Mesothelioma is an aggressive cancer caused by exposure to asbestos. When patients receive a cancer diagnosis, it can be hard to stay positive.
Researchers are only now beginning to examine the complex relationship between physical and mental health.
Recently, a team of doctors from the University of Sheffield set out to analyze the mental health and well-being of those living with mesothelioma as well as the caregivers supporting them through it.
What the Study Team Found
The researchers who conducted the study concluded that mental health is a major area of concern for mesothelioma patients and caregivers.
“All patients have different feelings or approaches toward receiving bad news, and that can have an impact on how favorable or unfavorable the prognosis is,” said Dr. Matthew Steliga, a leading mesothelioma specialist.
They observed distinct changes related to:
- Anxiety
- Depression
- Posttraumatic stress disorder (PTSD)
- Posttraumatic growth
The team stressed that people impacted by mesothelioma need better support methods to address these unique challenges.
Our Free Mesothelioma Guide offers valuable insights and resources to help patients and their families navigate this journey — request it now and it will be shipped to your doorstep overnight.
Anxiety and Mesothelioma
Half of the 96 study participants reported anxiety. The high levels of anxiety show the mental effects of mesothelioma that impact patients and those who care for them.
Specifically, participants discussed a type of fear known as “scanxiety,” which is the worry they felt while waiting for the results of imaging scans. The worry of the cancer spreading or returning was a major source of stress for patients and their loved ones.
“My heart sank. As soon as you Google it, the thing that comes up is ‘incurable, incurable,’” said Crystal, a mesothelioma caregiver in the study.
Over 33% of patients and caregivers also experienced PTSD, with symptoms such as flashbacks, dissociation, and avoidance behaviors.
Whether you’re facing mesothelioma as a patient or caregiver, seeking out support groups can help you find someone to talk to and make you feel less alone.
“That is what I would share with anyone with a serious chronic disease — never give up hope and remember that your life is yours, not the disease’s.“
Depression and Mesothelioma
Depression after a mesothelioma diagnosis was common. Over 30% of the study participants reported clinical levels of depression.
Sadly, being diagnosed with mesothelioma is often perceived as a “death sentence,” leading to feelings of hopelessness and despair.
“[My husband] might have only died 2 years ago, but he died 4 years ago in my eyes. The day he found out, he changed,” said Laura, a mesothelioma caregiver in the study.
Patients & caregivers were profoundly affected when they imagined:
- An anticipated decline in their quality of life
- Their expected prognosis (overall health outlook)
- Limited time left to spend with loved ones
“I’ve had the treatment, I’ve done whatever, but it’s now, this year, it’s this reality now…I’m going to die. That’s the truth, out loud, and it’s hit me,” said Ray, a mesothelioma patient in the study.
Both patients and caregivers faced considerable disruptions to their daily lives, including challenges performing normal activities, managing pain, and dealing with ongoing uncertainty about the future. These factors worsened feelings of depression.
Need emotional support after a mesothelioma diagnosis? Call (866) 608-8933 to connect with one of our compassionate Patient Advocates.
Posttraumatic Growth
Researchers introduced what they called “posttraumatic growth” (PTG), finding it to be crucial to the journey of mesothelioma patients and their caregivers.
Posttraumatic growth refers to positive psychological changes experienced as a result of struggling with a mesothelioma diagnosis. In the study, over 35% of patients reported experiencing PTG, demonstrating significant personal development.
“We’re obviously stronger in certain ways as well. How we’ve coped with it really well. Given the patience we’ve had to have and optimism in the face of the unknown. We are getting on with things,” said Jenny, a mesothelioma patient in the study.
PTG was observed in several ways, including:
- A greater appreciation of life
- Improved relationships with others
- New possibilities for their lives
- Personal strength
- Spiritual growth
Patients and caregivers reported that the challenge of dealing with mesothelioma led them to value their relationships more deeply, cherish each moment, and find new strengths within themselves. Some even developed a renewed sense of purpose or meaning in life.
“This last 18 months of my life has been really good, probably better than it would have been without a disease, because I’ve done more and I’ve been more positive, and so have my friends and family,” said Susan, a mesothelioma patient in the study.
Overall, the study stressed that health care professionals should try to foster PTG feelings in patients and caregivers to help counter their emotional and psychological challenges.
“It makes me realize these things can come out of the blue no matter how healthy and fit you are. I think you don’t take anything for granted these days as a family,” said one caregiver.
Mental Health Impacts on Mesothelioma Caregivers
Mesothelioma caregivers face similar yet unique mental health challenges, experiencing intense worry and stress from watching their loved one suffer, tending to their health care needs, and juggling demands on their time.
The study found that caregivers:
- Had more anxiety than patients
- Experienced worse depression
- Often neglected their own needs
- Showed significant PTG
Caregivers often find themselves in the position of internally grieving the loss of their loved one as they knew them while putting on a brave face — potentially bottling up emotions to stay strong.
“He just didn’t want to know that he was dying. So, we just…not kept it from him but we took the brunt,” said Natasha, a mesothelioma caregiver in the study.
Researchers recommend that caregivers seek out targeted support aimed at their specific stressors.
Download our Free Mesothelioma Caregivers Guide to get practical tips and advice that can help you prioritize your well-being.
Get the Personalized Care & Support You Need
At Mesothelioma Hope, our team understands the impact this challenging cancer can have on your health, your overall well-being, and your family — and we’re here for you.
Our nurses and Patient Advocates can:
- Lend a caring ear to help you manage the mental health impacts of a diagnosis
- Recommend in-person or online support groups and peer mentor programs
- Help you make travel arrangements to and from appointments
- Connect you with mesothelioma doctors and mental health professionals
- Share financial resources that can help you and your loved ones
“To effectively manage my own care as a young adult, I had to become my own best advocate. Understanding how daunting this can be has given me the drive to empower others to help overcome their health care obstacles.”
Contact our team right now — we’re standing by to answer your questions and make sure you feel heard and supported.
