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The Emotional Side of a Cancer Trial No One Warns You About

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cancer trial

While everyone’s route to dealing with cancer treatment can vary, participating in a clinical trial can be a part of the journey for some people. According to a 2024 review of oncology clinical trial data, about 7.1 percent of people who were undergoing treatment for cancer also joined a cancer treatment clinical trial. Although clinical trials can offer more focused care and access to treatment options that aren’t yet available to others, they also carry risks. The new medication may have unforeseen side effects or be less effective than your current regimen. One issue that you may not consider before participating in a clinical trial is how it may affect your mental health, so it’s good to know what to expect. 

How Common Are Mental Health Issues in Oncology Clinical Trials?

The first thing you need to know is that multiple studies globally have shown that people who are dealing with cancer tend to have higher rates of mental health concerns than the general population. The participants in these studies noted that they had concerns about the future, a sense of hopelessness, anxiety, and depression. However, anxiety and depression were usually the most common complaints. 

When it came to anxiety, participants used self-reporting tools to share their experiences. The incidence rate ranged from 12 to 25 percent across several global studies. Researchers noted, though, that there was a higher prevalence in women and younger people, as well as those who were dealing with pancreatic and lung cancer. 

For depression, it was estimated that 25 percent of people dealing with cancer also reported depression. This was in addition to the understanding that those with this condition were already five times more likely to have depression than the general population. These issues seemed to persist regardless of the stage of cancer and the type of cancer that they were diagnosed with. 

What does this look like when someone joins an oncology clinical trial, though? Well, in one observational study that surveyed participants in an early-phase clinical trial, the results showed that the mental issues didn’t get any better. Of the 57 participants who returned their questionnaires, 39 percent reported clinically relevant levels of anxiety whilst 18 percent reported clinically relevant levels of depression.

In a cross-sectional survey in China, researchers asked 112 cancer patients who were in clinical trials about their mental health. These patients had already noted serious adverse effects during their trials. According to the survey, 38.4 percent of the participants reported having moderate to severe depression, while the prevalence of moderate–severe anxiety was 13.4 percent. Of those who reported moderate to severe anxiety, 93.3 percent had concurrent moderate to severe depression as well.

Even though everybody’s experience differs, some participants reported that their anxiety and depression were related to the clinical trials themselves. They were reacting to issues such as the unforeseen side effects of the medication, negative effects on their quality of life, feeling as if they’d lost control, and not knowing if the trial would have the intended effect on their prognosis. 

Researchers are also interested in exploring how certain biological changes during treatment, such as inflammation, may contribute to anxiety and depression. 

Of course, it’s important to note that these studies have inherent limitations because they depended heavily on self-reporting. Even with detailed surveys or questionnaires, they still relied on people to assess their mental health, which may not have been objective. Still, the results are worth noting. 

RELATED: What Black Parents Should Know Before Joining a Clinical Trial

The Signs You Should Know

With so many people reporting issues with anxiety and depression not only when undergoing cancer treatment but also when joining clinical trials, you need to pay attention to your mental health. It’s not uncommon to have moments of sadness or to worry about how things are going to turn out, but you should know when it’s become more than that. 

Some signs of depression you may notice include:

  • A persistent sadness
  • Loss of interest or pleasure
  • Having low morale
  • Feeling discouraged
  • Feeling like a failure
  • Feeling trapped
  • Not coping well with your current situation
  • Feeling hopeless
  • Feeling as if the treatment is pointless
  • Having impaired function in your daily life
  • Having suicidal thoughts

Some signs of anxiety include:

  • Inexplicable fear
  • Consistent worrying
  • Being unable to concentrate
  • Feeling restless or edgy
  • Feeling tired all the time
  • Having muscle tension
  • Having trouble sleeping
  • Being inexplicably irritable all the time
  • Having panic attacks when you didn’t have them before

Of course, this list is far from exhaustive. The important thing is recognizing that things have changed and you need to do something about it. 

RELATED: The 10 Essential Steps That Increase Your Odds of Getting Into a Clinical Trial

How to Manage Your Mental Health

Although mental health is important when you’re dealing with cancer, it still doesn’t get the attention it needs. However, you may be able to improve your mental health by practicing mindfulness. A literature review and an analysis of data from several studies suggested that therapy based on mindfulness improved the well-being of those who were undergoing cancer treatment more than people who didn’t receive that kind of intervention. 

Fortunately, you don’t necessarily need a doctor’s help to start practicing mindfulness a few minutes at a time. Some helpful mindfulness activities are:

1. Mindful breathing:

  • Sit in a comfortable position, close your eyes or soften your gaze, and bring your attention to the natural rhythm of your breathing. 
  • When your mind wanders, gently bring it back to the sensations of breathing.
  • Continue this practice for a set amount of time, gradually building your ability to stay present and aware.

2. Mindful walking:

  • Walk slowly in a low-stimulation environment such as a park, bringing attention to the sensations of your feet touching the ground. You can also do this at home.
  • Continue bringing your attention from your thought stream to the moment-to-moment external sensations.

3. Mindful eating:

  • Put the screens away and sit down to eat. 
  • While eating slowly, notice the food’s appearance, aroma, texture, and flavors.
  • Eat one bite at a time and pay attention to the sensations of eating your food. As with the other practices, your mind will likely generate thoughts; when you notice your attention has left the sensations of eating, gently bring them back.

4. Mindful meditation:

  • Start the day with a guided meditation using an online video or app.
  • Alternatively, you can try a meditation-based yoga sequence

5. Mindful body checks:

  • Find a comfortable seat or lie down. Close your eyes and breathe more deeply and slowly. First, focus your attention on your feet. 
  • Notice any tension, pain, or stress. Take deep, slow breaths as you focus your awareness on that area of your body. 
  • As if you are scanning your body with light, move your attention slowly upward. 
  • Notice how each section of your body feels as you continue to breathe slowly: your shins and knees, thighs and hips, lower back and abdomen, chest and upper back, neck and shoulders, and finally your head.

When to Talk to Your Doctor

When it comes to your mental health, the time to talk to your doctor is immediately. It doesn’t matter how small you may think the issue is. You should be especially upfront about previous or current mental health issues such as:

  • Anxiety
  • Depression
  • Eating disorders
  • Insomnia
  • Mood disorders
  • Phobias
  • Post-traumatic stress disorder
  • Psychosis or schizophrenia 
  • Past or current alcohol or drug use
  • Past or current instances of self-harm or suicidal thoughts 
  • Prior traumatic experiences

Doing this will ensure that your doctor will keep an eye on any effects on your mental health during treatment. 

It’s important to note that the symptoms of depression and anxiety are significantly associated with poor outcomes for cancer patients. Some of these outcomes are decreased quality of life, diminished health status, poor treatment compliance, and increased somatic symptom burden. Some literature also shows that there is an appreciable link between depression and anxiety and increased morbidity and mortality in cancer patients. 

With that in mind, it’s in your best interest to seek early intervention for your mental health. Not only is this good for your well-being, but it can also positively impact your treatment. Although your doctor may explore different forms of therapy, such as cognitive behavioral therapy (CBT), you may also benefit from medication. 

Depending on your health status, clinical trials may be helpful to your treatment. However, it’s important not to ignore the impact it can have on your mental health. Once you know what to look out for, you can take measures to ensure you manage anxiety and depression. Remember that you don’t have to handle it on your own, though. Talking to your doctor about what’s going on can make a big difference in determining when it’s time for medical intervention. 

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