A diagnosis of mesothelioma brings with it one of the most difficult challenges you or your loved one will ever face. One of the most important things to remember, however, is that there are resources to help with every aspect of care, and that you or your loved one is at the center of the health care team that will provide help in many different forms. Remember also that in addition to your doctor you can also get a second opinion from another physician.
You, the Patient
Your role as the most important member of the team is to be a good consumer by gathering information and asking questions. Following are some easy ways to make the most of your appointment times with other members of your medical team:
- Once you know the day and time of your appointment, start a list of questions you want to ask that particular team member. These questions could be about mesothelioma itself, about test results or about treatments you are undergoing or considering. It is also a good idea to write down any symptoms you may be experiencing so that they can be addressed at this time. If there is something you don’t completely understand, ask to have it explained in simpler terms. Above all, don’t be embarrassed to ask questions or request clarifications.
- If possible, take along another person who can take notes, ask additional questions or record your appointment for later review. Sometimes it can be helpful to return home and play back what was discussed.
- Ask for written material or brochures that can help in making treatment or care decisions . These might include information on nutrition, pain management, support groups or hospice or home care.
Other than your doctors, who could include your primary care doctor, surgeons, medical oncologists, and/or radiation oncologists, you will probably have the most contact with your nursing staff and your social worker. These medical professionals can be your best source of practical assistance when trying to navigate the waters of a mesothelioma diagnosis.
All specialized cancer treatment facilities have nurses who are familiar with implementing the cancer treatment plan initialized by your doctor, and are trained to administer medication, monitor side effects and conduct routine tests. Whether you are a hospital inpatient or outpatient, you can benefit greatly from developing a strong working relationship with your nursing staff.
You may also request home visits by a registered nurse, if necessary. If approved by your doctor, these visits may be covered under insurance. Be sure to check with your individual insurance provider for details. Another medical professional you might encounter is a physician’s assistant.
Social workers are a good starting point for newly diagnosed patients who are overwhelmed by their diagnosis and the many things that have to be accomplished and decided.
Some types of social workers include:
- Oncology social workers specialize in assisting those diagnosed with cancer. Most cancer treatment facilities have certified oncology social workers on staff.
- Clinical social workers specialize in providing services aimed at family therapy and counseling, or counseling for those coping with a serious illness.
- Hospital social workers can help find resources in your local area such as home care, transportation services or support groups, and can also help you understand your diagnosis, your treatments and other care options.
Psychiatrists and Psychologists
Because of the emotional issues surrounding a mesothelioma diagnosis, some patients or their family members may benefit from the help of someone trained to deal with depression, anxiety or inability to cope. Don’t be afraid to ask for this type of help for yourself or your loved one – good emotional health is essential to quality of life.
- Psychiatrists are medical doctors who specialize in providing psychotherapy and other general psychological services to their patients. They are licensed to prescribe medications such as antidepressants and sleep aids. (Related: concerns about drug addition during cancer treatment.)
- Psychologists can provide many of the same services as a psychiatrist such as counseling for depression, anxiety, etc., however, they are not medical doctors. Most have PhD’s in psychology and counseling.
Nutritionists and Dietitians
Nutrition is another area that can greatly affect quality of life. Many patients lose weight because of anxiety associated with the diagnostic process, subsequent treatments or the natural progression of mesothelioma. Working with a nutritionist or dietitian as soon after diagnosis as possible is one of the most important benefits you can obtain from your health care team. These professionals can help you be sure you receive enough calories, vitamins and protein to maintain a healthy weight, as well as tailoring a program for those with concurrent health problems such as diabetes or high cholesterol. They can also suggest ways to minimize the side effects of chemotherapy or other aggressive treatment.
Most local hospitals have registered dietitians on staff, or you can ask your doctor to recommend someone in your area. As with other health care needs, check to see whether these services are covered under your insurance. If they are not, there may be community-based services available in your area at no cost.
Hospice and Home Care
- Hospice care is palliative in nature, and provides comfort care by helping to control a patient’s physical symptoms as well as offering emotional and spiritual support. Although in most cases, care is provided at home, there are also hospice facilities that provide full-time care in a hospital setting. You can discuss the benefits of hospice with your doctor, nurse or social worker.
- Home care provides assistance in the home with daily activities such as bathing, meal preparation or household chores. These services are usually provided by a home health aide, and may or may not be under the supervision of a nurse. Ask your doctor, nurse or social worker for Home Health Care Agencies in your area.