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).

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.

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.

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).

By Yogesh Makanji

In an Australian first, Monash IVF specialists reported achieving pregnancy in a 43-year-old woman after transplanting her cryopreserved ovarian tissue. Professor Gab Kovacs, Director of Monash IVF, Melbourne Australia, reported that his team had restored fertility in a woman by transplanting her cryopreserved ovarian tissue, following which she resumed natural ovulation and was six weeks pregnant. In 2005, this woman had ovarian tissue cryopreserved prior to commencing breast cancer treatment. If successful pregnancy ensues then in another Australian first, this would be the first Australian baby born from transplanted ovarian tissue and 20^th in the world. In light of their success, Professor Kovacs went on further to recommend ovarian tissue cryopreservation as a reliable, cheaper and easier method of preserving fertility of cancer patients; compared to cryopreserving eggs or embryos.

Adding to the commentary, Dr. Lyndon Hale, Medical director of Melbourne IVF Clinic, Australia reported that they had successfully transplanted ovarian tissue in patients and only one had become pregnant. However, she had subsequently miscarried. Dr. Hale also sees the benefits of this technique for preserving fertility of cancer patients.

Another trend emerging from this article is the use of cryopreserved ovarian tissue as a way of preserving a women’s fertility indefinitely.  In addition, it has been suggested that ovarian tissue transplant in peri-menopausal women may delay or offset symptoms associated with menopause; hot flashes, osteoporosis, weight gain, etc. Neither Professor Kovacs nor Dr. Hale is advocating the use of ovarian tissue transplant for this purpose. Hormone replacement therapies are available to alleviate some of these menopausal symptoms.

Ovarian tissue cryopreservation is providing many young cancer patients the opportunity to preserve their fertility. Chemo and radiotherapy may adversely affect a women’s future fertility. Thereby, cryopreservation of ovarian tissue prior to cancer treatment protects a women’s future fertility.

Source: The Age http://www.theage.com.au/national/health/science-beats-fertility-clock-20121128-2aev2.html

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.

Tomorrow launches this year’s cadre of Virtual Grand Rounds for the Oncofertility Consortium. For those who are not aware of these special rounds, they are live videoconferences with experts in the fields of reproduction, cancer, and oncofertility. The rounds 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.

We are happy to be hosting Zsolt Peter Nagy, PhD for his presentation tomorrow, October 11, 2012 at 12 PM Central time, for his talk on vitrification, the rapid freezing technique used in assisted reproductive technologies (ART). Dr. Nagy will discuss the current state of vitrification in two fertility preservation options for young female cancer patients, oocyte and embryo cryopreservation.

At Noon, Central time, click here to watch Dr. Nagy present his Virtual Grand Rounds

Or sign up to receive free CME credits while participating in Dr. Nagy’s presentation

After nearly ten years of research, a team of 20 doctors and specialists at the University of Gothenburg in Sweden, have performed the first mother-to-daughter uterine transplants in two Swedish women.

The two women, both in their 30s, received new wombs donated by their mothers on September 15^th and 16^th without complications.  One of the women was born without a uterus, while the other, a cervical cancer survivor, had to have her uterus removed many years prior.

The uterine transplant procedure was developed as a reproductive technology to allow women of childbearing age, who lack a uterus, to bear children.    Both women began hormonal treatments for in-vitro fertilization before the surgery.  Frozen embryos will be thawed and transferred to their new wombs once doctors have determined that they are healthy enough to support a pregnancy.

According to the Centers for Disease Control (CDC), more than 600,000 hysterectomies are performed annually in the US.  Although the vast majority of hysterectomies are performed electively as a treatment for symptoms associated with gynecologic disorders, removal of the uterus is frequently recommended when cancer of the cervix, uterus, vagina, fallopian tubes and/or ovaries is invasive.  Similarly, hysterectomy is recommended in cases of uterine fibroid tumors, endometriosis and uterine prolapse.

Uterine transplants are unique amongst organ transplants in that they are not required as a life-saving intervention.  Because the procedure is not regarded as life-saving, researchers had to perfect the procedure to make it as safe as possible using non-human primates.  The first successful transplant for the team was reported via a series of publications lead by Mats Brannstrom around 2003.  The team of more than 10 surgeons who performed last weeks uterine transplants, trained together for several years first with mice, reporting successful pregnancy and offspring.  The team has since been successful in other animal models including baboons.

Although it is too soon to know, the mark of success for these transplants, and one performed last year by Turkish doctors using a womb from a cadaver, is a successful pregnancy.  If successful, the option of uterine transplant may affect thousands of women of reproductive age that have had to have their uterus removed due to uterine or cervical cancer, endometriosis, and those born without a uterus due to genetic disorders such as Turner’s Syndrome.

The 2012 Oncofertility Conference: Dialogues in Oncofertility begins next Thursday, September 27^th in Chicago, IL. This 6^th annual conference will include talks from experts across the globe on topics that range from factors influencing primate folliculogenesis to the psychosocial needs of young cancer patients. The keynote presentation from Dr. Hamish Wallace, will address, “Fertility Preservation for Young People with Cancer: What Are the Remaining Challenges?” In addition, an evening cocktail hour will include a celebration for pediatric and young adult cancer survivors with national advocates, survivors, researchers, and clinicians…and a special piano performance from the founder of the young adult cancer advocacy organization, Stupid Cancer, Matthew Zachary.

For those who are not able to attend the conference in person, we are happy to announce that the educational presentations will be available through live web streaming. Virtual attendees can join in from across the globe by going to this website (http://bit.ly/virtualoncofert) during the conference hours on Thursday, September 27 – Friday, September 28. In addition, complementary CMEs, nursing, and physicians assistant credit hours will be available to online attendees. Learn more about this virtual broadcast and pre-register to receive CMEs through the virtual conference.

To attend the 2012 Oncofertility Conference in person, limited registration is still available. We look forward to seeing you there!

Here at the Oncofertility Consortium, we are busy putting the final touches on the upcoming 2012 Oncofertility Conference: Dialogues in Oncofertility. At the conference, experts will discuss which cancer treatments are likely to damage later reproductive ability for men, women, and children and  new fertility preservation methods. At this year’s sixth annual conference on September 27 – 28, 2012 in Chicago, IL, clinicians and scientists will discuss recent advances in oncofertility scientific and medical treatment.

The program for this two-day conference on fertility after cancer features translational and clinical research on fertility preservation, lessons learned from individual fertility preservation programs, a speech and special performance by the founder of the adolescent and young adult cancer advocacy group, Stupid Cancer, and a Keynote Symposium by Hamish Wallace, MD (Royal Hospital for Sick Children, Edinburgh). During the two days of the conference, more than 20 invited speakers from across the globe will present cutting-edge information to attendees.

Health care providers will be provided with CME or nursing contact hours at no additional cost. For more information or to register for the conference, visit the website at http://bit.ly/oncofert12 or email oncofertility@northwestern.edu. The 2012 Oncofertility Conference is funded by the NIH (Grant 5R13HD063248-03), and an unrestricted educational grant from Ferring Pharmaceuticals, Inc.

To learn more about fertility and cancer, visit SaveMyFertility.org and download the free iPhone app.