Finding Hope When You Have an Incurable Disease | Online Support Group
November 15, 2013
Most people with mesothelioma feel hopeless when they discover that their disease has a poor prognosis and that their disease is not curable. A prognosis is a forecast of the probable course and outcome of a disease, particularly as it relates to the chance of recovery.
It is important to note that a “forecast” is simply a prediction based on the physician’s clinical experience and what the research indicates has happened with other patients in the past.
Since a prognosis is nothing more than a forecast, we should remember the number of times that the local weather forecast has been wrong. The truth is that no one can see into the future, and that includes doctors. All the physicians have is data about how long other patients have lived with mesothelioma. This information does not predict what will happen with your cancer.
Prognosis May Be Helpful – or Not
Patients differ in their desire to know about their specific prognosis in terms of years or months of survival. Some people ask their physician to estimate their survival time in instances of receiving chemo or other treatments vs. not receiving any treatment at all.
This means that patients could hear their physician say, “Well, with the current treatment, you could expect to live x number of months or years. If you don’t receive any treatment, you could live x number of months or years.” Patients sometimes report a sense of comfort in knowing their prognosis, so that they can plan for the future while still hoping to outlive their life expectancy.
Other patients with mesothelioma do not want to know their life expectancy. These patients say that knowing would take away their hope and would lead them to simply count the days/weeks and be preoccupied with their impending death.
The bottom line is that there is no correct choice when it comes to asking your physician how long they think you may live. The best option is to consider your own thoughts and feelings about how knowing would affect your ability to enjoy your life today and act accordingly.
Treatment Options and Statistics
Mesothelioma is not curable, but that doesn’t mean that physicians can’t treat it. Medical and surgical oncologists have many medical and surgical options available to try and keep mesothelioma stable – or under control. Physicians work to control symptoms and side effects, as well, in order to improve a patient’s quality of life.
Another important point to consider is that survival statistics are derived from studies that are carried out over many years. What this means is that the mesothelioma survival statistics we have today are a result of studies that followed patients who were treated more than five years ago.
Those statistics don’t take into account any medical or surgical advances that may now be available. So, it is altogether possible that the survival statistics given today could be outdated and that recent improvements in treatments could improve mesothelioma survival.
Some mesothelioma patients are hopeless at the lack of better treatment options available to them. However, it’s important to understand that time buys potentially new options for treatment. Researchers are constantly investigating new therapies and treatment options. There could be new surgical or medical treatment options coming soon. Or there could be clinical trials for which you are eligible to participate.
Living with uncertainty when you have mesothelioma is one of the most emotionally challenging aspects of the disease. And finding hopefulness when you have an incurable cancer can certainly be challenging.
But mental health professionals have found that when patients and families are able to understand what a prognosis is (an educated guess) and attempt to compartmentalize that fear of cancer progression, then patients are better able to be fully present in the now, enjoy their health today and find some hope.
Trying to live in the moment and enjoy your good days when you have mesothelioma is hard. However, try to catch yourself when you are worrying about what could happen in the future and say to yourself, “Stop!”
Refocus your thoughts on where you are today, who you are with and what you are able to do today. Being present is part of a concept called “mindfulness,” and there are many books, websites and relaxation exercises that can help you practice mindfulness.
Questions and Answers from the November Online Support Group
Q: HIPEC seems very invasive. Are there other treatment options for peritoneal mesothelioma?
A: Yes there are other options, although surgeons have been having good success with the hyperthermic intraperitoneal chemotherapy (HIPEC) when it is combined with cytoreductive surgery. HIPEC is also used on other cancers that affect the abdominal cavity, allowing the chemotherapy solution to kill the microscopic cancer cells that can’t be removed surgically. Patients also can undergo a paracentesis, which removes excess fluid in the abdomen, but it is used more for diagnostics or temporary relief.
Q: Mesothelioma survivor Paul Kraus in Australia is well known for his success with alternative treatment. Are there natural treatment options for peritoneal mesothelioma?
A: Plenty of people have tried alternative treatment options, and some have found success that way in keeping mesothelioma in check for an extended period. They have managed the cancer successfully by strengthening their own immune system, which some believe is the healthiest way to do it. It doesn’t work for everyone. People have tried homeopathic and herbal medicines with varying degrees of success. Sometimes doctors recommend using alternative treatment options to complement traditional therapies.
Q: What’s the latest news on immunotherapy?
A: Many experts believe that the future of cancer treatment will involve some type of immunotherapy, which helps the body’s own immune system recognize, target and destroy cancer cells. The problem usually is that the immune system doesn’t recognize the cancer cells as foreign, allowing them to thrive. There are several clinical trials involving immunotherapy going on today. Moffitt Cancer Center in Tampa is one of the centers working with the drug compound anti-PD-L1, which has been successful with lung cancer and could work well with mesothelioma. A strong immune system often is the best defense against serious illness, but researchers also are discovering drugs like SS1P that can work effectively only if the immune system is suppressed. That’s another one of the latest developments.
Q: What is vaccine therapy, and could it work for mesothelioma?
A: Mesothelioma vaccines can be created by removing cancer cells from a patient, modifying them in a laboratory and then injecting them back into the patient so that they can be recognized as foreign by a patient’s immune system. There is a clinical trial involving a genetically altered measles virus (MV-NIS) and another using the genetically-altered Listeria virus (CRS-207) that have shown promise.
Q: Where can patients learn about clinical trials?
A: Clinical trials are where you can find some of the latest therapies and the most up-to-date research efforts. These are the treatments and drugs that are working their way through the FDA approval process. This also is where the breakthroughs will be coming. Getting involved in a clinical trial can help you, and help others who follow you. Trials are vital for a rare cancer like mesothelioma. You can find all the information about the latest trials at Asbestos.com.
Q: What is papillary peritoneal mesothelioma, and is it caused by asbestos?
A: It’s the best kind of mesothelioma to have. It’s the type that can be managed for a very long time. It’s not associated with asbestos exposure, and it’s almost considered benign. It’s not malignant, although it can come back. It’s usually specific to women.
Q: If a mesothelioma patient has a fever and a cough, but the CT scan is clear, what is going on?
A: Something is causing the fever, so the patient should continue to pursue that with a physician. There is a reason for the fever, and it’s important to find out what it is. It could be caused by a treatment. It’s not normal, so the patient should keep pressing for answers.
Q: If a cough and back pain develop after mesothelioma treatment, what does that indicate?
A: Good question. This could be anything from an infection to an allergy to recurrence. It doesn’t necessarily mean the cancer has returned, however. This does mean you need a return visit to see your oncologist, and encourage him or her to figure out what the cause is.
Q: What can patients do if their doctors are not communicating well with them?
A: Doctors are not always great communicators. They are trained on diagnosing and treating problems, often objectifying the patient as a set of symptoms.
Some are great at communicating, which patients appreciate. If it’s a problem, there are some things you can do to help it along: Arrange your priorities for the visit ahead of time. Write them down, and take a list in when you see the doctors. Have a friend or family member go with you to the appointment, giving you a second set of eyes and ears.
This information was shared during our Nov. 13, 2013, online support group.