Category » Fertility Preservation

Survivors: A New Magazine for Breast Cancer Survivors

As we have covered in past blogs,  young people account for about 10% of all cancer patients.  As science, research and advocacy evolve, more young people are SURVIVING cancer and going on to lead healthy and productive lives. Nonetheless, young cancer survivors are in a league of their own when it comes to survivorship issues, (i.e., late-term effects of cancer treatment, fertility, heart & brain health, etc…). In an effort to address and celebrate breast cancer survivorship, particularly in women diagnosed at a young age, a new quarterly magazine was born: Survivors: A Magazine for Inspiration, Hope, Healing and More.

In November 2011, the premier issue of Survivors: A Magazine for inspiration, Hope, Healing and More was published. According to the editors, the goal of the magazine is to “highlight positive and inspiring breast cancer survivor stories – about people who have turned their diagnosis and situation into possibilities and opportunities.” The most significant aspect of this new magazine lies not only in its mission, but also in its content – the magazine spotlights grass roots programs and organizations allowing them to get the kind of exposure they often deserve and need, but don’t often get.

Throughout the first issue are stories from women, many still in their reproductive years, who are involved with the Breast Cancer Awareness Body Painting Project (BCAPP). BCAPP is a form of art therapy for breast cancer survivor showcasing women of all different races and ethnicities with their chests/torso painted, aiming to demonstrate the beauty and inspiration in survivorship by presenting a positive body image of breast cancer survivors. If you have not already, you should definitely take a look at these profound and brave images of women who have been diagnosed with and survived, breast cancer.  If you need a little inspiration, you will be hard pressed not to find it here.

Their first issue of Survivors: A Magazine for Inspiration, Hope, Healing and More can be downloaded for free so take a look at it here and if you love it, they’ve already released their second issue for purchase.  If you’re interested in contributing breast cancer survivor stories or other related content, please send them an email at: survivors@inkspotdesigns.com.

 

Oncofertility Consortium at Northwestern University Pioneers Fertility Preservation

Fertility sparing procedures which were once infrequent and under utilized, are now more commonly performed in young men and women facing a cancer diagnosis. A recent article in the February issue of the American College of Surgeons Bulletin, entitled Gynecologic Oncology Surgeons Spare Patients’ Fertility, Enhance Quality of Life,” by Jeannie Glickson discusses some of the technological advances in gynecologic oncology which have produced more favorable outcomes for young people facing a cancer diagnosis and fertility loss. Glickson talks to several heavy hitters in fertility preservation care, including Kristin Smith, Fertility Preservation Patient Navigator, and Oncofertility Consortium member Dr. Julian Schink, who maintain that it takes a multidisciplinary approach and team effort to treat young cancer patients.

One of the many things that Northwestern University is known for is pioneering collaborative fertility preservation care, oncofertility, at a time when many other institutions were treating fertility loss as a side effect of cancer treatment. According to Dr. Schink, “You need an oncologist who believes that the patients’ survival is the first priority, and you need a fertility team that respects some cancer patients’ desires to have children. You need strong players on both sides.” Specifically for these reasons, the Oncofertility Consortium was established – to respond to an urgent need for comprehensive fertility preservation care, incorporating clinicians, researchers and social scientists, all committed to ensuring that patients understand and can utilize fertility sparing technology.

Currently, patients interested in preserving their fertility may have some options that coincide with their cancer care, but other techniques not yet available to patients are being researched at the Oncofertility Consortium for potential future use. One of these techniques, a process called in vitro maturation, is performed by harvesting immature eggs from ovarian tissue strips which are cultured outside of the mother’s womb, treated with hormones until they mature and then fertilized with sperm to create an embryo. This would be particularly useful to patients who are not candidates for ovarian tissue transplantation such as leukemia patients or those with ovarian cancer.

As a result of the efforts of the Oncofertility Consortium and its members, patients can now receive comprehensive fertility preservation care at several sites across the country and internationally. At Northwestern, there has been a slight decline in the demand for fertility preservation services because patients no longer need to travel to Chicago for their treatment – they can find an institution, with the help of our Fertility Preservation Patient Navigator, in their own areas and according to Dr. Schink, “that’s a good thing.”

To read more about Northwestern’s pioneering efforts in oncofertility in Gynecologic Oncology Surgeons Spare Patients’ Fertility, Enhance Quality of Life, please click here.

Cancer & Fertility Preservation: How I Lost My Uterus and Found My Voice

A newly released memoir from cancer survivor, Michelle Whitlock, delves into her experiences with HPV, cervical cancer, fertility preservation and love in a book that you will read from start to finish in one sitting. How I Lost My Uterus and Found My Voice is an honest and (very) candid account of what her 20s looked like, replete with all the things you might expect out of a 20 something: falling in love, travel, finding oneself, heartbreak, etc… Now throw in a whole lot of cancer, embryo banking, chemo, radiation, incontinence and a play by play of “getting your groove” back after your vagina has done a total 180 from what it once was, and you have a very unique story.

At the age of 26, Michelle found out that she had HPV, a sexually transmitted virus infecting 50-60% of sexually active people. Shortly after finding this out, she received the biggest blow of her life – she was diagnosed with invasive cervical cancer.   From that point forward, Michelle made it her mission to ensure her treatment plan was something that worked for her, meaning not only was she going to do everything in her power to beat the cancer, but she was also going to fight just as hard to preserve her fertility for her “maybe babies” one day. At a time when little information was offered regarding fertility preservation, Michelle had to take the reins into her own hands and become her best advocate. Unsure of whether or not she even wanted children, she was not going to let cancer take her options away.

After successfully beating cancer the first time around and avoiding a total hysterectomy by electing to undergo an experimental surgery to eradicate the disease, she was diagnosed with the same cancer just a few years later.  She was left with no other option except chemo, radiation and a total hysterectomy, but as a result of her research and commitment to finding the best care possible, she found a doctor who understood the importance of her fertility just as much as she did. Thus, her “maybe babies” came to fruition and were put on ice for a date… TBD.

I don’t want to giveaway any more of her story, but this is a must read for cancer patients, survivors, caregivers or anyone that wants to know what cancer, fertility issues, and sexuality really look like. I highly recommend it for its rawness and the openness with which she shares her experience. Nothing is sugar-coated in these pages – Michelle talks about things that will make you blush from time to time, but they’re the things no one talks about, and should be.  It’s an inspirational story that reads like a conversation with your girlfriends so if you haven’t already, please pick up a copy of How I Lost My Uterus and Found My Voice, by Michelle Whitlock, and see what I have been raving about!

Fertility Preservation, Parenthood and Collaborative Care

A new journal article by Oncofertility Consortium members explores the fertility and parenthood concerns of adolescent and young adult (AYA) female cancer survivors and the various components that lead to their reproductive decisions. The qualitative study that begot this article aimed to provide additional insight into how AYA survivors make fertility and parenthood decisions and what barriers they face along they way. “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors,” by oncofertility researchers Jessica R. Gorman, Samantha Baily, John P Pierce and Irene Su in the Journal of Cancer Survivorship, presents in depth information on an issue that has not been thoroughly explored in existing scholarship.

Six themes emerged from the analysis of the data gathered from study participants: (1) A hopeful but worried approach to fertility and parenthood, (2) Frustration with a lack of choice or control over fertility, (3) Young survivors want information about their fertility, (4) Young survivors want better continuity of care in survivorship, (5) Cancer diagnosis and related fertility problems introduce relationship challenges, and (6) Decisions about parenthood are complicated.[1]

The overriding theme of this study and something the Oncofertility Consortium is working tirelessly to improve, is the importance of collaborative, comprehensive medical care for young cancer patients. Study participants described feeling disappointed with the care they received as patients and the lack of coordination among providers treating them.  Specifically for patients experiencing long-term side effects such as the loss of fertility, much of the burden of managing their care fell onto them as their providers focused on their immediate need for treatment and did not discuss at length or in some cases, at all, potential long term consequences of treatment. These findings are consistent with previous research suggesting that there is an unmet need for fertility preservation counseling at the time of diagnosis.

Understanding the concerns of young cancer survivors is the first step toward developing an effective and appropriate treatment plan that is consistent with the needs of the AYA population. As we now know, the AYA cancer community presents its own set of unique challenges when devising a comprehensive treatment regime. Collaboration among health care providers is an important step toward improving the quality of care from cancer patient to cancer survivor. Click here to read, “How Do You Feel About Fertility and Parenthood? The Voices of Young Female Cancer Survivors.”


[1] Gorman, J, Bailey S, Pierce JP, Su HI. Journal of Cancer Survivorship. 2011, Dec 17.

Grand Rounds at the University of Illinois at Chicago: Legal and Ethical Implications of Fertility Preservation

In the next few weeks, the University of Illinois at Chicago (UIC) will be hosting an exciting new Grand Rounds session with Oncofertility Consortium  member, Dr. Jennifer Hirshfeld-Cytron, as the guest speaker.  “Legal and Ethical Implications of Fertility Preservation: A Case Based Approach,” will take a closer look at the ethics behind oncofertility on February 8th from 12-1pm at UIC.

Dr. Hirshfeld-Cytron will begin by discussing the various fertility preservation options patients have based on their diagnosis and cancer treatment plan. She will also discuss how patient care is handled collaboratively in this burgeoning new field. Much of the success in a multidisciplinary field is based on communication and how effectively teams work together. The Oncofertility Consortium can be seen as a model for team science through its ability to bridge the gap between clinicians, researchers, and the social sciences.

Finally, Dr. Hirshfeld-Cytron will discuss current literature related to the clinical, legal, and ethical implications of fertility preservation strategies in breast cancer, ovarian germ cell cancer and pediatric patient populations.  Read Dr. Hirshfeld-Cytron’s recently published a paper with Drs. Gracia and Woodruff entitled, Nonmalignant Diseases and Treatments Associated with Primary Ovarian Failure: An Expanded Role for Fertility Preservation.  A panel discussion will follow with  clinicians and scholars  from obstetrics, gynecology, pediatrics, law, and hematology-oncology.  For more information or attend this Grand Rounds, contact L. Anderson-Shaw at 312.413.3805.  We hope to see you there!

Training the Next Generation in Oncofertility: Part 3

From left: Irene Su, Laxmi Kondapalli and Maureen Prewitt

This is the final installment in a 3-part blog series featuring Oncofertility Consortium member, Laxmi Kondapalli, MD, MSCE.  In this post, we take a look at her current position at the University of Colorado and her latest research endeavors. To read the 1st  blog, click here and for the 2nd post, click here.

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Mid-2011,  while Laxmi was finishing up her clinical work at the University of Pennsylvania (Penn), she was recruited by the University of Colorado in Denver to start the first fertility preservation program in the mountain region. Laxmi accepted with the goal of creating a comprehensive wellness program at Denver and in September of 2011, she began working at her current position as an Assistant Professor of Obstetrics and Gynecology.

Laxmi is working on a women’s reproductive health research grant, meaning that 75% of her time is protected for research, and 25% of her time is reserved for clinical care.  According to Laxmi, “Given that I do clinical research and that my area of interest is fertility preservation, there’s a lot more fluidity in the composition of my time because so many of my patients that I see clinically, I also try to recruit into my research protocols.” Even though the University of Colorado is a part of the National Physicians Cooperative (NPC), they had yet to have any patients who had undergone ovarian tissue freezing. Laxmi made it her mission to make fertility preservation a big presence on the university campus. She works with the cancer center, breast oncology unit and she has special privileges at the children’s hospital working with the pediatric team on fertility.  Laxmi explains, “I want to make sure that fertility preservation is a component of care for all patients.”

Currently, Laxmi is involved in several research projects for men and women including; Reproductive Outcomes in Cancer Survivors: Examining Perinatal Outcomes in the Women with a History of Cancer; Semen Parameters in Adolescent Male Cancer Patients; and Reproductive Potential in Young Breast Cancer Survivors: Interplay between Markers of Ovarian Reserve, Metabolism and Tumorogenicity. However, her research is not just science based, it has an outreach component as well. In Fall 2012, in conjunction with Fertile Action and the Oncofertility Consortium, Laxmi is launching the PACT program (Parenthood After Cancer Treatment), which is a patient and provider outreach program on fertility preservation. Patients and providers spend a day learning about the long term consequences of cancer treatment, fertility preservation and where to go to access it.

In sum Laxmi says,  “I stayed in academics because I like academics and because I am the product of great mentorship. I hope to inspire residents and fellows that I work with in the same way that I was inspired.”

Factors Affecting Fertility Preservation: A New Study

A recent paper by Oncofertility Consortium trainee, Jayeon Kim, MD, indicates that certain women are more likely to undergo fertility preservation prior to cancer treatment than others. The authors, Jayeon Kim, Kutluk Oktay, Clarisa Gracia, Sanghoon Lee, Christopher Morse, and Jennifer E. Mersereau, found that women were more likely to under go embryo or egg banking if they were wealthier, thinner (lower BMI), had less-advanced disease, and did not undergo neoadjuvant treatment prior to surgery.

In the paper, “Which patients pursue fertility preservation treatments? A multicenter analysis of the predictors of fertility preservation in women with breast cancer,” the authors examined demographic and clinical information of women diagnosed with breast cancer at three centers around the United States. While previous studies have asked which factors affect the likelihood that a woman will be referred for a fertility preservation consultation, this one evaluated which women are most likely to undergo fertility preservation treatment after that initial consult.

Of the four factors that positively correlated with undergoing fertility preservation treatment, only one of them is modifiable in the short time after a cancer diagnosis. Neoadjuvant therapy includes chemotherapy, radiation, and hormonal treatments prior to surgery. It is often given to patients with more advanced disease and those with a shorter time period between diagnosis and the onset of treatment, which may prevent time for the hormonal stimulation of the ovaries required for embryo and egg banking. One option for these women may be ovarian tissue cryopreservation, an experimental fertility preservation technique that does not require two weeks of hormonal stimulation.

Of the 185 women in the study published in Fertility and Sterility, more than half of them underwent fertility preservation treatment from 2005 to 2010. In addition to the factors that positively correlated with treatment other factors are equally interesting. The authors found that age, having children previously, and presence of a partner or spouse did not affect fertility preservation treatments. Interestingly, insurance coverage status also did not have an effect, possibly because insurance coverage for fertility preservation is inconsistent.

This significant work can help oncofertility specialists better care for their patients in the future. As one of the mission’s of the Oncofertility Consortium is to train the next generation of experts in cancer and fertility, we are proud of the research that Dr. Kim has performed. Read more about the oncofertility training program.

 

Training the Next Generation in Oncofertility: Part I

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!

Oncofertility 101: A New Course in Emerging Fertility Preservation Techniques

By Francesca Duncan

Most cancer therapies, while life-preserving, can threaten the future fertility of both males and females.  Fortunately, the menu of fertility preservation options is broad, and due to ongoing research efforts through the Oncofertility Consortium and around the globe, these options are ever-expanding.  Hydrogel-based in vitro follicle growth is one such investigational technology developed by Oncofertility Consortium researchers in which immature follicles are isolated directly from ovarian tissue and grown in alginate, a natural biomaterial derived from algae.  This system supports follicular architecture through terminal stages of follicle development and has been shown in the mouse to produce eggs that give rise to healthy offspring.  Research is now focused on optimizing this system to produce live offspring in primate species.

As interest in learning and applying such technologies to the field of fertility preservation has increased, the Oncofertility Consortium launched a new course entitled: Oncofertility 101: a training course in in vitro follicle growth using alginate hydrogels.”  This is an intense one-day course in which participants experience  hands-on laboratory exercises aimed at learning the fundamentals of follicle micromanipulation, encapsulation, culture, and quality analysis.  This course “ensures that the transmission of technical skills needed to successfully grow healthy follicles in three dimensions are acquired quickly in order to advance the pace of reproductive research” emphasizes Teresa Woodruff, PhD, Director of the Oncofertility Consortium.  In addition to the laboratory exercises, Lonnie Shea, PhD and Min Xu, MD, PhD, both pioneers of this technology, present crucial insight into the evolution of follicle culture biomaterials and the ins and outs of setting up a follicle culture laboratory, respectively.  The course is led by Francesca Duncan, PhD, a Research Associate in the Woodruff Laboratory.

The first Oncofertility 101 course, held in September 2011, was very successful.  Participants came from diverse scientific backgrounds, including basic science, embryology, endocrinology, and biotech.  Participants found the course to be “excellent” and “a great opportunity.”  One person commented: “To really understand a technology I think you need to know how it is done so while I had read considerably about the technique, until yesterday, I did not have that important insight that goes with actually doing the technology… thank you for your time and effort and especially for your patience. It’s been twenty years since I actually sat at the bench and manipulated gametes!”

Oncofertility 101 is held twice a year, and the next course is right around the corner on Monday, March 12th.  This course is free of charge but registration is limited to five participants.  If you are interested in registering or would like more information, please click here.  The second 2012 Oncofertility 101 course will take place on Wednesday, September 26th, to coincide with the 2012 Oncofertility Consortium Conference.

 

 

The Role of OB/GYN in Comprehensive Cancer Care

What is the role of an obstetrician/gynecologist in cancer care for young women? When you think about cancer and cancer treatment, most likely you’re thinking of oncology and what line of defense will be taken against the cancer. A new article in Clinical Obstetrics and Gynecology from Oncofertility Consortium members, Betty Kong, BA, Robin Skory, BS, and Teresa K Woodruff, PhD, entitled “Creating a Continuum of Care: Integrating Obstetricians and Gynecologists in the Care of Young Cancer Patients,” argues that in some cases, the OB/GYN is the key component in this game.

Kong and Skory are both Woodruff Lab members pursuing dual MD/PhDs at Northwestern University, meaning they want to be involved in both the clinical and research aspects of oncofertility. Clearly they are invested in the scientific pathways oncofertility has to offer, but from a clinical perspective, they assert that obstetrician gynecologists are the best advocates for their patients to help them make informed decisions about their future fertility. According to the authors, “obstetricians and gynecologists [are] the primary physicians to many women during their reproductive years [thus] are in a unique position to be at the forefront of the oncofertility initiative by ensuring [they receive] the proper counseling, referrals, and continuity of care for their patients before, during, and after cancer treatment.”

For many young women, once they’ve reached the pinnacle of pediatric care (18yrs old), they are no longer regularly immersed in follow-up medical care as parents, schools, etc, require. Often the physician they see the most is their OB/GYN, whether it be for birth control options, pre natal care or their yearly exams. Many young women build long-standing patient/physician relationships with their OB/GYN as they did with their pediatricians. It is with this understanding that the authors claim the responsibility for the continuum of care falls upon the OB/GYN in many cases. Thus, the more informed they are in the field of oncofertility, the less patients will encounter a gap in their comprehensive cancer care, specifically in fertility preservation.

An OB/GYN is also in a key role should a cancer diagnosis present itself during a woman’s pregnancy. More studies need to be done on the long term affects of chemotherapy regimes on fetus development and future fertility, but there are treatments that women can undergo in their second and third trimester of pregnancy to try and eradicate the disease. According to the authors, “although it is an uncommon diagnosis, cancer during pregnancy presents a critical scenario that must be carefully treated by a multidisciplinary team of obstetrician gynecologists, medical oncologists, radiation oncologists, surgeons, pediatricians, genetic counselors, and patient navigators.” Again, as the multidisciplinary field of oncofertility develops, it is imperative that clinicians and scientists from diverse fields collaborate to provide patients with the best care possible and the most options for their future fertility.

To read the article, “Creating a Continuum of Care: Integrating Obstetricians and Gynecologists in the Care of Young Cancer Patients,” please click here.

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