How Do I Go About Getting A Second Opinion?

Recently, we discussed that obtaining a second opinion for a mesothelioma diagnosis is a personal decision. Today we turn our focus to the process of actually getting that second opinion. Unfortunately, in this age of insurance bureaucracy it can be most difficult to obtain a second opinion from a provider outside your insurance plan.  Many HMO regulations require that the insured be treated within their network of providers.  The problem?  There are very few physicians or surgeons with the expertise needed to treat pleural or peritoneal mesothelioma.

Let me tell you about some of the challenges two mesothelioma patients had to overcome before they could obtain a second opinion.

One gentleman, I will call Jimmy, noticed that over the months he had been putting on weight around his belly.  Like most middle-aged men he attributed his weight gain to overeating and lack of exercise.  He took it upon himself to begin a strict diet and vigorous exercise regime.  Nothing worked and his starvation diet eventually placed him in the emergency room.  After numerous tests and exploratory surgery, Jimmy learned he had peritoneal mesothelioma.  He sought treatment from an oncologist within his insurance plan only to be told by the oncologist that he had no expertise in treating mesothelioma. 

Jimmy went back to his primary care physician who arranged for him to meet with a mesothelioma specialist.  A consultation was approved by his insurance company and an appointment was scheduled.  However the consultation was canceled after the specialist learned that Jimmy had peritoneal mesothelioma.  You see, the specialist was a thoracic surgeon who limited his practice to that of mesothelioma of the pleura. 

Through the help of the Mesothelioma Applied Research Foundation Jimmy found a surgeon that was qualified in the treatment of peritoneal mesothelioma.  Before Jimmy could meet with this surgeon he was required to file a prior authorization provision with his insurance carrier.  He obtained the necessary referral from the first treating oncologist and assumed it was approved.  He scheduled an appointment with the surgeon and forwarded his medical records. 

However, Jimmy faced another setback when his insurance carrier denied the request because he did not follow through with the first outside consultation.  This was clearly a lack of understanding by the insurance carrier about the complexity of Jimmy’s cancer.

Jimmy was told he could file a grievance that would be heard on an expedited basis if he could prove that the standard grievance hearing process of 30 days would be detrimental to his health.  With the help of the new surgeon’s staff, information about peritoneal mesothelioma and the surgeon’s treatment protocol was provided to the insurance company. 

Through diligence and determination Jimmy took on his insurance carrier and won! 

Hazel was faced with another problem.  It took the doctors in her HMO over a year to diagnosis her with pleural mesothelioma.  When she was finally diagnosed her insurance carrier refused to allow her to obtain a second opinion.  The carrier insisted that she use one of their approved thoracic surgeons to perform exploratory surgery.  Hazel met with the surgeon who honestly told her that he had never performed surgery on a patient with mesothelioma.

Disgusted with her insurance company, she took matters into her own hands.  She gathered all her medical records and with the help of the Mesothelioma Applied Research Foundation located a thoracic surgeon with expertise in treating mesothelioma patients.  After undergoing all the diagnostic testing, Hazel learned that she was a candidate for surgery.  Again, she contacted her insurance carrier requesting coverage for “out of plan” services.  Again, she was denied. 

Fortunately, Hazel had money available to obtain the best treatment and went forward with the surgery. 

Unlike Hazel, Maryanne didn’t have the resources to insist on a second opinion.  She blindly, without complete knowledge and understanding of her disease, put her treatment in the hands of a local oncologist.

The chemotherapy protocol was not effective and Maryanne suffered severe side effects.  Months later her son stepped in to take control.  Together they traveled to the Mayo Clinic in Rochester, M.D. Anderson in Houston, University of Colorado Cancer Center, University of Chicago Cancer Center and New York City for second, third, fourth and fifth opinions.

Regrettably all told Maryanne and her son the same dismal diagnosis.  Maryanne had waited too long.  The cancer had metastasized to her liver and there was nothing that could be done.

The point of sharing these stories is this: if you have any question or concern about the care you will receive use all resources available and all means necessary to obtain second and third opinions regarding your treatment.  It’s your life, not the insurance company’s.

• Make your primary care physician and his staff your Allie;
• Enlist their help for all referrals and laboratory testing;
• Understand the terms of your insurance coverage;
• Scour the Internet for new protocols and providers near your home;
• Contact Mesothelioma Applied Research Foundation or other non-profit agencies to help locate medical professionals and put you in touch with other mesothelioma patients;
• Rely on your family.  Give each a task or responsibility to help you secure the best treatment, and,
• Believe in yourself.
  

Hopefully, there will soon be significant changes in the insurance industry to allow people the ability to seek out the best care available even if it is outside of their insurance plan.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

Should I Get a Second Opinion for My Mesothelioma Diagnosis?

I consider it always in one’s best interests to explore all viable mesothelioma treatment options.  In preparation you should work closely with your diagnosing physician or primary care physician as he or she will likely be actively involved in your follow up care should you seek treatment from a mesothelioma specialist or expert in the remedy of mesothelioma.

Many times family members, those close and not so close, will try to sway or encourage the mesothelioma patient to seek consultations for treatment that he or she has no desire to undergo.  Nevertheless, obtaining a second opinion is a highly personal choice. 

Before you meet with the specialist you should not only gather all your medical records but also take into consideration the following when you meet:

• Do you believe that he is honest with you? 
• Do you feel comfortable talking with him?
• Are you able to understand what type of treatment he proposes?
• What is required of you during recovery?
  

I have observed that when a mesothelioma patient chooses the surgeon or mesothelioma specialist that he or she feels the most comfortable with the patient seems to have a brighter prospect and attitude toward his or her recovery.

If it takes a consultation from more than one mesothelioma specialist, then do it; but do it quickly.  A wait and see approach to your mesothelioma diagnosis will only lessen your chances for a viable treatment option.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

I have been given a diagnosis of mesothelioma. Since this is a rare disease, how do I know that my physicians have enough experience with the disease to treat me?

Ask! Don’t hesitate for one second to ask your doctor about his experience treating mesothelioma!  He or she will not be offended.  Keep in mind that if your physician had been given the same diagnosis, he too would be asking where to find the best treatment.

According to Dr. Pass, if your physician or medical treatment facility has not treated more than 50 cases of mesothelioma per year or does not specialize in the disease, your doctor will most likely refer you to a cancer treatment center.

Enlist your doctor’s aide in coordinating your initial consultation with a mesothelioma specialist or other treating facility.  Many people I have spoken with claim that their personal physician is their strongest advocate.  Use your trusted physician to perform the preliminary medical testing and provide your medical history to your new doctor.  Once you have undergone surgery or chemotherapy your primary care physician will be instrumental in your recovery.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

How Will I Learn About My Biopsy Results, and How Can I Be Sure the Diagnosis is Mesothelioma?

After the pathologist has reviewed the fluid or tissue specimen he will issue a report stating the findings and diagnosis. This report will be provided to your doctor. Normally the physician or surgeon that performed the biopsy will receive the results. If you were referred to this physician by your primary care provider, the performing physician may prefer to have your personal physician relay the results to you.

You should not feel slighted should this happening. Many doctors I have spoken with feel that if the patient is more comfortable with his personal physician, he is more likely to ask the questions about mesothelioma treatment and seek out additional medical consultations.

As a precaution and for better understanding you should:

• Not accept the results of any pathological testing over the telephone;

• Schedule your follow-up appointment with your doctor when he is available to answer your questions;

• Bring with you a list of any questions you may have regarding your mesothelioma diagnosis;

• Ask your spouse or other family member to accompany you to the appointment so that you have not only their support but an extra pairs of ears to take in what your doctor is telling you.

And remember that as a cancer patient you have the right:

• To ask your doctor questions regarding your diagnosis and the procedures performed to obtain the diagnosis;

• To seek a second opinion from another qualified physician or expert;

• To receive complete information about your illness;

• To be informed of all mesothelioma treatment options, including that of chemotherapy, surgical intervention, radiation and other procedures as well as the risks and benefits associated with each;

• To choose your type of care including that of alternative medicine or palliative care, providing you understand all risks involved.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

How are Biopsies Performed and Which One is Right for Me?

In the book 100 Questions and Answers About Mesothelioma the authors ask the following: "How are biopsies performed and which one is right for me?" In my years of working with people that have been diagnosed with mesothelioma, when reviewing their medical records I find that often majority of the time fluid obtained from a thoracentesis or paracentesis is inconclusive for a mesothelioma diagnosis.

While the removal of the fluid provides relief it is very difficult to secure a firm diagnosis of mesothelioma. Why? Because sometimes the abnormal cells are so slight that they are impossible to tell apart from benign, reactive mesothelial cells or other large cells that contain waste or foreign bodies. And, if no abnormal or malignant cells are found in the fluid the patient is often misdiagnosed.

Problems arise when the procedure does not yield sufficient cells to perform the special staining required to diagnose mesothelioma. Extracted fluid that is very thick tends to contain more cells making evaluation by way of immunohistochemical (IHC) or special staining easier to secure a diagnosis of mesothelioma.

The procedure to obtain fluid for cytological analysis requires a local anesthesia and a special needle to drain the fluid. This procedure can normally be performed in the doctor’s office.

A pleural biopsy consists of fluid and a small amount of tissue from the pleura. If the immunohistochemical staining (sometimes referred to as immunos) comes back as inconclusive, then more evasive procedures may be required to confirm a diagnosis. Your doctor may perform a thoracoscopy (a lighted scope with or without a camera). This involves making a small incision in your chest wall and placing a thin tube, called a thoracoscope, into your chest. This enables your physician to look inside your chest and obtain tissue samples. Not only can this procedure obtain tissue samples necessary to confirm a mesothelioma diagnosis it can also help your doctor determine the amount and whereabouts of the disease helping him to formulate a treatment plan.

If, through radiological observation, there appears to be more solid tumor than fluid, then your doctor will recommend an open biopsy. The incision is determined by the size of the thickened pleura and should be done by a thoracic surgeon with knowledge of mesothelioma. Normally a tissue sample measuring from 1 to 1½ inches in diameter is harvested to provide the pathologist adequate tissue to make a diagnosis.

You should follow your doctor’s advice on which procedure should be used for your diagnosis as he is the best one to determine your physical ability to undergo these diagnostic procedures.

Everyday - even this very minute - dedicated researchers are diligently working to advance our ability to diagnose mesothelioma through immunohistochemical staining and other special procedures less evasive in hopes that early detection may aide in the treatment of mesothelioma patients.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What Tests are Performed to Help Diagnose Mesothelioma?

For the men and women who worked in the asbestos industry, a chest film or chest x-ray was likely required by your employer or union. Unfortunately, some of the individuals I have had the opportunity to speak with tell me that they stopped monitoring their health through chest films once they retired or left the asbestos industry.

That may be the result of not having enough information from your employer, union, doctor or other resources regarding the potential risk and long latency period for asbestos-related diseases. You may not feel a chest x-ray or annual visit to your doctor was necessary because you haven't experienced mesothelioma symptoms or were not ill. But if you have a history of asbestos exposure, an x-ray is an important tool for monitoring your health. A recent chest film should be compared to one from the previous year to chart any changes or abnormalities.

Even though an x-ray can identify pleural scarring, fluid accumulation and abnormal masses, further diagnostic testing is warranted if your physician feels it is necessary to provide or confirm a mesothelioma diagnosis. A CT or CAT scan can give your doctor a better picture of any fluid or masses surrounding your lungs, heart or diaphragm.

The powerful electro magnets of a MRI provide detailed images of the body and demonstrate a greater contrast between the soft tissues of the body. It can be a useful tool in determining the involvement of the tumor.

A PET scan requires radioactive glucose injected into the bloodstream to recognize high levels of glucose that are retained in active tumors, cancer cells and other infected areas. Areas with high levels of glucose will appear as bright spots or abnormal cells.

The latest technology combines both the CT scan and the PET scan into a single computer image to provide a more accurate image of tumor activity in the body. An area with high active sugar consumption suggests cancer while a low level of activity is indicative of a benign tumor, a healing or inflammatory response to an injury. Used together the two can establish the location of tumor, growth and identify excessive biological activity.

While all of the above procedures can identify pleural effusions, masses or other abnormalities in the body, none can determine if you have mesothelioma. Cytological analysis of pleural fluid or pathological testing of specimens from a tissue biopsy is recognized as the standard tool to obtain confirmation of a mesothelioma diagnosis.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

Are Blood Tests Useful to Diagnose Mesothelioma?

Almost all of us have had a blood test for one reason or another. It is a basic procedure for any routine physical. If your white blood cell count is elevated it suggests an infection of some type and more often than not likely your doctor writes out a prescription for an antibiotic. After a few days the antibiotic destroys the microorganism or bacteria that caused our illness and you assume your daily routine.

But just what is a biomarker? A biomarker is a specific physical trait used to measure or indicate the effects or progress of a disease, illness or condition. If a biomarker can be identified and validated, it can be used to diagnose the presence of a disease or aid in the treatment of a disease.

Since the 2005 publication of 100 Questions and Answers About Mesothelioma, significant progress has been made to find biomarkers for early detection and treatment of malignant pleural mesothelioma. Two promising discoveries related to blood analysis and testing are discussed below:

Osteopontin – A Potential Marker for Mesothelioma

Osteopontin (OPN) is a protein which can be found in circulating blood and is associated with cancers.

The presence of the blood protein osteopontin was investigated in three subject groups. The study included 69 subjects with an asbestos-related pulmonary disease, 45 healthy subjects with no known asbestos exposure and 76 mesothelioma subjects. The OPN levels were found to be significantly higher is those diagnosed with mesothelioma as compared to those with pulmonary plaques and fibrosis. The osteopontin levels were clearly identified in 78% of the mesothelioma subjects. And had an accuracy of 85.5% when identifying those with mesothelioma as compared to subjects with benign lung conditions. The osteopontin levels between those with non-malignant asbestos disease and those with no asbestos exposure showed no sizeable difference.

It was concluded that serum osteopontin levels could be used to identify those persons with pleural mesothelioma from those with exposure to asbestos who do not have cancer.

MESOMARK – A Blood Test for Monitoring Mesothelioma

Another biomarker has been identified by the presence of soluble mesothelin-related proteins (SMRP) that are released into the blood stream by the diseased cells. Studies revealed that mesothelioma patients had a significantly higher level of SMRP than patients with other cancers or documented asbestos exposure. The study also found that SMRP levels rose as the disease progressed to more advanced stages.

MESOMARK® was approved by the U.S. Food & Drug Administration in 2007 under the Humanitarian Device Exemption (HDE) as an effective tool for patients who have been diagnosed with epithelial or biphasic mesothelioma (only) to monitor the progression of their disease.

MESOMARK® is a simple blood test that utilizes an Enzyme-Linked Immunosorbent Assay (ELISA) format to measure the Soluble Mesothelin-Related Proteins (SMRP) in the blood of a epithelial or biphasic mesothelioma patient. Elevated SMRP levels above 1.0 may suggest progression of the disease. The MESOMARK® test has been used by doctors in conjunction with PET/CT scan to monitor disease progression and management of treatment options for their patients.

The MESOMARK® test can only be performed in designated laboratories and your physician must be registered with Fujirebio Diagnostics, Inc. To learn more about MESOMARK® visit their website at www.fdi.com.

Reference: Pass, H. I., Lott D., Lonardo, F., et al. Asbestos Exposure, Pleural Mesothelioma, and Serum Osteopontin Levels. New England Journal of Medicine. 2005; 353: 1564-1573

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

How is Mesothelioma Diagnosed?

I have scrutinized hundreds of medical records over the last decade and the one major point I want to make clear is that I rarely find a mention of asbestos exposure in the medical records until after a mesothelioma diagnosis has been made.

I have never seen any questions or reference to asbestos exposure on any medical questionnaire that I have completed for myself or my husband. I have seen the question on medical and exposure history questionnaires of those surgeons and specialists that treat mesothelioma patients and for those who are monitored through their employment.

Now I know that I can’t remember every little thing in my life but if you, as you are reading this can recall your own exposure to asbestos – take the time to write it down. Try to remember the years, type of exposure and product. In fact it might be a good idea to keep a journal that would include your past medical history, surgeries, illnesses, hospitalizations, medications and exposures to all toxic substances. And remember to include your parents and siblings medical history, if you know it, because it is always on the medical questionnaire. If anything, having a medical journal would make it easier for you or a loved one to fill out the medical questionnaire. And it is important to keep it current and in a convenient, easy to locate place should you need it in an emergency situation. And for you Snowbirds, take it with you when you head south for the winter.

Not all of us are going to be diagnosed with an asbestos-related disease but we have to make sure that our doctor is aware of our history of exposure. It may help when he listens to your chest and hears the rattling or rub in the chest. Tell him all your symptoms including night sweats, nagging cough and difficulty sleeping on one side or flat on your back. Let him know if you wake up gasping for air or have heaviness in your chest. Don’t be shy, embarrassed or too proud to tell him all your ailments.

If after you have seen your doctor and been prescribed medication for any illness and your health does not improve or the symptoms linger, then go back to your physician and tell him. Help him help you.

Mesothelioma can only be diagnosed by way of tissue biopsy or analysis of cells from fluid removed from the chest or abdomen. If your doctor decides it is necessary for you to undergo one or more of these diagnostic tests follow his advice and do it!

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What are the Symptoms of Mesothelioma?

As Dr. Pass states, most patients have mesothelioma symptoms anywhere from two weeks to six months prior to seeking medical treatment. The symptoms can and do include shortness of breath, loss of appetite, pain on the side or back and a cough.

After interviewing hundreds of individuals I have learned that it is often a life–changing occurrence or other significant incident that triggers the initial trip to the doctor.

In my experience women seem to have a greater threshold for pain so they tend to ignore it and push on. I’ve heard all types of self-diagnoses and excuses from the female pleural mesothelioma patient. Yet when I ask them the reason they first sought medical attention the majority of them complain of pain under the shoulder blade or mid side to back. Most of the women I have spoken tell me that they did not experience shortness of breath or cough until after they have been diagnosed. All have stories to tell and I listen. I listen to every word they tell me.

One woman, recently divorced set out to change her life for the better. I will call her Iola. She told me that after she had shed her dead beat husband, she determined it was time to shed the weight. Her goal was to lose 50 lbs and she began a moderate exercise program that included aerobics and swimming. Iola was faithful to the regimen and dropped 20 lbs in six to seven weeks. She decided it was time to add the weights to her work out schedule. Iola experienced the normal soreness accompanied with weight training but continued to press forward. The “soreness” lingered for almost two months. Then one Saturday morning she took it upon herself to rearrange her living room furniture and the pain knocked her to the floor.

Iola told me that the excruciating pain kept her pinned to the floor for nearly 20 minutes. She told me that she had to crawl and scoot on her belly to reach the telephone to call her son for help. When Iola’s son and his family arrived, they panicked. Afraid to move her, they called the paramedics and Iola was transported to the emergency room of a nearby hospital.

After describing the events that lead up to her fall, Iola was diagnosed as having a pulled or strained muscle, prescribed a muscle relaxer with bed rest and was told to follow-up with her primary care physician if the pain persisted. Odd but true, no x-rays were taken. After 48 hours, the sharp agonizing pain faded to a dull nagging presence.

Did Iola follow up with her doctor? No. As the holidays were fast approaching Iola was swamped with preparations for Thanksgiving dinner, Christmas baking, charity work with her church, and shopping for Christmas gifts. Iola pumped herself with ibuprofen and told her family, she was fine.

Then in late January Iola realized that her pain was only a symptom of a greater problem. She was constantly tired and no longer interested in working out. It was all she could do to walk upstairs to her bedroom. Iola finally decided enough was enough and contacted her physician. Approximately four weeks later, after a battery of test, Iola was diagnosed with right-sided pleural mesothelioma. Iola’s first symptom appeared almost seven months before she was diagnosed.

I have found that a number of men I have spoken with have been on vacation or traveling when their symptoms first appear. They normally put off seeking medical attention until they return home or their wives force them to go to the doctor. Just like Congressman Vento, they experienced severe shortness of breath and pain in the mid-back or just under the shoulder blade.

I have been told by wives that those with a cough have had an early morning cough for months, sometimes even years. The cough progresses to the point where the patient cannot finish a sentence without coughing or clearing his throat. They assume its allergies and will take OTC medications to relieve the symptoms.

The problem is that mesothelioma hides so well for so long. Even those that have a known history of asbestos exposure, have already been diagnosed as having pleural scarring or asbestosis and have their health monitored with regular chest films can fall victim to mesothelioma even after receiving a clean bill of health just a few months earlier.

These men are very active, in their mid 60’s and have recently retired. They have spent their time pursuing their hobbies such as woodworking, sailing, hunting or fishing. They are men who have worked hard all their lives, saved for their retirement and had plans to enjoy another 20 or 30 years doing what they loved.

These men and women were the builders of America.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What causes mesothelioma?

Exposure to asbestos is considered to be the primary cause of mesothelioma, but the how and why can be baffling. Asbestos is a natural mineral. It is in the air we breathe and the water some of us drink. In “100 Questions and Answers About Mesothelioma” we learn that asbestos fibers can be inhaled and ingested.

Even though I have been working with people affected by mesothelioma for over a decade, there are still questions I ask and strive to find the answers to when trying to understand how an individual can end up with a mesothelioma diagnosis.

Can living near a natural deposit of asbestos increase your risk of mesothelioma?

Perhaps the best example of this can be found in Janet Raloff’s article, “Dirty Little Secret”, Science News, Vol. 170, #2, July 8, 2006, which discusses one study in which data collected from 3,000 mesothelioma patients found that there was an association between the number of mesothelioma cases and the distance one lived from a natural deposit of asbestos. In this particular study, the risk of mesothelioma declined by 6% for every 10 kilometers one lived from the source of asbestos.

And then, of course, there is the Libby, Montana fiasco. The 2004 Libby, Montana Documentary depicts the lives of hard working Americans who fell victim to asbestos exposure. The honest agony of these victims of asbestos poisoning is wrenching.

How is it that when one breathes in these minuscule particles one’s body cannot rid itself of them?

According to Dr. Pass the majority of asbestos fibers that are inhaled may be trapped in the mucous linings of one’s upper air passages and are coughed up. When the longer, larger fibers are swallowed or not eliminated they can travel through the body lodging in the pleural lining creating pleural plaques or in the lung until after time scar tissue, known as asbestosis can develop. Those with pleural plaques are at a greater risk of developing mesothelioma.

Dr. Pass along with other distinguished researchers are working together to find and develop new methods for early detection for individuals with high levels of asbestos exposure.

We must help Dr. Pass and other dedicated organizations such as the Meso Foundation (Mesothelioma Applied Research Foundation), IMP (International Mesothelioma Program), and the University of Chicago Cancer Research Center find the answers and the cure. If not a cure, then the resources necessary to discover more treatment options and alternatives to helping those afflicted with mesothelioma to have a greater quality of life and a lot more time with us.

Mesothelioma research is critical. We should all push our legislators to do more.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What is the pleura?

The word "pleura" is about as foreign and strange as the word "mesothelioma." It almost sounds like something out of a science fiction movie. According to "100 Questions & Answers About Mesothelioma," the pleura is a sheet-like lining that forms around the chest wall and lungs like wallpaper.

All of us have had some type of respiratory infection. Those who have had a bout with pleurisy as the result of pneumonia know how painful the inflammation of the pleura can be. But few of us understand exactly what the pleura is and its function in the body.

As Dr. Pass tells us there are two pleurae in the chest. The parietal pleura, is only 2 to 3 mm thick, which is approximately the same density of three sheets of copy paper. The visceral pleura, is approximately one sheet of copy paper. Can you imagine these two thin membranes lining and protecting our lungs from injury and disease?

The parietal pleura lines and is attached to the chest wall. It is extremely sensitive to pain. The visceral pleura cover the lung, blood vessels, bronchi and nerves. Between both is what is known as the pleural space where pleural fluid lubricates the surfaces of both linings allowing the two layers to slide against each other while breathing. Pleural fluid also keeps the lung surface fitted to the chest wall providing inflation of alveoli during respiration coordinating the movement of the chest wall closely with that of the lungs.

Even though Dr. Pass states that the pleura is expendable, that one's body can function without it should it become diseased, one should be attentive of one's body and recognize that symptoms such as a nagging cough, pleurisy, pneumonia or bronchitis. If you were exposed to asbestos, you may have an asbestos related cancer like mesothelioma.

If you have a history of exposure to asbestos please take the time to make your primary care physician aware of the same.

Can mesothelioma be prevented?

According to “100 Questions and Answers About Mesothelioma,” the best way to prevent mesothelioma is to decrease one’s exposure to asbestos in the workplace, at home, and in the environment. Regulating the necessary safety measures to deal with asbestos exposure is the responsibility of the government.

It is my opinion that the only way one can prevent contamination from asbestos is to completely ban the use of all toxic asbestos fibers and stop the influx of products made of asbestos from entering the United States.

If I had a magic wand, I would do that today. Unfortunately, I've read that asbestos will always be used in the defense and aerospace industries. As more and more of our daily products are being imported from other countries that do not ban the use of asbestos, who knows exactly what is contained in our products. Remember the recall of the CSI Fingerprint Examination Kit?

After scouring through 40 years of congressional legislation I learned that there have been many attempts to regulate the use of asbestos. I applaud Senator Patty Murray of Washington State and marvel at her ability to make S.B. 742 happen. The bill was another step in the right direction, but I won’t be satisfied until all asbestos fibers are banned from use.

It is a difficult job to get the asbestos products off the shelves and an even greater one to educate the public. With all the home remodeling and do-it-yourself shows on television more and more families are remodeling their homes. Scraping off the popcorn ceilings seems to be prevalent in most home remodels, most likely because it is such a hassle to clean. I never knew that textured ceilings contained asbestos and I use to vacuum the ceiling all the time. Of course I then had to vacuum the floor because of all the dust I created.

After moving to California I heard a commercial about the dangers second hand smoke coming through the ventilation system in apartments comparing it to the toxic poisoning of asbestos. I wonder just home many apartments, townhouses and homes still contain asbestos. And just how many of them are run down enough to allow asbestos fibers to move through the ventilation system.

Yes, it’s going to be a long and hard process to eliminate asbestos from our lives. We must continue to fight the battle. Contact your legislators. Tell them to ban asbestos to prevent mesothelioma!

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

Are there different types of mesothelioma?

According to "100 Questions & Answers About Mesothelioma," there are three main types of mesothelioma: epithelioid mesothelioma, sarcomatoid mesothelioma, and mixed (also called biphasic mesothelioma).

Generally, when I speak with someone who has recently been diagnosed with mesothelioma, I ask the diagnosis type. Unfortunately, I have gotten some strange responses, including the “slow type” and the “good kind”.

I later learn that they are referring to epithelioid mesothelioma. Epithelioid refers to the cell structure or formation. The cells are of polygonal nature, meaning that all sides of the cell are connected or joined together. The cells are similar in shape, closely aligned or adjoining with distinct nuclei evident under microscopic examination.

Because epithelioid mesothelioma is considered to be the least aggressive but more responsive to treatment some physicians opine that if one is going to get mesothelioma it is the “best kind” to get. I disagree!!

Why? Because it gives the diagnosed person the impression that he or she has unlimited time to make a treatment decision. Often the diagnosed will take a wait and see approach. Think about this, while it may have taken 20, 30 or even 40 years for one’s mesothelioma to develop, it’s not going stop growing while you weigh your mesothelioma treatment options. I say to you, as gently as I can, there is no safety net of time.

Another subtype of mesothelioma is known as sarcomatoid mesothelioma. Sarcomatoid mesothelioma is complicated to diagnose. Pathological evaluation is difficult because the spindle-like cell structure and reaction to chemical staining mimic that of a sarcoma.

When a diagnosis of biphasic mesothelioma has been made it is likely that biopsies were taken from different parts of the tumor. Although Dr. Pass states that this type of mesothelioma makes up about 20% to 35% of mesotheliomas, I have seen higher percentages ranging from 40 to 60 percent. This may be because of the advances made in immunohistochemical analysis as well as the surgeon’s awareness of the diseased tissue and the need for harvesting multiple sections.

Remember, a proper diagnosis is critical to choosing the best mesothelioma treatment.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What are the risk factors, or who gets mesothelioma?

People that have been diagnosed with mesothelioma have, at some point in their lives, worked on jobs or been in an environment where they were exposed to asbestos fibers. Factory workers. Ship builders. Brake repair workers. Construction workers. Asbestos miners. And the list goes on and on. As Sue Vento tells us in “100 Questions & Answers About Mesothelioma,” there have been countless individuals unknowingly exposed while serving in the military or home remodeling projects.

In the past many of the people I have had the privilege of speaking with have worked in the asbestos industry or have had exposure to asbestos through household exposure from a family member who worked with or around asbestos.

But to quote Bob Dylan, “… the times, they are a changing.” The number of people diagnosed with mesothelioma, with no known occupational exposure, is increasing. Those numbers include victims younger in age and women.

I grew up in the Midwest where everyone thinks they can do it themselves. When I was ten years old we lived in a little 1957 three-bedroom ranch home where the kitchen wasn’t large enough to accommodate our growing family. My Dad and his buddies decided to knock out a wall and expanding the kitchen dining area into my bedroom.

It was a disaster! There was dust from the drywall flying everywhere as they used hammers and saws to cut through the wall. Their plan was to take down the whole wall and move the kitchen cabinets and the sink to the outside wall. Luckily the plumbing for the sink stopped them from bringing down the whole house. Being the oldest and only girl, it was my job to sweep up the mess, made not only by the wrecking crew, but by my little brothers who constructed a fort in the living room with the big chunks of drywall.

I’m sure that if one stops to reflect upon their life, there are probably a number of times one was exposed to asbestos. From the construction boom after WWII to the blanket pajamas and retardant BBQ aprons worn at the backyard parties. It was the “wonder years” where life was good and everything was made of asbestos.

I’d like to hear your stories – drop me a line.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.

What is Mesothelioma?

The first reaction most people have when they hear about mesothelioma is "meso what?" The word is as strange and unfamiliar as the asbestos cancer itself. In the book "100 Questions and Answers About Mesothelioma" we're told that malignant mesothelioma is a a rare form of cancer that is found in the lining of the chest, lungs, and abdomen. In medical terms this is typically referred to as the lining of the pleura (lung) and peritoneum (abdomen). The book also tells us that between 2000 and 3000 new cases of mesothelioma are diagnosed each year in the United States alone. Most of those cases are diagnosed as pleural mesothelioma (mesothelioma of the lungs).

In my experience, most patients are so overwhelmed when given the diagnosis of mesothelioma that they enter a state of bewilderment. They hear only the words; “rare, chemotherapy and sometimes untreatable.” Needless to say, the pronunciation of mesothelioma is a tongue twister for most all of us. When one is diagnosed with mesothelioma, its strange name can complicate the understanding of the disease.

However, if you understand the medical definition of mesothelioma, it may make it easier to say. Mesothelioma is derived from two medical terms. Mesothelium is the double-layer of flat cells that forms a protective lining of the chest, lungs and abdomen. Oma means tumor. So, a diagnosis of mesothelioma refers to a cancer or tumor of one of the protective linings in one’s body. For simplicity’s sake, I refer to it as “meso” because by doing so, it makes it easier for the patient or family member to talk to me.

When a loved one has been diagnosed with “meso”, the research of the disease normally becomes the responsibility of the spouse or other family member. You may find that even your primary care physician knows little about the disease. Years ago, few doctors even recognized mesothelioma as a specific type of cancer, often using the generic term of lung cancer when providing a diagnosis. In fact, the cancer mesothelioma was not even recognized until 1960, when Dr. J. C. Wagner made the link between exposure to asbestos and cancer of the mesothelium.

Today, because of a determined and dedicated group of people, many who have lost loved ones to meso, there is a concentrated effort to educate the public, government and medical community. There are many websites that explain in medical terms the definition of mesothelioma. But medical jargon is hard to absorb when one is forced to learn about the consequences of mesothelioma.

Years ago, I had the opportunity to speak with the grandson of man who had been diagnosed with a mesothelioma. The grandson called to ask me if he explained the disease correctly to his grandfather. This is what he told me.

"Pretend your chest is an egg! Visualize the albumen (egg white) as being the thin linings of the chest wall and lungs and the vitellus (egg yolk) as your lung taking in air and breathing. What happens when you boil an egg? Picture the boiling water as the cancer cells that are attacking the egg white making the tumor. As the egg white turns into the tumor, it makes it hard for the yolk (your lung) to function. The tumor gets bigger until your lung stops working."

Unfortunately, that is exactly what mesothelioma does. Abnormal and diseased cells of the mesothelium (the lining of the chest, lung and abdomen) rapidly divide and form a large solid tumor that invades or suffocates vital organs such as the lung and heart.

Lynn Collins has been helping mesothelioma patients and families for over 10 years. In this exclusive series she examines the book 100 Questions and Answers About Mesothelioma" by Harvey I. Pass, MD, Laura Roy, RN, and Susan Vento.