Category: Nurse’s Corner
Mesothelioma Patients Are Not Statistics
Mesothelioma. Most people have heard the word, either from ads on the television or on billboards. Fortunately most of the U.S. population are not touched by the disease. Just 3,000 patients are diagnosed with mesothelioma in the U.S. each year. It is approximately one percent of all cancer diagnoses. Most of the victims of this asbestos-caused cancer are male.
Those are some of the facts. The people and their families affected by a mesothelioma diagnosis are not statistics. They are people living their lives until this time bomb of a disease explodes, and takes them and their families and friends with it.
Over the years, it seems the patients are being diagnosed at a younger age. Two women were diagnosed within three months of giving birth. Another young mother, an avid runner, was diagnosed after she noticed when she ran she got short of breath. Yet another young woman was diagnosed with peritoneal mesothelioma after her surgeon had removed her ovary for another condition.
A firefighter, one year from retirement, was diagnosed with sarcomatoid mesothelioma. A man in his 60’s in excellent health fell off his bike and fractured his ribs, and six months later he was diagnosed with mesothelioma.
The numbers do not tell the story of patients living with the disease. Living less than a year, longer than a year, or even longer than five years with the disease, the lives of the patients and of their families are still forever altered.
Most know the word- but not the disease. Those families and patients that know the disease also know it does not define them any more than the numbers or the name mesothelioma does.
Know more about Mesothelioma and how you can deal with it.
Nurse Encourages Mesothelioma Screening for Family Members
Mesothelioma is difficult enough to deal with when your loved one has been diagnosed with the disease. But if that is not enough to deal with, there is one more thing to think about: could it be possible that you are also susceptible to developing mesothelioma? Many people know where they were exposed to asbestos, but others may be unaware that they were exposed at all. Some people were exposed to asbestos after their parents or grandparents inadvertently brought the asbestos fibers home on their clothes from their jobs where asbestos was present. It is possible to develop mesothelioma from this secondhand exposure.
Although it may only be one offspring that demonstrates mesothelioma symptoms and seeks medical attention, my advice would be that all other family members be tested for mesothelioma. I recently ran into a patient who was diagnosed with mesothelioma, after her sister was diagnosed. Unfortunately, it does not stop there; another sibling has subsequently been diagnosed with the asbestos cancer.
Researchers have done a lot of work in this area. They have found that some people have an inherited gene that makes the patient predisposed to developing mesothelioma once exposed to asbestos. Not everyone exposed to asbestos will develop the disease, but if someone in your family has it is imperative to get yourself tested. Now, it is possible to be diagnosed early and without any symptoms evident. If you are not feeling symptomatic and you are diagnosed with mesothelioma, it could be in the early stages where you have the most favorable outcome.
Although this can be very scary, it is in the best interest of you and your family to know. It is hard to wrap your head around this, that you too could be affected with mesothelioma, but it may save your life.
Diagnosis with mesothelioma is usually confirmed with a biopsy. Every cancer center does testing differently, but it usually starts with a biopsy where a tissue sample is collected and sent to the pathology lab. When someone develops fluid around the lung, and has to have it drained or tapped, a sample of the fluid can also be sent off for pathology.
Tissue and fluid samples are the most common means of diagnosing mesothelioma, but a blood test can also help doctors identify the disease. The presence of molecular indicators called “biomarkers” can aid not only with diagnosis, but also with predicting disease aggressiveness. A mesothelioma biomarker test looks for a certain blood protein that is released by mesothelioma cells.
The protein is called SMRP, or soluble mesothelin-related peptide. The meso-marker measures the amount of SMRP in a person’s blood. Abnormally high levels may indicate the presence of mesothelioma. (The sarcomatoid type of mesothelioma tumors does not release this protein.) The U.S. Food and Drug Administration recommends physicians use this meso-marker assay in addition to traditional biopsies.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
CaringBridge Keeps You Updated on Mesothelioma Patient’s Progress
I have recently been following a friend through CaringBridge.org. It is a free, web-based site where family members can inform friends about a patient’s status. I think it is such a useful tool for families to utilize while their loved one is sick. It is difficult to call friends and family to give updates at the end of the day, when all you really want to do is take a deep breath and close your eyes. But with CaringBridge, you can type in updates when it is convenient to you, and those following you will receive an email indicating the information has been updated.
CaringBridge is a non-profit organization that allows you to write updates about your loved one and explain the patient’s status. In addition, the site also allows users to keep an online journal, offer a guestbook where friends and family can check-in and leave comments, and even maintain a personal planner where friends can sign up to help you in your day-to-day tasks such as picking up a prescription, or taking your kids to sports practice.
The beauty of this is that you don’t have to deal with the questions that come at you from everywhere – you can direct everyone to your CaringBridge site for the answers. People can sign the guestbook and offer words of encouragement, prayers, pictures or just support. I have to tell you, I am constantly waiting for the next update on my friend. It is as informative as you want it to be.
I know that where I work a lot of families use this site. It allows people to update their loved ones at home and around them. Oftentimes, patients will go back and read the comments. It is a good way to keep a diary of how you are enduring your journey. I have spoken with people about this site, and they seem happy that they have utilized this program.
If you have a loved one who is battling mesothelioma, consider using CaringBridge as an option for keeping your friends and family updated on his or her progress. The site has privacy settings to allow you to manage who can see the information.
For more information see CaringBridge.org.
Also, if you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Mesothelioma Survivors Learn to Manage Their Chronic Condition
Recently, I was talking to a patient who has been battling mesothelioma for the past 3.5 years. During our conversation it struck me that in his case mesothelioma has become a chronic condition that he is now living with. The good news for him, and other long-term survivors of mesothelioma, is that progress has been made. Mesothelioma treatment is prolonging some people’s lives past the grim statistics of survival with mesothelioma.
According to the U.S. Centers for Disease Control and Prevention, cancer is the second leading cause of death in the United States, exceeded only by heart disease. In 2010, nearly 575,000 people died of cancer, and more than 1.45 million people had a diagnosis of cancer. Mesothelioma comprises approximately 1% of these cancers.
What does it mean to have a chronic condition? About one- fourth of people with chronic conditions have one or more daily activity limitations. Chronic diseases are the leading cause of death and disability in the U.S. Heart disease, cancer and stroke account for more than 50% of all deaths each year.
For this mesothelioma survivor, what living with mesothelioma means to him is dealing with pain, recurrences, infection, chemotherapy, and radiation. It has been a difficult road for both him and his wife. They have spent countless hours at appointments with many doctors, have endured too many procedures, and have ridden the proverbial roller coaster with their emotional highs and lows. Yet, through it all, he has seen another grandchild born, and has enjoyed many special times with his family. Would he do it again? Today he would, but ask him on his down days and he might not be so sure.
As you give thanks during this holiday season make sure to include the mesothelioma patients that are forging ahead and blazing a trail as the search for a cure for mesothelioma continues. No one mesothelioma patient is a statistic, they all have stories that we are privileged to hear. Thanks to all of the mesothelioma survivors for their courage and inspiration.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Nurse Explains Importance of Taking Prescribed Medications
Mr. W is an intelligent, 62-year-old man who recently had a pleurectomy for treatment of his malignant pleural mesothelioma. His post surgery course was smooth, with no unusual complications. He has a very supportive wife and children. He seemed to understand the importance of following the post-op instructions. He was enthusiastic about walking, understood and complied with his fluid restriction, knew his medications, and pain was not an issue.
His beta blocker, ASA, lasix, and magnesium, had all been reviewed with him, and he had taken some before his surgery and immediately after discharge from his surgery. Knowing all that, and the support he had from both his family, and his home primary care physician who had referred him to the mesothelioma center, why then, when he got home, did he stop taking all his medications?
Adherence refers to how consistently a patient takes his medication exactly as prescribed. The reasons people don’t take their medicine as prescribed are varied: the patients do not want to deal with the side effects; patients don’t feel well enough to take them; they can’t see the benefits of the medication; or the cost of medications is an issue.
Another reason may be that the patient simply forgets to take meds as prescribed. Still other patients are actually in denial believing if they take the medicines then there really is something wrong with them. Yes, your cancer is real. But taking your medicines can help you fight it.
Studies have shown that for patients with chronic conditions like high blood pressure and diabetes the non-adherence rate can be as high as 50%. Cancer has now progressed to a chronic disease, and with that distinction comes other issues.
In asking Mr. W why he stopped his meds, he did not really have an explanation. He had not discussed it with either his family or his health care team. Intellectually, he knew the reasons and importance of taking his medications, but he stopped taking them. Upon further discussion with him, though, he revealed his depression with his cancer diagnosis. He agreed to talk to his PCP and get some help.
Adherence to the treatment plan is important in the care of all patients, especially mesothelioma patients. Nurses realize that every patient is different and every circumstance might not be what it appears. Being open and honest with your health care team is vital to ensure that your mesothelioma is being treated according to your needs.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now