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Timely Diagnosis

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When you are focused on something for a period of time sometimes you can lose perspective. For the past 10 to 15 years’ experts have been recommending that when diagnosed with malignant mesothelioma that you seek out an experienced medical team at a center for excellence- a team that is involved with research, and can give you your best options. Since this message has been around for the past 15 years or so, it was surprising to read a recent study on what the treatment patterns of patients diagnosed with malignant pleural mesothelioma actually are. The study is a reminder of the difficulty in diagnosing malignant pleural mesothelioma. In addition to the diagnosing challenge, the importance of encouraging patients to seek further treatment needs to be re-enforced.

A recent retrospective study concentrated on the treatment patterns of patients with malignant pleural mesothelioma. Led by Dr. Marjorie G. Zauderer, MD, MS, Co-Director of the Mesothelioma Program at Memorial Sloan Kettering Cancer Center in New York, the abstract was presented at the 2017 ASCO Annual Meeting:” Patterns of comorbidity, treatment, resource utilization, and referral in malignant pleural mesothelioma patients in the U.S.” The study used the Market Scan insurance claims database of patients diagnosed with malignant pleural mesothelioma between January 2004 and December 2015.

The patients were 65.4 percent male and 34.6 were females. The average age was 71 years old. The conditions that they had before diagnosis were chronic pulmonary disease 20.7%, metastatic solid tumor- 17.5%, and diabetes 15.4%.

For treatment, the study found that 51.2% had no chemotherapy, radical surgery was utilized only 4.1% of the time.

The most common diagnosis that patients received at the beginning was pleural effusion-16.6%, chest pain 10.7%, shortness of breath 9.6%. and cough 8.5%.

The time that a patient presented to his MD with lung related symptoms and a diagnosis of malignant pleural mesothelioma was a median time of 77 days. Times ranged from 23 days to 258 days.

Malignant pleural mesothelioma is an aggressive cancer, although there is no cure currently, there are treatment options, that can improve a patient’s quality of life. When there is a delay in diagnosis, treatment options can be limited.

This is a very interesting study and shows there is still much work to be done, and education in order for patients to have the most updated treatment options, in a timely manner.

– Ellie

Orientation Meeting

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We routinely attend a new patient orientation at the hospital where we work. It is a very well-planned meeting that is designed to give an overview to patients and families on the diagnosis, the supports available, the program, and the logistics of being a patient.

At a recent meeting involving patients that are newly diagnosed with malignant pleural mesothelioma it struck me how difficult it is to know who is the patient. A room full of people and 3 or 4 are the patients. The roles of the family members and the patients are new identity’s taken on in a place that is new to them, with medical language that includes long words and confusing answers. The diagnosis of mesothelioma usually takes place after much more common diseases have been ruled out. At this meeting the patients and families learn about the logistics of being a patient. Housing options, parking availability, support services, a lot of information presented in a short time. They also learn about the disease itself, statistics, research, and a general overview of the history of the program. A lot to take in for anybody. Sometimes these meetings are the beginning of relationships with other families, friendships out of a devastating illness, in a foreign place, with confusing medical words.

What does the mesothelioma patient look like? At the beginning of the journey the newly diagnosed patient looks like everybody else. There are no visible identifiers. Most are healthy looking people of all ages, shapes, and sizes.

What do the caregivers look like? At the beginning they look like everybody else. They are all different ages, shapes and sizes.

Mesothelioma can affect anybody and does. The toll it takes is evident as the journey goes on. For the patient, some of the physical effects are the weight loss, and other various things that come up that need to be attended to. As the journey goes on it can be easier to recognize the family members as the stress is more pronounced on them. A lot of the time the caregiver is the one that looks different. Weight loss, tired looking, ageing as the journey continues.

On this day I was only able to identify one of the three people in the room as patients. The other two looked too healthy to have mesothelioma.

One of the mesothelioma patients described his journey to this point as “starring in a horror movie that you cannot wake up from.” The other two patients quickly agreed, you could feel the connection starting between the three.

This meeting is a stop on the journey, a stop that can include the beginning of new relationships and support throughout the challenging days ahead.

– Ellie

Reactions

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This past week Senator John McCain was diagnosed with brain cancer. The type of cancer he has is aggressive. Much like mesothelioma, he has treatment options and it is reported that he is weighing which one he will choose. The news was received with people wishing him well and urging him to fight on and that he will defeat cancer. Whatever course of treatment he chooses everyone wishes the Senator well. A few days after the announcement the Senator was back at work in Washington. Doing what he wanted.

“You beat cancer by how you live, why you live, and the manner in which you live.” Stuart Scott the late anchor on ESPN, said in a speech while accepting the Jimmy V Award for Perseverance in July of 2014. When diagnosed with a life-threatening illness what do you do? What do you want the closing chapters of your life to look like? How do you want to spend your days? What is important to you? Do you want to explore every possible treatment option? How do you want to spend your time?

Although it might seem that at this point in your life you have no control, that cancer has taken that away from you, it could be offering you the time to decide what is most important to you. To reflect on what is important to you and what is not important.

Recently a patient was dying in the hospital and wanted to go home. Every minute was important to her, she wanted to spend her time with her family. She was undergoing a palliative procedure done in order to make her more comfortable, the procedure was a success. She felt physically better, mentally her anxiety was high- she equated the two hours invested in the procedure as hours better spent with her family. She was discharged immediately after the procedure, she will not return. She has chosen to spend her remaining time at home with her loved ones.

In addition to dealing with your own mortality you have to deal with other people’s reactions to your news. Well-meaning people will tell you stories of other people they knew or possibly themselves who faced cancer and what happened to them. These stories and well wishes are told to boost your spirits and offer support, and sometimes they do. Every person’s life is unique, everyone has their own story to tell, from their own unique perspective.

Regardless of the outcome of Senator McCain’s treatments he has already won at life. He is living his life on his terms. His life of service to our country and the manner in which he has conducted himself throughout his life is a testament to life. As his own unique journey with brain cancer begins, we offer him our support.

– Ellie

Mesothelioma Centers of Excellence

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Since the late 1990’s into the early 2000’s mesothelioma Centers of Excellence have been in existence. The centers offer experts in mesothelioma from many different disciplines. Since mesothelioma is a rare disease it is recommended that once diagnosed you or your loved one seek an opinion with the experts at one of the centers across the country.

Receiving a diagnosis of mesothelioma is life altering physically and emotionally. Recently I have been speaking with patients and seeing posts from patients and the one common denominator is that they have hope. Many people have come from a place where they have been told there is nothing to offer. The patients and families are told to get their affairs in order. There are physicians who still believe there is no hope for mesothelioma patients, some have very limited experience with mesothelioma patients. Hope is not in the equation.

The advantages of going to a mesothelioma center include possible treatment options. Recently I saw a patient who was deemed inoperable twice by two different physicians, and now is having a treatment plan formulated by his team, which will possibly include immunotherapy. He continues to have hope on his journey. Another patient who was inoperable 2 years ago is going to her native country for a visit, a visit that she has put off for 2 years due to her illness. Patients are pushing forward and not giving up despite what they had been initially told. There is no cure for mesothelioma, patients continue to die from this disease, but there are options to improve quality of life and physical symptoms.

Getting to a mesothelioma center, can be expensive. Some centers offer assistance and there are resources available to help defray the cost. A mesothelioma center is different from your local doctor’s or oncologist office. The center includes a team of professionals including surgeons, oncologists, pulmonologists, research doctors, radiologists, nurses, social workers and patient advocates. These professionals collaborate with each other on each case. Years of education and experience is the heart of the mesothelioma center. The professionals have a plan for each patient, based on the individuals stage of disease, functional status and overall health.

If you or your loved one is diagnosed with mesothelioma strongly consider going to a mesothelioma center. Your options might be different than you think!

– Lisa

Active Listening

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We have noticed over the years of talking with mesothelioma patients and their families that mesothelioma is an insidious disease. We have educated ourselves through seminars, speaking with patients, and general observations. There are some important factors that mesothelioma patients have taught us that you will not learn in a book, or in a webinar or a class.

What do mesothelioma patients need? Often it is the most basic of elements that make the difference. First is to become an active listener. Active listening is a popular phrase in our society. It implies that the person doing the listening fully concentrates, understands, responds, and then reacts. It requires a skill that is not commonly practiced in today’s busy world. Every patient and most caregivers would like to be heard. Not only do they want to tell their story but they want to express their emotions about this new found condition. Many people need an open-ended question to start the ball rolling. Telling your story aloud validates what is happening and allows the story to become real. Retelling the events that led up to the position you are now in, becomes true or actual. Saying it aloud, allows it to confirm it exists and not be imaginary, all those physical symptoms that you were unsure if they were your imagination or attributed to the aging process now have a name.

One of the most challenging topics that we engage about in conversation is death. It is an uncomfortable topic. Many times, the patient or caregiver will want to talk about anything else but this topic. It becomes a topic to be avoided. Allowing a person to talk about their final stage of life allows the person to have a platform to speak about a situation that is uncomfortable for most people. Often, we hear comments such as “that won’t be you,” or “don’t be negative,” these comments are meant to be helpful, but can shut down the conversation. We must allow patients to talk about this time of their life. There is no timeline in life for this conversation, some might feel that after being diagnosed or before deciding on a treatment regime is too quick, there is no best time. Just have the conversation. What do you or your loved one want? What is acceptable to you? How would you like to live out your final days?

There is a balance that must be achieved. By having the conversation you are not going to quicken you or your loved one’s death nor by not having the conversation you or your loved one will not live forever. It is important to realize that there could be many days, months, or years living with mesothelioma and enjoying life. Each of us is on our own unique journey, complete with great days and not so great days. Death is something we cannot control as all of us will experience it.

Talking about our wishes does not mean that you are giving up. It does not imply that you and your mesothelioma team will not continue to fight against this disease and explore any options to a better quality of life. It acknowledges that your journey will bend as all our journeys do.

There is an excellent book, “Being Mortal,” by Atul Gawande that explores this topic. There is also an active movement called www.theconversationproject.org that supplies, guides, and information on addressing this issue.

– Ellie

The Importance of Listening to Mesothelioma Patients

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As anyone who has ever spent time at a busy hospital knows, your appointment time and the time you are seen are sometimes hours apart. Reality and schedules do not often keep together. Over the years, I have seen many reactions to a delayed appointment and the range of emotions are as varied as the patients. No one likes to wait. Everyone’s time is important. Despite the efforts of many time management consultants, multiple new on time initiatives it remains a problem. One of the root causes of the problem is that you are dealing with people. The procedure that is scheduled for 45 minutes’ turns into an hour when an unexpected finding requires consultation with other experts. Patients are not kept waiting intentionally but it happens. Occasionally the system can work, and at that point it is important to remember why the health care team needs to actively listen to each patient and their individual needs.

It was 1:40 p.m. on a busy Friday afternoon. The next patient was scheduled to be in the room undergoing a palliative procedure that sole purpose was to make her feel better. She had flown in to have the procedure done and had a flight out at 5 p.m. There was eye rolling by some, mumbling by others, but some members of the team took it as a challenge. ” We will make this happen,” the nurse assured the patient. ” You will be in an Uber by 3:30 on the way back to the airport. ” This patient had a biopsy earlier in the week and the results would not be back for another week. She had been fighting cancer for several years and now it had started down an aggressive path. As she told her story from start to finish, it occurred to the nurse that her business-like attitude of not taking no for an answer, was the way she was fighting her cancer. It was not so much that she makes the flight, as it was that she felt you were working with her so she could have some control over a health situation that was quickly spiraling out of control.

The radiologist came in and after some non-invasive testing and comparing of her films could not find the fluid that would magically make her pain go away. After conferring with the patient’s team and lengthy discussions between all the team it was decided that there was not enough fluid to drain, no procedure on this day would make her feel better.

The doctors exited the room, the patient was momentarily flustered, when the nurse offered to page her primary oncologist so that they could discuss the plan going forward. The oncologist immediately called back and discussed with the patient for another 10 minutes the plan. There would be prescriptions to pick up, and a new medication regime as they waited for the biopsy results to come back. The patient was back in control. Now it was 2:45 how was she going to be in an Uber with her new medications by 3:30 as promised?

Gathering her luggage, a wheel chair and a nursing student, the nurse pushed her over to the pharmacy, which involved a series of elevators and bridges, a total of 3 city blocks apart. The pharmacist had received the prescriptions, and was in the process of filling them. The medications were ready at 3:23 p.m. The Uber was called, in the car at 3:29 p.m. Patient on way to airport, in control with a plan, and on time for her flight.

In life, it is often the little things that people help you with that you remember. No one knows the road ahead for any of us, putting yourself out for someone else will not cure her cancer, but it will help her control her journey, and plan and cope for whatever is ahead. Listening is important!

– Ellie

Thinking of Mesothelioma Survivors on National Cancer Survivor Day

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Sunday June 4, 2017, was National Cancer Survivor Day. This day is set aside each year to “demonstrate that life after a cancer diagnosis can be a reality.”

When I see a familiar face cruising the hospital in a wheelchair or walking with a family member it gives me great joy. Remembering back to the days of their hospitalization and the unsure days that they faced, the turnaround is great to experience for the patient and the family.

This week I spoke to several mesothelioma patients. The first was a woman who was in her seventies, who had many complications, but is home with her daughter. She was thrilled and had a huge smile. She admitted that she was still unsteady on her feet, but she had no regret about her treatment. She was well supported by her grown children who continue to accompany her to her medical visits.

The next patient was a gentleman who has been out three years. His hospitalization was also complicated and lengthy. He appeared physically well, but he did not appear to be happy. He has a supportive wife and family, but is weighed down by the fear of the disease. We talked about his life and how he filled his days and what he did with his time. He is currently enrolled in a clinical trial and has felt good about that. He spends time with his grandchildren. When asked if he keeps in touch with anyone from the mesothelioma world he said no. The one person he had a relationship with has died.

I went home thinking of him and his family and what could help him. Treatment for mesothelioma can cause fear, anxiety, depression, and at the least uncertainty. The emotional toll of his hospitalization seems to have lingered with him. It would be helpful for him to join a support group to share his experiences with others who have also gone through similar experiences. His wife would also benefit from having someone to talk to as well as him.

Another patient was also back. He returns regularly for a thoracentesis. Once every two months or so he returns and has the procedure. He appears to be happy and is grateful for the treatment and the relief it provides for his breathing.

Dealing with a devastating diagnosis of mesothelioma brings a host of emotions. Everyone reacts differently and handles it as they see fit. Despite the progress in the physical treatment of mesothelioma, the psychological treatments need to be a part of the healing process.

There are many resources available to help live with cancer. There are support services including support groups, on line groups, and disease related groups. There are articles on the internet from cancer survivors and what worked for them. If you need help with this part of your journey you are not alone. “Too many of us are not living our dreams because we are living our fears.” Les Brown.

– Lisa

Go For A Walk: Benefits for Mesothelioma Patients and Others

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In this day and age of high tech personalized medicine, there are still some simple tasks that we all can do, if able, to improve our overall health. When you are dealt a diagnosis of malignant mesothelioma there is one thing that everyone can benefit from doing every day – walking. No matter what stage your cancer is, what cell type or course of treatment that you elect, walking everyday has proven health benefits. Walking can ease the recovery after surgery, contribute to the use of less pain medication and allow you to potentially be released from the hospital earlier.

How does walking have such positive benefits? As noted in http://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/walking/art-20046261 walking can help maintain a healthy weight, prevent or manage various conditions, including heart disease, high blood pressure and type 2 diabetes, strengthen your bones and muscles, improve your mood and improve your balance and coordination.

In 2015, research was presented at the European Society of Cardiology Congress, that walking may slow down the aging process and that exercise buys you three to seven additional years of life. It can act as an antidepressant, improves cognitive function, and there is new evidence that it may retard the onset of dementia.

One study found that walking for two miles a day or more can cut your chances of hospitalization from a severe episode of chronic obstructive pulmonary disease (COPD) by about half.

Another study found that daily walking reduced the risk of stroke in men over age 60. Walking for at least an hour or two could cut a man’s stroke risk by as much as one-third, and it didn’t matter how brisk the pace was.

Walking triggers your body to release natural pain-killing endorphins, and the more steps people take during a day, the better their mood tends to be.

Walking daily around 10,000 steps or more is good, if you can do it out in the sunshine and barefoot for grounding it is better. In an article published online in March of 2015, ‘The effects of grounding (earthing) on inflammation, the immune response, wound healing, and prevention and treatment of chronic inflammatory and autoimmune diseases are remarkable.”(www.ncbi.nlm.nih.gov/pmc/articles/PMC4378297/) Grounding is defined as direct skin contact with the surface of the Earth, such as with bare feet or hands, or with various grounding systems. This research investigated the effects of walking on inflammation and concluded that grounding can be a simple, natural, and accessible health strategy against chronic inflammation.

Established in 1996, America Walks, is an organization which is trying to make America a great place to walk, by providing a voice for walking and walkable communities with federal agencies.

Walking is easy, free, and available for everyone. Dr. Thomas Frieden, director of the Centers for Disease Control and Prevention is quoted as saying walking is “the closest thing we have to a wonder drug.”

The Harvard Health Publication of Harvard Medical School recently published the 5 surprising benefits of walking. Walking counteracts the effects of weight-promoting genes, helps tame a sweet tooth, reduces the risk of developing breast cancer, helps to ease joint pain and boosts immune function.

The benefits of walking are many, take advantage of them!

– Ellie

Reaching Out In Response to a Mesothelioma Diagnosis

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When someone is diagnosed with mesothelioma or any serious illness, it is not unusual that family and friends do not know what to say or how to acknowledge what is going on. Once diagnosed with mesothelioma, hopefully the patient’s friends and family will rally around them.

Some people, with the best intentions, will tell you it will be Ok. Some will offer their opinion on chemotherapy, and how they feel it is just “poison”. The intentions are good, the delivery and message can be distressing to the patient and family to hear. There are also the group of people upon hearing the news, that disappear and you do not hear from them. It can be surprising that some that you thought would be with you are not. For your own health, try not to dwell on the ones that cannot handle your diagnosis.

To be helpful, according to www.cancer.org , take your cues from the person with cancer, some will want to talk about their illness, others prefer privacy. Let them know you care. Respect their treatment decisions. Listen without always feeling that you need to respond. Offer to help in concrete, specific ways. The advice continues about what not to say. Don’t offer advice they don’t ask for, or be judgmental. Avoid being patronizing, or telling the person with cancer “I can imagine how you feel.”

During you or your loved one’s journey with mesothelioma, you might discover that you have formed new relationships. Sometimes the people who surround you at your darkest moments may be not the ones you expected to be there. We have seen bonds form between people that they were even surprised about. Two women from totally different walks of life and completely opposite interests had formed a tight bond, so much so, that they made their husbands appointments on the same day so they could support each other. For these patients and families this was the positive that they were taking from the diagnosis of mesothelioma. For some, these are reassuring positive relationships, for others it might be too much to handle.

If someone you know is diagnosed with a serious illness, reach out. Listen instead of talking. Expect the person to have good days as well as bad days. Cancer is an equalizer. It reminds us all that our time on this earth is limited, make the most of it, and reach out to others who are having a rough time.

– Ellie

Identifying Emotions at End of Life with Mesothelioma

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No matter what the age, the diagnosis of an aggressive cancer like malignant mesothelioma is devastating to the patient and the family. For most of us, facing our death, or the death of a loved one can bring up intense feelings that are at a minimum uncomfortable to deal with. Reality is different than the expectations a lot of people have of the dying process. Dealing with the emotional aspects of mesothelioma, is important both for the patient and their loved ones. There are many emotions that come up and a lot of them cannot be neatly wrapped up and dealt with without help.

A family member of a patient who was not doing well recently confided in me that the illness really had “brought out the worst in them.” There are a lot of emotions to deal with and unlike television they do not get wrapped up in an hour show. There is the feeling of shock with the diagnosis. Shock is also present with fear. Fear is present from the beginning. Fear of the unknown. Fear of dying. Fear of being alone. Fear of suffering. Fear of being a burden to your loved ones. There are many fears that you and your family face. Fears are best identified and managed by pinpointing exactly what the fear is and dealing with it. This is not easy.

Anger is often directed at the ones closest to you. The family member that I was talking with explained that her husband was so angry about the diagnosis that everything she did annoyed him. She was trying her best but she could not deal with his remoteness. His anger was directed totally at her. She knew that he needed to redirect his anger to the disease but he was not there yet.

Some of the other emotions that pour out at this time are grief. Grief at what you are losing – your life, your relationships. Coming to terms with what has given your life meaning, your past, accomplishments and your regrets. Anxiety, depression, the symptoms can also be identified and managed

We have seen many different people deal with dying in different ways. Often family members ask us what to say, what not to say. A lot of the time the answer is to just listen. Sometimes it is the smallest act of kindness- a cup of coffee, a smile, a hug that can make a difference. There is no one size fits all approach.

There is help available. Someone who is not as emotionally connected to the family can help with coping with these overwhelming emotions.

My patient’s wife was able to talk with her pastor. Her husband is doing better emotionally. Reality is different than television. Dealing with death and dying is real. Life is short and the important things are the relationships and memories that you create.

– Lisa

  • This field is for validation purposes and should be left unchanged.

Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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