Controlling Your Care

While many health care practitioners play important roles in mesothelioma cancer care, there is no more important decision-maker than the patient. Decisions about mesothelioma cancer treatment can broadly impact a patient’s physical and emotional health, as well significantly affect family members. So it is important for patients to actively understand their mesothelioma and guide treatment choices.

The moments after hearing a mesothelioma diagnosis are difficult. Often patients and caregivers do not absorb many of the things they are being told, much less come up with questions that will help them grasp what they need to know. But planning for subsequent visits with an oncologist, oncology nurse, social worker and others can help you understand what lies ahead and be proactive in your care.

Many people with complicated illnesses prepare for medical visits by reading reliable information online and writing down questions in advance; scheduling a longer appointment to get their questions answered; and bringing lists of their medications and other medical information. It’s also a good idea to take notes during medical visits of what is said. Some people bring along a caregiver or friend to take notes and also ask questions (see Communicating with Your Doctor). Such measures can help patients better understand the complexities of their case, their options and the likely effects of treatment.

Seeking a Second Opinion

For a serious, and relatively uncommon, cancer such as mesothelioma, it is a good idea to seek a second opinion about your treatment options. Start by discussing your condition thoroughly with your first oncologist, making careful note of what treatments are recommended, when (in what order), and why, based on the particulars of your case. Ask how this is expected to affect your health, what are the likely drawbacks and side effects, and what are the potential benefits. Be sure to pursue all your questions thoroughly, because it will help you be even more effective in gathering information during a second consultation, with another oncologist.

Also ask your first oncologist how many patients with mesothelioma he or she has treated and where you might find another oncologist (typically at a major or academic cancer center) who is experienced in treating the disease in order to get a second opinion. Remember that mesothelioma physicians are accustomed to people with serious illnesses seeking second opinions, and are not offended when you pursue one. Also, if you do not live near a large cancer center where you can consult with a mesothelioma physician, ask about arranging a telephone consultation.

Once you arrange for a second opinion, ask the first doctor’s office to have all your medical records, test results, scans and other materials forwarded to the second doctor—and then confirm those records have been received in advance.

Just as with the first doctor, ask all the questions you need to ask so you can understand your condition and this doctor’s proposed treatment plan. Ask the second doctor to compare the advantages and disadvantages of the treatment plan he or she recommends with those of the plan recommended by the first doctor. As with the first doctor, carefully record this doctor’s insights and recommendations to help your decision-making.

Whichever doctor and treatment plan you choose, it’s important to build a trusting relationship with your mesothelioma care providers, so you can communicate freely about your concerns and be confident those concerns will be addressed.

It’s Your Decision

No matter what a doctor advises, ultimately decisions rest with the patient—and, in fact, patients (or their designated parties) must agree informally or formally to all treatments. In other words, patients have the right to refuse care. But they should discuss the reasons for particular decisions with their doctors thoroughly. For instance, a patient might be fearful of chemotherapy’s effects and not want to undergo it, but unaware that there are medicines that can alleviate related problems like nausea and vomiting.

For treatments that might carry large possible risks, such as surgery, asbestos cancer patients are typically asked to agree in writing to receive the care. But it’s important that a detailed discussion of the treatment happen first. Typically this involves learning about the proposed treatment, its risks and benefits, how it will affect the patient’s daily life, and the risk of not receiving the treatment.

Asbestos cancer patients should be sure all their questions are answered, and to take time to discuss the treatment with loved ones and other medical professionals as needed before deciding. Also, patients should not be pressured to opt for any particular plan over another.

This process is known as “informed consent.” Once the patient has had the chance to learn fully about the treatment, he or she is typically asked to sign a consent form, acknowledging that the informed consent process took place and that he or she agrees to the treatment plan. But even then, patients are free at any time to change their mind and revoke their consent.