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Surviving The Psychosocial Effects That Can Outlast Cancer

Help comes in different forms when you have cancer.

Lauren Ghazal, a 28-year-old family Nurse practitioner, was in shock after receiving a stage 2 Hodgkin lymphoma diagnosis two years ago. It pushed her to the point where she could not process anything that was happening to her. To get by, she focused on doing what was needed just to get through the treatment, but after the treatment ended, new problems began.  Problems she was not prepared for.  She no longer had frequent visits with her oncologist. Her friends and family checked on her less frequently.  She was bald and extremely fatigued from chemotherapy, but she was told she had to go and live her life again, but she struggled to do so.  Instead, she had to cope with severe anxiety and depression, but she was not alone.  It is reported that up to 20% of cancer survivors experience serious anxiety and depression.  As high as 40% deal with the fear of recurrence.  On top of that, there can be distress brought on by post-treatment side-effects, altered body image, not to mention social isolation and financial struggles. Everyone wants you to bounce back to your pre-cancer self, but it is not easy to do so.

Mollie Ungricht, a grandmother to eight grandchildren, was diagnosed with Squamous cell carcinoma in December of 2018.  Weekly treatments of radiation combined with chemotherapy started in January 2019 and ended at the end of May 2019.  She was told that the severe irritation and burning from the radiation would take two weeks to subside after the treatments concluded.  Although the irritation subsided, it was replaced with something unexpected.  She began to suffer debilitating pain in her Sacroiliac joints, as well as every bone in her body.  She was told that this resulted from the bone marrow regenerating after being destroyed by the radiation and eventually would go away.  However, weeks turned into months, and clouds of doubt that she would ever return to normal began to follow her everywhere.  She eventually was referred to a severe pain clinic that began treating her pain with steroid injections. However, she does get some days where there is light at the end of the tunnel, but they are minimal compared to the seemingly endless days of constant pain.  “Sometimes it seems like this is going to be a lifetime struggle, and I am never going to get back to normal,” she says

Experts predict that by the year 2040, there will be more than 26 million cancer survivors in America. Multiple studies suggest that these survivors can expect to spend large portions of their lives managing the disease’s effect on their physical and mental well-being.  Well-intentioned family and friends assume loved ones to bounce ‘back to normal.’ now that the treatments are over and many may be cancer-free.    They do not realize that the cancer survivor is struggling with the time and energy to process their experience.  Lucia Fanjul, a licensed master social worker at CancerCare, a national nonprofit organization that provides free professional support services to people affected by cancer, said, “For survivors, this is often a period of intense sadness, anger, instability and anxiety. The urgency of the diagnosis and active treatment has passed, but the emotional turmoil remains.”

Studies show that cancer survivors are more than twice as likely to have debilitating mental health problems and worse overall quality of life than people who never get the disease. Moreover, mental health problems are six times higher in survivors who have other chronic illnesses, such as heart disease or diabetes.

Doris Cardwell of Spearfish, South Dakota, struggles with an all-consuming worry: Will her three daughters develop breast cancer as she has.  Cardwell wrestles with guilt. “My daughters are in a high-risk category because of my health history,” she says. “At a very young age, they have already had to face life-altering decisions. I worry about them getting breast cancer, as well as my cancer coming back.”

After more than 10 years in remission, Cardwell says she does not think she will ever put cancer completely behind her.  She says. “Only someone who has experienced cancer understands how quickly life can change. You never again assume that everything will be fine.”

Cancer patients feel they have a new identity.  They are not themselves anymore.  They are their cancer. 

Baltimore resident Katie Petralia was diagnosed with anxiety and post-traumatic stress disorder (PTSD) after completing her treatment for stage 2 non-Hodgkin lymphoma three years ago at age 23. “My anxiety level skyrockets every time I meet new people who do not know my cancer story,” she says. “I am nervous about bringing it up because I do not know how people will react. It is like I am hiding some big secret.” Kate also has to deal with the fact that the cancer treatments may have affected her chance to bear children. “I had to start chemotherapy immediately because masses pushing on my throat made it hard to breathe. There was no time to look into fertility preservation,” she says. “Even though I am not at a point in my life where I am ready to start a family, it has been emotionally difficult to come to terms with what may or may not be possible for me in the future.”

Well-intentioned family and friends are not the only ones who assume all is well. After treatments, cancer survivors often find themselves thrust back into the care of primary care physicians who may not fully grasp cancer’s lingering effects on both the body and psyche. 

Dr. Thomas J. Smith, a medical oncologist and palliative care specialist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, understands these concerns.  He says primary care physicians are challenged to keep up with the latest findings on all types of diseases from heart disease, diabetes, hypertension, and, yes, cancer. “Ideally, a patient would take a survivorship care plan prepared by their oncologist or cancer center and hand that to their primary doctor to get the ball rolling on proper follow-up care.”  He also recommends asking the front desk to schedule a longer appointment, so a patient does not feel rushed.

Even though anxiety, depression, and PTSD are the most well-known mental health problems associated with cancer, doctors see an uptick in cancer survivors who feel demoralized and apathetic. “These are true clinical diagnoses,” Smith says. “You are tired of being tired. You are tired of feeling hopeless, sick, and helpless. However, you feel like there is nothing you can do about any of it, so why try.”

“You are always wondering: Will my cancer come back, what will that feel like, can I make it through more treatments, how will it affect my loved ones? And, of course, am I going to die sooner than I hoped?” Recently, Smith recognized that he and the cancer survivors he treats experience PTSD triggers almost daily. “It can become a constant struggle to have a few hours where you do not think about cancer,” he says.

Dealing with cancer is a life-altering experience. “A cancer survivor needs time to process what has happened to them and to understand how the experience changed them,” Fanjul says. A mental health counselor can give survivors the tools to work through emotions. Antidepressants or anti-anxiety medications can help if needed.

Help comes in different forms.  Medications or even online support groups can be a lifeline.  Structured exercises such as walking, yoga, or tai chi can also function as lifelines.  Service animals can also serve an important role.  Regardless of the lifeline, cancer survivors must be aware and respond actively to the real mental health issues they may face after treatment.

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