You have a cancer called “mesothelioma.“ Those were the words that changed my life on November 21, 2005. Up until that moment, I had never really heard of it, I couldn’t really pronounce it, and had no idea what I was up against. The look on my husband’s and doctor’s face said it all…it was bad.
What is Malignant Mesothelioma?
It’s a rare type of cancer that occurs in the thin layer of cells lining the body’s internal organs known as the mesothelium. There are 3 main types: pleural, which affects the lining of the lungs; peritoneal, which affects the lining of the abdomen; and pericardial, the most rare, which affects the lining of the heart. Pleural mesothelioma is the most common, but even then, the cancer is incredibly rare with only 3,000 cases diagnosed each year.
Malignant mesothelioma is almost always caused by asbestos exposure. But wait, isn’t asbestos banned? Unfortunately no, not in the United States. Most mesothelioma patients are people who worked with asbestos in one way or another—in the plumbing and heating trades, construction, or auto manufacturing. Many veterans are also at risk because of the use of asbestos in the holds of ships and other military applications.
Asbestos was used widely from the early 1900’s through the early 1980’s in everything from insulation to fake snow on the set of The Wizard of Oz. The fibers are incredibly small and when broken up, or “friable,” they become airborne and are inhaled or swallowed. Millions of fibers then get lodged in the lungs or abdomen, and through the years they cause cancer. The latency period between exposure and diagnosis can be anywhere from 10-50 years. That time gap coupled with the fact that many mesothelioma symptoms go misdiagnosed for years make diagnosing this cancer incredibly difficult.
So how did I, a 36 year old new mom, end up with a cancer caused by asbestos exposure when I myself never worked with it? I was exposed through my father’s work clothes. My dad was a construction worker when I was a kid, and when he started he worked mostly in demolition and drywall sanding and cleanup. Many of the buildings he helped tear apart were built with asbestos containing products. Much of the drywall joint compound he used and sanded, without the use of protective equipment, contained asbestos.
His work coat was covered in a whitish grey crust that was full of asbestos. I would wear this coat whenever I had outside chores to do because I didn’t want to get my own coat dirty. It was this innocent exposure that led to my diagnosis some 30 years later.
I’m not alone.
The average age of mesothelioma patients has gotten younger and younger. This is in part due to secondhand or environmental exposure. Many people were exposed through their homes or their schools when they were young. There is no safe level of exposure to asbestos.
The first thing is to educate yourself on where asbestos is. It is in many homes that were built before 1980. If you find asbestos in your home, do not attempt to remove it yourself. You need to hire an experienced abatement company to get rid of it. So before embarking on any home improvement projects, make sure no asbestos is present.
If you think you may have been exposed, tell your doctor and make a record of it. Since the latency period is so long, having the information documented could help down the road.
Mesothelioma treatment is no walk in the park. It usually consists of surgical resection of the lung, or lining of the lung, in the case of pleural. For patients with peritoneal, it can range from removal of tumors as well as the omentum, which is a fold of peritoneum connecting the stomach with other abdominal organs. Sometimes a part of the bowel is taken and one must have an ileostomy until their bowel heals.
Depending on the surgeon, many times a heated chemo bath is done to further help eradicate any cancer cells that may have been left after surgery. Patients also undergo chemotherapy, and in some cases radiation. It all depends on the severity of the disease and where it is located. Pericardial mesothelioma is very rare with only 1-2% of all mesothelioma cases and surgical options are slim.
Due to the rarity of mesothelioma, and the difficulty diagnosing it, many people don’t live beyond 18 months after diagnosis. Most don’t make it 5 years, and many have recurrences after the initial treatment. These were the odds I was up against when I read up on this cancer I was just diagnosed with.
My own doctor told me I had about 15 months to live if I didn’t do anything. It was then we opted for surgery. When my baby was just 6 months old, I flew across the country to a mesothelioma specialist who saved my life. I had my left lung and all the surrounding tissue removed , as well as half of my diaphragm, the lining of my heart and one of my ribs. I also had the heated chemo wash.
I followed up the surgery with 4 sessions of chemo and 30 sessions of radiation. All in all, it was almost one year from the onset of my symptoms to the last radiation treatment. One full year of every day spent fighting for my life from a completely preventable cancer.
11 Years and Counting!
I’m happy to say that as of February 2, 2017, I have reached 11 years survival since my surgery, and I remain with no evidence of disease. I still go to my specialist twice a year for check ups and will continue to do so for the rest of my life. It is just what you do when the c word enters your life.
I have spent much of the last 11 years educating myself about mesothelioma and the dangers of asbestos. I advocate for patients and raise awareness in hopes that in doing so people will understand the dangers of asbestos and that mesothelioma is more than a commercial on TV. It affects people from all walks of life, not just older men in their 70s and 80s. It affects new moms, college professors and school teachers.
Awareness is always the first step.