Newly Diagnosed #2

This section provides more information for those who have been newly diagnosed with carcinoid cancer or related neuroendocrine tumors. All the new information about your disease, tests, treatment options, new medical terms and insurance issues may seem overwhelming. We hope that the information presented here will be useful and help you deal better with the new world that you are entering. Remember to use the medical glossary often when faced with all the new medical terms that you will encounter.

• If you need the latest publications on carcinoid tumors, please search in PubMed. Type in " carcinoid neuroendocrine tumors" in the search window.

• Living With CarcinoidNotes from 3rd Annual Patient Meeting
  Birmingham, UK
  March 20, 2005

Dr. Martyn Caplin gave an in-depth presentation of all aspects of   carcinoid/NET tumors -- from diagnosis to treatment options. His   presentation was followed by a Q&A session.These notes may be very helpful for newly diagnosed patients who need a comprehensive, easily understandable overview of carcinoid and related neuroendocrine tumor issues.

• Introduction to NET: Definition, classification and diagnosisby Martin Caplin M.D., Neuroendocrine Tumour Unit, Royal Free Hospital, London, UK.

• (1/22/10) Pancreatic Neuroendocrine Tumors: Presentation, Management, and OutcomesNissen, Nicholas N.; Kim, Amanda S.; Yu, Run; Wolin, Edward M.; Friedman, Marc L.; Lo, Simon K.; Wachsman, Ashley M.; Colquhoun, Steven D.

The American Surgeon, Volume 75, Number 10, October 2009, pp. 1025-1029(5)

ABSTRACT: Pancreatic neuroendocrine tumors (pNETs) are an uncommon pancreatic neoplasm. We reviewed the presentation, management, and outcome of patients with pNETs treated at a single center by a multidisciplinary approach between 2004 and 2008. Over this time period, 154 patients with carcinoid and neuroendocrine tumors were treated, which included 46 patients (30% of total) with pNETs. The most common presentations included abdominal pain (20 of 46 [43%]), systemic symptoms such as hypoglycemia (15 of 46 [33%]), and incidental mass (7 of 46 [15%]). Fourteen patients had functional tumors. At the time of diagnosis, 22 patients (48%) presented without metastases and 24 (52%) had metastatic disease. Median follow up for the entire group was 42 months. All patients with nonmetastatic pNET underwent pancreatic resection with 95 per cent postoperative survival. Overall survival in this group at 3 years was 86 per cent and disease-free survival was 81 per cent. In patients presenting with metastatic pNET, multiple treatment modalities were used, including liver resection or ablation (n = 15), hepatic chemoembolization (n = 17), pancreatic resection (n = 12), and systemic treatments (n = 7). Three-year survival was 70 per cent. Pancreatic resection results in greater than 80 per cent 3-year survival in nonmetastatic pNET. In patients presenting with metastatic pNET, excellent survival rates are also achievable using a multidisciplinary multimodal approach.

PMID: 19886158 [Pubmed – as supplied by publisher]

• What Are Gastrointestinal Carcinoid Tumors?View in PDF, printer friendly format
  On the American Cancer Society website.

• What Is Lung Carcinoid Tumor?View in PDF, printer friendly format
  On the American Cancer Society website.

• MEN 1 (Information by NIH)The Endocrine and Metabolic Diseases Information Service is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.

Multiple endocrine neoplasia type 1 (MEN1) is an inherited disorder that affects the endocrine glands. It is sometimes called multiple endocrine adenomatosis or Wermer's syndrome, after one of the first doctors to recognize it. MEN1 is quite rare, occurring in about 3 to 20 persons out of 100,000. It affects both sexes equally and shows no geographical, racial, or ethnic preferences.

Comprehensive information can be found here.

• ChecklistA guide for newly diagnosed patients to help them organize their medical information

• Insurance IssuesHelpful guide to deal with insurance company issues

Medical Opinions

• Diagnosis and Treatment (Review), by Dr. Richard Warner

• When to Start and How to Treat Metastatic Carcinoid, by Dr. Richard Warner

• Does your doctor know how to diagnose and treat carcinoid/NETs?

      IF NOT, then share this information with your doctor
      DID YOU KNOW flyer -- click here for printable flyer

• EDUCATE YOUR DOCTOR, ENCOURAGE HIM/HER TO JOIN NANETS

        
   
NANETS (North American NeuroEndocrine Tumor Society) was established in September 2006. The purpose of this professional organization is to improve neuroendocrine tumor (NET) disease management through increased research and educational opportunities.

• Do you need financial, travel, housing and medication help? Make sure you visit our Living With Carcinoid/NET page.

The HealthWell Foundation® is a 501(c)(3) non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:

•  
  • Prescription drug coinsurance, copayments, and deductibles
  • Health insurance premiums
  • Other selected out-of-pocket health care costs

• Neuroendocrine Tumors: A comprehensive Guide to Diagnosis and Management (PDF file - Full text 288 pages)

For full text, peer review, consensus statements regarding diagnosis, treatment and monitoring from five different countries CLICK HERE.

Gregg Mamikunian; Aaron I. Vinik, MD, PhD, FCP, MACP; Thomas M. O’Dorisio, MD; Eugene A. Woltering, MD, FACS; Vay Liang W. (Bill) Go, MD; Published by Inter Science Institute 2012.

The GI Council of Inter Science Institute presents this comprehensive guide to diagnosis and management of neuroendocrine tumors to provide information and inspiration to all levels of clinicians, from novices to those professionally engaged in the field of neuroendocrine research, treatment, and analyses. This guidebook adds the new dimension of patient monitoring, not only through powerfully discriminating assays but through the recognition of clinical presentations and syndromes. This expertise is made possible by more than 150 years of cumulative experience of the advisory council.

You can print the full text 288 page PDF file from here.

Or if you prefer you can order the book or a CD from Inter Science Institute.

For book/CD requests write to requests@interscienceinstitute.com, attention Mia Tepper.

• Carcinoid-Dr On-Line Listserv

Does your doctor know how to diagnose and treat carcinoid/NETs?

Attention carcinoid/NET patients and caregivers: You are encouraged to tell the members of your medical team about the resource below. Feel free to share this information with other carcinoid and neuroendocrine tumor patients and their caregivers, as well as any healthcare professionals who you believe may be interested in participating in the Carcinoid-Dr listserv.

Carcinoid-Dr Listserv (For healthcare professionals only)
We are pleased to announce that the Association of Cancer Online Resources (ACOR) is now hosting a Listserv called Carcinoid-Dr.  This Listserv was activated in February 2006.

Members of this Listserv communicate with each other by sending e-mails to the Listserv, which then distributes the messages to all other members. Membership in this Listserv is limited to healthcare professionals.  Any healthcare professional who wishes to subscribe should send an e-mail to: carcinoid-dr-request@listserv.acor.org and describe their professional credentials and their reasons for joining, and provide their office address and phone number.

• Your Medical Record Rights"From time to time, several of us have complained about incorrect medical records. A friend just sent me a site that offers state by state guides to your rights under HIPAA and how to obtain and to amend your medical records."

Information provided by Deborah Kilmartin May 2007

A federal law called the HIPAA Privacy Rule gives you the right to see, get a copy of and amend (correct) your medical record by adding information to it. (HIPAA stands for the "Health Insurance Portability and Accountability Act.") Most states also have laws that give you rights in your medical record. These consumer guides are intended to help you understand your rights to your medical records under a combination of these laws.

Newly Diagnosed: The Basics

Carcinoid cancer and related neuroendocrine tumors (NETs) are small, slow growing tumors found mostly in the gastrointestinal system, but can be in other parts of the body such as the pancreas and the lung. Since most of these grow very slowly, compared to other cancers, it usually takes many years before they become sizable or cause symptoms.
Carcinoid tumors and other NETs usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. They can also occur in the pancreas, testes, ovaries, or lungs. Carcinoid tumors can produce an excess of hormonelike substances, such as serotonin, bradykinin, histamine, and prostaglandins. Excess levels of these substances can sometimes result in a diverse set of symptoms called carcinoid syndrome. Other NETs can produce other hormonal substances causing a variety of other syndromes.
When carcinoid tumors occur in the digestive tract or pancreas, the substances they produce are released into a blood vessel that flows directly to the liver (portal vein), where enzymes destroy them. Therefore, carcinoid tumors that originate in the digestive tract generally do not produce symptoms unless the tumors have spread to the liver. The hormones secreted by other NETs, particularly those in the pancreas, do not necessarily require spread to the liver to cause symptoms.
When carcinoid tumors have spread to the liver, the liver is unable to process the substances before they begin circulating throughout the body. Depending on which substances are being released by the tumors, the person will have the various symptoms of carcinoid syndrome, insulinoma syndrome, Zollinger Ellison syndrome, VIPoma syndrome, etc. Carcinoid tumors of the lungs, testes, and ovaries also cause symptoms without having spread, because the substances they produce bypass the liver and can sometimes circulate widely in the bloodstream.
A good place to start:
A Review of Carcinoid Cancer written by Dr. Richard Warner. This document is a good place to start your research. This is a detailed description of the entire spectrum of carcinoid cancer (tumor) its diagnosis, treatments and prognosis. THERE IS HOPE.
Spanish version of
"Review of Carcinoid Disease" by Richard R.P. Warner, MD
Un Análisis del Cáncer Carcinoide (version en espagñol)
What are neuroendocrine tumors?
AGA Forum > Neuroendocrine tumors: timely diagnosis and optimal intervention
For a moderated panel discussion by US carcinoid/NET specialists.
NOTE: for more detailed description of the various neuroendocrine tumors go to the next page and view Information on Carcinoid and Related Neuroendocrine Tumors (These articles are somewhat technical)
Novartis Oncology online program for people with carcinoid cancer.   This program, Carcinoid Link, provides enrollees with a series of customized e-mails and online support resources to educate them about metastatic carcinoid cancer.  Immediately upon enrollment, participants will also receive an article about the importance of biochemical marker monitoring, including excerpts from an in-depth interview with carcinoid specialist Dr. Larry Kvols. Please click on the link below to learn more about Carcinoid Link and how to sign up online.  Please feel free to forward this link to all of your members so they can benefit from the program as well.
Additional resources and downloadable materials
 
Carcinoid Heart Disease (patient story)
Double Trouble -- Patient’s rare cancer causes heart valve damageThis site (the "Service") is an online information and communications service provided by Mayo Foundation for Medical Education and Research.
Carcinoid Awareness Items: Zebra Pins, Car Magnets, Stuffed Zebra
For more information, to view and how to purchase Click Here
Many of our full text articles are saved in PDF format. To view and print Adobe PDF files Free Adobe Reader® software lets anyone view and print Adobe PDF files. To get free Adobe Reader CLICK HERE. Simply follow the screen prompts to download and install the product for your operating system.
For additional information about carcinoid cancer and other neuroendocrine tumors, please continue on to Newly Diagnosed 2.

Mesothelioma Life Span

Because there are many factors involved in determining a mesothelioma patient's life span, calculating an exact number can be difficult. Many people tend to think of life span as the expected survival time after a disease is diagnosed, but a patient's life span is measured from the moment the disease begins to form.
Mesothelioma patients are unique because of the disease's long latency period. The process of developing mesothelioma actually begins when someone first inhales or ingests asbestos fibers, often several decades before symptoms appear and the cancer is diagnosed. As a result, there is no way for doctors – or even patients – to determine the exact moment when mesothelioma tumors develop.
Most patients live up to a year after being diagnosed, but there are also mesothelioma survivors who lived for many years and are still leading productive lives.

Determining Life Span

There are a number of factors and mitigating circumstances that must be examined from patient to patient. Among them are: how far along the cancer is when it is detected; the cell type of the cancer; the patient's overall health; and past health, such as whether the patient was a smoker. In one way or another, all those variants affect the life span of someone battling this lethal ailment.

One important factor when assessing the life span of mesothelioma patients is its inordinately long latency period. Once asbestos fibers are in place to render a human body unhealthy, the mesothelioma they sometimes create can lie dormant for a period of 20 to 50 years. That is the typical time between asbestos exposure that begins the syndrome and its eventual diagnosis. That means that the true life span of a mesothelioma victim can be measured in decades; decades in which there are no symptoms, no pain or discomfort, and no detectable signs of the disease.
It is true that once mesothelioma is diagnosed, the medical prognosis is usually bleak. Pleural mesothelioma, if untreated, has an average life expectancy that ranges between four months and 18 months after symptoms appear. Peritoneal mesothelioma yields a five- to 13-month outlook, on average, if not treated.

Other Factors of Life Span

Another important factor that needs to be understood when assessing these statistics, and which has the tendency to skew them downward, is the relatively advanced age of the average mesothelioma patient. Most people diagnosed with mesothelioma are between 50 and 70 years old, with about 75 percent of patients in their mid-60s.
Therefore, the life expectancy for these individuals is understandably much shorter than for those who have other types of cancers and who may be much younger when their ailments are initially diagnosed.

Other important aspects that impact life span for victims

1. The form or location of the mesothelioma
2. The type of mesothelioma
3. Whether or not the cancer was detected early or late, i.e. the actual stage of the cancer
4. Whether it has metastasized, i.e. spread to other parts of the body
5. The presence or absence of other diseases or disorders, including abnormal blood values (red, white and platelet blood counts)
6. And the general health, lifestyle and functional status of the patient.

Treatments, Life Span and Mesothelioma Survivors

The kinds of treatments sought, applied and responded to can have an important impact on the life span of a mesothelioma patient. Standard medical approaches include surgery, chemotherapy, and radiation. In some studies, multimodality therapy, which is a combination of two or more of the three traditional treatments, produces significant survival extensions among patients with other favorable prognostic factors.
Between 5 and 10 percent of people with mesothelioma live at least five years after being diagnosed – far longer than the average statistics suggest. Some live much longer than that.

Survivor Stories

Paul Kraus is an Australian factory worker who was diagnosed with peritoneal mesothelioma in 1997, 35 years after occupational exposure to crocidolite asbestos. Kraus applied several different therapies and lifestyle changes, including shifting to a vegetarian diet, consuming nutritional supplements, and employing ozone therapy, which adds a specific form of oxygen to his blood with the intent of creating a cancer-killing oxygenated environment in his body. He still has mesothelioma but is pain-free and alive.
At the extreme limit of mesothelioma survival is the case of acclaimed American scientist Stephen J. Gould, who lived for almost twenty years after being diagnosed with the disease. He died of an unrelated condition.

Traditional and Experimental Therapies

There are many experimental therapies being investigated to slow the progress of mesothelioma. Some show promise in extending life spans, including photodynamic therapy (PDT), while newer, targeted drugs that have shown to be effective in killing cancer cells and gene therapy which attempts to replace or repair the defective genes in cancerous tumors.
Some non-traditional therapies that have been reported to extend the life expectancy of mesothelioma patients include meditation, yoga, acupuncture, and various holistic medicines and natural supplements.
Medical advancements continue to refine methods of detecting and managing the disease. As a result, the life span of its sufferers is gradually improving. As more research is done and more alternative treatment options continue to be explored, mesothelioma patients are being offered a wider range of choices that may ultimately modify their prognosis and significantly extend their life spans.

Mesothelioma Death Rate

Approximately 2,000 to 3,000 people are diagnosed with mesothelioma each year. Because the cancer is rare, many patients and their loved ones are not sure what the cancer is and what exactly a mesothelioma diagnosis entails. Questions about prognosis and the mesothelioma death rate often surface. 

Mesothelioma Mortality Rate

According to the Centers for Disease Control and Prevention (CDC), the malignant mesothelioma death rate in the United States from 1999 through 2005 totaled 18,068 people. The death rate increased from 2,482 deaths in 1999 to 2,704 in 2005, an increase of 222 deaths.
Men are diagnosed with mesothelioma more often than women, and males comprised 80.8 percent of mesothelioma deaths during this timeframe (a total of 14,591). White people comprised 95.1 percent of mesothelioma deaths, totaling 17,180.

Mesothelioma Guide

The most important factor to patients is usually their life expectancy. There are many options available to treat mesothelioma and extend your life span – take our site with you and get your free treatment guide.

Age influenced the mortality rate, as those 75 years old and older comprised the majority of the patients who passed away from mesothelioma (8,858 total deaths). Deaths in patients age 44 or younger totaled 311, or 1.7 percent.

During the time period addressed in the CDC’s study, the state mesothelioma death rate was greater than the national death rate of 13.8 per one million people per year. In six states the mesothelioma death rate was greater than 20 per one million people per year.
The mesothelioma death rate was highest in Maine at 27.5 percent (173 total), followed by Wyoming (22.2 percent, 50 deaths), West Virginia (21 percent, 182 deaths), Pennsylvania (20.8 percent, 1,210 deaths), New Jersey (20.2 percent, 814 deaths) and Washington (20.1 percent, 558 deaths).
Research and extensive studies are conducted daily to improve treatments for mesothelioma patients and search for a cure for the cancer. Through medical advances and developments in clinical trials, more options will continue to be available to combat mesothelioma and improve the mesothelioma death rate in the United States.

Number of U.S. Malignant Mesothelioma Deaths 1999 - 2005

Characteristic	1999	2000	2001	2002	2003	2004	2005	Total
Total	2482	2530	2505	2570	2621	2656	2704	18068
Age
25-34	4	6	7	10	7	11	6	51
35-44	33	34	39	40	38	42	34	260
45-54	138	131	144	106	148	121	118	906
55-64	388	372	361	380	386	400	438	2725
65-74	818	814	748	764	715	674	735	5268
75-84	888	918	942	975	1028	1097	1014	6862
85+	213	255	264	295	299	311	359	1996
Sex
Male	1993	2043	2019	2126	2122	2140	2148	14591
Female	489	487	486	444	499	516	556	3477
Race
White	2353	2398	2405	2447	2481	2535	2561	17180
Black	104	109	75	99	109	97	114	707
Other	25	23	25	24	31	24	29	181

Clinical Trial Information

Additional information about treatment options and ongoing research in clinical trials may be found through a complimentary comprehensive packet offered by Asbestos.com. Click here to receive your copy and learn more.

Mesothelioma Survival Rates

The survival rate of any disease refers to the percentage of patients that live for a specified period of time after diagnosis. It is a summary of life spans based on certain contributing factors, and it can give patients an idea of how long they may expect to live. Survival rates for mesothelioma cancer can vary because of age, gender, race and a number of other demographics.
Overall, survival rates for mesothelioma are low. Only about 40 percent of U.S. mesothelioma patients survive one year. By the second year, less than 20 percent of patients are still alive. And by year four, this drops below 10 percent.

Personalized Survival Rates

Find out survival rates for patients like you. Select your race, sex and age range below to view a personalized chart of survival rates. Keep in mind that these are only statistics. They can provide an estimate for expected lifespan, but it is impossible to exactly predict every individual case.

To maximize your survival rate, make sure you select a doctor specializing in your type and stage of mesothelioma. Our Doctor Match program was created to ensure all patients have access to the best treatment options for them. Visit our Doctor Match page to find out more.

Search Statistics on Mesothelioma Survival Rates

Between 1999 and 2005, slightly more than 18,000 Americans died of malignant mesothelioma, a rare disease that typically attacks the lining of the lung or the lining of the abdomen but can also develop in the lining of the heart or testicles. This works out to one person in the United States dying of mesothelioma every 3.4 hours. Most of these deaths were white men over the age of 45.
The National Institute for Occupational Safety and Health (NIOSH) studied what this meant in terms of years lost from life expectancy. It accounted for average ages and life expectancies of all mesothelioma patients who died between 1999 and 2004. By doing so, NIOSH determined that in this six-year period, mesothelioma deaths caused a total loss of more than 200,000 years of life expectancy.

Survival Rates by Age

Because of mesothelioma's decades-long latency period, individuals often don't feel symptoms until they are older, which increases the average age of patients. Individuals exposed to asbestos decades earlier usually don't develop symptoms of mesothelioma until they are at least in their 50s. Because of this, mesothelioma patients die at a median age of 74 years old, and more than three-fourths are 65 years or older.
Older patients have a much lower survival rate than younger ones. More than half of patients diagnosed before the age of 50 live one year, but less than one-third of patients 75 or older live the same amount of time. Rates are similar for long-term survival. Younger patients have a 20 percent chance of living a decade; older individuals only have a 1 percent chance.
This difference is largely because younger patients are eligible for more intensive treatments like surgery. Older individuals may not be candidates for these procedures because of overall poor health or a high risk of complications.

Survival Rates by Gender

Most asbestos exposure occursin the workplace and in industrial jobs typically held by men. That helps explain whyabout 81 percent of mesothelioma patients are men. The few women who do develop mesothelioma usually were exposed to asbestos by living near asbestos mines or factories or by living with someone who was directly exposed to asbestos.
Studies show women usually respond better to mesothelioma treatments, which may explain their higher survival rates. Women have better rates than men for both short-term survival and long-term survival. About 46 percent of women live one year, compared to only 37 percent of men. And 11 percent of women live a decade, while only 2 percent of men live as long.

Survival Rates by Race

Click to view image

Mesothelioma is almost exclusive to white individuals, who make up 95 percent of patients. This vast difference may be in large part because black and Hispanic individuals are less likely to be diagnosed with any type of cancer, mesothelioma included. Data from Surveillance, Epidemiology, and End Results (SEER) state that African Americans and Hispanics account for only 8 percent of all cancer diagnoses.
Race, however, does not affect initial survival times. About 40 percent of patients live one year, regardless of race. As time goes on, race becomes a more telling factor and white patients have slightly worse long-term survival rates. For white patients, 8 percent live five years, and half of those patients live another five years. Comparatively, 12 percent of black and Hispanic patients live five years, and 9 percent live 10 years.
Like the incidence rates for race, the survival rates are not fully understood. One 2010 report that studied mesothelioma rates from 1990 to 2004 concluded that although black and Hispanic patients have better long-term survivals, they are less likely to receive surgery. Whereas a quarter of white patients received surgery during this time, only 14 percent of black patients underwent a surgical procedure.

Survival Rate by State and Region

Mesothelioma predominantly affects groups living in more industrial states or those with naturally occurring asbestos deposits. While survival rates by state are not significant, death rates can be used to describe the total number of deaths in each state. This figure is usually expressed in deaths per million, meaning the number of deaths is for every million residents of the state. The basic formula is this:
Death Rate (in deaths per million) = (Mesothelioma Deaths / Total Population) × 1,000,000
For example, if the total number of residents in a state is 2 million and a total of 10 people died of mesothelioma, the death rate is 5 deaths per million. This formula provides a way of accounting for vast population differences. A state may have a high number of deaths but a low death rate. This can happen in more populous states.
Based on data from 1999 to 2005, Maine has the highest death rate of 27.5 deaths per million people. Only five other states have a comparable death rate of more than 20 deaths per million people. These states and their death rates are:

• Wyoming (22.2 deaths per million).
• West Virginia (21.0 deaths per million).
• Pennsylvania (20.8 deaths per million).
• New Jersey (20.2 deaths per million).
• and Washington (20.1 deaths per million).

Survival Rates by Site of Mesothelioma

Data from the National Cancer Institute (NCI) show that peritoneal mesothelioma patients have overall higher short- and long-term survival rates than pleural mesothelioma patients. Collected between 1988 and 2001, they show one-year survival rates as comparable: peritoneal mesothelioma at 42 percent, pleural mesothelioma at 38 percent. The survival gap becomes larger over the next few years. While more than 25 percent of peritoneal mesothelioma patients are alive at three years, only 11 percent of pleural mesothelioma patients live this long.
The data from NCI do not include other types of mesothelioma because they are so rare, but these rare types have been studied separately. A 2009 study plotted the survival rates for pericardial mesothelioma. The study found similarly low survival rates, with about 40 percent of patients surviving one year. Testicular mesothelioma has the best survival rates. Nearly half of all testicular mesothelioma patients live two years or longer.

The four types of mesothelioma:

Pleural mesothelioma

- is the most common type of mesothelioma. It develops in the lining of the lungs and makes up about 75 percent of mesothelioma diagnoses. It is also has lower survival rates than peritoneal mesothelioma.

Peritoneal mesothelioma

- develops in the lining of the abdomen, makes up nearly 25 percent of the remaining mesothelioma diagnoses.

Pericardial mesothelioma

- develops in the lining of the heart sac, accounts for less than 2 percent of cases.

Testicular mesothelioma

- grows in the lining of a testicle, accounts for less than 2 percent of cases.

Survival Rates by Stage of Mesothelioma

The stage at which mesothelioma is diagnosed can be a good predictor of overall survival rates. This is only for patients with pleural mesothelioma, which is the only form of the cancer that has a staging system. If patients have earlier stages of mesothelioma, the cancer has not substantially spread beyond the lining of the lungs. This means patients have more treatment options such as surgery which can improve survival rates. Normally, mesothelioma is not diagnosed until it reaches Stage III or Stage IV, the last stages of development. This can include a larger tumor or cancer growth throughout the body. Later stages of mesothelioma are more difficult to treat effectively, so these patients have worse survival rates.
A 1996 study observed survival rates for 131 pleural mesothelioma patients. It found that at one year, more than 90 percent of patients with Stage I cancer were alive, but only about one-third of patients with Stage 4 mesothelioma survived as long. This trend continued into longer-term survival. At three years, more than 40 percent of Stage I patients were still alive, compared to less than 5 percent of Stage IV patients.

Survival Rates by Tumor Histology

The histology, or cellular makeup, of a mesothelioma tumor also provides an accurate predictor for survival rate. Epithelial tumors are made up of more consistent and uniform cell patterns, whereas non-epithelial tumors have messy and random cellular patterns. This is an important distinction because the straightforward patterns of epithelioid mesothelioma respond better to treatment. For that reason, patients with epithelioid mesothelioma live longer.
The 1996 study of 131 pleural mesothelioma patients also grouped individuals by epithelial or non-epithelial tumors. About a quarter of patients with non-epithelial tumors lived for one year, compared to more than 60 percent of those with epithelial tumors. Every patient in the study with non-epithelioid mesothelioma died within three years of diagnosis. Comparatively, a small amount of patients with epithelioid mesothelioma reached four or five years.

Extending Survival Time

Learn more about your expected life span and what you can do to live longer. Visit a mesothelioma specialist for a health evaluation and a second opinion about your treatment options. To find the specialist nearest you, use the Mesothelioma Center’s free Doctor Match Program.

Mesothelioma Life Expectancy

Mesothelioma life expectancy is the projected number of months or years a mesothelioma patient will live following a diagnosis. The average life expectancy is about one year for mesothelioma, but each patient has a unique set of life expectancy factors that could help them surpass this average. Factors like overall health, age, stage at diagnosis and the unique type of mesothelioma a patient has will play a role in their expected life span.
Thankfully, research scientists and doctors have been working to improve the life expectancy for mesothelioma patients for decades. And they've done just that: survival rates for mesothelioma have steadily increased over the past several decades. These numbers are expected to climb in the coming years with recent advancements in mesothelioma treatment. While there is no definitive cure for mesothelioma, patients can elect to undergo specialized treatment or participate in clinical trials that often help prolong their life expectancy and improve their overall quality of life.
In an effort to help patients understand and improve their life expectancy, the Mesothelioma Center offers a complimentary packet that contains treatment information tailored to your specific diagnosis. The packet also covers the nation's top mesothelioma doctors and cancer centers, as well as financial assistance options to help cover medical costs. To receive your packet in the mail, please enter your information below.

Life Expectancy Factors

The life expectancy of a mesothelioma patient can be influenced by a number of factors, including stage of the cancer, type of mesothelioma, age at diagnosis, latency period of symptoms and other prognostic indicators. Mesothelioma is identified by where it attacks the body, and the location plays a role in survival.
Pleural mesothelioma attacks the lining of the lungs and makes up about 75 percent of mesothelioma cases. Its commonness makes for a longer life expectancy. Peritoneal mesothelioma occurs in the lining of the abdomen and is responsible for 20 to 25 percent of mesothelioma cases. On average, peritoneal mesothelioma patients live around six months after diagnosis, but women tend to live longer than men with this type.
Pericardial mesothelioma occurs in the lining of the heart. It accounts for only about 5 percent of the cases and is extremely difficult for doctors to treat and for patients to survive long.
Doctors have had some success treating mesothelioma, and there are actions someone can take to increase life expectancy. The earlier the disease is spotted, the better the chance of a successful treatment. A few (mostly younger) patients have survived five years or longer because of their treatment and exercise regimens.
Mesothelioma is also classified by cell type, and that type impacts average survival periods. Patients with an epithelioid type mesothelioma generally have a better life expectancy than those with a sarcomatoid or biphasic (mixed) subtype.

Staging

The exact stage of the cancer upon diagnosis has a direct impact on life expectancy. The primary factors that help define the stage of mesothelioma include symptoms and metastasis (spreading of the cancer).

• Stage l

  Cancer is localized. Surgery may be able to remove tumors and prognosis is highest.

• Stage ll

  Cancer has spread beyond point of origin. Surgery may still be an option, but life expectancy is decreased.

• Stage lll

  Cancer has progressed to advanced stage of development. Palliative treatments to ease symptoms may be considered.

• Stage lV

  Cancer has spread to distant locations. Palliative treatments can improve comfort, but life expectancy is severely decreased.

Mesothelioma Diagnosis

Doctors use a handful of common techniques to render a diagnosis: physical examinations, biopsies, blood tests, X-rays and imaging scans. They also take a medical history, including any history of smoking. In the case of mesothelioma, they will want to know about any history of asbestos exposure. A person should get a diagnosis from a specialist within three to six months of first seeing the doctor.

Histology

The histological subtype is one of the most important prognosis factors for malignant mesothelioma. Patients with epithelioid mesothelioma have a much better life expectancy than those with a sarcomatoid or biphasic (mixed) subtype.

Epithelial Sarcomatoid Biphasic

Latency Period

The severe latency period associated with the onset of symptoms may result in a late diagnosis. When referencing mesothelioma, latency period is defined as the period of time between exposure to asbestos and the moment the cancer become noticeable. Mesothelioma patients diagnosed in the later stages of development will often receive treatment to ease pain and discomfort rather than try to cure the disease.

Other Factors

A mesothelioma patient's life expectancy may also be affected by demographic and lifestyle factors, such as:

Gender

Males are predominantly affected by mesothelioma cancer.

Age

75 percent of mesothelioma cases in the United States occur in men age 55 or older.

Smoking

Smokers are 90% more likely to develop lung cancer after asbestos exposure.

Prolonging Life Expectancy

The efficacy of treatment should not be ignored when considering impacts on life expectancy. Treatment is improving with research and new medical advancements, and this is having a positive influence on the five-year survival rate. Additionally, mesothelioma survivors seem to have a unifying link: they integrated holistic and natural medicine into their treatment plan. Nutritional regimens, the addition of supplements and alternative therapies like acupuncture are among the holistic approaches tha survivors are using for their lives.

5-Year Relative Survival (Percent) 1999-2006

Age at Diagnosis

Patients Reaching 5-Year Survival (%)

< 45

39.7%

45-54

15.7%

55-64

7.5%

65-74

6.0%

75+

2.7%

Source: SEER Cancer Incidence Report

Treatment Factors

There are a number of options for patients to relieve symptoms and prolong their asbestos cancer life expectancy. Patients can elect to undergo treatment to remove the cancer, kill cancerous cells, reduce pain or manage metastasis. Some treatments that may improve life expectancy include:

Traditional Treatment:

Surgery, chemotherapy and radiation therapy are the three forms of traditional treatment currently available to extend life expectancy. Tests to diagnose mesothelioma in its earliest stage of development are also being explored to enhance the effectiveness of current traditional treatments.

Surgery Chemotherapy Radiation Therapy

Non-Traditional Treatment:

Therapies such as immunotherapy, gene therapy, photodynamic therapy and hormonal therapy are a class of experimental treatments. These therapies have improved life expectancy in some patients, but are only available through clinical trials since they are still in an experimental stage of medical testing.

Alternative Treatment:

A selection of mesothelioma patients have benefitted from alternative or complimentary therapies such as acupuncture, meditation, massage and yoga. These alternative therapies may reduce stress, pain and improve quality of life.

Clinical Trials

Mesothelioma researchers are testing new medications and treatment approaches through clinical trials with the hope of improving life expectancy. Clinical trials allow patients to take advantage of new treatments that may extend survival, but may also come with an element of risk.

Completed Get Help Enrolling Non-recruiting

Nutrition

A number of dietary changes can affect an asbestos cancer patient’s life expectancy. Considering nutrition in the treatment plan could have positive impacts on pain, stress levels and response to treatment. The Mesothelioma Center offers a complimentary nutrition book to mesothelioma patients looking to learn more about diet and cancer.

Patients who are searching for a second opinion or an experienced mesothelioma doctor can contact the Doctor Match department at the Mesothelioma Center to learn more about their options depending upon their unique diagnosis and location. To take advantage of this complimentary service, please call the Doctor Match department at (800) 549-0544.

Mesothelioma Prognosis

Approximately 2,000 to 3,000 new cases of mesothelioma are diagnosed in the United States each year. Once a patient is diagnosed, a doctor will likely discuss their prognosis, or probable course of the cancer's influence on the body and recommend various treatment options. .The prognosis of a patient diagnosed with mesothelioma and the recommended treatments can vary greatly depending on the patient's age, sex, asbestos exposure history and the specific cells involved.
The best way to avoid a poor prognosis is through early detection of the cancer. When mesothelioma is detected early, the prognosis is generally more favorable, as the cancer may not have spread to other parts of the body and may be more receptive to various treatments and surgery. Following detection, the best way to improve a patient's prognosis is educating oneself about the latest mesothelioma treatments.
Those who have been exposed to asbestos may wish to alert their doctor, as this may aid in the early detection of mesothelioma or another asbestos-related disease.

Pleural Mesothelioma 5-Year Survival Rate

Type of Mesothelioma: A patient's prognosis can be affected depending upon whether they are diagnosed with pleural, peritoneal, pericardial or testicular mesothelioma. Statistics show that approximately 10 percent of patients with pleural mesothelioma will survive for five years following diagnosis. Statistically speaking, pleural mesothelioma patients have the most optimistic prognosis.
Learn More About The Types of Mesothelioma
Overall Health: Patients diagnosed with mesothelioma who are otherwise healthy may have an easier time undergoing intensive treatment, such as chemotherapy, than someone with pre-existing health issues. Additionally,non-smokers often have a better prognosis than patients who smoke.
Stage of Mesothelioma: Doctors typically discuss the severity of a patient's cancer in terms of stages, ranging from Stage 1 to Stage 4. Patients with Stage 3 or Stage 4 mesothelioma will typically have a poorer prognosis than patients with Stage 1 or Stage 2 mesothelioma.
For example, in a study published in the European Respiratory Journal involving 167 patients with pleural mesothelioma, participants with Stage 1 pleural mesothelioma survived for 359 days, while those with Stage 3 or Stage 4 (combined) mesothelioma survived approximately 112 days. In general, treatment options are typically more limited and surgery may not be an option once the cancer has progressed beyond Stage 2.

Stage I Mesothelioma Patients Averaged a 359-day Life Span Following Diagnosis

Stage III and IV Patients Averaged a 112-day Combined Life Span Following Diagnosis

Cell Type: Mesothelioma histology impacts a patient's prognosis, as those with epithelial mesothelioma have a greater life expectancy than those with sarcomatoid or biphasic mesothelioma.
Size and Location of the Tumor: The size and location of a patient's tumor can impact their prognosis. Patients with tumors that have progressed or spread to other parts of the body generally have a poorer prognosis. Patients with tumors that may be surgically removed often have a better prognosis.
Progression of Symptoms: Patients who are experiencing serious symptoms of mesothelioma, such as chest pain or shortness of breath, may have a weakened prognosis, because the prevalence of mesothelioma symptoms often indicates the cancer has progressed to a later stage of development.
Learn More About The Progression of Symptoms
Additional factors, such as age and a patient's response to surgery may also affect a patient's prognosis.

Favorable Prognostic Factors	Poor Prognostic Factors
Stage I or Stage II Mesothelioma	Stage III or Stage IV Mesothelioma
Tumor Located in One Area of the Body	Tumor Progressed to Other Parts of the Body
Good Overall Health	Preexisting Health Conditions, Poor Overall Health
Epithelial Mesothelioma	Sarcomatoid, Biphasic Mesothelioma
Age 55 or Below	Over Age 55
Non-Smoker	Smoker
Female	Male

Current Prognosis Studies

The ability to provide patients with a more accurate mesothelioma prognosis increases as results from ongoing studies continue to surface. According to a January 2011 study conducted by the University of South Wales, females with mesothelioma may have a more positive prognosis, as the expression of the estrogen gene may lead to tumor suppression.
Additionally, a February 2011 study involving 636 patients with pleural mesothelioma conducted by the Division of Thoracic Surgery and Department of Pathology of Brigham and Women's Hospital in Massachusetts notes that patients with pleural mesothelioma who underwent an aggressive surgery known as an extrapleural pneumonectomy experienced extended survival.

Typical Mesothelioma Prognosis

Patients Surviving 5 or More Years Following a Mesothelioma Diagnosis (%)

Patients < 45 Years of Age

Patients 45- 54 Years of Age

Though a patient's prognosis varies greatly depending on the factors mentioned above, patients under the age of 45 appear to have a more optimistic prognosis. A study conducted by the American Cancer Society (ACS) involving 2,959 patients noted that nearly 37 percent of mesothelioma patients who were less than 45 years old survived for more than five years after diagnosis. Approximately 20 percent of patients aged 45 to 54 survived for longer than five years.
According to a study published by the Journal of Thoracic Oncology, the survival rate for mesothelioma patients is generally considered to be one year.
Learn More About Survival Rates

Improving Prognosis

Following a mesothelioma diagnosis, patients may wish to learn more about how they can improve their prognosis. Many patients will elect to undergo treatment to fight the cancer.

Common treatment options include:

• Surgery
• Chemotherapy
• Radiation Therapy

Mesothelioma patients may also wish to enroll in a clinical trial, as the clinical trial process tests up-and-coming medications and may provide access to new treatments that could extend life expectancy.