What To Do If You're Blindsided By A Medical Diagnosis | KERA News

What To Do If You're Blindsided By A Medical Diagnosis

Mar 3, 2017

Update: Jeffrey Weiss died Oct. 25, 2017. He was 62. Read his obituary from The Dallas Morning News. 

Death is inevitable, but few are willing to confront it publicly. Jeffrey Weiss has been a reporter for 35 years, and he’s in the middle of writing the story of his life – a series about his own brain tumor.

Weiss showed few symptoms of glioblastoma. Then he developed a blind spot in his right eye, and doctors discovered an egg-sized tumor in his brain.

A scan of Jeffrey's brain. The dark mass on the right is his tumor.
Credit Louis DeLuca / The Dallas Morning News

“Because I’ve been a reporter most of my life, it caused me to react in ways that I’m pretty sure the doctor who was talking to me thought I was nuts,” he says.

Though this is his third bout with cancer, Weiss says he’s more focused on doing things he likes – and he’s monitoring his illness with a journalist’s eye.

6 Steps To Take If You're Blindsided By A Brain Tumor

Here are Jeffrey Weiss's suggestions for a patient, or caregiver, after a cancer diagnosis:

Jeffrey's wife Marni (far right) looks on as a nurse draws blood.
Credit Louis DeLuca / The Dallas Morning News

  1. Web research - Do some research quickly after your diagnosis.
  2. Reach out - I used the results of my searches — including several recent major medical journal reports on glioblastoma treatments — to come up with people I wanted to email.
  3. Advocate - If at all possible, have an adult advocate involved in what you are doing. Husband, wife, friend, whatever. No matter how with it you think you are, you aren’t. You may be ill; for certain you’re distracted.
  4. Choice of treatments - As quickly as you can, come up with a set of choices for where you want to consider treatment. Some illnesses have very limited choices, some have more. You want to find the best place for you, and some are better than others.
  5. Keep checking for info - Don’t stop looking for information online after you choose your doctor.
  6. Don't become passive.  Even after you’ve chosen your doctor, do not go passive. If you come up with new questions, ask them. And if you don’t get answers at a reasonable pace, push.

Here’s my best meta-thought about how to go after treatment for a serious illness: Good and fast research will lead to effective questions. Getting answers from doctors will help you understand what’s happening and may nudge the doctors toward their most effective work.

Read the full article here