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).

Did you know that this week is National Infertility Awareness Week (NIAW)? NIAW is a movement that began in 1989 to raise awareness about the disease of infertility and encourage the public to understand their reproductive health. RESOLVE: The National Infertility Association founded this movement to:

• Ensure that people trying to conceive know the guidelines for seeing a specialist when they are trying to conceive.
• Enhance public understanding that infertility is a disease that needs and deserves attention.
• Educate legislators about the disease of infertility and how it impacts people in their state.

Infertility is a disease of the reproductive system that impairs the body’s ability to perform this basic function.  Pediatric and young adult cancer patients undergoing treatment are at high risk of having impaired fertility as a result of their disease or its treatment. Reproductive medicine provides a number of sophisticated options for assisted reproductive technologies (ART) such as egg, embryo, and sperm banking, ovarian tissue cryopreservation, and third party reproduction options (egg, sperm, and embryo donation, and gestational carrier/surrogacy) which help many people achieve parenthood.

Studies show that fertility preservation can bring hope to a patient undergoing cancer treatment, that there will be options and renewed life beyond their cancer diagnosis. Studies also indicate that individuals who do not receive fertility preservation information or treatment options following a cancer diagnosis are more likely to experience profound emotional consequences once they began to navigate family planning. While adoption and third party options make parenting possible, it does not always eradicate the feeling of loss one can suffer as a result of impaired fertility.

In support of NIAW, we ask you to help us and join the movement to increase and protect access to all family building options, and to help make fertility preservation counseling part of comprehensive cancer care in pediatric and young adult patients. For more information about your fertility 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.

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…

Fertility concerns should be addressed with all newly diagnosed reproductive age cancer patients before their treatment begins. Although some treatment courses are thought to be more damaging to fertility than others, it is imperative that every patient is well-versed about the potential impact their treatment may have on their reproductive future in order to make informed decisions regarding fertility preserving procedures. In a new article in the Journal of Assisted Reproduction and Genetics, entitled, “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer,” the authors, ISFP Practice Committee, Kim SS, Donnez J, Barri P, Pellicer A, Patrizio P, Rosenwaks Z, Nagy P, Falcone T, Andersen C, Hovatta O, Wallace H, Meirow D, Gook D, Kim SH, Tzeng CR, Suzuki S, Ishizuka B, Dolmans MM, discuss different types of cancer and their treatment and the corresponding affect on fertility arguing for the importance of standardized fertility preservation counseling prior to treatment.

In “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer,” the authors discuss specific types of cancer (luekemia, lymphoma & breast cancer) incident and survival rates, as well as effects on gonadal function. For newly diagnosed breast cancer patients, factors affecting gonadotoxicity are age of the patient, and dose and number of cycles of some types of chemotherapeutics, called alkylating agents. The authors further clarify that many studies measure future fertility risk based on the likelyhood of amenorrhea, which can vary greatly depending on the types of chemotherapy.

In many cases, young breast cancer patients require additional cancer treatment given after the primary treatment, such as chemotherapy after surgery (mastectomy or lumpectomy), to lower the risk that the cancer will come back. The best time for fertility preservation is after surgery and before subsequent chemotherapy or radiation treatment begins. Egg or embryo banking is often recommended as a fertility preservation option for women before chemotherapy. Cryopreservation of embryos or oocytes requires hormonal stimulation which increases the levels of hormones, such as estrogen, in a woman’s body. For women with breast cancer, especially estrogen receptor positive types, this may cause proliferation of the cancer cells and the authors state that these risks should be discussed before the treatment. In addition, they state that women who require urgent cancer treatment, cryopreservation of ovarian tissue should be considered.

All patients who desire to preserve fertility should be counseled and informed about currently available fertility preservation options by their healthcare team. Recommendations should be individualized to the patient dependent on their diagnosis and treatment plan. The authors of “Recommendations for Fertility Preservation in Patients with Lymphoma, Leukemia, and Breast Cancer” state that, in general, fertility preservation before cancer treatment is strongly recommended if the chance of losing fertility is over 30 % with cancer therapy. Patients or clinicians interested in learning more about fertility preservation for a particular case can call the Oncofertility Consoritum’s FERTline for tailored information.

As part of our guest blog series, the Oncofertility Consortium would like to introduce our readers to Shannon Routh, and her organization for young survivors of ovarian and gynecologic cancers, Teal Diva, founded in 2009. Below is a post she wrote about her experience with cancer, fertility and finding the “new normal” in her life.

By Shannon Routh

Remember the MASH (Mansion-Apartment-Shack-House) game you used to play when you were a little girl, to predict what your life would be like when you grew up? The game where you choose your husband, how many kids you will have, where you will live, etc.  It’s funny how the words cancer, infertility or hysterectomy were never a part of my outcome.   My story ends a little differently than I had hoped…dreamed.

My husband and I were married just shy of 3 years when we got the news…you have ovarian cancer.  A few months prior to being diagnosed, I had abdominal pain.  I went to my gynecologist.  After reviewing my ultrasound, she noticed a cyst the size of a grapefruit on my ovary.  She referred me to a Gynecologic Oncologist.  As he prepped us for surgery, he told us we had 3 scenarios: 1-remove the cyst, 2- cancer, removal of cyst and ovary, and 3-cancer, hysterectomy, etc, etc, etc.  After surgery, I woke up asking if he did a hysterectomy and I was told he did not.  Oh my goodness…I was so relieved, so thankful.  The day I was released from the hospital is the day I learned I had stage IIa Clear Cell Carcanoma. I was 32.  And because of my age and cancer type, he wanted to be certain prior to taking both ovaries.  Wait…does that mean?…yep.  A 2^nd surgery was scheduled.  We went home…devastated.  In an effort to remain positive, I thought we could harvest eggs and pursue other options.  We went in for a consultation a few days before the radical hysterectomy and asked hopeful questions about our options, but we were told my cancer type feeds off of hormones. Unfortunately, you will not be able to bare children.  So not only do I have cancer, I can’t have kids.  WOW…talk about depressing.  But I didn’t have time to feel sorry for myself because I had to prepare for the hardest fight of my life.

My world was turned upside down by having cancer and learning I would never bare children, but I have found a new normal…one I didn’t plan for.  Throughout my journey, I needed desperately to connect with someone. So, one night I started writing and before I knew it, Teal Diva was born.   The mission of Teal Diva is to celebrate life!  As survivors of ovarian and other gynecological cancers, we understand the reason to celebrate every sunrise.  We are bound by our experiences and challenges and form a sorority which we never intended to join.  The primary beneficiary of our fundraising efforts are research programs seeking reliable screening tests for gynecologic cancers.

*To learn more about Teal Diva and other community resources for cancer survivors, please visit our Patients webpage.

Infertility has been associated with psychological distress and can have a negative impact on quality of life in cancer survivors.  Reproductive concerns are often sited among young cancer survivors prior to, and following cancer treatment. A number of fertility preservation (FP) options are available to preserve patients’ future reproductive ability. For men, sperm banking is a clinically established method, and a relatively straightforward procedure in comparison to FP for women, which is more complex. In a new article published in the Journal of Clinical Oncology by authors Gabriela M. Armuand, Kenny A. Rodriguez-Wallberg, Lena Wettergren, Johan Ahlgren, Gunilla Enblad, Martin Ho ̈glund, and Claudia Lampic, entitled, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors,” the authors investigate male and female cancer survivors’ perception of fertility-related information and use of FP in connection with cancer treatment during reproductive age.

The authors used a sample of 484 survivors diagnosed from 2003 to 2007 identified in population-based registry in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at the time of diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Study participants were asked to fill out a questionnaire assessing their experience with FP and knowledge of FP techniques following a cancer diagnosis.

The majority of male participants reported having received information about treatment impact on fertility (80%) and more than half of the men banked frozen sperm (54%). Among women, less than half reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women, or 2%, underwent FP.  Sex was the single most important predictor for receipt of information about FP; a man was 14 times more likely to report having received such information than a woman. The results of this study are even more interesting when you take into account that in Sweden, infertility treatment is part of the tax-funded health care system; therefore, FP is available to all patients with cancer. Nonetheless, this did not seem to have an impact on female access to FP information and services.

The results of this study suggest significant sex differences when conveying fertility-related information and the use of FP. As a result, the authors argue that there is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decision-making regarding their treatment and future reproductive options. In an effort to meet the needs of young female cancer patients, the Oncofertility Consortium developed educational materials to help young women and their families better understand their fertility preservation options. Read, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors.”

At the Oncofertility Consortium, we stress the importance of collaboration among clinicians, basic scientists, and the humanities in an effort to ensure that cancer patients have fertility options after treatment. This is no small feat, but the emerging field of oncofertility is constantly evolving as new fertility preservation techniques are developed, existing ones are improved and the impact of gonadotoxic cancer treatment is examined. In a new article written by oncofertility researchers, Katherine E. Dillon and Clarisa R. Gracia, and edited by Jacqueline Jeruss, in the journal, Current Treatments in Oncology, entitled, “Pediatric and Young Adult Patients and Oncofertility,” the authors explore the various fertility preservation options available to pediatric and young adult patients and argue that a team approach is needed between oncologists and reproductive endocrinologists in order to provide the best outcomes for young patients.

Among the fertility preservation techniques currently available, the authors discuss options available for both males and females including lesser known options for females such as oophoropexy (relocating the ovaries out of the radiation field to protect them from exposure during treatment), and hormone replacement therapy for pre-pubertal cancer patients. Options available for males are sperm banking and testicular tissue banking for pre-pubescent males. Testicular tissue banking is still experimental and requires further scientific development.

Increasing numbers of pediatric and young adult cancer patients are surviving well into their reproductive years, therefore the authors state that clinicians need to be informed about the impact of cancer therapies on both males and females, as well as the available fertility preservation techniques for this demographic. They also maintain that it is imperative for clinicians to understand the most recent advances in oncofertility to better understand the future direction of the field and potential fertility preservation techniques that will one day be practiced in a clinical setting. To read, “Pediatric and Young Adult Patients and Oncofertility,” please click here.

As previous studies have shown, women diagnosed with cancer during their reproductive years often do not receive adequate consultation, and sometimes none at all, regarding the fertility risks of cancer or its treatment.  Fertility is a unique survivorship issue that young cancer patients face, which can impact their quality-of-life after cancer treatment.  In the African American (AA) community, although more AA women are diagnosed with early-onset breast cancer than Caucasian women, little is known about patient awareness related to fertility or the rate at which providers are communicating potential fertility issues.

A new article in Supportive Care in Cancer by Oncofertility researchers, Susan T. Vadaparampil, Juliette Christie, Gwendolyn P. Quinn, Patrice Fleming, Caitlin Stowe, Bethanne Bower and Tuya Pal, entitled,  ”A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” examines patient/provider communication in the African American breast cancer population.  The authors studied AA women under the age of 50, diagnosed with invasive breast cancer between 2005 and 2006 in an effort to better understand the fertility communication and awareness barriers that may be in place for AA women being treated for breast cancer.

Similar to other studies, the authors found that a substantial proportion of young AA breast cancer patients were unaware of the impact breast cancer treatment would have on their fertility.  One half of young AA women diagnosed with breast cancer reported no discussion with their providers of fertility risks associated with their treatment.  The exception -women who were younger, had no children or few children, and had not undergone tubal ligation were more often aware of the fertility risks posed by their treatment.

The results of this study suggest that better communication and awareness about fertility is critical in order for AA patients to make informed decisions about their treatment.  In line with prior research, definite plans for childbearing, relationship status or sexual orientation should not play a role in whether or not someone is informed about their fertility risks. To learn more about this study or to read, “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” please click here.

Laxmi Kondapalli being interviewed by Dayle Cedars from Channel 7 news in Denver

One of the many, if not one of the most, important aims of the Oncofertility Consortium and its emphasis on fertility preservation research and clinical care, is “training the next generation.” Not only is the mission of the Consortium to improve fertility outcomes for patients undergoing cancer treatment, but it is also to ensure that future basic scientists and clinicians continue to expand current knowledge, research, clinical practice, and training in fertility preservation outcomes.  Laxmi Kondapalli, MD, MSCE, Assistant Professor of Obstetrics and Gynecology at the University of Colorado and Women’s Reproductive Health Research Scholar in the Division of Reproductive Endocrinology and Infertility is a realization of this goal. Let’s start at the beginning…

In March 2006, Laxmi was finishing up her residency training at Northwestern University in Obstetrics and Gynecology when she met Teresa K Woodruff, PhD, Director of the Oncofertility Consortium. Laxmi shared her interest in Reproductive Endocrinology (REI) with Dr. Woodruff, but expressed her desire to do basic science/bench research first, before embarking on clinical training and practice. According to Laxmi, “Meeting Dr. Woodruff changed the trajectory of my career.  She has incredible vision, particularly for someone who is not a clinician, on how to bridge science with individual care.”

Shortly after her meeting with Dr. Woodruff, Laxmi started working in the Woodruff Lab in August 2006. It was at the start of her tenure in the lab when she found out that Dr. Woodruff was one of the finalists for the prestigious National Institutes of Health (NIH) Roadmap Grant (aka, the grant that brought the “idea” of the Oncofertility Consortium to fruition). Together, they put the 1,000 page grant together over a 10 week period with help from members of the Woodruff Lab and other academics from within Northwestern and around the country. Laxmi explains, “It was being at the right place at the right time and the Oncofertility Consortium was a perfect fit for me because of my interest in REI and because it was a way for me to really see how you can translate work that we do in the laboratory to really impact clinical and patient care.”

In 2007, the Oncofertility Consortium was funded by the NIH, and Laxmi was A) not only a first-time grant writer, but a grant writer for one of the biggest grants given out (“for me, it was a valuable experience on so many levels”), B) processing and freezing A LOT of ovarian tissue in her lab work and C) navigating patients with the Fertility Preservation Patient Navigator who was receiving referrals from all over the country to do tissue freezing. By 2008, after two years in the Woodruff Lab working hands on with tissue, Laxmi was ready to embark on an REI fellowship and she had her sights set on an institution that would allow her to expand her work in fertility preservation while ideally being involved with the Oncofertility Consortium.

Stay tuned for Part 2 of the amazing, fabulous Laxmi Kondapalli success story!