Mesothelioma FAQ

Hospice is a very much misunderstood way of delivering supportive care to patients who are gravely ill. It involves a team of providers taking care of a patient who has an incurable disease and is expected to live no more than six more months. A hospice team will usually include a nurse, a home health aide, a supervising physician, a counselor or chaplain, a social worker, and a primary caregiver who is usually a close family member.

According to the American Cancer Society, “Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones.” [link http://www.cancer.org/docroot/ETO/content/ETO_2_5X_What_Is_Hospice_Care.asp?sitearea=ETO]

Hospice care can be received at home, in the hospital, or in a nursing home. The level of care depends on what the patient needs to be kept comfortable. The care is both physical and emotional.

The primary caregiver will be trained to give their family member the care he or she needs, and the other team members will help in their various ways. Hospice can even give the caregiver a break if needed by providing “respite care.”

There are commercial, non-profit, and even all-volunteer hospice providers. Most are paid by Medicare, Medicaid, or health insurance.

Patients are sometimes reluctant to enter hospice care because they think if means they have to die during a certain period. Even if you know your disease is incurable, thinking of hospice may difficult because it seems so final. Physicians also can feel this way.

However, that is not what hospice care really means. Hospice care is available to make the patient the most comfortable possible, and also to help the family.

Most patients and families who use hospice care say they are sorry they waited so long, because the service was so helpful.

Many patients receiving hospice care continue longer than six months. If they still have an incurable illness and the situation has not improved, hospice care can continue. Should a patient’s disease improve, he or she can leave hospice care and go back to regular medical care.

This is a very personal decision that you will have to make. You will want to consider the feelings of your closest family, but ultimately you have to decide.

Most people think about their quality of life. If you are extremely sick, weak, and in pain during treatment or despite treatment, and you are not feeling well enough to enjoy seeing your family or friends, that might be when you start to think about stopping treatment.

When you got your diagnosis, at some point you may have thought that you wanted to live long enough to see certain people, or certain events, like the upcoming birth of a grandchild, or a wedding or graduation. If you have done the things you wanted to do, and your quality of life is not good, that is another time you might think of stopping treatment.

If your cancer has not responded, or it has recurred, and the treatment took a toll on you that you don’t want to repeat, that might be a time you want to think about not starting a new round of chemotherapy.

Deciding to stop treatment aimed at stopping the cancer does not mean you stop supportive care. You can still get pain medicine and treatments, oxygen or other help breathing – anything you need that can make you feel more comfortable should be continued.

If you haven’t made a will already, you should make one. This is separate from your living will, which details what medical treatments you want done. A conventional will tells your family who will get any remaining money, property and other items. If you have specific things you want to leave to specific people, this is the place to put that in writing.

If you already have a family lawyer, he or she can help you with both your will and your health-related documents. A lawyer can make clear what the requirements are in your state. While you do not need to have a lawyer to make a will, a lawyer can make things easier.

You may want to have what is called an advance health care directive which tells your doctor and the hospital what you want to have done under certain conditions. This can be something simple, stating what you want, and designating a person to make decisions for you if you are unable to do so. There are a number of different kinds of documents that can be used to do this.

A living will deals with decisions that need to be made about your health care if you are terminally ill or permanently unconscious. Requirements vary from one state to another. Usually this must be written and signed by you, and often must be witnessed and notarized. In this document you can indicate whether you want to be resuscitated if your breathing or heart stops. This is when you would have cardiopulmonary resuscitation (CPR) which can include shocking your heart, and putting in a tube so that a ventilator can breathe for you. You may or may not want a ventilator, or a tube put into your stomach if you can’t eat.

A durable power of attorney for health care allows you to select someone to act on your behalf if you cannot say what you want to have done.

When you try and decide the answers to these questions, involving your family in the decisions, if possible, will make things much easier when the need arises. There may be disagreements. Your spouse may want you to have all treatment no matter what, but you may not, or vice versa. If you can talk about it and your spouse can come to understand how you feel, it will be much better for everyone.

If you decide that you do not want to be resuscitated, meaning you don’t want anything done if you stop breathing or your heart stops, that information can be noted on your hospital chart. In some states, you can have a similar directive outside the hospital, so that paramedics would not resuscitate you.

You need to make sure you have explained your wishes to your family, and especially to the person who you are asking to make the decisions for you if are designating someone to do that (called a proxy).

Just because you are talking about difficult issues and what may happen later, it does not mean that you have given up or your doctors have given up. For many people it is actually easier to talk about it early on, before a decision about life-sustaining treatment or resuscitation has to be made.

Once you are diagnosed with mesothelioma, you will find out very quickly that this is not a curable cancer. You may be able to live a lot longer than people with mesothelioma did in the past, because of the improved treatment available. However, as difficult as it may be, it is also important for you to think about how you want to handle your illness should it become clear that you are not winning the battle against the disease.

As you hear about treatment options, you will realize that even treatment poses risks, and you might become gravely ill or even die during one or another treatment.

You may have a lot of time to think about this, but you may not. There is no way to know at the onset when a life-threatening event is going to happen.

Everyone is different in their responses to this situation. If you feel like you can discuss it with your spouse or partner, or your adult children early on, it may make things much easier for you later when you may be feeling very sick. If you don’t address it early on, and you get suddenly worse, you may not be able to say what you want, and your family may not know what to do.

Perhaps you have already had this discussion with your family in a general way. Now it is more specific, and you may need to decide if your illness will change what you want done.

There are many ways of making these decisions so that everyone knows your wishes, including the doctors and the hospital.

At any point, you have a right to treatment, as well as a right to refuse treatment. If you are clear enough in your mind and you do want to refuse treatment, you can make that decision and tell your doctors. However, if you are too sick to make decisions, you need to leave instructions for what you want to have done.

During chemotherapy or other treatment, the doctors will be watching the size of the tumor as it appears during scans, which could be MRIs or CT scans, depending on where the tumor is and how easy it is to see. A complete response would mean not being able to see any tumor, but that rarely happens.

If you are going through chemotherapy and your tumor is not shrinking but also is not growing, your doctor will probably have you complete all the planned cycles of chemotherapy and reevaluate you at the end. If there is still no change, he will probably recommend a different chemotherapy regimen. While “no response” means that your tumor is not getting smaller, it also means it is not getting bigger.

If your tumor is growing at any stage, the treatment will be stopped and alternatives considered.

It depends on your overall state of health, the size and spread of the recurrence, and what type of treatment you have already had. It also depends on what you want to do. You might be given different chemotherapy. If there is a visible tumor, it might be removed surgically.

There are clinical trials that include people whose mesothelioma has recurred after initial treatment. Your doctors may suggest a clinical trial. At the same time, you may want to look for one yourself.

Mesothelioma is most likely to recur in the places it already occupied. If you have pleural mesothelioma, it will recur in your chest. Peritoneal mesothelioma will recur in the abdomen.

Mesothelioma also has a tendency to spread out sideways and into other tissue. This includes spreading into surgical sites and places where tubes were placed. So you could see a recurrence of your mesothelioma as bumps in your surgical scar.

Pleural mesothelioma can also recur in the abdomen.

Your doctors will be monitoring what is going on inside with x-rays and scans. They will also check your surgical sites for any signs of recurrence.

Every person is different, and every family is different. Your spouse or partner certainly needs to know how serious your disease is and what to expect. He or she should know what you know, and should be at important medical appointments with you. Other adults in your family should also probably know most or all of what is happening to you, including brothers or sisters if you have them. You have to use your best judgment in dealing with your children, if any, or your parents, depending on their age.

You can probably start the conversation with your spouse. You can discuss who needs to know what, and when. While there are reasons to protect young children from much of the details, older children – teenagers and young adults – may want to know.

Since you do know that mesothelioma is not a curable disease, even if you live a long time with it, the diagnosis means your family must be prepared for the time when you may lose your fight with the disease.

Does your spouse know all of your financial affairs? Does he or she know where important papers are, bank accounts, safe deposit boxes, or anything else in that area? You might be feeling very badly after surgery and chemotherapy, and your spouse may need to be able to handle all of your affairs. You need to make sure someone has the knowledge of what to do and the legal right to do what needs to be done. This is especially true if you are not legally married to your partner, in which case you want to have documentation that he or she is the person you want the doctors to talk to and to act on your behalf if necessary. Even if you recover well from surgery and want to deal with some of this yourself again, there will be times when you have to depend on other people. You need to save your strength to fight the cancer.

Your family also needs to know what to expect as your treatment progresses, so they can adapt to your routine.

If you register at the site below, Carepages, you can set up a system to deliver updates to your family and friends. This may be useful for family members not in your immediate family, or who live far away from you, so that they can find out how you are doing without the need for multiple phone calls. This is not intended to replace one-on-one communication, but to make some things less burdensome.

http://www.carepages.com/

You should have someone to talk to, someone you feel comfortable talking to about any and all of your concerns. Sometimes that is a family member. Sometimes it is a minister, priest, or rabbi.

If you want a professional therapist, there are different choices you can make. The team taking care of you should have a therapist involved with your care that you can see regularly. A psychologist is someone with a PhD in psychology who would be able to help you address emotional issues. You might want to see a psychiatrist. They tend to be the doctors who treat people with medication. If you are depressed, you might want to see a psychiatrist for evaluation and medication. Or your oncologist may feel comfortable prescribing anti-depressant medicine.

You should not feel bad if you need to talk to someone outside your family. Sometimes it is good to be able to unburden yourself to someone who is not emotionally involved.

You should be able to get recommendations from your oncologist if you want to see someone besides the professionals you are already seeing for your mesothelioma care. Your doctor may also know of support groups in your area. Some people really get a lot out of spending time with other people who have the same disease.

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