Repropedia now available in Portuguese!

The Oncofertility Consortium is happy to announce the translation of Repropedia into Portuguese.  Repropedia is a reproductive dictionary created by an international team of scientists and clinicians led by investigators at Northwestern University.  This site provides information on common reproductive science terms that can be very useful to patients and providers.

Dr. Teresa Almeida Santos of the Portuguese Oncofertility Society translated Repropedia into Portuguese and it was recently posted to the Oncofertility Consortium website for easy access.  The newest translation can be found here:

Examining Information Processing

The Oncofertility Consortium is pleased to welcome Dr. Jennifer Hirshfeld-Cytron as a guest blogger today.

Screen Shot 2014-04-23 at 2.14.57 PMThis is a blog post based on the article, Toward theoretical understanding of the fertility preservation decision-making process: examining information processing among young women with cancer by authors P.E. Hershberger, L. Finnegan, S. Altfeld, S. Lake, and J. Hirshfeld-Cytron, in Research and Theory for Nursing Practice.

By: Jennifer Hirshfeld-Cytron, MD/MSCI

Despite a clear desire among cancer patients to receive oncofertility counseling, studies have shown about a third of patients do not follow up with care following the consultation.  Increased attention is being drawn to the process of decision making and the best ways to deliver information.  In addition, what is the process of which information can be successfully processed and a decision made during such a stressful time?

As health care providers, we constantly strive to make sure we are accurately discussing medical data with our patients.  Furthermore, our goal is to help patients come to a decision that they are comfortable with based on sound scientific evidence and their unique perspectives.  This process is even more important when approaching a subject such as oncofertility which is elective and involves planning for the cancer remission phase, newly after an initial cancer diagnosis is made.

Using a qualitative approach and decision theory we conducted in depth interviews of 27 women with a recent cancer diagnosis that were eligible for fertility preservation.  We discovered that 85% reported receiving counseling, but a majority reported that they felt it was inadequate.  Woman often go to the internet for supplemental material; in particular they are interested in learning other woman’s experiences.  Health care providers could provide accurate websites such as to assure patients are receiving medically sound information. This site also provides patient’s stories.  Our analysis further suggests using broad probing questions during the consultation should be used judiciously as women are often unsure of what questions to ask clinicians regarding how their particular needs impact their fertility preservation options. Having an organized informational approach and a collaborative and cohesive medical team were all essential strategies that can facilitate decision making.  In particular, navigating the medical system can be overwhelming and informing patients about how to navigate the system and using patient navigators can enhance the patient experience.

A true collaborative team across specialties and between MDs, nurses, social workers, and other clinicians such as patient navigators is also essential; particularly as members of the support team engage in what are research identified as “decisional debriefing sessions.” These debriefing sessions are focused aspects of counseling sessions where active information processing takes place.  Assuring that women receive an oncofertility consultation is only the beginning, in this next phase of fertility preservation we need to assure patients are undergoing productive consultations in the context of a larger collaborative medical team.

Fertility-Friendly States

Screen Shot 2014-04-22 at 9.11.02 AMYesterday, the Huffington Post published an article outlining states that are ‘Fertility-Friendly’.  The article, ‘State-By-State ‘Fertility Friendliness’ Ranking Show Wide Range’ was written by Resolve: The National Infertility Association in partnership with EMD Serono Inc., a biotech drug company that makes fertility treatments.  While many states  claim to have mandated insurance coverage for infertility, oftentimes the mandate only covers diagnosis and excludes in vitro fertilization (IVF) and other treatments.  With the cost of treatments such as IVF averaging over $12,000 for one cycle, mandates that exclude coverage to this level leave such treatments out of reach for many women.  Review this article and research the insurance mandates for your state.  The Oncofertility Consortium supports initiatives to increase access to fertility treatment for patients.

Insurance Coverage for Fertility Preservation

978-1-4614-8234-5 (1)Chapter 14 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses an extremely important issue in healthcare, insurance coverage.  The authors, Dr. Laxmi Kondapalli and Alice Crisci, wrote Incorporating Insurance Education into the Fertility Preservation Process to outline strategies that may facilitate access to fertility preservation services for patients.

An important component to ensure insurance coverage is the referral to an oncofertility specialist.  This allows patients the opportunity to fully understand the endocrine impact from their specific cancer treatment and all the potential associated side effects including menstrual irregularities, sub-fertility and infertility, sexual dysfunction, metabolic disturbances, cardiovascular and bone health.  Providers should determine what type of pre-authorization is required for the specific insurance companies.  This information can typically be found on their web site.  From there, providers must use the appropriate diagnosis codes for the visits.   For oncofertility patients, it is essential to use the cancer diagnosis as the primary diagnosis code for the consultation.  Beyond that, special V codes for fertility preservation have been developed and are billable medical codes that can be used on reimbursement claims.  Often, these billing measures are coupled with a Letter of Medical Necessity.

Letters of Medical Necessity are used by insurance companies to review benefits coverage and usually include patient name and date of birth, insurance carrier name and patient identification number, clinical diagnosis and ICD code, cancer treatment plan, side effects of treatment plan associated with reproductive health, proposed ICD-10 codes and associated V-codes that you are requesting coverage, case for coverage, physician signature, and contact details.  Chapter 14 outlines, in detail, a list of factors that can be included in the Letter of Medical Necessity.  Read through the chapter for the full list, but an example is guidelines from professional organizations such as the American Society of Clinical Oncology or American Society of Reproductive Medicine.

As we’re all aware of, the journey to insurance coverage can often include denial and the start of an appeal process.  The Affordable Care Act ensures a patient’s right to appeal health insurance decisions, including asking insurers to reconsider its decision to deny payment for a service or treatment.  Patients typically have to navigate the appeal process independently with the support of the Letter of Medical Necessity from their provider.  Patients can also submit a letter of appeal for fertility preservation on their own behalf and the Oncofertility Consortium has appeal letter templates available on our website.

Unfortunately, many states across the country  do not require insurance coverage for infertility treatment for people who may become infertile as a result of cancer or medical treatments.  While legislature has been introduced in a number of states to expand existing fertility coverage to cover infertility caused by cancer treatment, our work is just beginning.  Advocacy groups, such as the Livestrong Foundation and the Cancer Legal Resource Center, are actively collaborating with key legislators to address this issue and the Oncofertility Consortium is proud to support their efforts.

AYA Twitter Chat TODAY 12:30pm CST (#YACancer)

Screen Shot 2014-03-28 at 9.32.40 AMRecently, Mashable featured Jenna Benn in a wonderful article: Wedding, Career, Chemo: When Cancer Derails the Millennial Dream.  Jenna Benn is a patient of the Robert H. Lurie Comprehensive Cancer Center at and a wonderful friend and supporter of the Oncofertility Consortium.

Due to the interest and response to her article, Mashable has organized an Adolescent Young Adult Twitter chat today, March 28th from 12:30-1:30pm central time.  Please use hashtag is #YACancer when responding to any questions generated during the chat or re-tweeting to your followers.

Please join us TODAY at 12:30-1:30pm CST for the Mashable AYA Twitter chat about cancer and the millennial generation!  



The Rest is History

image004Today, we are honored to have another patient guest blogger; long-term survivor Colleen Cira.  Read through her incredible story below and join the Robert H. Lurie Comprehensive Cancer Center this evening, March 25, from 5-8pm for “Drinks with Docs (& Healthcare Providers)” at Bridge House Tavern in Chicago, IL.  Witness the miraculous transformation of healthcare providers to mixologists!  Enjoy an evening of spirits and conversation while supporting the Adolescent and Young Adult Oncology (AYAO) Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University through the evening’s tips – so tip generously!


The Rest is History

By: Colleen Cira

When I was 15 years old and first diagnosed with Hodgkin’s Lymphoma, I was no where near thinking about being a parent.  Despite that, I vividly remember being told by my oncologist that having chemotherapy and radiation may make it difficult to have children and I wouldn’t know if that was true or not until I started trying.  While I don’t remember having a significant emotional reaction to that information at the time, I know that when I approached my decision to have children with my husband just 3 years ago, I carried with me a tremendous amount of skepticism about my ability bear children because I am a cancer survivor.  Fast forward 18 years later and I have the most adorable, curious and sweetest little 19 month old I could ever dream of.  But he didn’t come easy.  
Just a few months into “trying” with no results, I knew in my bones that something was wrong and that the standard “wait a year” advice was not going to fly for me because of my history.  Thank God for the STAR program at Northwestern because they immediately put me in touch with Kristin Smith at Northwestern’s fertility clinic.  Within a matter of weeks, I learned that chemo and/or radiation had killed off practically all of my eggs, I was almost 100% infertile as a result and, as a result, the typical first line fertility treatments were not going to work for me.  My treatment team told me that we immediately needed to start preparing for intra-uterine insemination (IUI) because if IUI was not successful, they wanted to start IVF immediately – they didn’t know how big the window was between 97% to 100% infertile.
In a matter of a month, I began taking medication, giving myself two shots every day and going to the infertility clinic constantly.  I always joked with my friends and family that I would be better off renting a cot there ;)  To complicate the picture, the insurance that my husband and I had did not cover the treatments or procedures.  It was an exhausting time for my husband and myself, physically, emotionally and financially.  I was terrified about the possibility of the treatments not working…about not ever having the opportunity to be someone’s biological Mom.  What I feel so incredibly lucky to say is that there is a happy ending.  After one IUI attempt, I became pregnant with Lincoln and, as they say, the rest is history.
A small part of me feels silly even writing this because now I know so many people who have struggled to have children.  People who try for years, who cannot identify the cause for their infertility, who try procedure after procedure with no results.  It is with this perspective that I feel so incredibly blessed to have the luck we did with IUI and the beautiful baby boy it allowed us to create.


A sincere thank you to Colleen for sharing her journey and we hope to see you all this evening at the “Drinks with Docs (& Healthcare Providers)” at Bridge House Tavern from 5-8pm.

Night of Humor & Healing

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On April 9, 2014, the Robert H. Lurie Comprehensive Cancer Center will host a “Night of Humor & Healing” for young adult cancer survivors ages 16-40 years old at the famed Second City Theater.  The evening will include dinner, drinks, networking, and a one-hour hilarious improv show followed by a presentation from four-time cancer survivor Glenn Rockowitz.  Glenn is a former improviser and Saturday Night Live writer who went on to publish a book about his experience battling cancer as a young adult.   Now he is the Executive Director for Change It Back, an organization that sets national standards for adolescent and young adult oncology (AYAO) care. 

The Lurie Cancer Center understands that young adult cancer survivors face unique issues and may need different care and information than other age groups.  Our “Night of Humor & Healing” is one of many programs and services offered to young adults.  Learn more about the event and get your tickets today at

The Oncofertility Consortium is proud to support the Night of Humor & Healing and urge all of you to look through the information provided through the Robert H. Lurie Comprehensive Cancer Center website and attend the event if possible.  It’s sure to be an invigorating and entertaining evening!

Evidence-Based Medicine in Oncofertility

Educating Providers on Evidence-Based Medical Guidelines is a chapter of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines where the authors, Lauren N.C. Johnson and Dr. Clarisa R. Gracia, outline previous medical paradigms and how they have changed to incorporate new evidence-based medical guidelines in fertility preservation and oncofertility.

Screen Shot 2014-03-19 at 10.32.01 AMThe old paradigm of medical practice relied heavily on individual clinical experiences and the knowledge of pathophysiology.  Based on this, physicians would refer to text books and senior colleagues when faced with a difficult patient situation.  As such, many patient care decisions were influenced by provider bias rather than objective data.  In the late twentieth century, there was a paradigm-shift to focus on evidence-based medicine which highlighted the critical importance of objective data in medical decisions.  Evidence-based medicine (EBM), as a whole, is a tool for solving clinical questions.  The original definition of EBM was “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients” and was later amended to include the critical role of the patient in health care decisions.  Now, EBM is “the integration of the best available research evidence with clinical expertise and patient values” which allows for the best clinical decisions relating to patient care.

In an effort to generate appropriate information, clinicians focus on the “PICO” model: P stands for Patient, Problem, or Population;  I stands for Intervention; C stands for Comparison; O stands for Outcome.  These four areas allow for clinicians to focus their questions in a logical way that allows for quicker literature searches and data gathering.  Beyond the PICO model, grading systems were put in place to help medical professionals evaluate the quality of the evidence in a particular study or set of guidelines through grades of “good, fair, or poor”.  Even further beyond these systems, many clinicians refer to the Strength-of-Recommendation Taxonomy (SORT) system which focuses mainly on patient-centered outcomes, quality of life, and symptom improvement.  Recently, researchers have expressed increased interest in the impact of cancer therapies on fertility as more cancer patients become long-term survivors.  As Oncofertility has garnered more attention and interest, the quality of data relating to fertility preservation has drastically improved from simple case studies to randomized controlled trials.  Based on the quality of the data available, the American Society of Reproductive Medicine (ASRM) reclassified oocyte cryopreservation to be an established technique. This is a prime example of how EBM can transform clinical care.

The Oncofertility Consortium relies heavily on EBM and is dedicated to providing clinicians with access to educational resources through various avenues.  The Consortium hosts an annual conference with didactic sessions as well as hands-on, small-group training courses, frequent ‘Virtual Grand Rounds‘ and online access to currently published research studies.  Practice guidelines for fertility preservation in cancer patients have been published by several professional societies including the American Society for Clinical Oncology (ASCO), ASRM, and the British Fertility Society.  Some organizations, such as ASCO, ASRM, and The Endocrine Society, even offer Continuing Medical Education credits (CME) for online training modules.

As Oncofertility continues to rapidly evolve, knowledge of Evidence Based Medicine, and access to high-quality, patient-oriented literature, will allow physicians to consistently offer excellent care to patients seeking fertility preservation.  The Oncofertility Consortium will continue to share resources with our large network and promote the role of EBM in fertility preservation through our Annual Conference, Virtual Grand Rounds, among many other channels.

Preserving Oocyte Reserve

Today we welcome Dr. So-Youn Kim from Dr. Woodruff’s Lab at Northwestern University as our guest blogger.  Dr. Kim will review a recent article published by Dr. John C. Schimenti in Science 2014.


By: So-Youn Kim, PhD

According to a paper published by Dr. John C. Schimenti and colleagues in Science in 2014, Reversal of Female Infertility by Chk2 Ablation Reveals the Oocyte DNA Damage Checkpoint Pathway, mice that have knock out checkpoint kinase 2 (chek2-/- or chk2-/-) are protected against radiation damage to oocytes (1). These Chk2-deficient female mice do not have fertility problems.  Radiation did not eliminate primordial follicles in Chk2-deficient female ovaries, compared with that of wild-type animals, and Chk2-deficient mice gave birth to an average litter size. This gives researchers further hope that oocytes can be protected during chemo- or radiation therapy in cancer patients.


Depletion of p63-positive primordial follicles by IR is CHK2-dependent. Ovaries were cultured 7 days after irradiation. Scale bars, 100 μm. MVH marks oocytes. (Insets) Ovary cortical regions containing primordial follicles (Schimenti J.C. et al, Science, 2014)

Checkpoint kinase 2 (CHK2) is a protein component of the meiotic DNA damage checkpoint that plays a role in DNA repair. It is a downstream molecule of ataxia telangiectasia mutated (ATM), which is activated to DNA double strand breaks (DSBs), or ataxia telangiectasia and Rad3 related (ATR; FRP1), which is responsive mainly to single-stranded DNA breaks (2,3). CHK2 may transfer the signal to downstream molecules, p63/p53 (/p73), to decide the destiny of cells. Schimenti’s team showed that irradiated Chk2-/- mice did not phosphorylate TAp63, a protein that has known as a guardian in oocyte to protect female germline (4). The team showed that CHK2 signals to both p53 and TAp63 when oocytes get DSBs by showing that irradiated p53-/- TAp63-/- has similar protection of Chk2-/- female. Therefore, if the repair systems by CHK2 fail to fix DNA damage, it will induce the signaling pathway of p53/TAp63, causing the depletion of ovarian follicle reserve.

Women who are treated with chemo- or radiation therapy are faced with the depletion of ovarian reserve, causing premature ovarian failure and destruction of the endocrine system. Chemo- or radiation therapy is especially detrimental to women who have not yet given birth, but hope to have children later in their life.

Many groups have done research to protect oocytes against chemo- and radiation therapy by figuring out the key target molecules and effective inhibitors. There are several candidate inhibitors so far such as GnRH analogues (5), S1P (6), AS101 (7), and Imatinib (8). But there is still controversy as to how to protect oocytes against chemo- and radiation therapy. None of these have yet been tested in mice to kill cancer cells while protecting the ovarian reserve. If CHK2 is a key molecule in the signaling pathway of oocyte death as Schimenti’s team proposed, the use of CHK2 inhibitor could be an ideal way to protect oocytes against apoptotic pathway by radiation and give time to repair DNA damage in oocytes while killing cancer cells.

We cannot determine the healthiness of oocytes undergoing these treatments although the inhibitors could prevent the death of oocytes during chemo- and radiation therapy in cancer patients. Although the radiated oocytes from Chk2-/- mice produced healthy pups, the team would need to pursue much deeper research to study the genomes of the pups to determine if they contain DNA mutations when CHK2 inhibitors are used. While more research needs to be done, this is another step towards fertility preservation in cancer patients.


  1. Bolcun-Filas E, Rinaldi VD, White ME, Schimenti JC. Reversal of female infertility by Chk2 ablation reveals the oocyte DNA damage checkpoint pathway. Science. 2014;343(6170):533-536.
  2. Wang XQ, Redpath JL, Fan ST, Stanbridge EJ. ATR dependent activation of Chk2. Journal of cellular physiology. 2006;208(3):613-619.
  3. Hirao A, Cheung A, Duncan G, Girard PM, Elia AJ, Wakeham A, Okada H, Sarkissian T, Wong JA, Sakai T, De Stanchina E, Bristow RG, Suda T, Lowe SW, Jeggo PA, Elledge SJ, Mak TW. Chk2 is a tumor suppressor that regulates apoptosis in both an ataxia telangiectasia mutated (ATM)-dependent and an ATM-independent manner. Molecular and cellular biology. 2002;22(18):6521-6532.
  4. Suh EK, Yang A, Kettenbach A, Bamberger C, Michaelis AH, Zhu Z, Elvin JA, Bronson RT, Crum CP, McKeon F. p63 protects the female germ line during meiotic arrest. Nature. 2006;444(7119):624-628.
  5. Osborne SE, Detti L. GnRH-analogues for ovarian protection in childhood cancer patients: how adult hypotheses are relevant in prepubertal females. Current drug targets. 2013;14(8):856-863.
  6. Zelinski MB, Murphy MK, Lawson MS, Jurisicova A, Pau KY, Toscano NP, Jacob DS, Fanton JK, Casper RF, Dertinger SD, Tilly JL. In vivo delivery of FTY720 prevents radiation-induced ovarian failure and infertility in adult female nonhuman primates. Fertility and sterility. 2011;95(4):1440-1445 e1441-1447.
  7. Kalich-Philosoph L, Roness H, Carmely A, Fishel-Bartal M, Ligumsky H, Paglin S, Wolf I, Kanety H, Sredni B, Meirow D. Cyclophosphamide triggers follicle activation and “burnout”; AS101 prevents follicle loss and preserves fertility. Science translational medicine. 2013;5(185):185ra162.
  8. Gonfloni S, Di Tella L, Caldarola S, Cannata SM, Klinger FG, Di Bartolomeo C, Mattei M, Candi E, De Felici M, Melino G, Cesareni G. Inhibition of the c-Abl-TAp63 pathway protects mouse oocytes from chemotherapy-induced death. Nature medicine. 2009;15(10):1179-1185.


Communication: From Professionals to the Public

Screen Shot 2014-02-18 at 10.23.36 AMWe live in a digital age where more information is available at our fingertips than ever before.  We now have access to information in a matter of seconds that used to take weeks to locate through time intensive literature reviews at the library.  Chapter 12 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines is devoted to the unique set of challenges presented through these new and varying methods of communication.  In this chapter, Oncofertility Communication Tools for Professionals and the Public, authors Stefani Foster LaBrecque, Harlan Wallach, and Kate E. Waimey identify the many communication platforms utilized in Oncofertility.  Because Oncofertility, by nature, requires reaching multiple disciplines and stakeholders, communication strategies must be geared towards everyone from high level scientists to patients and their families.

Communication tools range from primary and review articles in scientific journals to social media; each end of the spectrum presenting a differing set of hurdles.  For example, academic publications have credibility with funding sources and in scholarly settings but often reach a small group of already engaged stakeholders.  On the other hand, social media reaches a very large audience but credibility is often in question as the information distributed is not subjected to a rigorous review process.  Thankfully, a number of communication tools have been developed to bridge the gap.

Professional websites can be a wonderful resource for clinicians and patients searching for information.  The Oncofertility Consortium website has different sections specifically geared towards researchers, clinicians, and patients and are modified routinely to keep up with technology and the needs of our audience.  Websites can be used to host archived information from previous presentations, publications, and procedures as well as broadcast new information.  A unique aspect of the Oncofertility Consortium website is our interactive National Physicians Cooperative map which identifies collaborative practices with ‘pins’ on the map.  Providers can view the map and see what hospital systems they can refer patients to and patients can access this same information to find the best fit for them.  In conjunction with the Oncofertility Consortium website, patients and providers are encouraged to use the Fertility Preservation Patient Navigator website which is instrumental in connecting patients with fertility preservation providers.

Moving past websites, Chapter 12 discusses the new rolScreen Shot 2014-02-18 at 10.32.48 AMe of virtual meetings in the communication toolbox.  Current mechanisms for virtual meetings are Vidyo videoconferencing which allows for face-to-face audio, visual, and data-sharing and Adobe Connect, where a single presenter broadcasts video and data slides and viewers ask text-based questions that can be answered in real time.  These newer technologies have really helped to bridge the gap between clinicians and the public as well as broadcast clinical scenarios for input from colleagues across the globe.  While these technologies will never replace the benefit of in-person communication, it is a way to foster those relationships when distance and schedules conflict.

The next generation of technology involves the utilization of smartphones.  People are constantly connected to their smartphones and we are identifying ways to reach patients through this ever-present device.  The Oncofertility Consortium led the charge with their iSaveFertility app for the iPhone which provides clinicians the ability to view educational pocket guides about fertility preservation in men, women, and children and email applicable information directly to patients from the app.  A web-version was launched in conjunction in the app to make consistent information available to non-iPhone users and those wanting to view information on their desktop.  The next step is upgrading the app for use on newer iPhone platforms and having a counterpart available for android users.  Again, technology keeps evolving and we need to keep up!

The best way for technology to educate patients and their families is through Public-Facing Web sites.  These sites house short videos of patients, scientists, and health care providers, and include animations which are especially useful for children or individuals with poor literacy.  One example of a public-facing website is MyOncofertility.  MyOncofertility is a patient education website available through the Oncofertility Consortium which provides concise information to patients and their families regarding treatment options and available resources.  The Oncofertility Consortium receives feedback from patients and can edit material based on what is desired by the public.  From these comments, the Consortium is able to locate new avenues to reach the public.  The most applicable one being social media.  To complement the information provided on public-facing websites, the Oncofertility Consortium maintains a social media presence through Facebook, Twitter, YouTube, and the Oncofertility Consortium blog.  With these tools, it is easy to keep a large community informed of upcoming events, existing tools available through the Consortium, and support our wide range of collaborators.

Moving forward the Oncofertility Consortium is dedicated to strengthening the survivor-patient-provider connection through both updated technology mechanisms and in person communication.  This will be done through our established web presence (websites and social media) as well as discussions with our national and global partners to receive input on current experiments and procedures.  Continue reading Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and tour our Oncofertility Consortium resources for more information.


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