Treatment Center Spotlight: The International Mesothelioma Program

The International Mesothelioma Program is directed by Dr. David Sugarbaker and based at Brigham and Women’s Hospital in Boston. It is one of the largest mesothelioma programs in the world, and provides over 300 consultations to mesothelioma patients each year. The IMP draws patients from across the US and internationally, and provides mesothelioma patients and their families with free travel and lodgings during treatment.

The program’s vision is to extend the lives of mesothelioma patients, improve the quality of life of mesothelioma patients and their families, and one day deliver a cure for mesothelioma. To achieve this goal, he IMP supports the emotional well-being of patients and families through a holistic approach to care. The IMP supports patients and families through social work, support groups, chaplaincy, and specialized post discharge nursing care. To provide patients with state-of-the-art medical care, the IMP provides trimodality therapy comprised of surgery, chemotherapy and radiation therapy. Multimodality treatments can include heated intraoperative chemotherapy, which was developed for the optimal treatment of microscopic tumors.

The International Mesothelioma Program is also an active contributor to the field of mesothelioma research. IMP researchers have done extensive work with tumor genomics, including sequencing whole tumor genomes. Their efforts have resulted in the identification of multiple potential vulnerabilities that could be used for targeted treatments in the future. The IMP envisions that the laboratory and clinical trials infrastructure they have established will continue to bring promising therapeutic strategies to fruition. The IMP is committed to using its extensive research resources to find a cure for mesothelioma.

Spotlight Article: The Mesothelioma Surgery Debate

This year’s International Conference of the International Mesothelioma Interest Group (iMig) included many viewpoints on the role of surgery in malignant mesothelioma treatment. Surgery is a controversial treatment option in the mesothelioma community because several mesothelioma surgeries are radical operations with long recovery times. However, radical mesothelioma surgery does give some patients a significant survival advantage. Doctors disagree, however, on how to determine if a patient will benefit from radical mesothelioma surgery.

In this article, we have summarized the presentations from the 2012 iMig conference that focused on surgery for mesothelioma patients. This article is not intended as medical advice: some of the research covered in this article is controversial and every patient’s situation is different. We hope this summary can be a good starting point for conversations with your mesothelioma team about new developments in mesothelioma treatment.

Background

The most radical surgery used to treat mesothelioma is extrapleural pneumonectomy, or EPP. An EPP operation aims to remove all visible tumor tissue. This includes removal of the affected lung, the lining of the lungs, part of the diaphragm, and part of the lining of the heart. The operation can slow down the cancer considerably, quality of life after the surgery is a consideration.

Pleurectomy/ decortication (P/D) is the other radical surgery commonly used to treat mesothelioma. During a P/D procedure, the surgeon removes the lining of the lung and any other visible tumor tissue that can be removed while sparing the lung. P/D is a radical surgery, but recovery times after P/D are shorter than recovery times after EPP. A P/D operation can be curative or palliative.

Debulking is a palliative surgery performed to reduce the size of the tumor and relieve the symptoms of mesothelioma. Debulking does not entirely remove the tumor, but it can extend the life of a patient because it allows the patient to breathe more easily.

The Debate

Some mesothelioma doctors at the convention favored debulking for most mesothelioma cases. One such surgeon, Dr. David A. Waller, believes that EPP is only suitable for stage I epithelioid patients and that P/ D is only suitable for stage II epithelial patients. For Stage III and sarcomatoid patients, he recommends debulking.

Other studies further specified types of patients that are less likely to benefit from radical surgery. Risk factors identified by doctors at the iMig conference include disease in the fissures of the lungs, right-sided tumors in patients over 70, patient age over 75, and non-epithelioid or advanced disease. Several doctors also advocate the development of more accurate staging techniques to improve patient selection for surgery.

Conversely, some groups of patients may have a higher chance of benefitting from radical surgery. Dr. Ritu R. Gill states in her study on P/D patients that “patients with epithelial histology on biopsy, normal hemoglobin levels, small volume disease and no fissure involvement have a remarkably long survival following pleurectomy and HIOC.” Doctors Isabelle Opitz and Alex Cale conclude in different studies that patients who have EPP procedures done under certain conditions can survive for a remarkably long time. Dr. Cal specifies epithelial type, lack of pleural node involvement, age under 65, and right-side EPP as favorable factors in long-term survival after EPP. Doctors Waller & Nakas also agree that patients with epithelioid type disease and no lymph node involvement can benefit from EPPs.

For eligible patients, an EPP can produce very good results. In a retrospective study of fifty-six mesothelioma patients, Dr. Satoru Moriyama and his team compared EPP patients with patients who underwent nonsurgical forms of therapy. According to the study, “The median and 5-year survival rates [for patients] who underwent surgery were 21 months and 24%, respectively, whereas those with nonsurgical therapy were 20 months and 0%, respectively.” The study concluded that EPP should be chosen for stage I and II patients and patients with epithelial disease. Dr. Onur Ermerak agree, stating that “there is a subgroup of patients who benefit from EPP and adjuvant chemoradiation with a 5-year survival rate over 20%.”

Most doctors agree that EPP isn’st right for every patient. However, doctors disagree on how best to treat stage II and III patients. Some doctors recommend palliative surgery and others recommend P/D or EPP. However, it is widely agreed that more studies need to be done to determine what factors should be used in choosing the best surgery for each patient.

Intraoperative Chemotherapy

Doctors at the conference also presented findings on treatments that can be combined with surgery. One study reported that 71% of mesothelioma recurrences happen in the same side of the chest cavity where the cancer was originally found. Based on these findings, the study advocated for more research on localized therapies like intraoperative chemotherapy: chemotherapy that is applied directly to the tumor during surgery. Although some doctors at the conference cautioned that intraoperative chemotherapy is still an unproven therapy, other doctors at the conference reported good results from the treatment.

At the conference, Dr. Paul Sugarbaker described his hospital’s approach to mesothelioma treatment, which includes both intraoperative chemotherapy as well as traditional intravenous chemotherapy using a total of five different chemotherapy drugs. His methods, while controversial, have raised median survival rates at his hospital to seven years.

Another study compared EPP to intraoperative chemotherapy in combination with P/D. Dr. Gruetzner and his team found that both methods produced comparable results: similar cancer reduction and survival rates. Dr. Gruetzner and his team support the combination of P/D and intraoperative chemotherapy as an alternative to EPP both for patients who cannot receive EPP and for patients who can but want to consider less radical surgery options. Although still not completely proven, research on intraoperative chemotherapy presented at iMig was promising.

Conclusion

Radical surgeries for mesothelioma such as EPP remain controversial. They are serious surgeries, and there are other options for mesothelioma treatment. However, several studies have demonstrated the value of EPP and P/D procedures in specific patient groups. Most doctors agree that earlier stage cancers, epithelioid tumor type, and lack of pleural lymph node involvement are positive prognostic factors for patients undergoing EPP. Some doctors believe this means that only patients meeting those criteria should undergo EPP; others believe that patients who don’t have all three advantages can still benefit from EPP. Many doctors at the conference called for more research on mesothelioma surgery topics such as P/D procedures and effective candidate selection.

Mesothelioma Patient Spotlight: Julie Russell, R.N.

ulie Russell, R. N. is a mother of two adult sons who lives in Massachusetts. She has worked as a nurse for many years and currently works in a cath lab in a Massachusetts hospital. Other nurses describe her as an exceptionally kind and generous person who goes to great lengths to help people in need. She is energetic, outgoing, and loves life, and is still going strong four years after her mesothelioma diagnosis at age fifty-six.

Peritoneal mesothelioma was never something Julie expected to deal with. During a surgery for diverticulitis, her surgeon removed her ovaries for analysis. The pathology report on the ovaries was abnormal. Julie’s doctors sent her specimens to another hospital, reassuring her that “it was extremely unlikely that it was anything to worry about.”

However, Julie read her own pathology report. It said she had peritoneal mesothelioma in her ovaries. Although she knew what pleural mesothelioma was, Julie had never even heard of peritoneal mesothelioma. Her gynecologist couldn’t help her. When she called her primary care doctor, the doctor started crying and referred her to an oncologist. The oncologist offered to present her case at tumor rounds so multiple doctors could analyze her case.

After her diagnosis, Julie went on a mission to learn as much as she could about peritoneal mesothelioma. She scoured the internet for information and went to the Dana Farber Cancer Institute in Boston to talk to mesothelioma experts. Julie sought out many opinions, talked to experts, and listened to her instincts in deciding what kind of treatment to get. She chose to undergo extensive abdominal surgery with heated intra-operative chemotherapy at the New York-Presbyterian Hospital in New York City under the care of doctors Chabot and Pass.

Julie describes the experience as lonely. She says Mary Hesendoffer N.P., the medical liaison at The Mesothelioma Applied Research Foundation, was a lifeline who listened to her experiences, answered her questions, and directed her to experts. Mary also helped Julie contact some other women with peritoneal mesothelioma to help her feel less alone.

Four months after surgery, Julie went back to work. Post-surgery, she has a very positive outlook on life. Due to the treatments she is now prone to adhesions that lead to bowel obstructions, and has to stick to a diet that prohibits her from eating fruits or vegetables. However, she still works as a nurse and leads an active life: Julie enjoys hiking and skiing. It has been four years since Julie’s diagnosis and she is actively enjoying life.

When asked what advice she would give to other mesothelioma patients, Julie emphasized the importance of staying positive: she says maintaining a positive attitude is important because there is a huge mental component to beating mesothelioma. Julie says it’s important to follow your heart, follow your instincts and go out and dance!

Caring about the Caregiver

Lately, I am hearing a lot about the “caregiver”. The term, “caregiver”, is used to loosely define anyone who helps to provide care for another person with a life-threatening or chronic illness. My guess is that if you are reading this, you either are a care-giver, or a care receiver.

I am a care giver. My husband, Lannie, has battled Mesothelioma for almost 6 years. During these 6 years, he has had remissions and exacerbations that have challenged me in every way. Like most caregivers, I was suddenly catapulted, quite unprepared, into the alarming and fearful world of cancer. Lannie’s surgery, subsequent Radiation and Chemotherapy assaulted me with ferocious speed and left me reeling and barely coping at times.

I have read many articles written for caregivers. They tend to give good advice on the importance of taking care of my body, making time for myself, asking for help, etc.

But

I was unprepared to acknowledge that, at times, I feel resentment toward the intrusion of Cancer into my life. To be perfectly honest, sometimes, I feel resentful toward my husband for demanding so much of my depleted energy.

I feel guilty because I feel resentful. I feel shame because I dare to complain when I should be thankful.

What is wrong with me? My shame over my attitude adds to the strain. I don’t want to share my feelings with anyone. I am fearful “they can’t understand, and worse, they might judge me harshly.

I isolate myself to protect myself.

I am unprepared to have my feelings hurt when Lannie, at times, becomes moody and irritable with me and other family members when he feels poorly. I understand, intellectually, but his words sting.

Fortunately, we have been married many years, so we have learned to apologize and forgive. We both know our true opponent is Cancer, not each other. We move forward.

My Point

In a perfect world, the care- recipient is always pleasant and appreciative of their caregiver’s efforts. They say, “Thank you” and ask “How would I mange without you?” and never complain. The care giver has infinite patience, energy and always knows the most caring words to say.

Sigh.

The reality is that care-givers and receivers are human. We all make mistakes. We have a myriad of feelings and some of them might be considered negative. We are both in a situation that is out of our control, and both of us are doing our best to cope.

I wish I had known about this part of caregiver when Lannie was first diagnosed. Maybe my honesty will help you, and the one you are caring for.

My prayer is that I have helped you cope. You see, I care.

Linda C, RN

Mesothelioma Diagnosis & Staging

It is very important to see an experienced specialist when it comes to pleural mesothelioma. Mesothelioma is a difficult disease to diagnose and treat. Symptoms of mesothelioma often mimic other diseases that are less aggressive and very often benign. It’s why it can take months, sometimes close to a year, to get a definitive mesothelioma diagnosis.

The most common first symptom in many patients is shortness of breath. You also might see pain in the chest or tightness of the chest or weight loss. And one of the first signs you see on an X-ray is fluid around the lungs (also known as a pleural effusion).

jacques-fontaineJacques Fontaine, M.D., is the leading thoracic surgeon in the Mesothelioma Research and Treatment Program at the H. Lee Moffitt Cancer Center in Tampa. He will be writing regular blog posts for MesoCare.org, sharing his thoughts, ideas and experiences dealing with mesothelioma cancer. More information on Dr. Jacques P. Fontaine, MD

But just because you have fluid around the lungs doesn’t mean you have mesothelioma. A lot of other diseases present with fluid around the lungs. The majority of patients with fluid around the lungs do not have mesothelioma.

Some of the same symptoms can be attributed to benign types of disease. You could have inflammation of the pleura from a pneumonia (para-pneumonic effusion) or an infection of the fluid around the lung associated with a pneumonia (empyema). Other causes of fluid around the lung include benign inflammatory states, infections from viruses, or reaction after recent heart or lung surgery.

So if a patient has fluid around his/her lung, the first thing he/she should be thinking is not mesothelioma! The first thing he/she should be thinking is it’s probably benign, it’s not a big deal, and it will just go away over time. We just need to drain it.

However, alarm bells should start ringing for your doctor if the fluid is associated with a very thick rind on the CT scan in a patient who has had previous and significant asbestos exposure. Also, the red light should go on if the fluid keeps reoccurring. If the fluid is removed and it keeps coming back, that is suspicious for cancer and a biopsy is advisable.

I will point out that I’ve had patients who say, “I was exposed to asbestos a month ago, and now I have fluid around my lung, do I have mesothelioma?” The answer is no. It takes an average of 25 years between exposure and the development of mesothelioma.

So, if the red light goes on, then we need to try and figure out what’s really going on because it’s probably more than an infection.

Diagnosing Someone for Mesothelioma

The first thing we do is remove the fluid with a little needle called a thoracentesis. We send the fluid for analysis. We’re looking for certain types of cells and certain types of protein in it.

And that, in a minority of the time, is diagnostic. If the fluid comes back negative, after the thoracentesis, that doesn’t mean for sure you don’t have mesothelioma. It just means it has not been diagnosed. If the suspicion still is high, then we need to go on to a more definitive, or advanced, testing.

We would do a thoracoscopy (also known as VATS – video-assited thoracic surgery), where we place a small camera between the ribs and take biopsies, actually taking little chunks out of the tumor. The likelihood of diagnosis with that is much higher, over 95 percent accurate. Most often it would require general anesthesia and a one-day hospital stay.

Staging

The thoracoscopy (VATS) procedure not only can diagnose mesothelioma, but it helps stage the mesothelioma, tells us how advanced it is in the chest cavity. It contributes to the staging of the mesothelioma and provides very important information, especially if considering surgery.

Once we diagnose mesothelioma, then we have to figure out how far along the cancer has progressed. That is called staging. Staging is done with every type of cancer. Mesothelioma has a tendency to be a locally aggressive cancer, and rarely gives metastases elsewhere.

In addition to the thoracoscopy to stage a cancer, we often do a PET scan. A PET Scan is a specialized CT Scan using a radioactive sugar injection which looks for the location of cancer cells. Cancer cells will light up bright on the scan. It helps us locate the areas of cancer cells and thus the extent of the disease. Although a PET Scan is very advanced technology, it’s not 100 percent precise. Sometimes, particularly areas of inflammation or infection, also will light up and mimic the cancer. So it’s not 100 percent accurate.

Because it’s so difficult to tell on a microscopic level the difference between cancerous mesothelioma vs. inflamed mesothelium cells or other more common forms of lung cancer, it’s important that the biopsies get reviewed by a hospital or cancer center that has a pathologist who specializes in mesothelioma and sees a lot of samples. The experience of the pathologists reviewing the biopsy samples is very important. For this reason, it is common for us to receive samples from across the country to be reviewed here as a second opinion.

We sometimes also get an MRI of the chest, to look for possible invasion of the cancer into major nerves or major blood vessels. If it has invaded these areas, it may preclude the patient from being a surgical candidate. Chemotherapy rather than surgery is the best option in those cases.

Know the Type of Mesothelioma

There are three types of mesothelioma seen under the microscope: Epithelial, Sarcomatoid and Biphasic (a mix of epithelial and sarcomatoid). It’s important to know exactly what type of mesothelioma it is because it will determine how aggressive the cancer is, and what the best treatment is.

Sarcomatoid-type mesothelioma is the most aggressive type and usually there is no role for surgery, as surgery does not make patients live any longer with this type of mesothelioma. Epithelial is the least aggressive type (but aggressive nonetheless). So when you diagnose someone with mesothelioma, you want to be able to know the exact type of mesothelioma. It makes all the difference in what you do next.