Cancer Distress after Diagnosis Is Real. Here’s How to Get Your Mind Right.

I don’t remember what was on the TV—just that I was sitting in the dark and what I was watching couldn’t have been all that interesting because when the phone rang, it woke me out of a semi-sleep. I wasn’t ready for what I would hear on the other end of the phone: one of my dear friends, one of my heartbeats, was calling to tell me that she’d been diagnosed with cancer—a cancer that has one of the lowest survival rates of all. She kept her cool through the questions, apologies and I love you’s, but I’m pretty sure she did exactly what I did when we hung up the phone. The tears were uncontrollable. The emotions—raw, heart wrenching, mournful—were inconsolable. She was convinced she was going to die. And so was I.

I know what I was feeling in that moment with the prospect of losing my homegirl. But this was miniscule compared to the feelings of my friend, who was about to be in the fight of her life. She had no health insurance, not much money, and only a fraction of the support system she’d need to find the right doctors, treatment and mental fortitude she’d have to employ to overcome the odds, find the will and do what she needed to do to stay in the land of the living.

Needless to say, she was in distress. Understand: that’s a legit thing. Cancer-related distress is any unpleasant emotion—sadness, hopelessness, powerlessness, uncertainty, feeling guilty, etc.—that affects the quality of life of patients and their caregivers, plus how they cope with the illness and interact with others. It can leave patients and their caregivers struggling with mental, physical, social and spiritual challenges, making it that much harder for them to fight cancer.

What are some of the symptoms of cancer-related distress? Helplessness, feeling out of control, anger, poor sleep/appetite/concentration, questioning your faith or purpose, anxiety, panic and frequent thoughts of death are just a few. In some cases, it can legit lead to clinical depression. Warning signs of more serious distress include feeling panicked, stressing that you’re unable to go through or cope with treatment and its effects, having difficulty making decisions, having intense family conflicts, and having trouble falling and staying asleep for more than four hours a night.

Can you imagine dealing with all of that while you’re fighting cancer—while you’re fighting for your very breath?

Luckily, distress management is now a part of standard care for patients with cancer, thanks to the work of a panel of experts who agreed that cancer treatment should include distress screening, treatment planning, referral to experts who specialize in distress and reevaluation. I’d like to trust that this is the case for everyone, but as an African American woman, I make no bones about pointing out how the standard of care for black folk can be challenged in a healthcare system that has repeatedly shown itself to be biased against us. Access to quality healthcare can be a challenge when you’re Black and especially if you’re Black and poor. But add to that the inherent biases from healthcare providers—dismissing our pain, skipping critical screenings, heading straight to more radical procedures they’re less likely to use on white patients, cultural incompetency when it comes to speaking to us, are just a few of the biases we experience in doctors’ offices—and you’ve got a recipe for disaster for black patients already charged with the herculean task of fighting cancer, much less getting into the right frame of mind to do so.

So it’s on us to understand what is happening to our bodies—and our minds!—knowing what we need to heal our bodies, minds and spirits, and being proactive about getting it from our care team. In the case of cancer care, patients should be screened for distress and offered help at doctor visits. If it’s not addressed, patients need to have a candid conversation with their doctors and ask questions! Your care team should be able to tell you if your symptoms are related to distress, how they can help you deal with that distress and ways you can relieve distress on your own.

If your care team isn’t asking, here’s what you need to do:

• Tell them if you’ve experienced crises in the past that resulted in severe distress, and tell them what the crisis was about.
• Tell them how much you know about your cancer and if you want to know more, ask them!
• Tell them what you’re most worried about and what you’re hoping for. This is a revelation that cuts to the heart of what’s distressing you most and tells your team how to deal with your concerns.
• Tell them three things that bring you joy—giving your care team a clear view of who you are and what you value most in life.

Now, a good care team will ask you questions to get to those answers, and they’ll discuss those answers every time there’s a change in treatment or a patient’s condition because, hello, we are humans and everchanging and our feelings are ever-evolving. All of this is important, though, because treating cancer isn’t just about the medicine; it’s about how the patient is reacting to their diagnosis. My friend was a wreck. When my dad was diagnosed with prostate cancer, he was mostly quiet, deliberate and unemotional. Me? Well, I’m the Mistress of Freakouts and worried about every… little… thing… when it came to my friend and my dad.

Which leads me to caregivers and their needs: cancer centers aren’t required to screen for distress in caregivers and rarely does anyone ask how they’re doing. But they’re becoming caregivers overnight, even while juggling work, child care, finances, household duties and the navigation of their loved one’s patient care and distress. It wouldn’t be a bad thing if the caregivers got some resources, too.

Get help and support at cancersupportcommunity.org. And get more information on cancer-related distress, plus treatment and support here at cancer.org.

And then do me this solid: my partner, Med-IQ, an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals, is conducting a survey designed to further education on cancer-related distress and I need you, my incredible and diverse MyBrownBaby audience, to fill out that survey. It’ll take you less than 15 minutes and when you complete it, you’ll be entered into a drawing to win 1 of 10 $100 VISA gift cards. No personal information will be kept, sold or stored in the survey completion process.  

Just so you know: it was a rough road for my ace, but she pulled through and today is cancer-free. So is my dad. Give thanks, man. Give thanks.

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 I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about managing distress for cancer patients and their caregivers. All opinions are my own.

Also, links throughout my post are being provided as a convenience and for informational purposes only; they’re not intended and shouldn’t be construed as legal or medical advice nor are they endorsements of any healthcare provider or practice. Med-IQ bears no responsibility for the accuracy, legality, or content of the external sites or for that of subsequent links. Contact the external sites for answers to questions regarding their content.

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