What It’s Like to Have a Rare Cancer

A mesothelioma diagnosis threw her life into chaos and then gave her purpose

As a survivor of a rare cancer, I can tell you it becomes a part of who you are. Once you have cancer, you can never completely erase it.

Of course, you can have scan results of NED (no evidence of disease), but you will always remember the day that you heard the words, “You have cancer.” You’ll always remember your treatments and how awful they made you feel or how uncomfortable you were in the hospital after surgery.

Having cancer permanently and irrevocably reshapes your life.

What Happened?

When my doctor told me that I had cancer, nearly 11 years ago, I was floored. It felt like the world stopped spinning and I couldn’t wrap my head around what he was saying. Once he was able to communicate to me the severity of the situation — that I had mesothelioma, with a prognosis of only 15 months — I knew that I had to fight.

The fact that it’s a rare disease only made it harder.

Being diagnosed with cancer is scary enough, but being diagnosed with a cancer that much of the population hadn't even heard of? It was terrifying.

Mesothelioma isn’t a form of lung cancer, which is a common misconception. It’s a rare cancer caused by exposure to asbestos, with around 3,000 diagnosed cases in the U.S. each year. Ninety-one percent of those diagnosed are 55 or older.

Her Father’s Jacket

My exposure in the 1970s was secondhand, from running around outside in my father’s dust-covered jacket when he came home from work. My dad, a construction worker, often took down drywall that contained asbestos.

When I was diagnosed, the Internet was still a fledgling compared to what it is today, so I found that accurate information from reliable sources about mesothelioma was hard to come by. There was a lot of misinformation, and frankly, I didn’t know what to believe.

Being diagnosed with cancer is scary enough, but being diagnosed with a cancer that much of the population hadn’t even heard of? It was terrifying.

There wasn’t an easy way to find information or to get in touch with a specialist. Everything was done the hard way and every moment spent waiting felt like a lifetime. It was also difficult to get connected with others who had the disease. Today, thankfully, there are online communities for many rare illnesses.

I got lucky that my case was found when it was. So many others aren’t.

The latency period for mesothelioma is typically 30 to 40 years, which means that it can be that long between when someone is exposed to asbestos and when their symptoms begin to manifest in a noticeable way. Those symptoms include chest or lower back pain, fever, cough, shortness of breath, unintentional weight loss, hoarseness, difficulty swallowing and excessive sweating, according to the American Cancer Society. Some of the symptoms mimic those of other conditions like chronic obstructive pulmonary disease (COPD) or asthma.

How My Cancer Changed Me

If I hadn’t had mesothelioma, I probably wouldn’t have become an advocate for such an amazing cause. Through the years, I’ve met so many inspiring people and been a part of so many truly great events, it’s hard to imagine what my life would have been if I hadn’t been forced into this community.

Each year, around Mesothelioma Awareness Day in September, I take part in events and celebrations to help raise awareness for this worthy cause. With the Mesothelioma Cancer Alliance, I participated in a series of blog posts that interviewed several people whose lives had been affected by mesothelioma.

However, if I hadn’t been diagnosed with mesothelioma, I would still have my career. I used to work as a hairstylist in a salon in which I was part owner. I loved my job and I loved going to work every day. Once I had my life-saving surgery to remove my left lung, though, I just didn’t have the stamina to continue to work every day. Nor could I afford to be around the fumes of the chemicals that are used.

It can be easy to get lost in the sadness of sharing my story with the world. But when I receive a message from someone who saw my story and was able to get a loved one help for a mesothelioma diagnosis, every second is worth it.

What I’ve Learned

I just celebrated 10 years of being a survivor on Feb. 2, the anniversary of when I had my surgery and I’ve learned three things through the years:

Bad things happen to good people. This phrase captures the essence of the mesothelioma community, because almost no one who suffers from this disease was exposed through any fault of his or her own. Usually, they were exposed wrongfully by not being made aware of the inherent risks working with such a toxin.

What’s right isn’t always easy. Since becoming a survivor, I’ve been working tirelessly to raise awareness for mesothelioma and the continued asbestos use in the United States. It still blows my mind that we as a nation continue to expose countless people in buildings, homes and schools through asbestos that has gotten so old and friable that it becomes airborne. We also continue to allow its use in certain products.

Keep up the fight. Any cancer survivor will tell you that it wasn’t always easy. But I guarantee they’ll also tell you that fighting, no matter how hard, was worth it.

By Heather von St. James
Heather Von St. James is an active mesothelioma cancer patient advocate, wife, and mother. She works to protect future generations from asbestos exposure by pushing for legislation as well as helping those who have been diagnosed navigate the proper channels to find the help that they need. She lives in the St. Paul suburb of Roseville, Minn., with her husband Cameron, her daughter Lily, and a houseful of wonderful pets.

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