Families of all stages of life, at every stage of cancer and infertility, have walked through my clinic doors all facing a changed future, all having to make difficult decisions much sooner than they had ever planned.
Cancer can impact fertility either permanently or temporarily. Whether it’s the cancer type or location, damage to reproductive organs from the disease or its treatment, or an increased risk of developing cancer through a genetic mutation, reproductive options often become an urgent conversation, or at least they should.
Cancer and infertility issues are complex and the research tells us that they can impact significantly on the quality of life, even into survivorship, which is also linked to poorer mental health outcomes.
I’ve worked with many healthy high-risk women and genetic mutation carriers, some of whom are very young, some closer to reproductive age. Many are single, others are in relationships of varying durations, and some are married. Often, they already have children, some have completed their families, while others are childless despite having a strong desire for a biological family.
It’s such a privilege working with cancer patients from the time of diagnosis, throughout the duration of their treatment, into survivorship and at other times, up until the end of their lives.
Often, I have supported individuals and their families through difficult conversations around fertility preservation. This has sometimes meant sitting with sixteen-year-olds who are having to think about a future more than a decade away, at a time when they aren’t sure they’ll see tomorrow.
Other times, women are grieving the children they fear they’ll never have due to the decision to commence cancer treatment sooner rather than later, as saving their own life becomes a priority over preserving their fertility.
So many women have cried endless tears in our sessions as they describe their paralysing fears of allowing their partners to see them naked after surgery with their scars and absent or changed breasts, or after their chemotherapy weight-gain, or with their radiation burns. Often also bald, they worry that their partners will never find them attractive again, or that perhaps, they were no longer a woman.
Premature menopause through cancer treatment or risk-reducing surgeries such as salpingo-oophorectomy (hysterectomy) impact significantly on sexual health and functioning and in my personal experience, none of my healthcare professionals really spoke to me or prepared me for that.
These fears and the physical outcomes of such procedures have a direct impact on the quality of relationships and even social functioning, one of our key coping mechanisms as humans. Without satisfying personal connections, our quality of life immediately reduces.
A patient’s very identity and sense of self, even their life narrative is changed by cancer and infertility. The emotional reactions and psychological distress that follows can present as an acute stress or grief response which makes perfect sense when you consider the multiple major losses that are experienced in these cases.
Loss of how their body once looked, loss of bodily functions, loss of relationships with self and others, loss of the capacity to have biological children, loss of the completed family which was so desired, loss of the future once planned. The losses are countless.
Additionally, these stressors are often persistent, they don’t just go away overnight.
Fortunately, the healthcare profession is getting better at having vital conversations and international guidelines now recommend that healthcare professionals discuss not only the medical implications of cancer treatments or of carrying a genetic mutation but also risk-reducing options.
These include the sharing of information regarding fertility preservation and the use of pre-implantation genetic diagnosis (PGD) to prevent transmission to offspring. It is also recommended that patients should meet with reproductive specialists early and include specialist therapeutic psychological support as well.
There are so many factors to be considered when faced with cancer and infertility including gender; age; relationship status; religious or cultural beliefs around fertility treatments; finances; illness factors – prognosis; time to commence treatment; illness type or site; treatment and service factors; and, receiving a timely referral.
Because genetic mutations are also linked to lower ovarian reserves and earlier menopause, these women may have a more limited reproductive window.
It’s no wonder then that many report a sense of urgency to have children earlier than planned. Some are hesitant to reproduce at all due to the potential increased cancer risk to themselves or of passing on of a genetic mutation to their children. At times, women may be less likely to want children than non-carriers, highlighting the significant impact being a mutation carrier can have.
In addition, high-risk women find themselves in the complex position of considering pre-implantation genetic diagnosis and prenatal diagnosis which brings with it a whole other set of cognitive and emotional challenges, as families consider what becomes of the unused or mutated embryos.
The grief and loss continues.
Healthy, single women who are also genetic carriers report difficulties forming new relationships due to anxiety around disclosing their mutation status, but also feel the urgency to find a partner and have children quickly. It’s quite a confusing juxtaposition.
While there appear to be many negatives to these situations, it’s important to remember that there are also positives including how empowering having choices and decision-making power can be.
Many of the anxious fears and beliefs around sharing a high-risk status and body image have been shown to be unfounded and some strategies for managing the practical and emotional aspects discussed throughout this article will be provided in a follow-up post.
It is my hope, that this article has shone a spotlight on some of the unique challenges faced by high-risk families.
As BRCA1 positive, high-risk woman, Angelina Jolie once said, “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”
Dr Jodie Fleming is the author of the breast cancer memoir A Hole in My Genes, a book filled with her professional and later personal candid, raw experiences of being diagnosed with two primary breast cancers at the age of 37 and later discovering she is BRCA1 positive. A Hole in My Genes is filled with all of the psychological tools Jodie used to navigate her way through her own cancer treatment with a healthy amount of family dysfunction to boot. You can find A Hole in My Genes in all your usual online bookstores in hard copy and eBook. You can also join Jodie on one of her international Wellness Retreats. For more, visit her websites drjodiefleming.com.au or thepsychologyofit.com.au.
