From the Huffington Post
By Emily Drake, Health promotion specialist, Advocate, Director of CancerFightClub
Here are five things you may not know about Oncofertility:
- The word “Oncofertility” was coined by Dr. Teresa K. Woodruff of Northwestern University to define an area of academic research and practice that concerns both oncology and reproductive medicine. Oncofertility researchers and practitioners study fertility preservation options and are innovating new ways to help people who face impaired or reduced fertility rates due to cancer.
- Cancer and its treatment can affect a person’s ability to have children.
- We still do not completely know or understand the barriers and why a hundred percent of eligible patients are not offered fertility preservation options prior to starting cancer treatment by their healthcare team.
- It is the oncology staff’s job to present fertility preservation options to the patient. However, it is not oncology staff who actually do the process to preserve the patient’s fertility. It has to be done by reproductive endocrinologists/reproductive experts.
- An Oncofertility consortium is being developed that will change the landscape of this field.
Cancer and its treatment (surgery, chemotherapy and radiation) have the ability to affect a person’s experience of sexuality from mild to debilitating in psychosocial (psychological + sociological) and physiological ways. One of these ways is through reducing or impairing the person’s ability to have children. Despite this, fertility preservation options are not routinely presented to patients prior to the start of cancer treatment. In fact, sometimes a patient is never told about this possibility until they try to start having children and run into issues. However, not all surgeries, chemotherapies and radiation treatment options affect fertility and in some cases people assume that they are infertile, only to be surprised by an unplanned pregnancy after unprotected sex.
There are many reasons as to why people who are diagnosed with cancer are not presented fertility preservation options by their medical team. Some of the reasons that medical teams give for not having these discussions include, but are not limited to: the fact that they feel the person may not be able to afford it; that they do not believe there is time to do it before treatment must start; or that they feel the person will not be able to handle that conversation on top of the many other things they are emotionally processing. For 16 year old Lauren Aslanian, a pediatric Anaplastic Large Cell Lymphoma survivor, this was not the case. She was offered fertility preservation options by her team because she was told that the high doses of chemotherapy she would be receiving when she was 15 years old were known to cause infertility. She told me that despite her young age, this was important to her and she believes that fertility preservation options should be offered to other adolescent and young adult (AYA) patients because it provides hope and will allow people to have children as any other non-cancer survivor and fertile person is able to.
This past year, I had the pleasure of attending two closed, invite-only think tanks planned by Dr. Sender, Director of Pediatric, Adolescent and Young Adult Cancer Programs at CHOC Children’s Hyundai Cancer Institute and UC Irvine Health’s Chao Family Comprehensive Cancer Center at both the Society of Adolescent and Young Adult Oncology’s (SAYAO) annual conference and Stupid Cancer’s first CancerCon. Dr. Sender believes “it is a fundamental right of any individual to be offered fertility preservation. If we, as a society, believe in cancer survivorship then what we need is for people to have a choice as to if they want to have children or not. It is not for us [physicians] to have made a decision at the time that they start their therapy that prevents them from being able to.” This is saying that the ability for people to have a choice needs to be advocated for.
The think tanks were set up to create a working group of 25 experts in the field of Oncofertility who will come together a few times a year to dissect the barriers practitioners site in not being able to properly address the fertility needs of their patients and brain storm tools that people can use so that this can start happening universally. Laxmi Kondapalli, MD, an Assistant Professor, Reproductive Endocrinology and Infertility at the University of Colorado, noted that these workshops are important for specialists in this field to explore new areas of collaboration and research.
Fertility is an incredibly important survivorship issue and newly diagnosed cancer patients want to know that there are options for them to have a family of their own in the future. As Dr. Teresa Woodruff said of the workshops, “having fertility as part of cancer care and cancer survivorship means that these individuals are going to have the option for parenting down the road and this wasn’t a part of the equation five and ten years ago. So, making sure that we embed fertility as part of this ordinary pattern of care, that is why we have this think tank. My hope is that we can come together across paediatrics, reproductive endocrinology and research to come up with a new set of tactics to move this field ahead. There is a lot of momentum, but now we need to convert that into an action plan. So, that’s what I hope the think tank does.”
The goals of the workshops are to come up with measurable outcomes and build a consortium around the topic. The consortium will start addressing the needs of AYA patients in the pediatric field because it is a much more manageable size to begin with. There are fewer pediatric than adult hospitals to explore and analyze the presentation of fertility preservation options. The pilot for the first phase of the project will be in Orange County at CHOC Children’s. After this the rest of the children’s hospitals in California will be tackled and then all Health Maintenance Organizations (HMOs). The goal is to have a hundred percent of patients who are diagnosed with cancer, have an Oncofertility discussion and at the same time understand the barriers that exist to implementing it. With inspiration from the work of Dr. Antoinette Anazodo from Sydney Children’s Hospital and the Australasian Oncofertility Registry that she created for AYA patients in Australasia, it is the goal of Dr. Sender, along with Alice Crisci of Fertile Action and the whole Oncofertility consortium to learn the challenges that the United States face in terms of Oncofertility measures and to innovate solutions so that more people can have the option to have children post cancer.