Thursday, June 12, 2014

Taking A Moment For Meso

Mesothelioma that is. As you know, melanoma is my cancer and the one I am most familiar with. However, I was contacted by Cameron Von St. James, husband of Heather, to join their summer campaign to raise awareness of meso. Heather is an eight year survivor, and a walking miracle. How can I pass up on the opportunity to share the story of the “Self proclaimed ‘Poster child for hope after mesothelioma’ for those suffering from asbestos disease”?

How can I pass up the opportunity to educate about a rare cancer and save some lives? Three thousand people, in the USA alone, are diagnosed each year. That means thousands are walking around with symptoms and have yet to be diagnosed. Thousands have yet to develop symptoms, but they will.

We’re all in this together. Cancerworld is a big place and some roads are better known than others. Mesothelioma Road needs some exposure and those who walk that road need those of us on other paths to do more than wave at them. So sit back, keep reading, learn something, take notes in case you ever find yourself with the symptoms, and say “hi” to Heather, for she will be our face for this disease.

Here’s Heather’s blog: This is her story, in a nutshell and in the words of her husband, “a rare mesothelioma cancer survivor who beat the odds 8 years ago when she was given only 15 months to live. Heather was diagnosed just three months after giving birth to our daughter Lily. After a life saving surgery that included the removal of her left lung, Heather is thriving more than ever!”

People with ANY kind of cancer, particularly rarer cancers, need to know there is hope! We all need stories like Heather’s! We need to know there are not only survivors, but there are thrivers! We need to know there are resources available and specialists in our cancer.

And we need to know what to look for. I’ve learned, thanks to Cameron’s invitation, that mesothelioma is difficult to diagnose. It’s often advanced by the time doctors figure out what their patient has…sounds like melanoma to me. That’s another reason I said I’d write this post…the more I learned, the more I saw my disease mirrored in theirs. People need to know that…

Mesothelioma is difficult to diagnose because the early signs and symptoms of the disease can be subtle or mistaken. Symptoms are all too frequently ignored or dismissed by people who are inclined to attribute them to common every day ailments. Sometimes patients live with symptoms for up to 6 months before being diagnosed but usually the symptoms are present for two to three months prior to a mesothelioma diagnosis.

About 60% of patients diagnosed with pleural mesothelioma experience lower back pain or side chest pain, and there are frequent reports of shortness of breath. Lower numbers of people may experience difficulty swallowing, or have a persistent cough, fever, weight loss or fatigue. Additional symptoms that some patients experience are muscle weakness, loss of sensory capability, coughing up blood, facial and arm swelling, and hoarseness.

Peritoneal mesothelioma originates in the abdomen and as a result, symptoms often include abdominal pain, weight loss, nausea, and vomiting. Fluid buildup may occur in the abdomen as well as a result of the cancer.”

People need to know that while exposure to asbestos is considered the primary risk factor, “One of the most unique facts about mesothelioma is that the disease is characterized by a long latency period that is very often associated with the disease. The latency period is the amount of time that elapses from the first point of asbestos exposure to the point where symptoms begin to appear so that a diagnosis can be made. In some mesothelioma cases the latency period is reported to be 10 years but the average latency for the majority of cases is between 35 and 40 years. As a result, the cancer often progresses to later stages before a diagnosis is made. When diagnosed in the later stages, mesothelioma treatment options become more limited and are less effective.”

As a melanoma survivor whose sunburns caught up with me decades later, this too, resonates with me. And just like melanoma has several risk factors people don’t know about, well, so does mesothelioma...

“There are several risk factors that increase the likelihood that a person will develop mesothelioma. The primary risk factor is asbestos exposure. Exposure to this very harmful substance can significantly enhance the chances of contracting the disease. While smoking does not have a direct causal relationship with mesothelioma, it is a significant compounding factor that increases the likelihood of developing the disease. Other less common secondary factors include exposure to radiation, zeolite, simian virus 40 (SV40), and erionite.”

For more info about those risk factors please read

And if you have this disease, you’ll need a specialist. There are clinical trials. There’s info on where to find all of that, and more, at There are other blogs and you can connect with the mesothelioma community. I cannot begin to stress the importance of connecting with a community of fellow fighters.

Who knew that a young woman of child-bearing age, whose Dad had worked with asbestos…and that’s how she was exposed, could get mesothelioma and the pronouncement she’d live 15 months? Heather didn’t know. So many don’t know. We all need to know.

Thankfully, eight years later, she’s here to tell us.

Let those with ears, listen.


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