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If you have a specific question about mesothelioma, contact one of our specialists by using the form on the right! Also you can review the common questions below.

Mesothelioma FAQs

Can smoking cause or increase my chances of getting mesothelioma?

No. Cigarette smoking has no known causative effect on pleural mesothelioma. However, if you are a smoker, one of the best things you can do for your health now is to stop smoking.

Researchers have found that people who continue to smoke after a cancer diagnosis may have more pain than patients who have never smoked. In addition, the American Society of Clinical Oncology reports that smoking may reduce the effectiveness of cancer treatment.

Patients who continue to smoke and undergo surgery may have an increased risk of heart and lung complications, including increased problems from general anesthesia. Smoking is also known to impede wound healing and may increase the risk of wound infection.



What is pleural effusion?

Pleural effusion is the accumulation of fluid around the lungs. When the fluid contains cancer cells, it is known as malignant pleural effusion.

Fluid buildup restricts the natural movement of the lung, resulting in shortness of breath, a feeling of tightness in the chest, and pain. Pleural effusion is not a disease; it is a complication of an underlying disorder.

Most pleural mesothelioma patients have pleural effusion. To treat the buildup of fluid, a procedure called thoracentesis is performed. This must be done before further treatment can be administered. Draining fluid from the pleural cavity usually provides immediate relief of unpleasant symptoms.

Will I have to undergo chemotherapy treatment?

Chemotherapy is typically the primary treatment for patients diagnosed with lung cancer or mesothelioma. Chemotherapy is often recommended after surgery to try to destroy any remaining cancer cells. Some chemotherapy agents have shown to improve overall survival rates. Patients can expect to achieve a partial response or at least disease stability, although chemotherapy is not a known cure for mesothelioma.

Chemotherapy drugs are usually given in combinations of two or more during treatment. In 2004, pemetrexed became the first agent to get the U.S. Food and Drug Administration’s approval for use in combination with cisplatin. Since that time, pemetrexed-cisplatin combination has been considered the standard of care for malignant pleural mesothelioma chemotherapy.

Triple chemotherapy, however, or the use of three chemotherapy drugs, is also common. In fact, the results of a Phase 3 French clinical trial announced in May 2015 suggests that the pairing of pemetrexed/cisplatin with the drug bevacizumab (Avastin) has the potential to become the new standard of care for first line treatment of mesothelioma. In the French study, overall survival of patients receiving pemetrexed/cisplatin/bevacizumab was nearly 3 months longer than patients receiving pemetrexed/cisplatin, paving the way for a new treatment paradigm.

Other chemotherapy agents commonly used for mesothelioma treatment include doxorubicin, paclitaxel, and carboplatin. The ideal regimen for an individual patient is decided by that patient’s medical team and based on a number of criteria, including the patient’s age and health and the type of mesothelioma and cancer stage.

Are clinical trials beneficial to patients?

The National Institutes of Health (NIH) asserts that clinical trials are at the heart of all medical advances.

Clinical trials serve to uncover better ways to treat, prevent, diagnose and understand human disease. They provide researchers with critical information that allows them to move their findings from the lab to patients.

Deciding whether to enter into a clinical trial is a patient’s personal choice, and the benefits and risks should be carefully weighed. But it’s worth pointing out that patients with an incurable cancer like mesothelioma have more to gain than to lose by participating in clinical trials, which offer access to experimental treatments that aren’t otherwise available.

Clinical trials in the United States are strictly controlled according to federal safety guidelines meant to protect participants. There are, however, risks associated with clinical trials, including serious or life-threatening side effects. There are also no guarantees that the treatment will be effective.

Clinical trials managed through www.clinicaltrials.gov—the national registry of clinical trials for both federal and privately funded studies—are conducted in all 50 States and in 182 countries. Usually around 50 open studies for malignant mesothelioma are being conducted worldwide. Trial sites include the United States, the United Kingdom, Canada, Belgium, Israel, Germany and Italy.

If you are suffering from mesothelioma, check with your physician to determine if any current studies exist for your particular case. Participants must meet eligibility criteria to be considered for enrollment. Clinical trials also accept healthy patients to serve as a comparison group.

Is the stage assigned to my pleural mesothelioma important?

Yes. An accurate staging of your disease is needed to determine your prognosis and most effective treatment(s).

The treatment options are typically based on the extent of the cancer, which is determined by staging.  A localized cancer would be identified as Stage 1, for example, and can involve a surgically removable tumor.  Once the cancer cells have spread beyond that original location, and a higher stage level is designated, the mesothelioma is considered advanced and surgery is often no longer an option.

The most popular staging system used for pleural mesothelioma is the TNM System developed by the International Mesothelioma Interest Group. The letters TNM stand for Tumor, lymph Node, and Metastasis. This system is similar to the staging systems used for other cancers and can be summarized as follows:

  • Stage I. In Stage I mesothelioma, one side of the chest’s pleural lining (the pleura) has tumors. The cancer has spread to the outer lining of the lungs, but it is minimal. Cancer has not spread to the lymph nodes.
  • Stage II. Stage II mesothelioma is characterized by tumors on one side of the pleura. Tumors have spread to the outer lung lining, the diaphragm, or the lung itself.
  • Stage III. In Stage III mesothelioma one side of the pleura has tumors, and tumors have spread to the first layer of the chest wall, a single spot in the chest wall, the chest’s fatty parts, the heart’s outer layer, or any lymph nodes on the same side of the chest as the primary cancer.
  • Stage IV. Stage IV mesothelioma is found on one side of the pleura in addition to any of the following areas: the pleura on the other side of the chest, the chest wall, chest organs or any other organs in the body, the diaphragm, blood vessels, the spine, the nerves leading to the arm, or the lymph nodes on the opposite side of the primary cancer site.

Although the stage of the cancer is important in determining a patient’s prognosis, additional factors are also important when assessing life expectancy. The patient’s age at disease diagnosis, status as a smoker or non-smoker, mesothelioma type, the length of time between asbestos exposure and the onset of symptoms, a patient’s overall health, and other factors all play a role in patient outlook.

Is cryoblation an effective treatment for this type of cancer?

Cryoablation is a medical treatment used to kill cancer cells with extreme cold. The technique involves repeated freezing and thawing of targeted tissues. Visible tumor cells are frozen at the tip of a highly chilled probe and then warmed until they are killed.

The procedure is primarily used on patients with early stage prostate cancer, kidney cancer, and liver cancer. Cryoablation, however, is also used by some specialists in the treatment of mesothelioma in combination with other therapies.

A recent UCLA study found that cryoablation is effective against mesothelioma and is a particularly good option for patients for whom other treatment options are not viable. Another study published in the Journal of Vascular and Interventional Radiology concluded that cryoblation of localized malignant pleural mesothelioma is safe, effective, and improves overall survival.

How is mesothelioma diagnosed?

Malignant Mesothelioma is not easily diagnosed, further complicating treatment of a disease that is fast-spreading and resilient.

One of the first things patients experience is a dry cough and/or shortness of breath caused by a pleural effusion. Shortness of breath is experienced because the effusion (water around the lung) is pushing on the lung, making it difficult to breathe. Most patients presented with these symptoms receive initial treatment but the symptoms tend not to go away, or they may go away but only for a short amount of time.

When symptoms reappear after a few months, the cancer may already be advanced stage. Certain factors—such as a young patient, the absence of lung masses, or lack of a clear reason why the patient has a pleural effusion—are highly suspicious and warrant a more aggressive diagnosis. The earlier mesothelioma is diagnosed, the more varied the treatment options and the better the patient prognosis in most cases.

Most hospitals perform a thoracentesis (drainage of the lung with a needle), but 50 percent of these tests return a negative result. A more aggressive diagnostic approach is therefore recommended, such as a biopsy or a pleuroscopy (camera-assisted biopsy). Diagnostic imaging techniques (i.e. X-rays, CT scans, and MRI) may assist with diagnosis but only a tissue sample can unequivocally diagnose mesothelioma.

 



How can malignant mesothelioma be diagnosed early?

Malignant Mesothelioma is incurable, but early diagnosis expands treatment options and generally coincides with a more positive prognosis.

Putting aside for a moment the medical signs of mesothelioma, personal history can serve as an early warning system. Asbestos is the sole cause of mesothelioma, so if you or someone from your family worked with asbestos in the past, even if it was 20 to 50 years ago, you are at risk of developing mesothelioma and may want to receive regular imaging tests, which can indicate abnormal growths. Blood tests may also detect substances that, in high concentrations, are associated with mesothelioma, but this technique is in its early stages. Veterans in particular should be vigilant about testing, as one-third of all mesothelioma patients diagnosed in the United States are former military members.

Unfortunately, there is no procedure short of a biopsy that a person can undergo to see if they have this disease. Spotting early warning signs that prompt more aggressive diagnostics is therefore critical to early disease detection.

Pneumonia—or at least, what appears to be pneumonia—is one potential early warning sign. Mesothelioma patients are often initially diagnosed with pneumonia but they don’t get better. If you were diagnosed with pneumonia but aren’t improving despite following doctor’s orders, let your physician know immediately. Other symptoms to look out for are shortness of breath/difficulty breathing, a dry, painful cough, and fluid buildup (effusion).

When these symptoms are present you need to search for a clinician or a family practitioner that can be more invasive and aggressive in terms of testing. Often, physicians are concerned that performing an invasive procedure is going to increase patient pain and suffering, although this isn’t necessarily true. Specialists can do a biopsy today in an outpatient setting (in and out of the hospital the same day, with minimal pain).

When physicians do a puncture and drainage of fluid and the results comes back negative for mesothelioma, but the pleural effusion doesn’t go away, patients need to be assertive about demanding more foolproof testing, which in this case means a pleuroscopy, a CT-guided nano biopsy, or an ultrasound-guided biopsy. Only these methods can confirm—or refute—that initial negative diagnosis.

Concerned patients shouldn’t take “no” for an answer. You have much to gain—and nothing to lose—by aggressively pursuing diagnosis. The earlier mesothelioma is diagnosed, the sooner treatment can begin, and the greater your treatment options.



What steps can one take to receive the best treatment?

Patients need to search for centers that have experience treating mesothelioma and/or centers that are engaged in multimodality treatments. While newer treatments such as immunotherapy and targeted therapy hold promise, they are still considered experimental rather than standard treatment. It’s also important to know that not every patient receives the same treatment regimen. Based on your health, cancer stage, and other factors your medical team will customize a course of treatment.

Multimodality treatment consists of two or more of chemotherapy, surgery, and radiation. Several new treatments—including intrapleural/intraperitoneal chemotherapy, intraoperative radiation therapy, and platinum-based chemotherapy—are becoming more mainstream and changing the mesothelioma treatment paradigm. Both intraoperative radiation (local radiation delivered to the chest cavity) and intrapleural/intraperitoneal chemotherapy (a bath of warm chemo drugs applied to the cancer site) are what’s known as “local treatment after surgery.” That is, they are performed while the patient is still in surgery, after all visible cancer cells have been removed.

Dr. Marcelo DaSilva during a recent MesotheliomaHelp Q&A discussed how local treatment after surgery can make surgery more effective, but only after the initial task of tumor removal is performed. In other words, if doctors open up the chest and only apply chemo drugs or radiation, without taking out the tumor, there won’t be much effect on the cancer.

Heated chemotherapy and radiation are intended to treat cancer that can’t be seen and remains after surgery. Researchers still debate whether intraoperative chemotherapy or intraoperative radiation is more effective, with the question centering on the depth of penetration (chemotherapy has a depth at which it stops working, but not radiation, because the beams can penetrate all tissue layers). In the future intraoperative radiation may emerge as the more effective local treatment after surgery, but as things stands now, surgery, chemotherapy, and intraoperative chemotherapy are typically the best options.

Triple, platinum-based chemotherapy is another option. Platinum-based chemotherapy has been shown time and time again to be a safe and effective drug with good penetration. With platinum as a base, other chemo drugs are added to that foundation. Research shows that triple chemotherapy produces the best results for cancer across the board, whether it’s GI cancer, lung cancer, or mesothelioma.

Several other treatments are still in the clinical trial stage, notably immunotherapy and targeted therapy agents. Dr. DaSilva made the point that patients and patient advocates need to understand that trials are just that, and you shouldn’t replace multimodality treatments that are proven to work with a trial for a single, yet-to-be-proven drug.

Clinical trials play an important role in advancing disease treatment but aren’t necessarily the best treatment choice for all patients. If you’re not a good candidate for multimodality treatment—or if multimodality treatment fails and early cancer recurrence occurs—then you may want to consider a trial. But it is not recommended to participate in a trial as a first resort. Of course, patients are free to pursue the course of treatment that they want.



What do I need to do to participate in a clinical trial?

Patients who’ve decided they want to participate in a clinical trial still must be accepted into one. Each trial has strict inclusion criteria, or a list of characteristics that prospective study subjects have. Studies also have exclusion criteria that disqualify prospective subjects from taking part in the study. Prospective subjects must meet all criteria in order to take part in a clinical trial.

You will need to contact the study director of a specific trial in order to determine your eligibility for that trial. Find a trial near you by visiting www.clinicaltrials.gov. Each study lists a contact person who you can get in touch with to learn more.

The patient should be aware of additional treatment options. Taking part in a clinical trial usually does not make a patient a poor candidate for surgery and multi-modality therapies, although if you’re going to take part in a trial, the research doctors probably won’t want you to receive multi-modality therapy at the same time.

Also bear in mind that clinical trial treatment shouldn’t be your first treatment option. Doctors typically recommend that patients receive some combination of surgery/chemotherapy/radiation before enrolling in a clinical trial. While there are no guaranteed results from any course of treatment, standard treatments have a more proven track record of shrinking tumors and prolonging survival than the experimental treatments administered in clinical trials.



What recent progress has been made in treatment?

Mesothelioma patients are beginning to survive longer as researchers focus on finding effective treatments by turning to immunotherapy and targeting genetic characteristics of the disease. Numerous clinical trials are being conducted in the U.S. and abroad, giving the mesothelioma community hope that a treatment breakthrough is on the horizon.

Some of the more promising new mesothelioma treatments are described below.

Immunotherapy. The U.S. Food and Drug Administration granted accelerated approval to Merck’s Keytruda (pembrolizumab) for treatment of patients with advanced or unresectable melanoma. The immunotherapy drug is now on trial in the U.S. and Europe for mesothelioma patients and has shown promising results in trial participants. One UK participant and six-year mesothelioma survivor, Mavis Nye, has seen over 70% shrinkage of her pleural mesothelioma tumors in a year of treatment with the drug, known as MK-3475 in the UK.

In a U.S. clinical trial researchers reported an overall disease control rate of 76% for mesothelioma patients receiving the drug. These results are “encouraging”, says Dr. Evan W. Alley, MD, PhD, and co-director of the Penn Mesothelioma and Pleural Program at the University of Pennsylvania.

Another immunotherapy drug, GL-ONC1, in clinical trial in the U.S. with mesothelioma patients (as well as other types of cancers), demonstrated good safety and effectiveness against tumors. The researchers concluded that GL-ONC1 has the potential to effectively treat a range of cancers, including mesothelioma. The drug, say researchers, which activates the immune system against cancer, targets and destroy cancer cells without harming healthy cells.

Chemotherapy. French researchers report that patients with mesothelioma who were treated with the combination chemotherapy regimen of pemetrexed/cisplatin, a standard of care for many mesothelioma patients, along with bevacizumab (Avastin) saw significantly longer survival. The results of this trial were so striking that the researchers believe they have found a “new treatment paradigm” for malignant pleural mesothelioma. Avastin is currently used in the treatment of numerous cancers, including certain lung cancers.

Surgery. For patients with resectable mesothelioma, there are two primary surgical options: extrapleural pneumonectomy (EPP) and pleurectomy/decortication (P/D). Both surgeries require good patient health and an extended recovery period, leading some patients to forego surgery altogether. But researchers now report that in comparison with no treatment for mesothelioma, surgery alone was “independently associated with significantly longer survival.” They added that surgery-based therapy is still the “cornerstone of treatment for this challenging disease.”

In other studies, researchers found that when oncologists added radiation as a treatment modality, either before or after EPP, it was safe and well tolerated in malignant pleural mesothelioma patients, and patients showed improved outcomes.

Early Detection. Mesothelioma has an extremely long incubation period, and the cancer is typically only detected after symptoms become life threatening. At this late stage treatment options are limited. However, researchers report they may be able to detect cancer years before patients or their doctors realize it is growing inside them. The researchers looked at people with cancer cells growing in them and found that their DNA strands demonstrated an accelerated aging process not present in comparably healthy people. They anticipate this can be used as a predictive marker for cancer.

Although these studies all show promise in the treatment and survival of mesothelioma patients, they are still in clinical arenas and it could be years before they are available to mesothelioma patients.

Check with your doctor to determine whether any of these treatments or clinical trials are available to you.

What percentage of people who are exposed to asbestos come down with mesothelioma versus those who don’t?

Editor’s Note: This question was posed to Dr. DaSilva in the live Q&A. The answer is adapted in part from his response.

The majority of people who are exposed to asbestos don’t develop mesothelioma, and yet everyone diagnosed with this cancer was exposed to asbestos.

In other words, statistics say that if 100 people are exposed to asbestos, roughly 10 of them will develop mesothelioma. But if you look at people who have mesothelioma, virtually all of them were exposed to asbestos.

An analogy can be made to cigarette smoking and lung cancer: not everyone who smokes develops lung cancer, but most people with lung cancer smoked.

Research suggests that some people have a genetic predisposition to developing mesothelioma from asbestos exposure. A study funded by the National Institutes of Health (NIH) discovered that people with a mutation in a gene known as BAP1 are more susceptible to developing mesothelioma and other cancers. Mesothelioma-specific mutations have also been identified in the NF2 and LATS2 genes.

Research has not been able to determine, however, what percentage of the population may be predisposed to mesothelioma. Genes alone, moreover, cannot account for mesothelioma. There still needs to be asbestos exposure. For some people, one-time exposure is sufficient to change cell development and lead to mesothelioma. Others may develop mesothelioma after multiple exposures, while some are exposed repeatedly and never develop mesothelioma.

While the discovery of a genetic component to mesothelioma may help to identify people who are at high risk for the disease, it does not change the fact that asbestos is the only known cause of mesothelioma, and it does not let asbestos companies off the hook for making products that kill an estimated 12,000-15,000 Americans each year.



What is the difference between extrapleural Pneumonectomy (EPPs) and pleurectomy/decortication?

Editor’s Note: This question was posed to Dr. DaSilva in the live Q&A. The answer is adapted in part from his response.

Neither treatment fits all patients in all circumstances, because every patient and every mesothelioma case is different.

There are passionate advocates of extrapleural pneumonectomy (EPP) and passionate advocates of pleurectomy/decortication (P/D). Given patient selection appropriate to the disease stage and the best treatment for that patient, there isn’t any significant difference in terms of overall survival outcome.

For example, a young patient with early stage mesothelioma and good pulmonary function could benefit from extrapleural pneumonectomy, whereas an elderly patient with poor pulmonary function might not do as well with EPP. Again, it’s all about selecting the right patient for the operation.

Your treatment specialist can discuss with you which surgical procedure, if any, is appropriate for your disease stage, overall health and performance status. Also keep in mind that there are surgical options in addition to EPP and P/D that might be more appropriate for you.

 



My father was recently diagnosed and I would like to know what my family can do to assist him.

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The answer is adapted from their response. Watch the video to hear Ellie and Lisa’s word-for-word response.

Question: My father was recently diagnosed with Mesothelioma and I would like to know what my family can do to assist him. What should we expect in the coming months?

Besides providing caregiver support to a loved one with mesothelioma and getting him or her seen by a specialist, focusing on nutrition can make a positive difference. Patients get nutritionally depleted very quickly, so if you can maintain a healthy diet and keep their weight up, it will help them stay as healthy as possible.

As a care giving team, another thing you and your family can do is to keep a notebook that tracks important events, appointments, milestones, your father’s condition, etc. A written record can cut down on the confusion that comes with coordinating multiple medical professionals and treatments. For example, you might note that your father was diagnosed with mesothelioma in September and started chemotherapy in October. You might also make daily or weekly notes of how your father is feeling. That way, you can accurately track whether his health is improving or worsening. Putting everything into a notebook will make it easy to refer to information at a later time.

It can also be helpful to have a centralized source of information for concerned friends and family. When a loved one is sick there can be a constant stream of visitors to the treatment center as well as people calling on the phone to check in on the patient. Understandably, they want to know how the patient is doing, but this can create additional stress for the primary caregivers.

A website called CaringBridge allows you to post daily updates that people can see online, in one place. Posting a regular blurb–i.e. “got their second round of chemo today and is doing well, hasn’t lost any weight”–can eliminate the need to update each concerned person individually while still keeping them in the loop and the support network connected.



Are you aware of any treatment by a doctor, where they look for Bio-Markers when deciding a treatment plan?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The answer is adapted from their response. Watch the video to hear Ellie and Lisa’s response word-for-word.

Question: Are you aware of doctors checking for specific biomarkers before prescribing a mesothelioma treatment plan?

Personalized treatment of cancer and other diseases may one day be realized, and exciting new research is building on scientific discoveries of recent years that could make it possible to tailor treatments to the unique genetic characteristics of each patient and that patient’s cancer. As of right now, however, personalized medicine remains an emerging field with many knowledge gaps.

A precursor to personalized medicine (sometimes called precision medicine) is targeted therapy. Targeted therapy is the use of cancer drugs that attack cancer by honing in on specific cancer cell functions. Older cancer drugs acted against healthy and cancerous cells without much distinction. Targeted drugs may produce fewer toxic side effects than their predecessors, but they are still not tailored to an individual patient’s tumor or genetics.

According to the American Cancer Society, truly personalized medicine currently has three meanings:

  • Tumor testing to determine the efficacy of different treatments;
  • Analyzing a patient’s genetics to see whether a certain medicine will be well-tolerated;
  • Performing genetic testing that looks for mutations that put the patient at a higher risk for developing a type of cancer.

Of these three, there is at least one definitive finding that relates to mesothelioma. In a 2011 study funded by the National Institutes of Health (NIH), researchers found that people with mutations of the BAP1 gene were predisposed to mesothelioma and other cancers. This finding helps to explain why not everyone who is exposed to asbestos develops mesothelioma and makes it easier to identify those people at greatest risk for developing mesothelioma. Related findings are reported in the Annals of Cardiothoracic Surgery.

Through additional research, more personalized mesothelioma treatments may one day be available. Some of the most promising research is being performed in clinical trials. To find the latest on what trials are being conducted for mesothelioma, go to www.clinicaltrials.gov and plug in the search term “mesothelioma”. You might also consider participating in a clinical trial. Study volunteers are in high demand and needed to drive further treatment innovations.

Other good sources of information about patient-specific cancer include your doctor and treatment team, the American Cancer Institute (here, here, and here), and the MesotheliomaHelp blog. Our writers constantly provide updates with the latest mesothelioma treatment news (for example, check out this post about “Laboratory in a Patient” personalized therapy testing), so check back regularly to read about new developments.



I have read about palliative care and preparing for end of life. Where can I find palliative care and what should I know about it?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The answer is adapted from their response. Watch the video to hear Ellie and Lisa’s verbatim response.

Question: I have read about palliative care and preparing for end of life. Where can I find palliative care and what should I know about it?

The first thing to keep in mind is that the need for palliative care isn’t necessarily associated with the end of life. Palliative care is the control and management of symptoms. It’s intended to make people feel as comfortable as possible with the mesothelioma symptoms they’re experiencing, such as shortness of breath and chest pain.

As far as where and how to receive palliative care, many hospitals and medical facilities now have a pain and palliative care department. Often times, when someone is diagnosed with mesothelioma, the palliative care department is part of the patient’s medical team along with the medical oncologist, the surgeon, and whoever else comprises the team. Palliative care providers develop a relationship with patients and learn what does and doesn’t relieve their pain. They’re a great asset to your overall care. Oncologists work closely with the palliative care department and should be able to tell you about the palliative services available at your treatment facility.

Don’t forget, however, that when it comes to your pain, you’re the expert. You need to do as good of a job as possible in explaining your symptoms to a palliative specialist so he or she can develop a regime that provides relief. To this end, keeping detailed notes of your condition is useful. For instance, write down when the pain started, how long it lasted, and when it was the worst. Being an active part of your care by transcribing details such as these will help specialists to better help you.

In addition to alleviating the physical pain associated with this cancer, palliative care can help ease the psychological pain—the stress and anxiety—of your disease. For example, you might feel anxious when you get short of breath, which can make the shortness of breath worse. Palliative care specialist can teach you methods for controlling anxiety and other psychological symptoms that can exacerbate physical symptoms.

Another specialist who can help you with non-physical issues is a social worker. This person can sit and talk with you, figure out where you’re coming from emotionally and what you’re going through. He or she can also help with logistics such as securing lodging near your treatment facility and whatever else you need help with. The more support you have, the smoother your journey is going to be. Hospitals and medical centers often employ social workers.



What are the side effects of radiation treatment?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s complete response.

Radiation is one of the primary treatments for mesothelioma. It is used to control the growth or spread of the cancer and to reduce pain and other symptoms. Although there have been significant advances in the technologies used for radiation therapy, making it safer and more focused on the targeted cancer cells, Lisa Hyde-Barrett, a 25-year mesothelioma nurse, says, “it can be very difficult, very grueling.”

Radiation therapy can be used for two different reasons: adjuvant therapy or palliative therapy. The goal of adjuvant therapy is to kill any small area of cancer that cannot be seen or resected (removed) during surgery. After a patient has recovered from surgery, radiation may be the next step in his or her treatment program. It has been shown that radiation can reduce the chance of chest wall cancer recurrence and can also provide local control.

Radiation therapy can also be used to treat symptoms such as shortness of breath, pain, bleeding and trouble swallowing. When used this way, the treatment is considered palliative. Radiation therapy uses high-energy X-rays or particles to kill cancer cells. One of the difficulties with using radiation is avoiding healthy nearby tissues. Mesothelioma can affect the lungs, stomach or heart, and side effects vary depending on the site of treatment.

Eleanor Ericson, who was worked as a nurse for over 30 years, stresses that although radiation is often prescribed, it is not a “one size fits all” approach to mesothelioma treatment. Not every patient will be prescribed radiation therapy and not every patient prescribed the treatment will realize benefits from it.

The most common side effects of radiation, regardless of the area treated, are fatigue, nausea and “sunburn.” Radiation is typically administered five days a week for up to six weeks, and the side effects usually start after several treatments and continue, or worsen, throughout the duration of the therapy. Eleanor says that in her experience fatigue often hits on the third week of treatment, and then, it can be “overwhelming fatigue.”

There are medications that can help to combat the nausea. The key to beating fatigue is for patients to keep up their nutritional needs as best as they can and to get plenty of rest. If possible, patients should plan their day to include rest in-between bouts of activity. Lisa says that sometimes the burning of the skin can be so bad that it may be “like the worst sunburn of the patient’s life.” Your doctor may prescribe pain medicines, steroid creams, or a topical cream to help alleviate the pain. Burns should clear up post-radiation, although some patients report long-term skin issues.

The most important thing patients can do is to keep the medical team apprised of all symptoms experienced during radiation treatments. They may be able to adjust your treatments or medication to help ease the side effects.

“Radiation isn’t easy by any stretch, but it does help quite a bit in palliative care,” says Lisa.

Should I be worried about getting mesothelioma if I worked with asbestos?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s entire response.

Not everyone who is exposed to asbestos develops mesothelioma, but virtually all mesothelioma patients were exposed to asbestos. An estimated 30 million Americans have been exposed to asbestos—the only known cause of mesothelioma—over the years, but only around 3,000 cases of mesothelioma are diagnosed annually in the United States.

Anyone with known asbestos exposure can undergo routine chest X-rays to check for evidence of abnormal growth. While X-rays aren’t a surefire way to catch mesothelioma or lung cancer early, doctors may be able to spot something unusual. You should also be on the lookout for symptoms such as shortness of breath, coughing, and pain in the back or chest that signal the onset of mesothelioma. If you were exposed to asbestos (or think you may have been) and are experiencing any of these symptoms, visit your family doctor and let him or her know of your concerns.

Researchers have begun to investigate the role of genetics in a person’s susceptibility to mesothelioma and other diseases. Past research has focused on the genes BAP1, NF2, and LATS2. A clinical trial is currently underway to investigate whether there is a genetic component that puts people at a higher risk of developing mesothelioma. The trial is based on the past finding that there is a strong tendency for mesothelioma to run in families. Genetic findings may allow researchers to develop a more accurate method for diagnosing mesothelioma early. Mesothelioma blood tests currently exist, but aren’t overly reliable for diagnosing the disease on their own.

People who aren’t sure whether they were exposed to asbestos but suspect they might have been should also be vigilant about the risk of mesothelioma. Most at-risk for the disease are trade workers such as insulators, plumbers and pipefitters, electricians, sheet metal workers, auto mechanics, refinery and factory workers and shipyard workers.

Military veterans are also at a greater risk of asbestos exposure. Some soldiers worked in close quarters such as ship engine rooms where loose asbestos fibers circulated in the air. Asbestos was widely used in the military between the 1940s and 1970s in equipment in boiler rooms and engine rooms of ships as well as in numerous products, including gaskets, pumps, valves, boilers and turbines.

Remember that asbestos-related diseases have a long latency period, and many people do not develop mesothelioma until decades after exposure to the carcinogen. The U.S. Environmental Protection Agency reports that there is no safe level of asbestos exposure, leading to a life-long risk of developing mesothelioma.


What will the next 12-18 months look like for someone who has been recently diagnosed?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s entire response.

There is no way to sugarcoat the devastating impact a mesothelioma diagnosis will have on a family. Jennifer Gelsick, who lost her father nearly two years after his mesothelioma diagnosis and chronicled her journey on “Faces of Mesothelioma,” said, “The day that Dad was diagnosed was the worst day of my family’s life.”

But, everyone deals with a cancer diagnosis differently, and everyone’s case is unique, so while nearly all families will have to deal with the initial blow, once the shock wears off and treatments and care begins, their paths begin to diverge.

Eleanor Ericson, a nurse with more than 30 years of patient care, says that the treatment plan will depend on the stage of the mesothelioma, the type of mesothelioma, the location, whether it has metastasized, and, she says, “a lot it depends on the functional status of the patient.” Eleanor adds, “Every situation is unique; everybody’s treatment plan is going to be unique. The next 12-18 months is going to look different for every single mesothelioma patient.”

The first few weeks after a diagnosis will be filled with phone calls to and from family and friends, frantic internet searches, medical tests, doctors appointments, long discussions and many late, sleepless nights.

The patient will turn to the medical team and his or her family to help decide treatments. Lisa Hyde-Barrett, who is also a nurse and has over 25 years of experience, suggests to family members that whatever the patient decides in terms of treatment, “it’s good to be with them…and support them.” She also emphasizes that, “Everybody’s situation is unique. Everybody’s treatment plan is going to be unique.”

The patient’s treatment plan will drive the course of the next few months. For example, Amanda, whose father passed away after a two year battle with mesothelioma, wrote on her blog that her father went through seven months of treatment for his pleural mesothelioma, treatment that included surgery, rehabilitation, chemotherapy, and radiation therapy. However, once back home after his initial radiation treatment he was “back to living life as normal as possible.”

If a patient undergoes mesothelioma surgery, he or she may spend up to several months in the hospital and a rehabilitation center recovering. Once home, the patient will have limited movement and may need another several months to fully recover. A caregiver will be needed to provide general care and meals, to help manage medications and ongoing medical care, and generally ensure the patient is safe and well cared for.

Chemotherapy and radiation are two other standards of care for mesothelioma. Both of these are given on an outpatient basis, but getting the patient to and from appointments will require support from a family member or friend. Both of these treatments come with their share of side effects—nausea, loss of appetite, hair loss, fatigue—and the patient may feel run down and weak for some time during and after treatments. During this period, a caregiver will need to help them with daily tasks, monitor their condition, provide proper nutrition and keep them comfortable. Some days the patient may not want to get out of bed, and other days he or she may be up and about.

Some patients will bounce back quickly and be able to go out for walks, prepare meals and enjoy going about their daily routine as if they were not fighting cancer. However, complications can arise, and throughout the mesothelioma battle infections, viruses and other health issues can land the patient in the emergency room or back in the hospital. Often, though, setbacks are followed by weeks or months of routine days where the patient can live their lives as they want, perhaps working, traveling and spending time with their family.

Mesothelioma is challenging to treat and is notorious for recurring. If that does happen, any or all of the above treatments may be repeated. Dealing with the cancer is hard enough, but a setback can leave the patient feeling depressed. Friends and family members should let the patient talk about his or her needs and be there for them as much as possible.

These 18 months will be difficult. There will be ups and downs, successes and failures, tears and smiles. It is hard to find a bright side to mesothelioma, but Jennifer said, “Going through something like this brings you closer to those you love, makes you realize what’s important, and allows you to cherish every moment.”

How can I help someone who was recently diagnosed?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s entire response.

There are many ways you can help someone diagnosed with mesothelioma, including getting the facts, seeking out excellent care, and simply being there for the person.

In the beginning, be positive and seek out factual information on the disease. Knowing what you’re up against will help you to take meaningful action. Look at clinical trials, treatment news, palliative care and new developments in the mesothelioma world—progress is being made all the time. Find some support groups for your loved one and consider attending a conference, such as the annual conference held by the Mesothelioma Applied Research Foundation. The American Cancer Society is another good resource for cancer patients.

The internet is a good starting point for your research, but don’t limit yourself to online resources. Get to a mesothelioma specialist as soon as possible. You may have to travel a bit to find the best care, but financial help for travel expenses is available. While you may know little or nothing about mesothelioma, a rare cancer that only affects 3,000 patients a year, a specialist works with the disease every day and is surrounded by a team that can support you and your family. If you’re feeling pessimistic, they can balance this with a realistic outlook based on the best available care. Nobody can face mesothelioma on their own; you’ll need to surround yourself with knowledgeable and compassionate people.

In addition to arming yourself with knowledge about the disease and treatment options, simply being there for a loved one can make a huge difference. Lisa Hyde-Barrett says that, “it is not the words that help a patient, it is just being present and listening to what the patient is going through that is helpful.” Although you might want to reassure the patient, saying something like “everything will be ok,” resist the impulse to minimize what the patient is going through.

The little things make a big difference, like bringing the patient dinner, flowers, a gas card or walking their dog for them. Talking to other friends and families to help coordinate caregiving and other assistance can help ease the burden placed on loved ones.

Cancer is a life-changer, but it doesn’t change who the victim is. Try to maintain normalcy as much as possible. Treat your friend or loved one the same as before, because they do not want their illness to change their relationships. If you used to go out for a Friday night burger, keep inviting them. While they may not want a burger, they may just want the normalness back and will go for a ride just to get out and to enjoy your company.

Communication is key. Ask the person directly if there is anything you can do for them, and let them know that you are there if they need anything. They may be embarrassed or intimidated to ask for help as their health declines, but being able to lean on friends and family is important for them to get through each day.

Finally, be persistent. Check in with the patient from time to time. Just because initially they said they did not need anything doesn’t mean they won’t welcome your offer later.


Who can I get to help me after my surgery?

Editor’s Note: This question was posed to nurses Eleanor Ericson and Lisa Hyde-Barrett during a live Q&A. The following answer is based on their response. Watch the video to hear Ellie and Lisa’s response in its entirety.

Recovering from surgery is difficult and challenging, but it is vital that you take it easy, listen to your doctor’s orders and not overdo it as your body heals.

Your recovery path will be as individual as your treatment plan. Some patients might stay in the hospital 2-3 days, others for 2-3 weeks. Some might require a stay in a rehabilitation facility to help recover their strength after surgery, while others can recover post-surgery at home with limited help from a caregiver.

But in one form or another, you will need help and support, and knowing where to turn before you have your surgery will better aid your recovery. There are many factors that come into play when assessing recovery options, including insurance coverage, financial circumstances, family availability and capability, and patient function. These are all unique to an individual and should be looked at closely.

Your care needs will change as time passes. Lisa Hyde-Barrett, a mesothelioma nurse, says the best-case scenario is to stay at the hospital for as long as the medical team recommends. More than likely, you will then be moved from the hospital into a rehabilitation facility, often called a step-down unit, for continued medical support.

During hospitalization you may be confined to bed and require constant monitoring. Once in rehab, you will begin moving around a little bit more, but support from a trained medical team may still be critical. When you return home, you will have orders such as maintaining an activity level, performing breathing exercises, and getting proper nutrition. Your caregiver may need to help you with all of this as well as helping you to shower, dress and get up and down.

Caregiver options that may be available to you once you leave rehab are:

  • Spouse
  • Family member
  • Friend
  • Paid in-home nursing care
  • Paid in-home care (non-medical)
  • Out-of-home daycare (such as senior centers)

Work with your medical social worker for references and assistance.

If you will be counting on a family member to help you, ensure that he or she has the availability, skill and desire to assist you—and that you trust them with your care. Have them accompany you to your pre-surgical and post-surgical medical appointments so they can understand their responsibilities. To help you and your designated caregiver, it is also a good idea to have a backup available who is also well-informed.

Once you begin feeling better and moving around  you may want to get out more. You may be able to call on friends to take you out for a drive or a coffee. You may also have someone take you to the local senior center where the staff and guests can offer companionship, meals and minor care.

There are a variety of options that can work for you, but the important thing to keep in mind is to do your homework and prepare for your care. Your medical team can offer guidance, but you know your preferences and situation best, so select your care based on personal needs and resources.

Ellie and Lisa stress that help is available for patients who need it. You can ask their advice directly by submitting a question through Nurse’s Corner.

Caregivers or caregivers-to-be can get support from the Family Caregiver Alliance.

About the Author - 

Lisa Hyde-Barrett has helped ease the stress of patients and their families by offering a comforting hand. Lisa has 25 years of experience as a thoracic surgery nurse. She is passionate about helping the mesothelioma community.

Published:May/05/13 - Updated:Jul/16/15
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