It doesn’t seem like much when it starts—a stubborn cough, an achy chest. You pant a little when you go up a flight of stairs. “Gotta lose that weight,” you say to yourself.
Once in a while, you get a sharp pain in your ribs. “Must’ve strained something.”
It seems you are clearing your throat more often than you used to, and your voice is a little raspy, but, after all, you were cleaning the basement last week, right? Maybe, you think, you are developing allergies.
Still, your body feels weak, so you make an appointment with your doctor.
There is a breath test; your lung capacity is low. There is a referral for a CT scan; an appointment is made.
There is a growing knot in your stomach, as you wait and wonder what the tests will find. You go for the scan, and you wonder why the tech is so nice to you. Your stomach tightens.
You wait for the results; your doctor says he’ll call you. One day, two days, four days crawl by.
You leave a message at the doctor’s office, sure that he must have overlooked calling you, since the test results probably came back fine. But when his receptionist calls, you find that the results just aren’t in yet.
Why is this taking so long? Six days, eight days…it can’t possibly take this long to figure out what those pictures mean!
Finally, your doctor calls, and asks you to come into the office.
He sits you down in the examination room, and asks how you’re feeling. “Fine,” you say, “fine.”
“We found something,” he tells you, his hand on your shoulder.
There is excess fluid surrounding your lungs. Their lining has thickened in places. He calls them tumors.
Your heart stops and your mind races. Tumor, cancer, how did this happen, what about the mortgage, tumors, children, can I still work, cancer, insurance, will this thing kill me, how will the bills get paid, how bad will it get, tumors…
You hardly hear him tell you the name for what he suspects this condition might be—pleural mesothelioma. Your mind stops in its tracks.
What does that mean? They are tumors it’s cancer I’ll die…
Mesothelioma Suspected mesothelioma is frightening. Nagging, unrelated symptoms, with the assistance of test results, solidify into a medical pathology that the patient is informed is progressive, painful and fatal. The word “mesothelioma” itself is frightening.
Use of the more familiar term “asbestosis” places the condition in the context of understandable cause and effect, although mesothelioma is significantly more serious than asbestosis. TV and radio commercials targeted at construction workers inform that, as serious as the condition is, there is positive action to be taken. Somehow, it is comforting to know that there is legal recourse when faced with life-threatening illness.
The family is deeply affected by the diagnosis. Spouses or partners can be shocked into emotional paralysis by the thought of losing the patient’s presence in their lives and, if they were living with the patient at the time of exposure, may be concerned about their own, indirect exposure. Children, if old enough to understand what the mesothelioma diagnosis could mean, may become withdrawn and uncommunicative, or suddenly cling to one or both parents where they had shown independence before.
Friends often do not know how to show their concern. They may become angry, vilifying the doctor, cursing the cause of the condition or the patient’s employer at the time of exposure. Co-workers, if the disease is work-related, may fear for themselves, knowing that the shared work environment means they could be at risk as well.
For the patient, material concerns rush in first, questions about confirming the suspicions, the disease’s progression, resulting limitations, discomfort, and burdening loved ones. Financial worries rise. Will my insurance cover this? How much will it cost? Will I qualify for disability or other assistance? Should I consult a mesothelioma attorney? Physical health and financial stability are immediately compromised, in perception if not in fact.
CT Scan More immediate, specific questions surface. What is a CT scan? What can they tell by taking a fluid sample? If a biopsy is necessary, will they cut me open? What kind of medication will be prescribed?
Strange as it may seem, the material issues are small. Conscious or unconscious, deeper issues begin to emerge. Relationships begin to assume more significant proportions. Unrealized goals and dreams become haunting and life priorities are questioned and adjusted. Small disagreements that may have passed unnoticed can become magnified, and the patient and family may feel that they are on unsteady ground together.
Confirming a mesothelioma diagnosis is arduous. Testing usually follows a progression from non-invasive methods, such as x-rays, CT scans or MRIs, to more invasive, possibly culminating in a surgical biopsy. Testing, interpreting results, and deciding the next steps to reach a conclusion often take months.
At this point, anxiety is an ever-present companion.
Mesothelioma Prognosis When a confirmed diagnosis is made, it is almost a relief. While the prognosis may not be encouraging, the patient and family now possess hard facts, and can focus on care, treatment options, and finances. Coping with a known condition, albeit serious, offers a comfort that can ease the fears of uncertainty.
A confirmed mesothelioma diagnosis, however, does not remove the causes of fear and anxiety; it provides a clear target for them. Just as there is treatment for mesothelioma, there is treatment for the accompanying fear.
Information is key.
Speaking candidly with the doctor and asking questions can provide an overview of what is actually happening physically and what can be expected at time goes on. Obtaining copies of the test results and coming to an understanding of the terms used in them will allow a personal understanding of the condition and aid clear communication with medical professionals.
Mesothelioma is not simply a physical condition affecting the patient. It is a changed way of life with emotional consequences for everyone closely associated with the patient.