We talk a lot about the importance of collaborative care at the Oncofertility Consortium. Often cancer patients have a variety needs that require multiple specialists, thus the need to consult and collaborate to ensure the patient is receiving comprehensive care is pertinent. In a new article in the journal Familial Cancer entitled, “The Consequences of Risk Reducing Salpingo-Oophorectomy: The Case for a Coordinated Approach to Long-Term Follow Up Post Surgical Menopause,” the authors Carmel Pezaro, MD, Paul James, MD, Joanne McKinley, Mary Shanahan, Mary-Anne Young and Gillian Mitchell, MD argue that young women who have had risk reducing salpingo-oophorectomy (RRSO) need improved support services from their healthcare team in the long-term aftermath of this surgery.

First of all, let’s start by going over what salpingo-oophorectomy is for those of you who don’t know. Salpingo-oophorectomy is the removal of the ovary(ies) together with the fallopian tube(s).  For young women with mutations in BRCA1 and BRCA2 genes, an RRSO is often recommended as a preventative measure against the increased risk for breast and ovarian cancer prior to natural menopause.  Up to this point, no long-term studies have been done on pre-menopausal women who have undergone RRSO  focusing on the wider physical consequences of the surgery (aside from sexual dysfunction) such as the severity of menopause symptoms and risk factors like osteoporosis.

The significance of menopause systems in RRSO patients is important to investigate due to research suggesting  that surgical menopause “may result in a more rapid decrease in bone density when compared to natural menopause, it’s association with cognitive impairment or dementia, and an increased risk of cardiovascular mortality.”  Often health care providers emphasize the importance of RRSO in preventative cancer care, but it is unclear whether or not the long-term consequences of this surgery and the management of those symptoms are addressed. Furthermore, symptom severity was markedly higher in women who were less than 50 years old prior to surgery regardless of their menopause status.  The authors hypothesize that one reason for this may be that younger women are more affected by the sexual consequences of menopause because they are engaged in a greater amount of sexual activity.

The results of this study demonstrate that women are not receiving appropriate structured support for their symptoms post surgery. The authors suggest that because their follow-up care crosses many disciplines, it falls between the cracks as providers assume someone else is taking care of it, therefore the medical team providing the long-term genetic follow-up should also be reasonable for coordinating the long-term post RRSO management in conjunction with general practitioners. Read the article, “The Consequences of Risk Reducing Salpingo-Oophorectomy: The Case for a Coordinated Approach to Long-Term Follow Up Post Surgical Menopause.”

What does empowerment mean to you? Does it mean giving someone the authority or power to do something… because that’s what you’ll find if you look it up?  The word is not a new one – it originated around the 17^th century and the meaning has remained largely the same. People have a need for a word that makes them feel that they are or are about to become more in control of their destinies, and this is especially true when faced with a cancer diagnosis at a young age. On Saturday, April 14^th from 10:00AM-4:00PM, the Robert H. Lurie Comprehensive Cancer Center will be hosting an event entitled, Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors.

At this inaugural event, young adult and adolescent cancer survivors will learn strategies and information to help them embrace life after treatment with confidence. Get EmPOWERed is an opportunity for everyone under the age of 40 who has been treated for cancer, including childhood cancer survivors who are currently 13 years of age or older, to share experiences and receive support. Family members, friends and caregivers are encouraged to attend as well!

Get EmPOWERed will cover a lot of ground so there is something for everyone.  Topics that will be explored include: talking about cancer with important people in your life; coordinating follow-up medical care; managing stress and other cancer-related emotions; making good choices about exercise and nutrition; addressing insurance, financial, legal and other practical concerns; exploring options for building a family after cancer with fertility preservation patient navigator, Kristin Smith; managing pain and other effects of cancer; and helping caregivers to care for themselves.

The event is being held at the LaSalle Power Company in Chicago and there is a small registration fee for participants, which includes all the workshops and admission to a VIP after-party event at Gilda’s Club Chicago.  This is a great event for the young cancer community so if you that sounds like you or someone you know, please come out and take part in this great event! For more information on Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors, including registration, please click here.

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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We are proud to announce that the International Society for Fertility Preservation newsletter for Fall, 2011 will include an article on the significant work of  Patient Navigators  in this field.  Read the reprint below!

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Cancer and its treatment often impair the future fertility of young cancer patients. Since the 1970s, simultaneous advances in cancer treatment and reproductive technologies have paved the way for increased cancer survivorship and successful treatment of infertility. Treatments for other conditions, such as rheumatologic, neurologic, and hematologic diseases may also cause fertility loss. To maximize the numbers of young survivors who can fully recognize their reproductive potential, significant hurdles—in the education, navigation, and support of patients and providers—must be overcome. With that in mind, the first Fertility Preservation Patient Navigator position was established in conjunction with the Oncofertility Consortium in 2007. This new position allowed a single person to shepherd patients between their disease specialist, such as an oncologist, and reproductive treatment team.

The Fertility Preservation Patient Navigator at the Oncofertility Consortium, Kristin Smith, is pivotal to providing streamlined care to young patients looking to preserve fertility. She provides triage services and comprehensive counseling for newly diagnosed cancer patients, both in person and for patients across the country through the FERTLINE national hotline [866-708-FERT (3378)]. This critical position addresses each patient’s fertility needs within the context of their individually tailored cancer management strategy, taking into consideration the priorities of both the patient and the disease specialist. The navigator provides highly personalized support services by helping young cancer patients and their families move through the sometimes challenging intersection of cancer therapy and fertility preservation treatments.

In addition to discussing options with patients, a Fertility Preservation Patient Navigator helps them navigate the complex details of fertility preservation. Depending on a patient, Smith may discuss a variety of financial, legal, ethical, or religious issues, often based on the scholarship of researchers within the Oncofertility Consortium and around the world. She works with patients and insurance companies to have fertility preservation procedures covered by health care plans, and with financial programs, such as Sharing Hope, to get discounts for fertility preservation drugs, and negotiates discounts from individual fertility providers for patients. She also works with patients as they make legal decisions about stored tissue, gametes, or embryos. Furthermore, Smith discusses consent issues for minors and the integration of fertility preservation with religious traditions in her work.

As a unique leader in the fertility preservation field, Kristin Smith also disseminates best practices to clinical specialists as they increase patient oncofertility care. She communicates patient educational tools, resources for providers, and her experiences leading a quarterly Oncofertility Forum for local providers to discuss recent fertility preservation cases. For more information on setting up and improving fertility preservation services, contact oncofertility@northwestern.edu.

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According to the American Cancer Society (ACS), a woman in the United States is diagnosed with breast cancer every three minutes. This breaks down to a 12 percent, or 1 in 8, lifetime risk for women of developing breast cancer in the U.S. and right now, there are about two and a half million breast cancer survivors. Chances are, those of you who are reading this blog have been affected by breast cancer either personally or indirectly, through family and/or friends who have been diagnosed.

For those of you with questions about breast cancer treatment options, family history, diagnosis and support services, the Lynn Sage Breast Cancer Town Hall Meeting will take place on Sunday, October 2^nd at Northwestern University’s Chicago campus. It is an interactive discussion with Northwestern healthcare providers, providing you with an opportunity to have your questions answered by experts, learn about local and national support networks and meet with breast cancer advocacy groups.

Among the expert panel of healthcare providers will be our own, Kristin Smith, answering any questions you may have regarding fertility preservation and fertility options prior to and following cancer treatment. Joining Kristin will be a panel consisting of a cancer geneticist, radiation oncologist, survivorship and support expert, and a surgical oncologist. It’s a great venue to get more information and meet others, who may have gone through or are going through, a similar experience with breast cancer.

The town hall meeting is a free event and open to the public. There will be ample time provided for attendees to ask questions and get answers from our expert panel so come prepared with your most pressing concerns. For more information, including registration and directions, please visit www.cancer.northwestern.edu or call 312.695.1304. Walk-ins are always welcome so don’t let a little thing like registration hold you back! The most important thing is that you join us and get the answers and support you need.

As a result of earlier detection and improved treatments, cancer survival statistics have dramatically increased. Some survivors may live with cancer as a chronic disease requiring periodic treatments, while others may go into long-term remission. As many survivors have learned, recovery is often not the end of the cancer experience. Toxic cancer therapies can leave you with late effect health issues that require lifelong surveillance and recovering from the social, emotional and financial trauma of cancer is a process that doesn’t always end with the last treatment.

After years of focusing on treating cancer, researchers, clinicians and advocates are now recognizing the unique challenges that survivors face once treatment has ended. This need has resulted in a number of cancer survivorship programs being developed across the country, dedicated to providing comprehensive and sustained after-care specific to cancer survivors.  Many of these survivorship programs are also designed to meet the needs of pediatric and young adult cancer survivors, who because of their young age at the time of diagnosis, struggle with physiologic and psychosocial effects different from those of older cancer survivors.

One such program, the Survivors Taking Action & Responsibility or STAR program found at the Robert H. Lurie Comprehensive Cancer Center works in conjunction with the STAR program at Children’s Memorial Hospital in Chicago to meet the needs of adult survivors of pediatric cancer.  Patients are referred to the STAR program five years after diagnosis if they remain in clinical remission and are directed to a network of supportive services specific to this demographic. STAR program survivors have a number of concerns depending on their particular treatment regime which often include fertility questions. The STAR program links these survivors up with reproductive specialists, allied health professionals and support groups to help navigate family planning.

The Cancer Survivorship Program at The Children’s Hospital of Philadelphia (CHOP) is another program that recognizes the important issue of fertility as it relates to long-term quality of life. The Cancer Survivorship Program at CHOP is very invested in offering fertility preservation options to the patients and families who are seen in Oncology. Oncofertility Consortium member and Reproductive Endocrinologist, Clarisa Gracia, MD, MSCE, sees many of the individuals in this program to offer potential ways to preserve fertility and to discuss family planning for individuals whose fertility has been compromised as a result of treatment.

For more information about nationwide survivorship programs, please visit the National Coalition for Cancer Survivorship. You can also visit the National Cancer Institute for a list of additional survivorship resources, including publications, studies, and statistics.

Yesterday I had the opportunity to tour the Supportive Oncology Suite with our Fertility Preservation Patient Navigator, Kristin Smith. The Supportive Oncology Suite is part of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University’s Maggie Daley Center for Women’s Cancer Care, located within Prentice Women’s Hospital. Prentice already has a reputation for being a first class facility with great technology and of course, an amazing view of Chicago’s lakefront.  Fortunately, I was able to see what all the fuss was about once I stepped out onto the 5^th floor and made a quick right into the space Kristin calls her “office.”

Once inside and past reception, I entered what is called the Healing Boutique. This relaxing atmosphere has a wall of windows looking out onto Lake Michigan with 2 chairs set up in front of a large mirror. It’s a space where cancer patients who have lost their hair to chemotherapy can come in and get a free wig fitting courtesy of the American Cancer Society. It’s also a space where patients can come in and find more holistic resources for cancer care. They can select from a variety of calming music to borrow while they are receiving their treatment in the infusion suite or several cookbooks to take home geared toward cancer patients, selected by a certified dietician. Patients can also just come here to relax or meet with the supportive oncology staff which includes psychologists, physical therapists, nurses and patient navigators.

Down the hall is a massage and acupuncture room where patients can receive up to 5 free treatments from a certified masseuse and/or acupuncturist. Often patients receive these services in the infusion suite while they are undergoing chemotherapy treatment. Across from that room are 2 offices housing psychologists that meet with cancer patients and survivors to discuss any questions, concerns or issues that they may be struggling with or need additional support with, including fertility concerns.  Finally, as you reach the back of the suite, there is a rehabilitation room where cancer patients can come every Wednesday and receive help with health issues such as lymphedema, a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling. The Supportive Oncology suite serves as a one-stop-shop for cancer patients who can visit with their oncologist and receive rehabilitative services in the same place.

The 5^th floor, Supportive Oncology suite also houses weekly group meetings sponsored by Gilda’s Club Chicago for patients, survivors, family and friends. In addition, the dieticians in the supportive oncology suite will be starting a weight management/weight loss group beginning after Labor Day.  It will be an 8 week structured program focusing on healthy diets, exercise, food preparation and gradual, sustained weight loss open to any patients at Northwestern Memorial Hospital and may be of particular interest to cancer patients and survivors with fertility concerns.  Make sure to stop by and visit this great resource if you are in the Chicago region or visit the American Cancer Society to find resources in your own area.

Planning a family post-cancer can be a complicated process if a patient’s fertility was compromised during their cancer treatment. Depending on a cancer survivor’s prior treatment regime and subsequent fertility options, a number of family planning options may be available to them.  I spoke with Angela Lawson, PhD, a Psychologist at Northwestern Memorial Hospital in the department of Reproductive Endocrinology to learn more about what reproductive options are available to cancer patients who have been left infertile as a result of their cancer or cancer treatment.

One option for women who have banked eggs prior to cancer treatment or whose ovaries are still intact, but do not have a functioning uterus, is to use a gestational carrier. A gestational carrier or surrogate is implanted with an embryo, to which she may or may not have a genetic relationship with, and then carries the fetus to term. Once the baby is born, he/she is then legally placed with the intended parents where they then sign their names on his/her birth certificate.

Individuals can either go through an agency to find a gestational carrier or they can choose someone they know, possibly a friend or family member. Going through an agency can cost upwards of $100,000 with costs to the carrier, the agency, insurance and IVF to stimulate egg production. Going with someone you know is less costly and often makes people more comfortable knowing they have a personal relationship with the carrier that precedes the surrogacy. Personal relationships can lead to more emotional implications – the surrogate should feel comfortable giving the child to the intended parents knowing they will remain in the periphery of his/her life. Check out our blog, Delivering Hope, to learn more about one family’s incredible experience with surrogacy.

An option available to women who do not have the use of their own eggs, but can carry a fetus, is egg donation, whereby the cancer survivor follows a similar selection process as they would if they used a gestational carrier. Often, the medical community prefers the recipient use an anonymous donor rather than use donor eggs from someone they have a personal relationship with. This prevents complications that can arise in the event that the egg donor experiences any complications later in life which may impact her fertility before she has the opportunity to parent a child. If using an agency, egg donation is currently entirely anonymous.

All potential gestational carriers and egg donors go through a rigorous medical and psychological screening to ensure that they are being honest about themselves, to ensure they are stable and that they are not at risk for emotional vulnerability which can pose problems once the child is born. According to Dr. Lawson, about 50-75% of surrogacy and egg donor arrangements make it through the screening and move forward with the process.

If egg donation and surrogacy are off the table, adoption is always a great option too.  Having a history of cancer can make the process a little more challenging as not all agencies will adopt to cancer survivors. Sometimes either the agency or the birth parents are concerned about cancer recurrence and the subsequent repercussions to the adoptive child. Bearing this in mind, the Oncofertility Consortium compiled a list of cancer-friendly adoption agencies for survivors interested in navigating this option.

For more information on your reproductive options post-cancer, please contact our Fertility Preservation Patient Navigator, Kristin Smith, to learn more about resources in your area.

In March, we blogged about a survivorship event scheduled for April 7^th at the Museum of Science and Industry entitled A Night at the Museum: An Evening for Young Adults Touched by Cancer and we’re back to report what an outstanding success it was! The event targeted cancer survivors between the ages of 21-39 specifically to focus on the unique challenges this demographic of survivors face.  Over 250 young adult cancer survivors, caregivers, family, friends and others touched by cancer attended the landmark event and the response from the cancer community has been overwhelming.

According to Jorie Rosen, Manager of Community Relations at the Robert H. Lurie Comprehensive Cancer Center and one of the organizers of this event, “attendees learned about advocacy programs and support services to help them proactively manage their physical and emotional health.” The purpose of the event was to teach young adult cancer survivors how to be their own advocates, and to let them know that they are not alone – there is a network of support that is designed to meet their needs. Survivors were able to have a cocktail, participate in a panel discussion with both providers and fellow survivors, and take a private tour of the You! The Experience Exhibit.

As survivors navigated the exhibit, providers and advocates were stationed along the way fielding any and all questions the attendees had.  Oncofertility Consortium Patient Navigator, Kristin Smith was on hand to discuss fertility preservation options and resources, which proved to be a hot topic among young survivors. Attendees expressed that they wanted to learn more about fertility and cancer, specifically long-term fertility concerns post cancer. Individuals seeking more information about fertility preservation can also visit SaveMyFertility.org, where they can find the resources they need to take control of their reproductive future.

Thanks to the hard work of the cancer care community, A Night at the Museum: An Evening for Young Adults Touched by Cancer was a huge success.  We were able to connect individuals affected by cancer with survivorship resources and more importantly, with each other. On June 23^rd at 6:30pm, young adult survivors will get another opportunity to make connections at the Stupid Cancer Survivorship Bootcamp at Sub 51 in Chicago, IL hosted by I’m Too Young for This, the Oncofertility Consortium and Imerman Angels. Come join us and help the young adult cancer community get educated, organized, mobilized and empowered!

A cancer diagnosis often carries a number of legal issues, including insurance coverage, employment and taking time off work, access to health care and government benefits, etc… These legal issues can have a serious affect on an individual’s already compromised health causing stress and confusion, which can be overwhelming. When these legal issues are not addressed, people may find that although they have gotten through treatment, they are left in financial and emotional crisis.

On June 24^th, the Oncofertility Consortium is partnering with the Cancer Legal Resource Center (CLRC) to kick off the 2011 Cancer Rights Conferences, the first being held in Chicago, IL. CLRC is the host and organizer for this free conference series with additional events being held in Washington DC on September 23^rd and Ann Arbor, Michigan on October 21^st. CLRC is a national program developed in 1997 by both the Disability Rights Legal Center and the Loyola Law School Los Angeles to provide free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

The 2011 Cancer Rights Conference in Chicago will provide patients, survivors, and the health care community with important information pertaining to cancer-related legal issues.  Cancer-related legal issues range from employment and disability concerns to life insurance options and education rights of children and young adults with cancer.  Over 200 people are expected to attend the Chicago Conference and registration is still open so sign up for this free event to learn more about your rights and receive free legal advice.

If you are unable to attend this conference series, CLRC also offers individuals struggling with cancer-related legal issues a national, toll-free telephone assistance line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.