My mother, Julie, was diagnosed with stage 4 ovarian cancer in the fall of 2017. I was 21, just months after my first legal drink, at the time of her diagnosis. Since then, she has undergone nine-hour surgery, six rounds of chemotherapy, three relapses, and two clinical trials. It’s been five years of pain, fear and love so bright it’s blinding.
The cancer roller coaster is all about ups and downs and 360 degree flips. Yet, in my mind, his treatment divides neatly into two phases. These phases are divided not by surgeries or chemotherapy or vacations spent wondering if they would be the last, but by a change in federal health care policy.
In April of 2021, a national rule, part of the 21st Century Cures Act, went into effect that requires healthcare professionals in the United States to provide patients with quick and complete access to the health information in their electronic health records free of charge. For our family, the rule of care split my mother’s cancer in two.
Phase 1 was defined by anticipation. At this stage of my mother’s cancer, Scan Weeks began with blood tests to measure cancer markers and organ functions. Then came her CT scan, her tumors measured to the centimeter, the results recorded in radiology reports that we had never read. After the scan came the wait.
Much of cancer is waiting. No naming convention seems more cunning than that of the hospital waiting room. Bodies sit in liminality, stuck between their diagnoses and their lives. As we, Team Julie, waited for our oncologist to reveal the results of my mother’s latest scan, we were flooded with acute anxiety. Without information, it seemed impossible to plan, predict, prepare.
And then: Judgment. Heaven or hell. Tumor shrinkage or tumor growth. The moment seemed catastrophic, decisive, often devastating. Making decisions in shock is difficult, but when test results are revealed and treatment decisions are made within the same 30-minute appointment it is exceptionally difficult. We have often done just that.
When the care rule went into effect, we entered stage 2 of my mother’s cancer. It was also a new phase for Memorial Sloan Kettering Cancer Center’s app, MyMSK. MyMSK launched in February 2015, but it wasn’t until the Rule of Care that the hospital started releasing radiology reports as soon as they were available through the app, often within hours after the scan and several days before the fatal appointment with our oncologist.
At first, Team Julie was ecstatic. No more waiting. No more Judgment Day. Instant information felt like a balm for the endless list of unknowns that accompany cancer, and we desperately wanted her relief. For the first time I downloaded the MyMSK app on my phone.
Scan Weeks has taken on a new form. Now my mom’s CT scan results were recorded and published in reports that we were able to read the same day. I spent those days loading and reloading the MyMSK app on my phone, waiting for the results. The moment the app revealed that a new CT report was available, my stomach lurched. A full 360-degree ride of a roller coaster condensed into a single moment.
As Phase 2 continued, loading and reloading the MyMSK app became a nervous habit. Stopped at a red light, by a public toilet cubicle, as I lay in bed watching TV, loading and reloading the app, waiting for the updated results. My obsession was reminiscent of repeatedly updating my Instagram feed after a particularly painful breakup. He was compulsive and isolating. I canceled plans when the CT reports showed up and spent my time attempting to decode the results. Buried so deeply in my projection of future losses, I began to slip out of the present.
There was a fundamental flaw in my obsession, one revealed in the very first line of every CT report: Clinical Statement: Ovarian Cancer. These reports were written and intended to be read by physicians, and I, nor any member of Team Julie, could describe myself as that.
After reading the results separately, Team Julie would come together.
Oh thank God! My mother began our joint telephone conversations, always optimistic: my tumors have not grown That much!
Then my uncle, more cautious: does he seem to be blocking a hepatic vein? I think that’s what we were looking for.
Then my other mum, the pragmatist (and psychotherapist): it seems that the tumors have grown, but we expected it. Breathe everyone.
And finally, me, the first to read every scan, the first to Google every medical term, the first to calculate the growth rate of each tumor: the 22.6% growth of the tumor in the right posterior sector combined with the l 20 point increase in his alanine transaminase, I don’t like it. She is getting sicker and sicker.
If before the rule of care our oncologist was our God, after we started trying to play God ourselves. We’d spend the week before an appointment deciphering reports, each with different judgments. Often some tumors had grown and some had not. Blood tests revealed that some cancer markers increased and others fell within the normal range. The information, which we had so deeply desired, rarely told a clear story.
A key benefit of updating to the Cures Act is an increase in patients’ ability to make well-informed treatment decisions and advocate for themselves in a complex and often opaque medical system. Further, Education have shown that access to medical records makes patients feel more informed about their care, better prepared for appointments, and more likely to follow their doctors’ advice.
But what happens when access to information increases without improving our ability to understand or synthesize it? What happens when patients receive highly anticipated medical records and scan results without a doctor helping them decode and demystify them?
Receiving medical information without our oncologist, especially when he reveals how my mother’s last scan did that death is approaching, is devastating. In truth, cancer is almost always devastating. And the simple fact is that when it comes to cancer, no one can play God, not my mother, other family members, or myself. Not even our oncologist. He can add pain to an already deeply painful situation to experience.
Technological advances driven by the Rule of Care have improved cancer care in many ways, with a recent study showing many patients prefer to receive electronic test results, even before meeting with their providers. But for our family, having early access to the scan results via the MyMSK app only increased our concern and made it more difficult to stay present with my mother, instead keeping us preoccupied trying to figure out what the results meant for the progression of hers. cancer. Now, as my mom reaches the final stages of her illness, being there is more important than ever.
So, we came up with a plan. In this final stage of my mother’s cancer, our family will open the CT reports together, one hour before meeting with our oncologist. It will not be possible to load or reload the MyMSK app, don’t play God, we’ll be family, riding this roller coaster as best we can.
#Perspective #dealing #cancer #prognosis #information #isnt #power