Surviving Cancer Takes More than Just Great Treatment 

One cold March morning changed our lives forever. It wasn’t until I had to tell my parents that my two-month-old son had been diagnosed with cancer I realized I wasn’t going to be able to wake up to end this nightmare. That was only the beginning.  

Your mind races and questions abound, but answers are often infrequent. There are new doctors, new medications, new instructions, and mountains of uncertainty. There’s blood work, imaging, surgeries, treatments, hair loss, and scars — physical and emotional. Then there are the mounds of paperwork and the bills, lots of very expensive bills. 

During the State of the Union Address, President Biden issued a call to action: 

“Our goal is to cut the cancer death rate by at least 50% over the next 25 years. Turn more cancers from death sentences into treatable diseases. And provide more support for patients and families. 

It’s personal for so many of us[1].” 

This issue is personal for me as the mother of a now five-year-old, that was diagnosed with pediatric cancer when he was just two months old.Whether it is a day that the world is celebrating the strength of cancer fighting superheroes and their caregivers, like we did duringInternational Childhood Cancer Awareness Day this week, or just a routine day, those who have been impacted by cancer rarely forget it. 

A little over 1.9 million new cancer cases are expected to be diagnosed in the United States in 2023[1]. There are more than 18 million people in the U.S. with a history of invasive cancer, most of whom were diagnosed many years ago and have no current evidence of the disease[2]. Thankfully, the cancer death rate in the US has fallen 33% since 1991, which corresponds to an estimated 3.8 million deaths averted, according to a new report [2].  

While treatments have improved, and more lives have been saved, the physical and emotional toll of cancer remains for patients and caregivers alike. Treatment is only one piece of the cancer experience. There are appointments to schedule, bills to pay, and prior obligations that you want to meet. To say it’s a lot to manage is an understatement.  

Following the State of the Union, the White House said[3]the Administration will take steps to ensure that patient navigation services — services that help guide individuals, caregivers, and families through cancer screening, diagnosis, treatment, and survivorship — are covered benefits going forward for as many people facing cancer as possible. We all know our healthcare system is complex, confusing, and costly with or without a cancer diagnosis. And cutting through the noise after a cancer diagnosis and jumping through life’s hurdles when just trying to “survive” is exhausting. 

As part of The Cancer Moonshot Initiative, the Administration has called for additional resources to support individuals with cancer, their caregivers, and their families throughout their treatment journey and into survivorship is to be commended. All Americans, regardless of who pays for their care, whether it’s their employer, Medicare, Medicaid, or the U.S.Department of Veterans Affairs, deserve to have access to the best providers, treatments, and support services, in an integrated experience.  

You deserve peace of mind because you or your loved one has gotten a second opinion on your diagnosis and treatment. In my son’s case we had access to a cancer center of excellence (COE) program through my husband’s employer, where we were able to get a second opinion from a world-renowned expert without any additional cost to us. These programs are becoming more readily available but are hardly the norm.  

Cancer can wreak havoc on patients and caregivers physically and mentally. Access to a therapist can help you deal with your new reality, anxiety and sleeplessness, doubt, and even depression… all of this can and should be made available to everyone battling cancer and their caregivers. 

After treatment, there’s often some letdown. There’s fear of cancer’s return. There could be physical changes, ongoing tests (in our case, many, and there will be for the foreseeable future) and new habits that must be maintained. Ringing the beautiful gold bell at the end of treatment doesn’t mean it’s all behind you, the next chapter is just beginning, and a new set of needs emerge. 

Cancer doesn’t have to define you, and with robust support, it won’t. We deserve better and better is what we can achieve.  

As we approach the five-year anniversary of my son’s diagnosis, we are grateful for the care team that has supported him and became such an important part of our lives. It was the family and friends that did so many of the little things that kept us on track so we could focus on ensuring he received the best care possible. After four rounds of chemotherapy and three surgeries, Gordon is off-treatment but living with his abdominal tumor. He still has a long list of providers that observe him and regular imaging, and his cancer journey is only just beginning. More importantly, today he is a happy, energetic, and brave five-year-old.He is a soccer superstar and is gearing up for his first season of t-ball. He’s our #SuperGordon.  

[1]https://www.whitehouse.gov/briefing-room/speeches-remarks/2023/02/07/remarks-of-president-joe-biden-state-of-the-union-address-as-prepared-for-delivery/ 

[2]https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21763 

[3]https://www.whitehouse.gov/briefing-room/statements-releases/2023/02/07/fact-sheet-in-state-of-the-union-president-biden-to-outline-vision-to-advance-progress-on-unity-agenda-in-year-ahead/