I have fertility on my mind — and it’s definitely not personal. And it’s really fertility preservation that has me thinking. I recently completed the manuscript of my 10th book — a text for oncology care providers about the provision of psychosocial care to young adults with cancer
Writing the book was at times frustrating due to the paucity of research and subsequent evidence on the topic. One area where there is some evidence is in the area of fertility preservation, and there are studies that reflect the experience of young adult survivors who mostly were not told about the impact of cancer treatment on their future fertility (or who did not remember any discussion — and I am not “blaming the victim” here; merely noting that in the chaos of diagnosis, we provide a LOT of information to patients who cannot comprehend most of it). Some studies point to the regret that the survivors experience years later when they want to start a family. Others suggest that encouraging young people to “preserve fertility” — as if we can promise that we will be successful in this — is a way for oncology care providers to show hope to the patient and their family.
ASCO has recently updated its guidelines for fertility preservation with a focus on multidisciplinary teams and information sharing about a domain of medicine that is constantly evolving and, for the “average” oncology care provider, challenging to keep up with. I recently attended a two-day symposium on adolescents and young adults (AYA) with lymphoma that included a plenary session and workshop on fertility preservation. As I sat through the plenary and listened to the impassioned voices of a reproductive health specialist and two oncologists, I grew increasingly uncomfortable. And what made me feel that way was the minimizing of the considerable costs associated with the process.
When asked by a member of the audience, they acknowledged that the upfront costs for sperm banking or oocyte retrieval were significant, and yes, there are annual storage fees. But no one addressed the significant future costs (or success rates) of the procedures required years later when the young adult wants to conceive or father a child. There was no mention of the ethical issues that arise if the patient does not survive their cancer and their stored tissues need to be dealt with by grieving parents or partners. The presentations were passionate and perhaps persuasive, but below the surface, there was much left unsaid.
I counsel patients about fertility preservation at my institution. I am always pleased to accept referrals to do this work because it means that my oncology colleagues are not only following the guidelines but are also thinking about the person rather than only the disease they have been diagnosed with. I include a discussion about the costs involved even though it often leads to a strong reaction from the patient and/or their parents, depending on their age. I show them the list of fees on the website of the only fertility clinic in our city. It’s a long list, and I highlight the specific fees that they would be responsible for. And often the response is one of shock when they do the calculations — and a dawning realization that they cannot find the money — certainly now for banking and storage and in the future when the costs are much, much higher — and yes, it feels like hope is lost.
It’s never easy for me to talk about money with patients. Practicing in Canada, this is the only conversation that I have with patients that includes costs — and this conversation concerns the not-insignificant tens of thousands of dollars that will need to be spent at some point in an uncertain (but always hopeful) future. I have thought about avoiding the discussion about money completely and leaving that up to the fertility clinic staff to do. But that feels cowardly and disingenuous to me. So, I take a deep breath, squash my discomfort, and plunge in. Every jurisdiction has differences in insurance coverage (none where I practice), financial support from charitable organizations (none where I practice), and reimbursement programs (none where I practice, although there is a tax credit, but if you don’t earn enough or have money in the bank or a credit card with a large enough limit, that is meaningless).
But this is not only about the money. It is also about our hope for our patients and dealing with our uncertainty and our deeply held and valid desire to see our young patients survive and thrive. Perhaps if we start to deal with this aspect of fertility preservation, we will ultimately serve our patients better.
Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.