What to Avoid Saying to Someone with Mesothelioma

When you are diagnosed with cancer, people often think you’re going to die, especially with an aggressive disease such as mesothelioma.

And if you outlive their expectations, you must not be as sick as you led on.

As time goes by, people tend to forget about your health issues, especially if the reminders aren’t apparent.

You stop seeing the looks, hearing the concerned questions or receiving the special treatment.

As a seven-year survivor, it’s interesting looking back on how conversations about my cancer have changed among friends and family.

It’s an important lesson to anyone who may interact with a cancer survivor this holiday season, whether they’re newly diagnosed or several years into survival.

Knowing what to say and what to avoid saying can strengthen relationships and get positive results out of these interactions.

You Are Never Truly ‘Cured’

The longer you are around, the more people seem to forget something is wrong with you. It’s out of sight, out of mind.

I don’t necessarily have a problem with that. I don’t want to be treated differently because I have cancer.

But you’ll also hear comments like, “I thought you were cured” or “You don’t look sick.” People sometimes wonder why I still go to Boston. They’re surprised to find out I’m still having treatment seven years later.

There is no cure for mesothelioma. I have beaten the odds in my survival, but I’m aware the cancer can come back fast and aggressive at any moment.

I feel no one is truly cured of cancer. You always need to be aware that either the same cancer or a different cancer can come back, whether it’s been seven years or 50 years.

Another thing people should avoid is to not take a cancer survivor’s word as truth. Just because I outlived the expectations of my doctors doesn’t mean I was lying about the state of my condition.

I think this may happen more often with a rare cancer such as mesothelioma because most people don’t know much about it.

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How Did This Happen?

I try my best to not get caught up in the past. I don’t see the point of thinking about what-if scenarios.

What’s done is done.

I realize that mesothelioma is unlike many cancers because the primary cause is well known: Exposure to asbestos.

This prompts others to wonder how someone like me — a registered nurse of 43 years — was diagnosed with a cancer commonly associated with Navy veterans and construction workers.

I don’t fit the typical patient profile, yet here we are. I haven’t dwelled on it, so I don’t expect others to.

Asking how or why this happened to me won’t change anything. I prefer that people focus on my future rather than my past.

Don’t Judge Others’ Decisions

I live in a small town in Maine. It took three months for doctors here to finally get to the bottom of my condition.

Biopsy samples were sent to Massachusetts General Hospital in Boston. My diagnosis was then confirmed at Brigham and Women’s Hospital, where I underwent aggressive surgery to remove as much cancerous growth from my chest as possible.

I continue to visit Boston every three weeks, receiving immunotherapy infusions at Dana-Farber Cancer Institute.

Sometimes people here wonder why I make the four-hour, round-trip drive to Boston rather than go to our local hospital or the cancer center in Portland, Maine, less than an hour away.

The answer is simple: I feel more comfortable in Boston under the care of mesothelioma specialists.

When any of the hospitals in Maine get a pulmonary oncologist who trained at Brigham, Dana-Farber or any other mesothelioma specialty center, I’ll be fine staying closer to home.

Until then, I will continue my care where the research is being done.

It’s not that I think I’m too good for our local doctors. I just want to make the best decisions for my health. That means traveling to a specialty center with the latest technologies and a team of experts.

How Long Do You Have?

It’s perhaps the worst thing you could ask someone battling cancer.

While extremely personal and invasive, it’s also impossible to answer. Like everyone else, I don’t know how long I’ll be on this earth. I also don’t know if it will be the mesothelioma that kills me or something unrelated.

My surgeon, Dr. David Sugarbaker, was good about not estimating length of survival. When something came up, we would address it. My medical oncologist, Dr. David Jackman, is the same way.

I tell everyone that I take it one scan at a time. I get CT scans every three months. Until then, I have nothing new to share.

Asking more specific questions such as “How was your last scan?” or “When is your next scan?” is much better than “How long do you have?”

What to Do: Be Direct and Genuine

Knowing what to say to a cancer survivor is equally as important as what not to say.

The advice I would give others is to make sure you’re genuine in the questions you ask and the support you offer.

I’ve found that most of the people who have offered to help are serious about it. They aren’t just making the gesture because it’s the polite or right thing to do.

When I’ve had comments made to me about how much I do or give or take care of others, I always say the day will come where I may need them to return the favor.

I usually rely on my brothers to help me more than friends or acquaintances, but it’s nice to know people care.

And if you are curious about something, don’t be afraid to ask.

I recently had someone I work with at our local gym ask me why I go to Boston once a month and if something was wrong. I told her I have cancer, and she had no idea.

I’ve known her since I’ve had this disease, but I guess it never came up in conversation. She wasn’t rude for asking, and I wasn’t offended by her question.

Sometimes, the solution to what to say and not to say to someone with cancer is asking in a simple and direct way. The more we talk, the more we find out about each other and can offer support and guidance as we see fit.

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