Patients and Families: Frequently Asked Questions

• How do I make an appointment?

  All new patients to the International Mesothelioma Program (IMP) must register. The first step is to call the Brigham and Women’s Hospital (BWH) Division of Thoracic Surgery at 1-617-732-5922 and ask to speak with one of our New Patient Coordinators.
  
  The New Patient Coordinator will ask you for information about yourself and your insurance, including the nature of your illness, plus contact information for your local doctor or the physician who referred you to the IMP.

  The Coordinator will walk you through the formal BWH registration process. He or she also will set up your appointment and provide the name of the surgeon who will be meeting with you, along with instructions about what to bring to the appointment. The New Patient Coordinator will answer any questions you may have or, if not, will put you in contact with the appropriate person.

  Alternatively, you can request an appointment online. Please click on the New Patient Appointment/Referral Form and fill out a simple form. If you submit the form online during normal business hours (7:30 am- 5 pm EST), your inquiry will be answered within 15 minutes.

• How long will I stay in Boston for the initial appointment?

  Most people think of a doctor’s appointment in terms of an hour or so. But because making a diagnosis of mesothelioma is so complex, we recommend that patients plan to be in the Boston area for four days (usually Sunday through Wednesday) as their schedules permit.

  Typically, we perform some tests (such as blood work, an MRI, and other tests) the day before the actual appointment, which normally is on a Tuesday. The Tuesday appointment includes a new patient orientation meeting in addition to your appointment with members of the IMP’s team of doctors.

• How long will it be between the initial appointment and my surgery?

  The timing varies for each patient, depending on our findings and test results from the initial appointment. Determining whether a patient is a candidate for surgical treatment can take a couple of days. If surgery is the recommended treatment, it normally can be scheduled within one or two weeks. For some patients, the IMP team may recommend chemotherapy prior to the surgery. This is usually coordinated with the patient’s hometown doctors.

• Where could I stay?

  
  The Thornton House is a “home away from home” for mesothelioma patients and their families. The house is located at 48 Francis Street just across the street from the main entrance of Brigham and Women’s Hospital (BWH). Each level of the triple-decker house can accommodate up to three families at a time, one family per room, with many shared or common areas.

  BWH works with local hotels and inns who offer discounted rates for BWH patients. Similar rates are available in a number of nearby hotels.

  IMP and BWH staff members are knowledgeable about additional resources to respond to the housing needs of patients and families when they travel to the Boston area for medical treatment.

• How long does surgery typically take?

  
  The length of the surgery depends on several factors, including the type of surgery being performed, whether adjuvant therapy occurs at the same time, the overall health of the patient, and many other variables.

• What types of surgery are available at the IMP?

  
  There are two basic types of mesothelioma surgery. The decision as to which operation is most appropriate is determined for each patient by the IMP team.

  • Extrapleural pneumonectomy (EPP)
    This surgery involves removal of the affected lung and also the pleura (the sac or membrane that covers the lung and lines the chest cavity), portions of the pericardium (the sac that surrounds the heart), and the diaphragm.
  • Pleurectomy/decortication (P/D)
    This surgery involves removal of the pleura (lining of the chest).

  In both cases, the goal of surgery is to remove all visible tumor. This is a prime contributor to extension of life for mesothelioma patients.

  After removing all visible tumor, the surgeons use a variety of techniques, including hydrogen peroxide dissolution of the tumor cells, argon laser treatment of the surgical area, and an intraoperative heated chemotherapy wash to kill residual tumor cells.

• What resources are available to me during my stay?

  
  While in the hospital, patients can expect regular visits from members of the thoracic surgery care team, which includes doctors and support services staff (social worker, chaplain, patient navigator).

  Once discharged, the IMP has specially trained nurses who are familiar with thoracic surgery and mesothelioma (Nursing Liaisons, Inc.), who help with a patient’s transition from inpatient to outpatient.

• How long should I expect to be in the hospital after surgery?

  
  Most patients with mesothelioma stay in the hospital a week or so after surgery.

• What happens when I leave the hospital?

  
  While some patients go to rehabilitation facilities to continue their recovery, many stay in nearby hotels after discharge, with visiting nurses making “house calls” to their hotel rooms. We recommend that discharged patients stay in the area for one to two weeks, prior to a final follow-up visit with the surgeons, when they are cleared to go home.

• What happens when I go home?

  
  Members of the IMP team coordinate with your hometown doctors (your primary care physician, oncologist, and any others) to bring them up to date about your surgery and the recovery process. We work together with your local doctors on a plan for follow-up treatments at home, which might include radiation therapy and chemotherapy. At all times, clinicians and members of the support services team are just a phone call away.

• When should I expect to come back to the IMP after my surgery?

  
  For a typical patient, the first follow-up appointment at the IMP is 10-14 days after discharge. The next follow-up is six to eight weeks after surgery.

  For a typical patient, subsequent visits occur every four months for two years, then every six months thereafter.

• Will the IMP team continue to direct my care?

  
  Yes, we work together with your hometown doctors to follow through on your care plan.

• Can I bring a family member or friend with me?

  
  We encourage a family member or close friend to accompany patients for all major “milestone” appointments, such as the initial appointment, at the time of the confirmation of a diagnosis, for surgery, and so on. Having an extra person with you not only gives you emotional support, but he or she can also be your “advocate,” offering a second pair of ears, taking notes, and asking questions.

  Because the role of caregivers is so important, we offer support groups for them as well as for our patients.