Collaboration and Consistency in Oncofertility

Counseling cancer patients on their fertility options can be a complicated process. Clinicians caring for cancer patients bear the responsibility for making sure that their patients are well-informed and understand all of their options.  As treatment regimes evolve, determining whether or not an individual’s fertility will be compromised can be difficult. For those that elect to have fertility preservation, their options are specific to not only their treatment plan, but also the type of cancer they have, their age at the time cancer treatment begins and ends, pre-existing fertility, etc… There are also risks involved with the procedures required to acquire reproductive tissue as well as with IVF medications. Collaborative work and research as modeled by the Oncofertility Consortium, will help in establishing a set of guidelines specific to oncofertility patients that clinicians can use to help counsel them on their options.

Effectively treating the cancer is an oncologist’s first priority, but ideally they also initiate the conversation about fertility preservation with patients as well. Since current data in the field is often incomplete or limited, clinicians need to be careful not to solely rely upon that for their counseling sessions.  It’s important for clinicians to offer patients options for further discussion with someone who has expertise in reproductive medicine and assisted reproductive technologies (ART). Collaboration between the oncologists and the reproductive medicine specialists is the best way to make sure that a patient is receiving consistent information for their specific case and that they are being treated in a timely manner.  This collaboration also makes the entire medical team accountable to the patient’s treatment, both for cancer and fertility preservation.

In order to successfully ensure that a patient has been properly educated on all of their fertility preservation options, including all of the risks and the “unknown’s,” it’s recommended to implement a process for obtaining informed consent from an oncofertility patient. One way to do this is by following the American Society for Reproductive Medicine’s (ASRM) practice committee guidelines for counseling and consenting patients in regard to fertility preservation.  ASRM guidelines address experimental therapies, considerations for posthumous reproductive decisions, relationship changes (divorce), safety precautions and variety of other issues that are relevant to fertility preservation in oncofertility patients.  Referring to existing guidelines is helpful in achieving consistency; however, as the field of oncofertility evolves collaborative work and research is needed to answer the remaining questions associated with fertility preservation and cancer.

To learn more about counseling and consenting oncofertility patients, please read, “Counseling and Consenting Women with Cancer on their Oncofertility Options: A Clinical Perspective,” by Emily S. Jungheim PhD, Kenneth Carson PhD, and Douglas Brown PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Post Cancer: Pregnancy, Adoption, and Infertility

Preparing to parent after cancer treatment can be both an exciting and a terrifying journey depending on what your experience with cancer was and what your current parenting options are.  A recent podcast entitled “Adoption or Infertility Treatment after Cancer,” broadcast by Creating a Family, a nonprofit providing education and resources for infertility and adoption, tackled this issue with a panel of four experts, including Irene Su, M.D., MSCE, Assistant Professor of Reproductive Medicine at University of California in San Diego (UCSD) and member of the Oncofertility Consortium. The panel spoke in depth about issues surrounding pregnancy, adoption, infertility and recurrence.

One topic that particularly stuck out in my mind was the discussion as to whether or not attempting to become pregnant after treatment increased a cancer survivor’s chance of recurrence, specifically with hormone related cancers such as breast cancer.  According to Dr. Su, “most studies show that there is not an increased risk for recurrence; however, the majority of oncologists would suggest that a patient wait until they are out of the recurrence stage before attempting to get pregnant.” Beyond the clinical aspect of this issue, is the personal. The fear that many women have of recurrence if they were to get pregnant, regardless of what science suggests. After having been through such a traumatic and life changing experience, not every woman is emotionally prepared to invest in a pregnancy. Those that do make that decision should consult with both a high-risk obstetrician and a reproductive endocrinologist to insure that they are in the care of health professionals that understand the specific issues relevant to cancer survivors.

An alternative for cancer survivors interested in having children, but not wanting to attempt pregnancy or being left infertile as a result of treatment, is adoption.  Adoption can sometimes be a little more complicated for cancer survivors because not all adoption agencies allow cancer survivors to adopt for fear that the child will lose the adoptive parent to the disease or that the parenting experience will not be optimal due to the possibility of recurrence. Other adoption agencies have specific guidelines for how long an individual has to be cancer free before they are eligible to adopt. For example, in Korea there is a five year wait and in China, the waiting period is 10 years without recurrence before you are eligible to adopt. Many domestic adoption agencies have a shorter wait time, but ultimately it is determined on a case by case basis. In 2010, members of the Oncofertility Consortium performed an analysis of domestic and international adoption agencies as they pertained to cancer survivors and then compiled a list of cancer-friendly adoption agencies that survivors could refer to when researching their options.

As a result of the complicated dynamics involved with parenting post cancer, it’s important for newly diagnosed cancer patients to know their options in terms of fertility preservation before beginning treatment. According to Dr. Su, “there are no exact studies about infertility and cancer, just a strong idea about likelihood,” so it’s important to be well-informed about fertility preservation and your specific options. There are many different roads to parenthood, but the more informed you are, the better off you’ll be. To listen to this podcast, go to http://www.creatingafamily.org/radioshow.html.

Deciding Your Future in Cancer’s Wake

Young cancer patients who choose fertility preservation in the midst of a cancer diagnosis reveal their belief in a future for themselves and in their body’s ability to create life even when faced with death. Oncofertility technologies offer possibilities to cancer patients asking them to contemplate creating life during a time when their own is in question.  This changes the road to parenthood in some ways, yet the overwhelming desire to create a future for oneself remains the same. Understanding this innate desire can help healthcare practitioners be more prepared to guide their patients in the decision-making process.

Even if a cancer patient chooses fertility preservation, there are no promises that they will later become parents so what drives the decision-making process if there are no guarantees? Some suggest that the hope for a future and new life embedded in the idea of fertility may negate many of the painful feelings associated with cancer. This idea of an “imagined” future allows the patient to confront their current diagnosis and the dire circumstances surrounding it with a renewed sense of hope and determination. Fertility preservation can become a coping mechanism for cancer patients allowing them to see a life post-cancer.

Although some may argue that it is irresponsible to pursue fertility preservation if you are not prepared to be exceptional parent in that moment, choosing fertility preservation doesn’t necessarily mean that you are choosing to be a parent. It means you are choosing to have options. It means you are protecting your right to have a biological child when and if you decide that it is right for you. For adolescents, it may mean you are placing value on your future and your imagined self as an able and fit parent.  In studies, researchers have found that an individual’s capacity to aspire to a healthy and positive future is often linked to their current well-being.

In order to provide the best possible care for cancer patients seeking fertility preservation, the healthcare community needs to understand the decision-making mechanisms underlying those choices.  It may be the innate desire to have a child or it may be a method for creating future goals and setting the stage to achieve those goals. Either way, they need the proper support and guidance to navigate the intersection between life and death. To learn more about this topic, please read “Choosing Life When Facing Death: Understanding Fertility Preservation Decision-Making for Cancer Patients,” by Shauna L. Gardino, PhD and Linda L. Emanuel, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Cryo 2011: Refining Fertility Preservation

Many young cancer patients prior to treatment undergo fertility preservation applications that utilize cryopreservation techniques such as egg banking, embryo banking and sperm banking. On July 24th – 27th, the 48th Annual Meeting for the Society of Cryobiology will be held at the LaSells Stewart Center on the campus of Oregon State University in Corvallis, Oregon.  Essentially, this is a meeting of scientists who study the biophysics and applications of freezing and thawing cells (human cells, plants cells, blood cells, etc…) to be thawed out later and used for various applications.  Cryobiologists attempt to get water outside of cells and instead fill them with cryoprotectants and then do the opposite process when they thaw cells or tissue out.

One of the Consortium’s members, Mary Zelinski, PhD is helping to organize a symposium on cryobiology in assisted reproductive technology with Steve Mullen, PhD speaking on oocyte cryopreservation. Steve Mullen is a scientist at 21st Century Medicine and trained in both cryobiology and reproductive physiology. According to Dr. Zelinski, “he understands both fields which is rare and this is a gap in training that would benefit fertility preservation.”

The Society of Cryobiology in general is small because few people work solely in cryopreservation as a career.  Cryo 2011 is an important conference because it’s essential to get the individuals who understand the physics behind cryopreservation together to work with other scientists in related fields.

The conference will have 7 keynote speakers on various topics including, anhydrobiosis and oocyte cryopreservation. The conference is also offering a limited number of student travel awards to offset the cost of travel, lodging and meeting registration fees.  To apply for a travel award, a student must submit an application form by April 25, and participate in one of the student presentation competitions. Finally, organizers of the conference are calling for abstracts. The deadline for submission is May 2nd. For more details on Cryo 2011, go to www.cryo-2011.org.

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.

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