MESOTHELIOMA QUOTES

quotations about mesothelioma

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There is no correlation between the amount of asbestos someone is exposed to and the link to mesothelioma cancer, which makes it extremely dangerous. The asbestos fibers are extremely strong and rigid, so as they are inhaled or swallowed, they become deeply caught in different linings of organs such as the lung, abdomen, and heart. As scar tissue forms, cancer cells can start to grow, and mesothelioma can start developing.

EMILY WALSH

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I am very optimistic about the treatment for future patients with this disease. On the clinical research front, we and other centers are embarking on the evaluation of some of the novel biologic agents such as Alimta in addition to aggressive surgery and other local control modalities. It is likely that with ongoing refinements in surgical resection and radiation therapy combined with newer, apparently active chemotherapy agents, we will have a real and major impact on the survival of selected patients with this disease in the next few years.

ROY SMYTHE

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We, the mesothelioma community, need to educate people that asbestos is still around. It's still a legal product in the United States. We need to make people realize that while we use it a lot less, it's still out there.

ARTHUR FRANK

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Cancers can be caused by very low exposures. Theoretically, even a single fiber can cause cancer of the lung--or of the lining of the lung--but very few people exposed to low doses will develop cancer. There is more or less a linear relationship between the amount of asbestos that gets in to the body and the number of cases of cancer that occur in groups of people. The less asbestos that gets inhaled into the body, the fewer of the number of cancers occur per population, and vice-versa.

DAVID EGILMAN

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My family doctor called me just after 5 o'clock and 15 minutes later my wife, Pepper, and I were in his office. He said, "You have an incurable cancer called mesothelioma. We don't know what to do for it and you have six months to a year to live." I was being told by doctors that they either couldn't do anything for me or they they could give me a couple of extra months, at best.

JIM MCHUTCHISON

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As early as the 1890s, the link between asbestos inhalation and lung-related disease was established. What makes mesothelioma a particularly tragic disease is the fact that it's preventable, because the cause is known.

ARTHUR FRANK

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Mesothelioma is a disease that could have been prevented. Many companies knew that exposure to asbestos was dangerous. Despite this knowledge, they hid the truth about the dangers of asbestos and continued to use asbestos in their products. If you or someone you love has been diagnosed with mesothelioma, it is likely that they would not be suffering from this terrible disease if the companies chose alternatives other than asbestos. The simple truth is that alternatives were available in most instances, but they were fractionally more expensive.

HARVEY I. PASS & AMY METULA

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If you are an individual, fight your mesothelioma like an individual. You are not a statistic.

JIM MCHUTCHISON

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Malignant pleural mesothelioma, I would learn, does not wait. Not widely recognized until the 1960s, it remains a killer today. This asbestos-related carcinoma grows with weedlike speed and strength through and around the mesothelial tissues of the chest cavity. Ten years ago surgeons facing this disease thrashed about searching for an effective protocol that would halt the spread of this cancer. Even now, most are still reluctant even to attempt an operation.

MARGIE LEVINE

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As far as the difference between lung cancer and meso, we really were not clued in to the differences. Cancer was cancer. We were focused on staying alive.

BARBARA MCQUEEN

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For two weeks, I thought I had stage 4 pancreatic cancer. It was terrible. I had some uncomfortable conversations with my husband. It was just awful.... When they finally told me it was mesothelioma, I actually felt relieved. That was better than the diagnosis we originally thought I had. The whole thing was just a giant roller coaster of emotions.

DARLENE MICCICHE

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Some people who live after being diagnosed with Mesothelioma may not have had Mesothelioma. Many physicians feel that if someone lives for more than 5 or 10 years after being diagnosed with Mesothelioma then there was an error in diagnosis. This is an example of how strongly people feel about the fact that Mesothelioma has a terrible outcome, almost universally. There are some cases where Mesothelioma has probably been cured or gone away on its own. There are case reports of this happening, but it is very uncommon if it has occurred at all. It is one of the few diseases that AIDS is better than.

DAVID EGILMAN

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Although there have been great advances in diagnostic histopathology in the last three decades, there is still no single test that can reliably identify malignant mesothelial cells. The correct classification of pleural malignancy is important to ensure that appropriate treatment is given and, in the case of patients with occupational asbestos exposure, to support claims for industrial compensation.

KEN O'BYRNE & VALERIE RUSCH

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Complete microscopic resection of mesothelioma is so rare that it merited a case report within the last year. That may even have been the first documented case of cure.

TOMMASO CLAUDIO MINEO

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In July 1982 the well-known scientist and writer Stephen Jay Gould was diagnosed with abdominal mesothelioma and faced a situation much like mine. A computer search yielded the stomach-punching conclusion that his disease was incurable and that, statistically, he could expect a "median mortality" of only eight months after diagnosis. In other words, he would likely die within eight months. But Gould's temperament and professional training told him there was another way to interpret the data--that this so-called "median" rate also meant that half the people diagnosed with mesothelioma would live longer--some, perhaps, much longer. In classic "is the glass half empty or half full" style, Gould read on, looking behind the hard numbers for statistical variation and distribution: what circumstances might allow mesothelioma patients like himself to survive longer, and for how much longer might that be? What Gould discovered was that he possessed every one of the characteristics the studies indicated should confer probability of longer life--relative youth, early diagnosis, first-rate treatment, a confident and optimistic attitude. And while Gould's analysis of the statistical literature promised nothing, it gave him the precious gifts of hope and time to think, plan, and fight. About two decades later, Stephen Jay Gould is very much, and gratefully alive.

MARGIE LEVINE

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Orphan diseases like mesothelioma don't get the recognition they should, and when you have an orphan disease that is a political, economic, and health policy football, the situation becomes worse. Why? Because the patient gets lost in a confusing blame-game vortex, fortified by the lame arguments we have been hearing for the last 10 to 15 years: "It's an orphan disease that afflicts only 3000 per year; why put a lot of research dollars into it?" "It is caused by an environmental fiber that we have precautions against now, so once we get over this wave of cases we won't have to worry about it anymore." "Companies have gone bankrupt over this and can't afford to assume the health care burden of workers who contracted the disease through their employ." "It's a tort issue; the lawyers are making all the money through huge settlements, so we need to reform the system!"

HARVEY I. PASS & AMY METULA

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Told I was going to die, I never stopped fighting. I never stopped persisting and striving to free myself of this disease and to live every available moment with gusto--whether those moments could be measured by the handful or across a lifetime. Today, two exploratory surgeries, one major operation, five impatient rounds of chemotherapy, twenty-five radiation sessions, and forty-one healing steps later, I am the world's longest-living survivor of mesothelioma lung cancer. As word of my success with the program that helped bring me back from the precipice spread among Boston-area oncologists, surgeons, patient communities, and then worldwide, I began to receive phone calls from the newly diagnosed. How did you do it? they would ask, and I would tell them.

MARGIE LEVINE

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I may have been diagnosed with mesothelioma, but I am going to be a survivor of this disease. You can bet on that. Attitude is everything. It's what gets you to the next step as a survivor.

JOANNE D.

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Mesothelioma is not like lung cancer, where there is one dominant mass; mesothelioma touches many surfaces, has different thicknesses, and makes it difficult to see whether lymph nodes are involved on the radiographic studies. Clinical staging based on the x-rays and the symptoms in mesothelioma is incredibly difficult. It is really tough for even the experts to say that you have a Stage I or Stage II mesothelioma.

HARVEY I. PASS & AMY METULA

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The very long latency period between exposure and effect and the short median survival time after mesothelioma diagnosis pose methodological issues for conventional case-control and cohort studies of communities. In many modern communities, few people reside in the same location 40 or more years later, so that the studies of survivor populations may greatly underestimate the risk from past exposures. Short survival periods allow a brief window to question the patient about exposures, and next-of-kin may be ignorant of exposures many years ago.

EDWARD A. EMMETT & BRIGID CAKOUROS

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