What to Avoid Saying to Someone with Mesothelioma – Asbestos.com

When you are diagnosed with cancer, people often think youre 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 arent apparent.

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

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

Its an important lesson to anyone who may interact with a cancer survivor this holiday season, whether theyre 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.

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

I dont necessarily have a problem with that. I dont want to be treated differently because I have cancer.

But youll also hear comments like, I thought you were cured or You dont look sick. People sometimes wonder why I still go to Boston. Theyre surprised to find out Im still having treatment seven years later.

There is no cure for mesothelioma. I have beaten the odds in my survival, but Im 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 its been seven years or 50 years.

Another thing people should avoid is to not take a cancer survivors word as truth. Just because I outlived the expectations of my doctors doesnt 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 dont know much about it.

Our monthly online support group helps patients and families cope with the effects of mesothelioma.

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

Whats 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 dont fit the typical patient profile, yet here we are. I havent dwelled on it, so I dont expect others to.

Asking how or why this happened to me wont change anything. I prefer that people focus on my future rather than my past.

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 Womens 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, Ill be fine staying closer to home.

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

Its not that I think Im 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.

Its perhaps the worst thing you could ask someone battling cancer.

While extremely personal and invasive, its also impossible to answer. Like everyone else, I dont know how long Ill be on this earth. I also dont 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?

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 youre genuine in the questions you ask and the support you offer.

Ive found that most of the people who have offered to help are serious about it. They arent just making the gesture because its the polite or right thing to do.

When Ive 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 its nice to know people care.

And if you are curious about something, dont 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.

Ive known her since Ive had this disease, but I guess it never came up in conversation. She wasnt rude for asking, and I wasnt 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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What to Avoid Saying to Someone with Mesothelioma - Asbestos.com

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