 2002 Feb;20(1):5-13.
3. Pegg DE. The role of vitrification techniques of cryopreservation in reproductive medicine. Hum Fertil (Camb). 2005. Dec;8(4):231-9.

By Cathryn Smeyers

This is the final installment in a two-part blog story featuring Oncofertility Consortium member, Gregory Dolin, MD, JD, focusing on his recent Oncofertility Virtual Grand Rounds presentation. To read the 1^st blog, click here.

In his presentation, Dr. Dolin highlighted some of the problems that exist within the legislative process that make it even harder for scientific issues to be successfully conveyed to lawmakers.  According to Dr. Dolin, the hearing process, which many assume involves full congressional engagement, the presentation of relevant information and lively debate, is often more like “kabuki theater.”  Only invited participants are allowed to testify, hearings are rarely and sparsely attended, and the chairman has a nearly complete control of the agenda and the text of any proposal discussed.  Furthermore, after the hearing, much work is done by the staff in secret, the House Rules Committee can amend or rewrite the bill in any way it sees fit, floor debates may be very limited, and Conference Committees once again have the opportunity to amend or rewrite the bill outside of public view.

So what’s the solution?  How can we ensure that the people in control of federal dollars are scientifically literate and well informed?  Dr. Dolin proposes the creation of an objective body of scientific advisors charged with evaluating all proposed bills and advising Congress of the likely effect of legislation.  This body would also have to solicit scientific input from members of the public, which would allow scientists to register their opinions.  Models of this currently exist in the form of the Congressional Budget Office and the late Office of Technology Assessment. The creation of such an office, however, is just a proposal, and we are unlikely to see it realized in the near future.  In the interim, Dr. Dolin advises that scientists involve themselves in the legislative process and do what they can to ensure that Congress hears and understands complex scientific research.

The Oncofertility Consortium whole-heartedly agrees with Dr. Dolin, and we feel that Dickey-Wicker underscores the necessity for scientists to not only have a voice in the political sphere but to be adept communicators who can appropriately relay complex scientific information to a lay audience.  We hope our blog, for example, allows us to relay scientific research in a way that is both comprehensible and meaningful to our readers. Repropedia (www.repropedia.org) is another tool that we use to clearly communicate scientific information.

Repropedia is a website that is edited by scientists across the globe and serves as an authoritative source of definitions for reproductive health terms. This site directly interacts with other website by providing pop-up definition boxes, so a reader gets the information in context.  Our blog serves as the perfect example!  Of course, we couldn’t let Dr. Dolin go without contributing to this valuable resource. He kindly agreed to contribute a video definition of the term “parthenote,” and we sincerely hope that the general public (Congress included!) will benefit from his explanation.  In the end, it is exactly this kind of clear communication by the scientific community that will educate the public and inform public policy.

Click here to see Dr. Dolin’s Repropedia definition.  Click here to read the chapter he co-authored in the second Oncofertility book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, entitled, “Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility,” and look for his contribution to the fourth Oncofertility book due out later this year entitled, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.

Cancer during pregnancy is rare, occurring in approximately one out of every 1,000 pregnancies, with breast cancer being the most commonly diagnosed. In the past, both healthcare providers and women were often unclear about how to proceed with a pregnancy after a cancer diagnosis without jeopardizing either the mother or the fetus; however, as more women with cancer are deciding to start or continue cancer treatment while pregnant, more information about treating and living with cancer during pregnancy is available.  Oncofertility Consortium member Eileen Wang, MD, an OB/GYN who specializes in maternal fetal medicine (MFM) provides an overview of the management of women who are diagnosed with cancer during pregnancy in, “Pregnancy in Cancer Patients and Survivors,” a chapter in Oncofertility Medical Practice: Clinical Issues and Implementation.

Pregnancy can often delay a cancer diagnosis because some cancer symptoms, such as fatigue, nausea, or anemia, are common during pregnancy and are not considered suspicious. On the other hand, pregnancy can sometimes uncover cancer that has previously gone undetected. For example, a Pap test done as part of standard prenatal care can detect cervical cancer. Similarly, an ultrasound performed during pregnancy can find ovarian cancer that might otherwise go undiagnosed. According to Dr. Wang, “Once a woman receives a diagnosis of cancer during pregnancy, this should trigger a multidisciplinary approach to her care.”

When making treatment decisions for cancer during pregnancy, health care providers should consider the best treatment options for the mother and the possible risks to the developing fetus. The type of treatment chosen depends on many factors, including the stage of the pregnancy; the type, location, size, and stage of the cancer; and the wishes of the expectant mother and her family. Some cancer treatments can harm the fetus, especially during the first trimester, so treatment may be delayed until the second or third trimesters. When cancer is diagnosed later in pregnancy, doctors may wait to start treatment until after the baby is born, or they may consider inducing labor early. In some cases, such as early-stage cervical cancer, doctors may wait to treat the cancer until after delivery.

The prognosis for a pregnant woman with cancer is often the same as other women of the same age with the same type and stage of cancer; however, if a woman’s diagnosis or treatment is delayed during pregnancy, the extent of the cancer may be greater. In addition, because of the amount of hormones produced during pregnancy, they have the potential to affect the growth and spread of some types of cancer. Dr. Wang concludes, “A multidisciplinary approach involving the patient and her support network, the oncology and surgery teams, and the obstetrical and MFM team is required to give the patient the best medical counseling and care and to manage her expectations during the pregnancy regarding her future child in the context of treatment and prognosis.” Read “Pregnancy in Cancer Patients and Survivors.”

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.