It is not uncommon for mesothelioma cancer to be diagnosed at a late stage. This makes mesothelioma palliative care an important component of your mesothelioma care plan.
Mesothelioma is a rare form of cancer that is caused by exposure to asbestos. It can be hard to get a mesothelioma diagnosis because the symptoms overlap with other, more common, diseases.
At every stage of this life-threatening cancer, mesothelioma palliative care can add to your wellbeing and improve your quality of life. You don’t have to tough it through the pain. You can take advantage of palliative treatments to ease your journey through mesothelioma.
What is Mesothelioma Palliative Care?
Palliative care is treatment that improves the quality of life for a patient but doesn’t directly treat the disease. The goal of mesothelioma palliative care is to relieve pain and discomfort but not to reduce the size of the mesothelioma tumor or prevent the spread of the cancer. The Open Society Foundation defines palliative care as “a holistic approach that improves the quality of life for patients and their families by addressing the psycho-social, legal, and spiritual problems associated with life-threatening illness.”
You can receive mesothelioma palliative care at any point during your treatment, but it becomes the primary treatment when treatment options to remediate your cancer have been exhausted. Palliative care ensures that, during the final stages of mesothelioma, you have the medical support you need to reduce your pain and suffering as much as possible.
On some level, all mesothelioma treatment is palliative since mesothelioma is currently not considered curable. However, many mesothelioma treatments have been proven to extend life expectancy for some patients; these are not generally included under the heading of palliative care.
Sometimes mesothelioma palliative care looks much like standard mesothelioma treatment. Surgery to remove a tumor is palliative care rather than mesothelioma treatment when it’s performed at a late stage and the progression of the cancer can’t be slowed with surgery. A debulking procedure to reduce pressure or pain caused by the tumor is an important treatment, even if the purpose is purely palliative.
A common mesothelioma palliative treatment is the removal of fluid buildup in your mesothelium, which can cause discomfort and press on your organs. Mesothelioma forms in the linings around your organs, most commonly the pleura or lining around your lungs. A pleural effusion (fluid buildup) can make breathing difficult. Patients with peritoneal mesothelioma (in the mesothelium in the abdomen) and pericardial mesothelioma (in the lining around the heart) can also experience painful fluid buildups. The accumulation of fluids inside the mesothelium is a common symptom of this form of cancer.
To reduce the pressure of a pleural effusion or other fluid buildup due to mesothelioma, your doctor will insert a needle or a tube into the affected area to allow the fluids to drain. This procedure may have to be repeated if the fluids build up again.
Other mesothelioma palliative care may be as simple as providing medication to fully treat any pain you experience due to your illness. Palliative care can also involve treatment for the stresses of mesothelioma. You don’t have to suffer with depression after a mesothelioma diagnosis; counseling and other treatments can help relieve your emotional suffering, as well as your physical pain.
Palliative Care During Mesothelioma Treatment
If your mesothelioma was diagnosed at an early enough stage, you may be a candidate for some or all of the standard of care mesothelioma treatments: chemotherapy, surgery, and radiation therapy. These treatments, especially two or more in combination, can often slow the progress of the cancer and extend your life expectancy. If the standard mesothelioma treatments aren’t appropriate for you or stop working, mesothelioma immunotherapy offers a further lifeline as a second-line or third-line treatment.
While you receive treatment to prevent your mesothelioma from metastasizing (spreading to another part of your body) you can also have palliative care to ease your discomfort. Mesothelioma palliative care during treatment can include painkillers after surgery and anti-nausea medicine to help with the side effects of chemotherapy.
You have the right to be free of pain and suffering as much as possible. Do your part by speaking up and telling your doctor about any discomfort you feel. Ask your doctor to work with you to create a mesothelioma palliative care plan.
Who Should Get Mesothelioma Palliative Care?
Almost every mesothelioma patient should receive palliative treatment of some kind. You don’t have to wait until the end stages of the disease to qualify for mesothelioma palliative care.
It can be hard to admit you’re in pain and that you need help. You don’t want to be a burden or a complainer. You may have endured physical hardship in your life, during military service or when you performed challenging physical tasks at work. A high tolerance for pain might have served you well at those times. Now, it can actually cause you harm to keep a stiff upper lip when you’re in pain.
Several recent studies have shown that cancer patients who get palliative care early in their treatment often have a better quality of life, less depression, and even longer survival times. A treatment plan that includes mesothelioma palliative care can help you better tolerate other treatments. Relief from depression can help your body’s own immune defenses fight back the cancer, since depression chips away at your immune system.
Don’t be afraid to ask for mesothelioma palliative care early and often. The earlier you start treatment for pain, the less medication it will likely take to relieve that pain. If you wait until the pain is extreme, it becomes harder to effectively control your pain.
Cancer progression is classified by stages. Mesothelioma stages indicate how far your cancer had progressed by the time it was diagnosed. The stage at which you receive a mesothelioma diagnosis can affect how much emphasis your care team puts on palliative care.
Early mesothelioma is stage T0 (no discoverable tumor) or T1. In T1, the cancer is confined to one side of the body and may only affect a single layer of your mesothelium. By T2, the tumor has spread to all layers of the mesothelium and to nearby tissue. At T3, the cancer has spread widely around the site of the original tumor. In T4, the most advanced stage on this scale, the mesothelioma has metastasized to other organs.
If you were diagnosed at T3 or T4, you may not be eligible for some or all of the standard mesothelioma treatments. That doesn’t mean that your doctor can’t help you. Mesothelioma palliative care can be a good option, to make sure that you are as comfortable as possible for as long as possible.
How Long Can I Receive Palliative Treatment?
There is no time limit for mesothelioma palliative care. You should receive pain medications and other palliative treatments whenever you need them throughout the course of your illness.
You can continue to receive this vital treatment as long as you need it, no matter what your prognosis. With good palliative care, you might even live longer.
Cancer Palliative Care Providers
You may receive mesothelioma palliative care from several different members of your healthcare team. At some points in your treatment, you might receive palliative treatment from more than one provider at the same time.
Your doctor is your first line provider for palliative care. Ask your physician for recommendations about pain management and treatments to reduce other symptoms.
During the phase of your mesothelioma treatment where the primary emphasis is on therapies to slow the progress of the disease, palliative care may be overlooked. Your doctor might not ask you about your level of pain or discomfort. It’s important that you speak up. After all, you are the only one who knows where it hurts.
When you share that information with your doctor and specifically ask for mesothelioma palliative care, you open the door to better collaboration with your medical providers. Don’t be afraid to advocate for yourself. You deserve freedom from pain, to the extent that your doctor can provide it.
Palliative care for mental and emotional distress could come from a patient support group at the hospital or medical center treating you. Alternatively, you might seek help from a counselor or spiritual advisor. Don’t discount the importance of this aspect of your health. Depression is very common among cancer patients; treatment for that depression can boost your overall health and resilience.
Hospice, through Medicare or your health insurance, can provide mesothelioma palliative care during the final stages of the disease. Hospice provides only palliative care. The doctors and nurses who work for hospice organizations are specially trained in pain management. Hospice offers nursing home placements for those who need a high level of care, but many hospice patients are able to stay comfortable at home with the help of hospice services. Hospice can send nurses and medical assistants on regular home visits, give prescriptions for pain medications, and provide the medical devices you need, such as a hospital bed or oxygen. Hospice also provides family support and assists with end of life healthcare planning.
Patients are usually referred to hospice once they receive a terminal diagnosis with six months or less to live. You can receive hospice care for longer than six months; however, hospice generally only discharges patients whose conditions are no longer life threatening.
It’s a good idea to think of every medical professional as a potential mesothelioma palliative care provider. Keep asking your healthcare team for the palliative treatments you need to keep you comfortable and communicate with them as your needs change.
Benefits of Mesothelioma Palliative Care
As mentioned above, research has demonstrated that palliative care can extend life expectancy for cancer patients, especially when you start it early in your treatment process rather than waiting until standard treatments stop working. Even low levels of pain can exhaust you. At a moment where you need every ounce of your energy to fight mesothelioma, palliative care can keep your batteries from being drained by pain and discomfort. Mesothelioma palliative care is a vital part of your treatment plan.
Early Palliative Care
Studies show that starting palliative care at the time of diagnosis makes a big difference in the health of patients with life-threatening illnesses like mesothelioma. Not only can palliative care extend life expectancy, it can also reduce emergency room visits, lower healthcare expenses, and cut down on the number of days patients spend in hospitals.
Ask your doctor about mesothelioma palliative care at your first appointment. This doesn’t mean that you are giving up; you can have a palliative care plan in place during aggressive mesothelioma treatment.
Mesothelioma surgery and chemotherapy are important treatment options. They can also take a toll on your body and spirit. Your treatment will be more effective if your pain and discomfort are also treated.
Palliative care is not perfect. Pain medications have side effects, too. You may have to try different medications and dosages to find your optimal pain relief. Imperfect mesothelioma palliative care, however, is better than none at all. Any reduction in your pain and discomfort will give you a big improvement in quality of life.
As healthcare providers recognize the benefits of palliative treatments, more of them have begun to employ palliative care specialists. Ask for a consultation with an expert in mesothelioma palliative care at the beginning of your treatment.
Palliative Care at Home
Many patients prefer a home environment to inpatient treatment. Staying home allows you to spend more time with your family and gives you the comfort of familiar surroundings. Mesothelioma palliative care can help keep you in your home longer.
Palliative care in your home could include a mechanical hospital bed, to help you find a comfortable resting position. You can rent a hospital bed, if hospice isn’t providing one yet. Ask your palliative care specialist or hospice nurse what other home modifications or devices could improve your ease and mobility.
Adequate pain medication is an important part of home palliative care. Follow doctor’s orders on the dosage and timing of pain medications and let your physician know if your pain medications aren’t working.
Palliative Care Inpatient Treatment
You should receive mesothelioma palliative care during inpatient treatment. If you are hospitalized after surgery or because of mesothelioma complications, make sure you ask the hospital to include a palliative care specialist on your treatment team.
If the only treatment you’re receiving is mesothelioma palliative care, this can take the form of inpatient care at a nursing home or assisted living facility. Hospice provides palliative treatment inpatient placements for those whose care is too complicated to be managed at home. You might also choose inpatient palliative treatment if you live alone and need more support than hospice can provide in your home.
During inpatient palliative care, your treatment plan will center around your comfort and sense of wellbeing. You’ll receive medications and medical devices to keep you free from pain. You will be assisted to live your remaining days with dignity and serenity.