Mesothelioma can affect the body of those diagnosed with the asbestos-related cancer in different ways — whether it’s from the symptoms of the disease or treatment.
Chemotherapy is the most common treatment and may cause hair loss or thinning. Losing a significant amount of weight during treatment is not uncommon. Steroid use, another regular part of treatment, can lead to other symptoms such as weight gain and swelling.
The condition also causes symptoms such as pain and fatigue, which may affect walking speed, gait or balance. Some patients may need a walker or wheelchair to help them get around. Others may need to carry an oxygen tank with them.
Many mesothelioma patients may acknowledge their hair will eventually grow back, surgical scars will fade, and the steroid-induced swelling will go away once treatment is over.
All of these changes can affect how mesothelioma patients see themselves, as well as how family members, friends and other loved ones perceive them.
There’s a natural sense of discomfort when clothes no longer fit mesothelioma patients because of weight loss or weight gain, but looking in the mirror each day and seeing a catheter poking out of a port on their bodies is a difficult and unnatural sight to process.
It’s About Perception
People with mesothelioma, who perceive themselves as thin, pale and tired, may internalize those feelings.
Others may also treat you differently because you look sick to them, regardless of how you actually feel. When we look unlike ourselves, it tends to affect our identity.
Our identity is comprised of many factors: How we look, our career, personality, skills and talents, and the roles we play as parents, partners and sibling, among others.
Why is appearance considered the main part of identity when identity is multifactorial? It’s because our appearance is usually the aspect of our identity that people first react to — whether they know us or not.
Some mesothelioma patients may say looks aren’t important and that they are still the same on the inside, but those statements may not ring true when friends tell them they barely recognize them since they began chemotherapy.
It is easy to wonder if you are the same person on the inside when the outside looks different.
Be Aware of Assumptions
When you have transitioned from a healthy looking person, to looking like a cancer patient, one way to minimize the impact on your identity is to be aware of assumptions — yours and those of others.
One common assumption is that appearing sick equals feeling sick. But that’s simply not true. Many bald, thin and pale cancer patients feel good plenty of times. They are able to work, socialize and perform chores because it makes them feel normal.
However, sometimes well-meaning loved ones assume the mesothelioma patient is sick and should not be doing these things based on their appearance. It’s understandable to see how this could lead to misunderstandings if loved ones persuade the patient to stop doing things a “healthy person” does, and start resting more.
Looking Sick Doesn’t Mean You Feel Sick
Cancer patients need to let loved ones know that even though they may look sick, it may not always be the case.
Not all mesothelioma patients appear or act sick. Many mesothelioma treatments don’t make you lose your hair or drastically affect your weight. Some of the treatments or effects of the disease are less apparent such as pain, fatigue and shortness of breath.
Another common assumption is that people who look sick feel sick. That can lead to conflict or misunderstandings between cancer patients and caregivers. Many cancer patients have said their loved ones don’t understand why they can’t do the things they used to do since their diagnosis.
Some mesothelioma patients even report loved ones saying: “But you don’t look that sick.”
Both of these scenarios highlight the false assumptions people draw based on appearance. If someone you love has cancer, it’s better to ask how he or she is feeling on a given day, than assume their appearance equals their state of being.
Boosting Body Image
The MD Anderson Cancer Center in Houston, Texas, launched a Body Image Therapy Program in 2008 to address the unique body image issues that cancer patients face. The program is the first of its kind in the nation to counsel cancer patients on body image.
The program was started by Michelle Cororve Fingeret, Ph.D., associate professor in the department of behavioral science at MD Anderson. Fingeret has conducted clinical research on body image and also counsels cancer patients through the Body Image Therapy Program.
Fingeret says, “Many patients are embarrassed or uncomfortable talking about body image. When working with them, I validate their concerns about their body. I tell them it’s OK to worry, and it’s OK to cry; it’s natural to feel that way.”
Knowing it is normal to feel negatively about your body during and after cancer can offer some peace of mind. Some patients think they’re alone in their negative self-talk. When they find out it is completely normal, they can lighten up and be less critical.
Questions and Answers from the August 2015 Online Support Group
Patients and caregivers asked a number of questions during the recent online support group. Here, we include answers to some of them.
Q: Is asbestosis a form of cancer?
A: No, asbestosis is not cancer. Asbestosis is a progressive pulmonary disease that can develop if inhaled asbestos fibers damage lung tissue. Asbestos fibers are sharp and can become stuck in lung tissue, leading to scarring and hardening. There is no cure for asbestosis, but there are medications and therapies to relieve symptoms.
Asbestosis is not a precursor to mesothelioma or lung cancer, it is a separate disease entirely. However, people with asbestosis sustained enough asbestos exposure to be at risk for asbestos-caused cancers. Asbestosis patients have an 8 to 10 times higher risk of lung cancer, and around 15 percent later develop mesothelioma. The majority of people with asbestosis don’t go on to develop cancer.
Q: What is cryotherapy?
A: Cryotherapy is a cancer treatment that kills cancer cells by exposing tumors to extremely cold temperatures. A radiologist typically performs the procedure, which only requires small incisions and lasts around 30 minutes. Cryotherapy can be performed before mesothelioma surgery, during surgery or after as a maintenance therapy to control recurring tumors.
The Mayo Clinic in Rochester, Minnesota, is about to begin a clinical trial of cryotherapy with pleural mesothelioma patients. Participants will undergo cryotherapy before standard surgery and may receive other therapies such as radiation therapy after surgery. The trial isn’t recruiting participants just yet, but is expected to open soon.