CREATED IN MEMORY OF LUCAS DANIEL
These cancer diagnosis and treatment worksheets were inspired by the terrible experience my husband, Lucas, and I had when he was diagnosed in early February of 2017 with neuroendocrine cancer.
We got stuck with an oncologist who didn't give us a complete or accurate picture of his cancer, his treatment plan or his prognosis. If we had comprehensive information from the beginning, we likely would have made different choices and may have had more time together.
He died six weeks after his diagnosis in March of 2017.
My husband and I met at the Institute of Design at the Illinois Institute of Technology and dedicated ourselves to helping organizations create better experiences for the people they serve. I am appalled at the healthcare experience we had and know that if Lucas were still here, he and I would collaborate on solutions so that others don't have to experience what we did. Instead, I created these by myself but with the input of other cancer widows from the HYWC.
I hope these worksheets help someone else have a better experience than we did.
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.
ABOUT THE WORKSHEETS
There are five worksheets. You can use all of them or one of them. At the very least use the diagnosis and treatment worksheets to get specific information from your healthcare provider.
Lucas wasn't told where all the cancer was in his body, the sizes, or how quickly it was spreading and growing.
This template helps document the sites and sizes so the cancer can be tracked over time.
Although we understood the plan for treatment, we didn't understand the criteria and tests that would be performed to assess if the treatment was effective and if we needed to change course.
Lucas was being prescribed so many medications by so many doctors. Ultimately because no one was coordinating his care or looking across his medications, he stopped being active, got edema, a blood clot and then finally had a heart attack. By clearly understanding the medication, expected symptoms, and criteria for stopping the medication, patients and caregivers can make better tradeoffs.
It was often hard to discern what was a symptom of the cancer vs. a symptom of the medication. By keeping track of these symptoms it can help to communicate changes to your caregivers while giving you some perspective to see how you've felt over time.
DIAGNOSTIC TEST RESULTS
Diagnostic tests are major milestones in the cancer journey. There are many types and it's often not always clear what is going on. This worksheet helps to document those tests and see progress over time.
If you have any feedback on the sheets, please share it by filling out the form below.