At the Front Lines of Fertility Preservation

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  • Advances in both oncology and reproductive medicine have driven the need for more fertility services for cancer patients.  In oncology:Improving survival rates have led to a greater emphasis on “survivorship,” late effects and quality of life.The development of AYAprograms(for adolescents and young adults) has increased awareness of the needs of young patients with cancer, including preserving fertility for the future.There has been an increased focus on patient participation in treatment decision-making.The LIVESTRONG Foundation and other cancer support organizations empower patients to learn about their diagnosis, ask questions and consider all options, including fertility options. In reproductive medicine:Advances in technologies such as ICSI, egg freezing, and tissue freezing have expanded options for patients.
  • Annually, more than 150,000 Americans are diagnosed with cancer during their reproductive years (under age 45).1These include:More than 26,000 breast cancer patients2Approximately 13,500 children3Most commonly breast, thyroid, melanoma, testicular, cervical, HL and NHL and colon4 diagnoses Among this population, cancer survivorship rates are generally high: 80% of patients under the age of 45 survive at least 5 years.5 See http://seer.cancer.gov/csr/1975_2010/results_single/sect_01_table.01.pdf (stating more than 1.66 M Americans will be diagnosed with cancer in 2013) and http://seer.cancer.gov/csr/1975_2010/results_single/sect_01_table.12_2pgs.pdf (stating that approximately 9% of those 1.66 M will be under the age of 45) National Cancer Institute. Surveillance Epidemiology and End Results. SEER Stat Fact Sheets 2013: Breast. Available at: http://seer.cancer.gov/statfacts/html/breast.html. See also http://www.youngsurvival.org/breast-cancer-in-young-women/learn/statistics-and-disparities/#sthash.f3l3TR8p.dpufhttp://www.childrensoncologygroup.org/index.php/abouthttp://www.nccn.org/professionals/physician_gls/pdf/aya.pdfNational Cancer Institute. Surveillance Epidemiology and End Results. SEER Cancer Statistics Review 1975-2010. Table 2.8 All Cancer Sites (Invasive) 5-Year Relative and Period Survival by Race, Sex, Diagnosis Year and Age. Available at: http://seer.cancer.gov/csr/1975_2010/browse_csr.php?section=2&page=sect_02_table.08.html
  • Fertility Preservation Options Before Cancer Treatment sperm bankingtesticular shieldingtesticular tissue freezingembryo freezingegg freezingovarian tissue freezingovarian shieldingfertility sparing surgeriesovarian transpositionradiation shielding Reproductive Options After Cancer Treatment alternative sperm collection methodsIVF (In Vitro Fertilization)donor eggsdonor embryosdonor sperm
  • Fertility preservation is often possible for people who will undergo treatment for cancer.  However, fertility risks and preservation approaches should be discussed as early as possible--before treatment starts--in order to allow access to the full range of preservation options.1 For patients who are infertile after cancer treatment, parenthood options exist—including using donor eggs, embryos or sperm, surrogacy and adoption. It’s never too late for patients within reproductive age to find out their options.   Loren AW, Mangu PB, Beck LN, et al: Fertility Preservation for Patients With Cancer: American Society of Clinical Oncology Clinical Practice Guideline Update. J ClinOncol 10.1200/JCO.2013.49.2678
  • Delayed childbearing is a trend in the U.S. with the average age of first birth at 25.4.1 In the past, your patients of this age might have already started a family. More and more, patients of reproductive age have not yet had children when diagnosed, but still wish to have biological offspring.2Those who did not receive fertility information express ongoing, unresolved distress and regret, even many years after treatment.3, 4  According to the CDC, in 2010, the average age for first birth was 25.4. http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_01.pdfSchover LR: Patient attitudes toward fertility preservation. Pediatr Blood Cancer. 2009 Aug;53(2):281-4. doi: 10.1002/pbc.22001Schover LR: Motivation for parenthood after cancer: a review. J Natl Cancer InstMonogr. 2005(34):2-5.Canada AL, Schover LR: The Psychosocial Impact of Interrupted Childbearing in Long-term Female Cancer Survivors. Psychooncology 21: 134-143, 2010.
  • Although a significant percentage of patients (women – 40-80%, men – 30-75%) are at risk for reproductive compromise, studies continue to show that:Less than 50% of patients recall discussing fertility risk with a health care provider. 1More than half of physicians who do discuss fertility preservation with patients often do not follow through by making referrals to specialists and support services. 2The majority of health care professionals have no formal procedures for fertility disclosures or referrals. 3Cancer centers are not utilizing ASCO guidelines for implementing these procedures. A survey of breast cancer survivors showed that 11% of patients received “adequate” information about fertility preservation from oncology health care professionals. 4 (These are study findings from 2009 – date.) Quinn GP, Vadaparampil ST, Lee JH, et al: Physician referral for fertility preservation in oncology patients: a national study of practice behaviors. J ClinOncol 27(35):5952-7, 2009 Forman EJ, Anders CK, Behera MA: A nationwide survey of oncologists regarding treatment-related infertility and fertility preservation in female cancer patients. FertSter 94(5):1652-6, 2010Clayman M, Harper M, Quinn GP, et al: The status of oncofertility resources at NCI-designated comprehensive cancer centers. J ClinOncol 29: 2011 (suppl; abstr 9123)Meneses K, McNees P, Azuero A, Jukkala A. Development of the Fertility and Cancer Project: An Internet Approach to Help Young Cancer Survivors. Oncology Nursing Forum. [10.1188/10.ONF.191-197]. 2010;37(2):191-7.
  • “Despite a widespread appreciation of the effects of cancer therapies on future fertility, physicians report that a lack of education, resources and insufficient time hinder fertility preservation discussions with patients.” 1  Goldfarb SB, Dickler MN, McCabe MS, et al: Memorial Sloan-Kettering Cancer Center, New York, NY. JClinOncol 28, 2010 (suppl; abstr e19525).
  • Health care professionals need more information and support on: How to individualize their patients’ fertility risks and options.Current fertility preservation techniques and where to refer their patients.  Health care professionals may be concerned about the treatmenttime limitations. Is there enough time for fertility treatment enough time cancer treatment begins and how long will it take? Will fertility treatment get in the way of your patient receiving the best cancer care? Health care professionals may have concerns about the appropriateness of discussing fertility with particular patients, for example:Those with a poor prognosis.People who live at a low socio-economic status.Those who may not be geographical located near available services. Health care professionals may not feel they have enough information about the safety and efficacy of fertility preservation methods. For example, for patients with breast cancers that are hormone-sensitive, how will they be affected by hormone-stimulating fertility medications to produce eggs for a harvest? Also, fertility preservation measures are not a guarantee for pregnancy. Patients are given hope but no guarantee.
  • The cost of fertility procedurescan pose a financial burden on patientsProcedures are expensive—especially for women.They’re generally not covered by insurance.Fertility TreatmentAverage CostSperm Banking $1000 - 1,500Testicular Tissue Freezing/TESE $6,000 – $16,000 (+ IVF costs)Embryo Freezing $12,400 (+ meds & storage)Egg Freezing $11, 900 (+ meds & storage)Ovarian Tissue Freezing $10,000 (+ storage)Donor sperm $300 – $750 per vial (+IUI or IVF costs)Donor embryos $5,000Donor eggs (including cycle of IVF) $22,000Surrogacy $60,000 - $80,000Adoption $0 - $40,000(domestic, international, public, private)
  • These valid concerns can be addressed by developing procedures and gathering educational resources to equip the clinical staff (such as nurses) to provide timely and accurate fertility information to patients.1  Goldfarb SB, Dickler MN, McCabe MS, et al: Memorial Sloan-Kettering Cancer Center, New York, NY. JClinOncol 28, 2010 (suppl; abstr e19525).
  • The procedures should include tools and resources that enable health care professionals to adequately: Disclose fertility risks based on a person’s cancer and treatmentInforming patients of their fertility preservation optionsAnd providing patients with referrals to specialists and other support services. The medical community has taken action over the years to provide fertility preservation guidelines for this end. The following organizations have created guidelines and reports to inform health care professionals on how to implement fertility preservation procedures:  2004President’s Cancer Panel – “Report on Survivorship” recognized infertility as a top concern and issued recommendationsASRM – Fertility-Preservation Special Interest Group formed2005NIH – Created specialized fertility preservation research section at NICHDASRM – Issued Ethics Committee Report on Fertility Preservation2006 – 2008ASCO – Issued Fertility Preservation Guideline (2006)NIH – Funded the Oncofertility Consortium (2006)AAP – Guidelines for F.P. in peds (2008)2008 – presentNCCN – Issued AYA Guideline; include fertility preservation recommendations (2012)ASCO – Updated Fertility Preservation Guideline (2013)AMA – Issued policy calling for insurance coverage for fertility preservation for cancer patients
  • Handout:Oncology Algorithm for Addressing Fertilityhttp://images.livestrong.org/pdfs/livestrong-fertility/LF_OncologyAddressingFertility_Algorithm.pdfLIVESTRONG offers procedures developed by oncofertility experts suggesting where fertility discussions can occur during the processing of cancer patients.  See the article “[insert final title oncologists article]” as a guide for using this resource, along with the following fertility tools.
  • Providing patients with their fertility risks: Part of duty of informed consent [waiting to hear from Emily about what this means]Giving timely notice to all eligible patients.Offering meaningful written and verbal information about the patient’s reproductive risks. Tools for Disclosing Fertility Risks:LIVESTRONG’s Fertility Risk Tool allows you to search by cancer type and treatment plan to provide an overview of the risk level for infertility.For more details about common cancer treatments that may impact reproductive function, see these at-a-glance charts: Fertility Risk Charts (men/women)For more details about common cancer treatments that may impact reproductive function, see these at-a-glance charts: Fertility Risk Charts (men/women) [Insert links]
  • Health care professionals will need to be prepared to answer common patient questions, including:What are my options for preserving fertility?Will any of the fertility-preservation options affect how well the cancer treatment works?Will using one of these options mean that I need to delay cancer treatment? If so, for how long and what are the risks?How will each option affect my health and the health of my future children?Will fertility treatments or becoming pregnant increase the risk that the cancer may return? Tools for Informing Patients of Their Options:LIVESTRONG’s Family-Building Options Tool provides customized information on fertility preservation and family-building options based on a person’s treatment stage and plan.These printable charts show the same fertility options at a glance: Family-Building Options Charts (men/women). [Insert links]
  • Here are some common questions your patients may have after discussing their fertility options: What clinical trials are open to me?Where can I find support for coping with fertility issues?Where can I find more information about fertility preservation? You can use LIVESTRONG’s online Fertility Resource Guide [insert link] to help you refer your patients to a fertility specialist and support organizations. The Fertility Resource Guide is a searchable database of doctors and services, including reproductive endocrinologists and sperm banks, financial assistance programs, adoption agencies and legal resources. Use this tool to help your patients continue planning their family-building options for the future.  Patients can visit www.livestrong.org/we-can-help to begin educating themselves.LIVESTRONG provides in-depth fertility and family-building support articles, such as Cancer and Fertility Risks for Men and Cancer and Fertility Risks for Women. LIVESTRONG Fertility Services : Provides free, one-on-one fertility guidance to those whose cancer treatments present the risk of infertility. Connects eligible patients with fertility centers. Offers eligible patients with help in applying for financial assistance programs for their family-building option of choice. Provides a wide range of educational resources for patients.
  • Oncologists and fertility centers can use the LIVESTRONG Fertility Resource Guide [link/url] to find each other and develop relationships that will facilitate timely and individualized fertility services for cancer patients.  As partners in this effort, oncologists and fertility centers can communicate with each other and collaborate on:Notifying each other of patients’ needs. Ensure timely consultations and delivery of services.Implementing an easy referral process between oncology and fertility offices, preferably automated.
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