Managing Your Care

Mesothelioma is a major challenge and keeping up with activities involving your treatment and doctor visits can be overwhelming. The patient, the family, and close friends are faced with new and unfamiliar experiences. A methodological approach to your care can often make life easier for everyone.

The concept of a personal medical file is becoming more popular, and these files can be especially useful for cancer patients who see multiple doctors and receive treatment at more than one location. The personal medical file helps ensure that you always have access to critical data (even when your doctor’s office is closed) and there is a backup of the most important documents. When you visit a new health care provider, you will have comprehensive access to the information they need. More on personal medical files.

Keeping track of the medications you are taking can be a hassle, especially given the amount of prescriptions the typical mesothelioma patient takes. You need to know what medicines you are taking, which doctor prescribed them, what the dosage is and how many pills a day you take. A formal file and notebook organizer can help here. More tips on managing your medications.

Keeping track of your expenses is important. Everyone has different financial resources, insurance coverage, and Medicare eligibility. Many mesothelioma patients can get compensation from the asbestos industry, which can help with medical costs. Whatever the source of your funding, you need to keep track of all bills from hospitals and clinics, bills from drugs stores, and insurance claims and payments. Tips on managing your expenses.

Because mesothelioma is a rare cancer, your doctor may not have much experience dealing with it. There is nothing wrong with getting a second opinion from another physician. Here are some ideas on second opinions. You may wish to look at our list of mesothelioma specialists. Contact us if you are interested in reaching these doctors. Note that the type of doctor that specializes in cancer treatment is called oncologists. However, because mesothelioma is so rare, even most oncologists have seen a limited number of cases. Also you may wish to look into the community clinical oncology program, sponsored by the federal government, which offer access to clinical trials to patients at cancer centers around the country.

Keeping a Personal Medical Records File

When you or a family member is going through the diagnostic process, or are being treated for mesothelioma, it is an undeniable fact that there will be a multitude of paperwork and reports involved. Although each individual medical professional or facility will keep its own record of your care, it is also important that you maintain an accurate, up to date medical history of your own.

It is likely that several different doctors, possibly at various locations, will be involved in your care, and each will generate a series of test results, treatment reports, scripts for medications, etc. By consolidating and organizing this information in one file, you will always have access to what you need if questions arise, or if a report is lost or inadvertently destroyed. It will also give you an opportunity to go over your records in your own time, and make note of any questions or concerns you might have. In this way, you will become a more active participant in your health care, and will feel more knowledgeable and in control of your situation. Keeping a personal medical file is also helpful in managing your health insurance claims, taxes and other legal matters.

Your personal medical record file should include the following:

• Information on past medical history, including the dates and details of any previously diagnosed illnesses such as diabetes or heart disease.
• Information on past physical examinations and screening tests.
• Immunization records.
• Contact information for all doctors, clinics and/or hospitals involved in your diagnosis, treatment or other care.
• Dates of initial diagnosis and a schedule for subsequent treatments.
• Copies of reports and diagnostic tests, including laboratory results, pathology reports and imaging tests (x-ray, CT, MRI, PET).
• Treatment information including surgical reports, names and dosages of drugs used for chemotherapy and sites and dosages for radiation therapy.
• Notes on treatment results including any complications or side effects experienced.
• Information on supportive care such as pain management or nutritional support. All medications you are taking, including prescription and over the counter drugs, should be listed by name, dosage and how often they are taken.

If you have been diagnosed with mesothelioma, it is best to collect information for your file each time you have an appointment, test or procedure. At each doctor appointment, ask for any records being added to your file, and if you have a laboratory test or a procedure of any kind, request a copy of the test results or the procedure report. If you are hospitalized for any reason, request a complete copy of your hospitalization records when you are released. Keep copies of medical bills and insurance claims.

How you organize your file is a matter of personal preference. Some people prefer a filing cabinet, while others prefer a folder, binder or box; some prefer to scan documents into a computer file. Records can be divided according to date or by category such as appointments, tests or treatments. However you choose to compile your file, be sure it is stored in a safe place. You may wish to leave an additional copy with a relative or friend in case of emergency.

The Health Insurance Portability and Accountability Act of 2003 assures that all patients have access to their medical records, so if you did not start a medical file when you were first diagnosed or treated, you can still obtain the information you need. In this case, it may be necessary to request your records in writing, and you may need to complete an "Authorization to Release Medical Information". Unfortunately, requesting records after the fact can take time, and you may be charged copying fees.

Related: Managing your medications.

Managing Your Medical Expenses

The volume of paperwork involved in managing insurance claim forms, co-pays, benefits statements, etc., can be overwhelming for a mesothelioma patient who is trying to concentrate on their health care, but by keeping organized, accurate records, you can eliminate unnecessary stress.

Perhaps the simplest way of keeping information to be referred to when filing an insurance claim, is to use a paper calendar to make note of all doctor's appointments, lab tests, procedures and treatments, as well as prescription drugs purchased. If this information is recorded on the day it occurs, you will have a complete chronological record when you need it. Other records you should organize in an expandable folder or binder include:

• Bills from all health care providers.
• Bills or receipts for prescription drugs.
• Receipts from co-pays or other health care related costs.
• Insurance claims filed.
• Reimbursements received.

Keeping medical expenses entered on a basic computer spreadsheet is another option, or, there is specialized software available for those who prefer a better display of information and the ability to search for and sort information. One of these programs is the "Medical Expense Manager" offered by Quicken. This program will allow you to track and organize medical expenses, tax deductions, medical and prescription history for multiple individuals, insurance payments and deductibles and billing or claims disputes.

Another alternative is to hire someone to manage your claims for you, and if you feel you need professional help, there are health insurance claims assistance services available in many areas. These professionals can file and track claims, contact health care providers and insurance companies to resolve claim issues, review medical bills for accuracy and appeal rejected claims. Fees for services rendered can vary significantly according to provider.

For those with Medicare coverage, a health insurance assistance program is available in every state. Counselors can help Medicare recipients understand their benefits, and can make suggestions on establishing a record keeping system.