A majority of people had heard of asbestos, but were unaware of the seriousness of exposure to the deadly substance until they or a loved were diagnosed with an asbestos-related disease like mesothelioma, a recent Asbestos.com survey shows.
The Mesothelioma Center at Asbestos.com in December 2013 conducted a survey that asked our online newsletter readers a series of personal questions related to mesothelioma, including type of treatment they or their loved ones received, recommendations they offered to others dealing with the incurable cancer, effectiveness of their local VA hospital and primary location of asbestos exposure, among other queries.
One of our goals at The Mesothelioma Center is to raise awareness. That’s why it’s important to know that many had not heard about the toxic dangers of asbestos. While some survey responses reflected traditional answers, there were a few surprises. Here are the questions, responses and some analysis of what they mean.
Pleural and Peritoneal Diagnoses Low
Our question: What type of mesothelioma do you (or your loved one) have? Nearly two-thirds of people (63.5 percent) said they were diagnosed with pleural mesothelioma. Our data set is pretty small, which means this could be an accurate number.
Doctors and researchers generally hold to the statistic that 75 to 80 percent of all mesothelioma cases are pleural mesothelioma cases. Asbestos fibers are most often airborne and breathed into the lungs, which is where pleural mesothelioma begins. So the number in our survey was lower than expected.
Also low is the number for peritoneal diagnoses. Our survey showed that nearly 13 percent of cases carried this diagnosis. Most medical experts look at 20 to 23 percent leaving 1 percent or less for the other two major forms of the disease, pericardial mesothelioma and testicular mesothelioma.
When Diagnosed, Learn Your Cell Type
Regarding our question about mesothelioma cell type, one-third of the people who responded said they were diagnosed with epithelial mesothelioma. That’s actually lower than what statistics generally show, but this is likely a misleading number. Why? Because 41 percent of the people who took the survey said they did not know what kind of cell diagnoses they have.
That’s unfortunate, because this topic is too important for people not to know. When it comes to mesothelioma, this kind of question is similar to what doctors and nurses ask you when you walk into an everyday health clinic with a bad cold: Are you allergic to any medications?
When it comes to mesothelioma, cell type is a significant piece of the puzzle. This is information oncologists want to know and information they should be passing onto their patients.
Interestingly, the second-highest number of people who responded to this question 15.9 percent said they had sarcomatoid cell type diagnoses. This is actually the rarest type among the primary histological types of mesothelioma.
The most recent medical statistics show that biphasic is actually the second-most diagnosed type, from 20 to 35 percent. But less than 2 percent of our respondents said they had this diagnosis.
Heightened Interest in Alternative Treatments
We asked in our survey about the kinds of treatment received following a diagnosis of mesothelioma. Answers to this question were both expected and unexpected. The expected: Chemotherapy is the traditional mesothelioma treatment, and more than half of the people who took the survey show this number is right on target.
The unexpected: About a third of respondents are turning to alternative treatments like homeopathy and breathing respirators and other nontraditional treatments.
Chemotherapy and radiation treatment (the second-most prevalent form of treatment for mesothelioma and other cancers) can come with strong side effects that make patients feel bad. So it’s not surprising that people are choosing unconventional methods with less negative side effects.
Our Patient Advocates also say that one of the most common questions they’re asked by mesothelioma patients is what alternative treatments are other patients trying and recommending, and what kinds of alternative treatments are doctors suggesting for patients.
These kinds of questions speak to the devastating nature of asbestos-related diseases. They are so aggressive that patients often do not have the time to let traditional treatments work. They need help sooner rather than later, and are willing to try anything that is working for someone else. Why not?
We’re curious about what kinds of alternative therapy people are choosing, and what they like and don’t like. (We’ll ask that one in a future survey.)
Staging Important to Surgery as Treatment
In our question about treatments that are valuable after a diagnosis, our survey indicates that patients may not have an appreciation for the importance of surgery. It also indicates that cancer patients are ready for new treatments anything other than chemotherapy and radiation therapy.
The people who responded to our survey showed that chemotherapy (23.8 percent) and surgery (22.2 percent) were the most valuable treatments. This is an interesting discussion point: While chemotherapy can help people push past cancer, doctors overwhelming fall in line that surgery is the best first-line attack against the disease. Doctors recommend that getting cancerous cells and tumors out of someone’s body is almost always the best first option.
That discussion brings us to staging. One of the most valuable pieces of information you or your loved one can get from your doctor is a firm understanding of the stage or phase of your cancer at the time of a diagnosis. In fact, specialists tell us that staging is everything when it comes to mesothelioma treatment.
In addition, if you are diagnosed as a stage III or stage IV mesothelioma patient, you should get a second opinion even if your first opinion is from an oncologist. Why? Because regular oncologists and mesothelioma specialists do not stage this type of asbestos cancer the same way. Also, doctors generally are taught that stage I and stage II cancer patients are prime candidates for surgery, and stage III and stage IV patients are not.
Mesothelioma specialists sometimes perform surgery on patients who are younger than 80 and were originally diagnosed as stage III or stage IV by another oncologist. Mesothelioma is most properly diagnosed with the Brigham Staging method, which is based on how operable the tumors are and not on how much the cancer has spread.
Our survey showed alternative therapy was the fourth most valuable topic discussed while tackling diagnosis. The first three (in order): Chemotherapy, surgery and improved nutrition. The growing popularity of alternative therapy underscores the number of people diagnosed with mesothelioma who are seeking unconventional treatment options like herbal remedies and alternative and natural medicines.
Find the Best Doctor Now
When asked what people would recommend to others who are diagnosed with mesothelioma, almost half of respondents said finding an asbestos cancer specialist immediately was the best advice they could give anyone dealing with mesothelioma.
This answer is encouraging because word is getting out that most doctors even most oncologists are not accustomed to treating patients with asbestos lung cancer or other asbestos-related diseases. Mesothelioma specialists say some doctors and patients don’t understand that the time factor and treatment is critical to helping a patient. Decisions have to be made quickly.
The rub about finding a specialist: All the different variables that factor into find the right one.
- How close (or far away) the doctor is from the patient. Many mesothelioma specialists treat patients who live hundreds of miles away.
- Which types of asbestos cancer the doctor treats. Some mesothelioma physicians treat only lung-related diseases like pleural mesothelioma. Others specialize in treating peritoneal, the second-most prevalent type. Patients with peritoneal mesothelioma should find a specialist who has a track record of treating similar patients.
- Veterans and insurance issues. These can be real road blocks to getting to the right doctor quickly and treatment regimen. (Immediately starting treatment was the second-most popular answer to our survey question on recommendations.)
These kinds of logistical issues are ones our Patient Advocates help families with all the time. They also input people into Doctor Match program, a refined list of doctors, to help in their search for a specialist.
It is vital that someone with a mesothelioma diagnosis get to a doctor who knows how to treat asbestos diseases as soon as possible. This is the smartest, most efficient way to ensure a longer life.
Is Secondary Exposure More Common than We Think
We asked where you or your loved one was exposed to asbestos, and a quarter said their exposure occurred while they served in the U.S. Navy. The second-most popular answer was a tie between construction and secondary exposure.
Both of these numbers are a bit surprising for a couple reasons.
Historic medical data in addition to anecdotal data we have from patients is that at least 26 percent of the people diagnosed with any type of mesothelioma served in the U.S. military. While the Navy accounts for a majority of those mesothelioma cases (although exact statistics are not known), members of the Marines, Air Force and Army also develop this rare cancer.
Although 25 percent of respondents said they were exposed to asbestos in the Navy, the actual percentage of veterans who develop mesothelioma could be much higher than reported.
The second surprise is the high number of reported secondhand exposure, or secondary exposures. There are many documented cases of spouses and children with mesothelioma, and the medical community acknowledges that family members of someone who was exposed to asbestos carried an “increased risk” of all forms of mesothelioma. However, there are no official medical statistics on this.
People who work with a number of mesothelioma patients also believe again, no solid figures that perhaps secondary exposure is much more of a threat than the medical community suggests.
There Are VA-Specific Mesothelioma Specialists
Many people with mesothelioma receive treatment through the VA Healthcare system. We asked about their comfort level with the federal system, and praises were slim. The top two responses were that too many hospitals are understaffed with poor service (14.9 percent) and it takes too long to get answers and care from the VA (14.9 percent).
Less than 10 percent said their VA hospital was very helpful and somewhat helpful. Fortunately, The Mesothelioma Center has VA counselors on staff to help answer questions from military veterans.
Despite that negative perception, two prominent thoracic surgeons, who are also mesothelioma specialists, recently have stepped forward to offer their services to veterans throughout the VA Healthcare System. Avi Lebenthal, M.D., in Boston; and Robert Cameron, M.D., in Los Angeles have been encouraging veterans everywhere to join them at their respective VA affiliations. Lebenthal is at Brigham & Women’s Hospital, and Cameron serves at the UCLA Medical Center.
Anyone within the VA System should be eligible to see either of them for specialty care, which is so vital to get the best possible treatment with mesothelioma. Cameron has been lobbying hard to land the first federally-funded mesothelioma research and treatment program at the West Los Angeles VA Medical Center.
The Mesothelioma Center has VA counselors on staff to help answer questions from military veterans.
Survivors Give People Hope
We asked about what else you wanted to read on Asbestos.com, and you told us. We received a variety of topics to cover, but the most requested included stories from survivors, treatments and clinical trials and how to extend life expectancy. We already write about these topics, but there is always room to expand our coverage and bring you more valuable content.
The Mesothelioma Center at Asbestos.com will continue raising awareness as part of our ongoing mission. Our writers also appreciate your feedback or suggestions on their stories in Asbestos.com or our Facebook page. You can always email us at firstname.lastname@example.org.
We’d love to hear from you.
Missy Miller, Tim Povtak and Karen Selby contributed to this report.