Ovarian Cancer Caregiving

September is Ovarian Cancer Awareness Month and, while this type of cancer is rare, it is persistently deadly. An estimated 19,710 Americans will be diagnosed with ovarian cancer in 2023 – barring a big breakthrough, only half will be alive in 5 years. Outcomes are much better with early diagnosis, but more than three-fourths of patients are diagnosed after the cancer has advanced. This low overall survival rate is unsettling, and it completely upended my world. 

My mom was diagnosed with ovarian cancer in November 2017. Initially, there was a lot of optimism that it could be effectively treated. She was classified stage I and her specific subtype was considered responsive to chemotherapeutic drugs that existed. I remember breathing a sigh of relief at her doctor saying that it should be a “slam dunk” and that it was the best news he got to deliver that day. The surgery to remove the tumor was a success and platinum-based chemo was administered for good measure. She would be fine. 

What followed was a yearslong fight that will sound familiar to many patients and their loved ones. Ovarian cancer patients face a daunting rate of recurrence – the cancer comes back for around 70% of initial responders. Despite the best efforts of her care team, my mom was part of that statistic and experienced multiple disease recurrences. As time went on and my mom resolutely progressed through several lines of standard treatments, my family became experts in medical jargon, treatment acronyms, and hospital systems. 

After her fourth recurrence, we were out of “off-the-shelf” treatment options and effectively fell off a cliff of care. Our only chance was to find experimental therapies for a very rare cancer type, with few, if any, trial options. My family now had to become knowledgeable about molecular oncology, clinical trials, and navigating complex treatment decisions. It was almost overwhelming how much we learned, but it was well worth it after we enrolled in a clinical trial that shrank the cancer back down. 

In the beginning, with little information, I was just a supportive daughter when my mom was going through challenging chemotherapy treatments. Eventually, my role shifted to serving as a dedicated caregiver. It was a massive lift – almost like a part-time job. As our parents age, many of us confront the dilemma of how to care for them. And I happily accepted the responsibility, even though I experienced an accelerated version. 

My mom’s cancer was complex and very aggressive, and my family lost her in 2020. It was devastating. While I had changed my role and “mindset” from daughter to caregiver as her condition deteriorated, I was not prepared for the grief that followed. Who is? Nothing can prepare you for the pain of losing someone you love so deeply.  

But there are so many things I wish I knew early on to prepare for my role as caregiver.  

First, it is incredibly important to advocate for either yourself or your loved one. I say this knowing that many people do not have natural ability to advocate or realize they should be part of decision-making with their care team. Feeling overwhelmed or disempowered in the doctor’s office can be amplified for people based on many factors, including their race/ethnicity, sex, culture, age, education, and SES. Despite several advantages my family had in navigating my mom’s care, like my background in public health, we often felt underpowered in interactions with clinicians. But we acquired some helpful skills: 

Don’t be afraid to ask questions and keep asking questions. My family always found it helpful to write out tons of questions ahead of time - no matter how small or silly they felt. We defer to my mom to take the lead during the appointment or step in and help if she needed. Emotions and stress can feel amplified in the healthcare setting. Prepared questions made it easier to focus and helped facilitate conversations that mattered to us. 

Take notes! My dad and I would often tag team appointments or go all together to make sure my mom had a dedicated notetaker. If possible, make sure there a family member or close friend who can take notes so the person with cancer can focus on the conversation with their doctor. 

Be prepared to work with and understand different cancer centers and facilities so you can seek a second opinion or explore treatment options. We visited or consulted with several cancer care centers, clinical trial hubs, and information sources. The U.S. healthcare system is extremely siloed. So, we brought together information from different sources and used it to quickly communicate my mom’s history, things to pay attention to (e.g., specific biomarkers that could give earlier indications of a treatments effectiveness) and, most importantly, our priorities to new providers. This is where the above notes come in handy, plus Cancer.net has some tips on how to build a Personal Health Record.  

Push for what is possible beyond “standard of care”. We were lucky that my mom’s doctors offered to genetically profile her tumor before we even knew to ask for that. New genetic sequencing tools can sometimes identity more targeted treatment options, as an alternative to moving through chemotherapy protocols hoping that something works. But not everyone knows this technology exists or that it is often covered by insurance. When my mom’s case became more complicated, we pushed for follow-up genetic testing to see if her cancer had changed in response to treatments, keeping us up to date on trials she might qualify for. We also leaned on a nonprofit called Cancer Commons and received guidance on how to access the best clinical trial options.   

Secondly – and it took me a long time to appreciate this – delegate what you can. Caring for a loved one comes with a lot of responsibilities and things to figure out, many of which I was not prepared for. People around you might want to help but don’t know how. And you can be so overwhelmed you don’t know where to begin or even know where to let go. Start with a list and then identify your most important items. Keep those for yourself. Everything else that you can hand off to someone else, do it! You will drown otherwise. Although I never used any tools for this, there are some online platforms for this like Lotsa Helping Hands. 

Lastly, caregiver stress – the emotional and physical stress of caregiving – is common. You may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Becoming familiar with how stress impacts you can be a helpful first step to manage it. Are there any signs you notice in your body or how you behave when you are stressed? You might find it helpful to join a support group or get dedicated therapy. 

I remember my mom warmly during this month, but I also think compassionately of all the caregivers out there who have stepped up to support loved ones and friends. I hope you stay strong, feel empowered, and get the support and rest you deserve.