Gilda’s Club Chicago: Creating Community Through Cancer

Cancer is a disease that touches many people’s lives both directly and indirectly thereby creating a need for community based cancer support organizations. One such organization, Gilda’s Club, opened their signature Red Door in 1995 and since then, has been fostering a community of free support for men, women and children living with cancer as well as their caregivers and friends. What sets Gilda’s Club apart from other organizations is their unique ability to recognize and respond to the needs of the local cancer community through innovative programming.  Gilda’s Club Chicago was initially focused on bringing the cancer community together in their home-like clubhouse in the River North neighborhood, but within the last two years, the organization expanded their program to Chicago hospitals, creating their own unique niche in cancer care.

Gilda’s Club Chicago’s hospital initiative began out of need to bring cancer support services to individuals who might not be able to easily access the clubhouse.  This original program provides networking, support groups, workshops, education and social activities for patients, survivors, caregivers and friends at several local hospitals.  Outreach Coordinator, Amy Coleman said that the main goal of the hospital initiative was to continue “creating community by bringing people together.”  Currently the program at the Lurie Cancer Center has approximately 20 hours of programming which include yoga classes, T’ai Chi, arts and crafts as well as networking groups on such topics as “Parenting with Cancer,” and “Starting a Family After Cancer.” Coleman also said that in the next few months, they’re hoping to increase their presence at Lurie.

Another great benefit of the hospital initiative is the convenience it provides to patients, caregivers and friends. Oftentimes patients find their way into the programs offered through Gilda’s Club while they are waiting for their appointment. According to Amy, “you’ll often find patients in here with their buzzers participating in a session while they are waiting to be called in by the doctor.” Parents undergoing cancer treatment can also bring their children to some of the workshops which provide a great alternative to sitting in the waiting room as well as one less thing a parent has to be concerned about in an already strenuous time.

To find out more about what Gilda’s Club Chicago has to offer, including programs and events for young adults with cancer, please visit the website at www.gildasclubchicago.org. Their hospital programming can currently be found at:

 

Male Fertility Preservation: More Than Just Sperm Banking

Fertility preservation for men is a usually a relatively straightforward process involving the collection of a sperm sample and cryopreserving it for later use. While this procedure works for many individuals, it isn’t an option for everyone, including boys who are too young to produce sperm or male cancer survivors whose fertility has already been affected by cancer treatment. Two techniques may help meet their needs.

Previously it was assumed that most male survivors of cancer whose semen contained little to no sperm were incapable of fathering children, but a new surgical technique called microdissection testicular sperm extraction (TESE) can give these men a new way to achieve fertility.  TESE enables doctors to extract healthy sperm cells from men whose testicles have been severely damaged by chemotherapy. Once the sperm is extracted, an in vitro fertilization technique is applied to fertilize an egg, potentially resulting in pregnancy. Much of the success rate of sperm retrieval was determined by the type of chemotherapy the men received, with men being treated for testicular cancer being the best candidates for this procedures and men who were treated for sarcoma, having the lowest success rate.

In addition to sperm extraction as a male fertility preservation method, new research suggests that boys could have testicular tissue removed and kept in storage for later use. In a recent study, scientists grew mouse sperm in a laboratory from testicular tissue that had been frozen for up to 25 days. Researchers cultivated small pieces of tissue from the testes of baby mice on a gel steeped in nutrients and after several weeks, they collected viable sperm from the tissue. The mouse sperm appeared to be healthy and produced 12 live births of mouse pups that went on to have young of their own. Thus far, this has been the most successful attempt to grow sperm from testicular tissue in the laboratory acting as a potential stepping stone to the creation of human sperm in the future.

It is important that men know all their fertility options when faced with cancer or a disease whose treatment may compromise their ability to reproduce. These techniques may give men and young boys the potential of parenthood.

Chicago’s Children’s Memorial Hospital Expands its Fertility Preservation Program and Performs First Ovarian Harvest

Children’s Memorial Hospital is expanding its fertility preservation services to its young cancer patients and their families. In February, Marleta Reynolds, MD, Chief of Surgery, and Julian Schink, MD, from Northwestern Memorial Hospital, performed the hospital’s first ovarian harvest on a female patient who is about to undergo aggressive chemotherapy and radiation.

“I am confident that this groundbreaking surgery and techniques now in research stages will one day make it possible for young women who risk infertility from cancer treatments to have children of their own,” said Reynolds.

Children’s Memorial is a member of a nationwide Oncofertility Consortium at Northwestern University which is supported by a grant from the National Institutes of Health. This consortium of fertility experts, endocrinologists and researchers are testing to see if a harvested ovary can be fertilized for reproduction. Young cancer patients choosing ovarian harvest surgery are participating in this important research.

“Thinking about a young girl’s future fertility at the time of a cancer diagnosis is an important part of the cutting edge care offered by Children’s Memorial Hospital,” said Teresa Woodruff, Ph.D., Chief of the Division of Fertility Preservation at the Feinberg School of Medicine and Director of the Oncofertility Consortium.

Barbara Lockart, APN, MSN, who is a nurse practitioner in the hospital’s Long Term Survivor’s STAR Clinic, has been counseling young patients for several years on their fertility options. “By doing this procedure at Children’s Memorial, we are showing our commitment to fertility preservation,” said Lockart. “For years we have been offering male patients the option of banking their sperm. Now we are in a position to offer young female patients the option of harvesting their ovaries. The research holds promise that these girls will be able to start a family when they are ready.”

Lockart says fertility preservation can also apply to patients treated in other disciplines, such as patients with genetic disorders that might cause infertility and rheumatology, that also use medications which might result in infertility.

Children’s Memorial is one of the top pediatric hospitals in the country according to rankings in U.S. News & World Report. It is the pediatric teaching hospital of Northwestern University Feinberg School of Medicine. In June of 2012 Children’s Memorial will be moving to its news hospital in downtown Chicago, Ann & Robert H. Lurie Children’s Hospital of Chicago.

Young Cancer Survivors Celebrate at Chicago’s Museum of Science and Industry

Just a few weeks from now, Young Adult Cancer Awareness Week will promote the unique challenges that young adult cancer patients and survivors face, including fertility, other long-term effects, education and career impediments, and more. This 9th annual week of education from April 3-9, 2011 will see events around the country and the world to celebrate young cancer survivors.

In Chicago, Illinois men and women who were diagnosed with cancer between the ages of 18 and 39 are invited to a private event at the Museum of Science and Industry, the largest science museum in the Western Hemisphere.  The Thursday, April 7 event, called A Night at the Museum: An Evening for Young Adults Touched by Cancer, will include a cocktail reception in the spacious entry hall. A panel discussion with survivors and young adult experts will discuss the different perspectives on, “What Makes a Young Survivor Unique?” This panel will provide young adult survivors with information about their health and connect them with support and advocacy services that can help them proactively manage survivorship.

After the panel discussion, young adult attendees will receive a personalized introduction to the You! The Experience exhibit at the by the curator of the exhibit. A private exploration of the exhibit will introduce survivors to the many aspects of the human body including the mind, appetite, heart, movement, and laughter. Young adult advocacy programs and services geared to each of these elements will also be available throughout the evening.

The Evening for Young Adults Touched by Cancer will begin at 6pm and is open to all cancer survivors diagnosed between 18 and 39 and a guest. The Museum of Science and Industry is at 57th St. and Lake Shore Dr. in Chicago. All attendees must be 21 to attend. The $15 cost of the event covers museum admission, reception, and parking.  For information on scholarships, contact jorie-rosen@northwestern.edu. Click here to register by April 4.

Thoracic Surgical Oncology Nursing and Interdisciplinary Cancer Care

Comprehensive cancer care employs an interdisciplinary approach to providing expert diagnosis, treatment, and support to individuals with cancer. A team of radiologists, surgeons, pathologists, oncologists, fertility specialists, social workers, psychiatrists, support groups and other health care professionals work collaboratively to deliver individual treatment plans to every patient with cancer. One of those groups, the thoracic surgical oncology nurses, act in diverse capacities for cancer patients as educators, advocates, and subject experts. As such, these surgical oncology professionals must continually stay on top of advances in patient care.

In 2004, the Robert H. Lurie Comprehensive Cancer Center at Northwestern University launched the first Thoracic Surgical Oncology Nursing Conference. Every year since, this successful conference has highlighted emerging topics to surgical oncology nurses and wellness care professionals including nutritionists and dieticians. This year’s 7th Annual Thoracic Surgical Oncology Nursing Conference will be held on Thursday, April 7th at Northwestern University’s Prentice Women’s Hospital.

Susan Collazo, a Nurse Practitioner at Northwestern Memorial Hospital, explains that the Thoracic Surgical Oncology Nursing Conference this year will focus on lung cancer and introduce the healthcare community to the latest findings in that area. Additionally, this year’s conference will focus on the relationship between patients with a history of smoking and chronic obstructive pulmonary disease (COPD) to lung cancer.  The conference will also include a testimonial from a young lung cancer survivor, Jill Feldman.  As part of their advocacy work, any time a person of reproductive age is diagnosed with cancer, a nurse practitioner ensures that the patient is given a fertility preservation consultation with an oncofertility specialist.

Any interested RN, Respiratory Therapist, fellow APNs/PAs and other health care professionals are welcomed to register for this dynamic interdisciplinary conference held on April 7th in Prentice Hospital. Registration for this popular meeting is still open so please call Physicians Services at 877-926-4664 to ensure your spot today.

Oncologists: The Gatekeepers to Fertility Preservation

Last Thursday, members of the Oncofertility Consortium had the pleasure of attending a presentation by Karrie Ann Snyder, PhD, a lead research scientist in the Oncofertility Consortium who studies the way patients communicate information with their providers and what they perceive the provider is telling them.

In a recent study, Dr. Snyder asked what young female breast cancer survivors recalled about fertility preservation discussions and decisions. The patient group was collected from across the United States and were not a part of the Oncofertility Consortium.

Dr. Snyder used two different analyses to trace women’s experience from diagnosis to the beginning of treatment and examined how they learned about, or if they did, fertility preservation and how they made fertility preservation decisions. She wanted to see who was or wasn’t learning about fertility preservation options and what factors seem to shape that process.  She found that there are many ways that the patient-physician dialogue can be improved to provide better fertility preservation information.  Importantly, and perhaps not surprisingly, her work highlighted the central role that the oncologists played in decisions about all health matters during the time of her cancer treatment.  In her talk, Dr. Snyder stated that, “Oncologists are the gatekeepers to fertility preservation,” for young cancer patients. So oncologists are a critical part of the equation in providing accurate and timely information about the fertility threat of cancer treatment and referring their patients to an oncofertility specialist.  The National Fertility Hotline at 866-708-FERT (3378) is a good way for oncologists to get the help they need for their patients in a rapid and timely manner.

Dr. Snyder’s work will continue to explore how patient-provider interactions can be improved.  We will highlight forthcoming papers from her work to keep the community up to date on this important topic.

The Need for Cancer Care in Developing Countries

The past four decades has seen significant leaps in cancer survival rates…in the United States. However, what are the cancer diagnoses and survival chances for someone born in a developing country? Dr. Mark Agulnik, an assistant professor in Medicine-Hematology/Oncology at Northwestern University’s Feinberg School of Medicine recently talked about the cancer patients he saw while working in Haiti after a devastating earthquake hit the country in January 2010.

Even before the earthquake, people on Haiti had different economic and medical challenges than those in the US. While it shares an island with the Dominican Republic, a relatively stable and prosperous country, the Haitian side of the island has been deforested and has little industry to maintain the economy. The Human Development Index designates it as the poorest country in the Americas where half of the population is illiterate and life expectancy is 53 years old, more than 20 years shorter than in the United States. When the 7.0 magnitude earthquake hit, it killed 316,000 people and instantaneously made 1.5 million people homeless. When Dr. Agulnik first visited the country in the weeks after the quake, there was no commerce, tent villages housed the homeless, and a cholera epidemic was emerging due to a lack of sanitation.

Less than 1 year after the quake, medical care has improved and specialized cholera hospitals are limiting the spread of outbreaks. Dr. Agulnik, who most recently visited the country in December of 2010, described how he used his expertise as a hematologist and oncologist, who specializes in blood diseases and cancers, to treat Haitian people. He discussed a variety of patients who came into his small hospital in Port-au-Prince with advanced neck, gynecological, and thoracic cancers. In contrast to treatment within the United States, the team in Haiti worked to decrease the symptoms of these patients and ease their suffering but they did not have the tools and drugs to cure the cancers.

In addition to lacking the resources to treat these advanced cancers, many developing countries, such as Haiti, have not established screening programs that could catch cancers early and increase survival rates. Such programs are the next front in cancer care as, “More people die from cancer in the developing world than tuberculosis, HIV, and malaria,” stated Agulnik. Fortunately, organizations such as Project Medishare, the American Red Cross, and ASCO International Cancer Corps work to provide medicine and medical education in resource-limited settings. With this effort, cancer survival rates will increase in developing nations, making survivorship issues more important for these populations. Work at the Oncofertility Consortium examines the potential oncofertility needs, such as fertility preservation, of cancer patients in developing countries.

MyOncofertility.org: Fertility Preservation Made Accessible

Cancer patients and their loved ones must make an incredible number of important decisions upon diagnosis. It’s a time of extreme stress and emotions run high. Not only do they have to absorb the shock of a cancer diagnosis, they also have to navigate through the world of treatment options. Since many treatment options can harm a cancer patient’s fertility, it is essential to inform them of such risks to provide them with the greatest number of options for later fertility.

 

MyOncoferility.org was conceived to meet the needs of young cancer patients and their loved ones through patient education. Since fertility preservation may be neglected in the initial discussions following a cancer diagnosis, it was important to create a tool that patients could utilize to learn more about their fertility options.  It’s also a resource that can be used in conjunction with the information they receive from their health care provider. At the time of diagnosis, patients must absorb a great deal of information on oncology and may feel overwhelmed by the thought of tackling yet another major life decision, such as fertility, when it’s presented to them. In those situations, MyOncofertility.org provides a resource for these patients to learn about their fertility options in a easy-to-understand way.

 

MyOncofertility.org was designed with the knowledge that patients may be operating on information overload after a cancer diagnosis. As individuals navigate through the site, information progresses from simple to complex per the users request –allowing them to control the browsing experience.  MyOncofertility.org also features the testimonials of survivors and relatives of cancer patients in an attempt to foster solidarity through shared experience. One of the motivations for the website was to help users identify with others under similar circumstances to alleviate the feeling of isolation that often comes with a cancer diagnosis. Testimonials can be particularly useful for children, individuals with poor literacy and those with impaired vision, reaching a broader audience. Finally, Myoncoferitlity.org employs a Q & A model to create an interactive learning experience that mimics the face-to-face dialogue, which might occur between a provider and patient. A follow-up question and answer process is then initiated and users are presented with additional resources to look into if they desire more information.

 

MyOncofertility.org is a fluid project that is constantly evolving to keep in step with technology and meet the needs of users. In September 2011, MyOncofertility.org also introduced a Spanish language version to make the website more accessible to a larger constituency. To learn more about MyOncofertility.org please click here. You can also learn about how the project got started in “MyOncofertility.org: A Web-Based Patient Education Resource Supporting Decision Making Under Severe Emotional and Cognitive Overload,” authored by Kemi Jona and Adam Gerber and found in Oncofertility: Ethical, Legal, Social and Medical Perspectives.

Oncofertility Saturday Academy: Two Graduations in Two Weeks

The last two weekends saw graduation events from Oncofertility Saturday Academies more than 2,000 miles apart. On February 26, the academy based out of Oregon Health & Science University graduated 10 freshmen through senior high school students. The young men and women in the program spent multiple Saturday mornings this winter with Mary Zelinski, PhD, learning about fertility and cancer, practicing surgical techniques on fruit, and discussing ethical issues in oncofertility. The students also met with a 24 year-old leukemia survivor who preserved her fertility with egg banking.  Though her fertility had been preserved, the survivor shared the continuing dilemmas she faces as a cancer survivor, including what to tell potential boyfriends about her fertility.

 

As Oregon Health & Science University is a worldwide center for research on non-human primates, Dr. Zelinski provided the 2011 Oncofertility Saturday Academy students with the opportunity to perform an ultrasound on a pregnant female monkey, an opportunity that very few scientists ever get to experience. In the last week of their academy, the Oregon students had a busy day that included making alginate beads, acting as a physician on oncofertility case studies, and presenting a final poster on a topic in oncofertility.

 

Just one week later, the Chicago Oncofertility Saturday Academy held it’s final events for students and their families, called Family Oncofertility Saturday Academy. The day this past weekend included rotations through laboratory activities and provided the junior and senior high school girls with an opportunity to share their knowledge with family members. A ceremony later that evening included the graduation of thirty-two high school girls and a keynote speech by Andresse St. Rose, PhD, from the American Association of University Women, who studies barriers for women in the sciences and develops recommendations to increase these numbers. The standing-room only event provided students and their parents with the opportunity to celebrate their experiences.

 

The Oncofertility Saturday Academy has provided the students in Oregon and Chicago with exciting experiences they can look back on for years to come. While these programs have finished and the coordinators are (hopefully) taking a much-deserved break, the University of Pennsylvania oncofertility education program has just begun its own 6-week program.  We will continue to update you on the progress of these 10 girls throughout its session.

Miriam Menkin: One Woman’s Contribution to Fertility Research

Miriam Menkin with her husband and son

Last month I attended a lecture presented by Sarah Rodriguez, PhD addressing Miriam Menkin’s role in early in vitro fertilization (IVF) research.  Many people outside the world of reproductive endocrinology know very little about Menkin, if anything at all. Often when her name is mentioned, it is in regard to her relationship with John Rock and not as a scientist in her own right. In her lecture, Dr. Rodriguez gave Menkin her own story and in doing so, argued that we should rethink her contribution to IVF as well as how gender limited women’s opportunities in the scientific community.

Although she was a brilliant woman who aspired to become a doctor, Menkin like so many other women during the early 20th century, was unable to get an advanced degree preventing her from fully pursuing her own scientific interests. Her lack of sufficient academic credentials, gender and familial obligations prevented her from doing research in her own laboratory so she spent most of her career as a lab assistant helping other scientists with theirs. In 1937, she began working as a lab tech for John Rock to help him with, “the hunt for eggs,” and in 1944, she presumably discovered the first instance of IVF in Rock’s laboratory.  In a cruel twist of fate, Menkin was forced to move out of state shortly after this discovery when her husband’s position at Harvard was not renewed.  She spent six years away from Rock’s laboratory and returned only after she divorced her husband, but by that time Rock had moved onto birth control research. Menkin was never able to return to IVF research; however, it always remained her desire to.

As Menkin demonstrates, women have not been absent from scientific research in the early 20th century, many simply haven’t shared in the spotlight with their male counterparts. Who knows what Menkin might have achieved, had she been afforded the resources to continue exploring IVF. Although none of the 5 embryos produced in Rock’s laboratory with Menkin’s assistance resulted in a live birth, she was still an integral player in establishing that embryos could in fact, be created outside of the human body. To listen to Dr. Rodriguez’s lecture on Miriam Menkin, please click *here.

*An audio recording of this lecture will be made available within the next week.

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