Communicating With Your Doctor When You Have Cancer

You and your family have many questions. You also realize that doctors are notoriously pressed for time. Often, doctors allot only a few minutes for a patient interview. It is therefore essential that you use your doctor-patient time wisely and focus as best you can on the high priority issues. We suggest that you print out this form and bring it with you to your doctors -- but please, don’t expect to ask all of these questions. There are plenty of resources on this website and elsewhere that can answer the bulk of your questions. Come in well prepared and isolate on the truly troublesome issues.

By asking probing questions, you may feel empowered. Moreover, because you have done your research and have intelligent questions, your doctors may take more time with you than usual. They also may be motivated to think outside the confines of their normal practice and begin networking with other specialists, as well as conducting their own research.

Again, because you will likely have limited time to speak with your doctor, you should be selective and begin with questions of immediate concern.

A. Clinical Presentation

1. Symptoms

Common symptoms of mesothelioma include pleural effusions, shortness of breath, labored breathing (dyspnea), chest pain, and reduced lung capacity. These symptoms are seen in 90% of cases of mesothelioma. Other symptoms include cough, fever, fatigue and weight loss.

I am presenting with the following symptoms:

_____________, _______________, _______________

• What do they indicate? How do they relate to the staging of my tumor?
• Do they, individually or combined, indicate possible mesothelioma?
• Should I have further testing?

2. Physical Examination & Laboratory Examination

• Are there signs of pleural effusion? Chest wall mass? Crowding of organs?
• Are there any symptoms compromising the quality or accuracy of the examinations?
• What do my lymph nodes indicate? Are they enlarged?
• What did my blood tests, chest films and/or other laboratory work show?
• Do I have thrombocytosis, that is, an abnormal and unhealthy increase in blood platelet production? Thrombocytosis is exhibited in 60%-90% of mesothelioma patients. • How conclusive is a blood test? Should I have further invasive testing, such as a biopsy? (Issues regarding biopsy are discussed at item "4", below).

3. Diagnostic Imaging

Roentgenographic Examination (a.k.a. X-Ray or Chest Film)

• What indicators of mesothelioma can a chest film show?
• Can a chest film show evidence of pleural plaques? "Parenchymal pulmonary fibrosis", that is, fiber-induced disease of the lung tissue? Pleural effusion? Pleural thickening? (Pleural thickening can be confined to one place or "diffuse", that is, spread out). Can a chest film show the existence of tumorous nodules?
• Is there evidence of contraction of the chest? Loss of lung capacity?
• Do any of these factors, individually or in combination, indicate mesothelioma?
• Should I have further imaging; ie: CT scan? (See below)

Computed Tomography (CT Scan), Magnetic Resonance Imaging (MRI) and FDG-PET Scan

• What advantages do each of these imaging techniques have over chest film?
• What advantages do any one of these imaging techniques hold over another?
• How accurate are each of these in terms of diagnosis?
• How accurate are each of these imaging techniques in terms of staging and prognosis?
• Can these imaging techniques show evidence of pleural plaques? Pleural thickening? Pleural effusion? With what degree of accuracy?
• Can these imaging techniques show irregularities or tumor involvement in my chest wall, pericardium (heart sac), diaphragm, and lymph nodes? Can they show irregularities or tumor involvement in my diaphragmatic and/or pericardial fat planes? With what degree of accuracy?
• Would a combination of imaging techniques provide a clearer, more accurate picture and diagnosis?

4. What other methods of diagnosis are there? (Cytology, Needle Biopsy, Bronchoscopy and Open Biopsy)

Cytology, Needle Biopsy, and Bronchoscopy

• What can you learn from cytology, that is, the study (through tests) of fluid removed from my body?
• What are the diagnostic capabilities and limitations of a thoracentesis (fluid removed from the chest)? Of a paracentesis (fluid removed from the abdomen)? How are these procedures performed?
• Will testing the fluid indicate malignancy? Will it indicate the kind of malignancy, namely, mesothelioma? Can it show the presence of pre-cancerous cells?
• What are the diagnostic capabilities and limitations of a needle biopsy? How is this procedure performed?
• Can needle biopsy help determine staging of my tumor? Is an open or invasive biopsy preferred?
• Can a needle biopsy help determine the cell type of my tumor? In other words, can it distinguish between epithelial, sarcomatous, and biphasic mesothelioma?
• What are the diagnostic capabilities and limitations of a bronchoscopy? How is this procedure performed?
• Is an open or invasive biopsy preferred?
• Can a bronchoscopy help distinguish between epithelial, sarcomatous, and biphasic mesothelioma?

Open Biopsy, Including Video-Assisted or Guided Biopsy

• Should I have an open biopsy, that is, invasive surgery to harvest tissue from my body for diagnostic testing?
• What kinds of imaging tools (such as CT scan or thoracoscope) are available to assist or guide open biopsies? What are the advantages of one tool over another?
• What are the diagnostic advantages of video-assisted biopsy? Can it show progression? Should it be combined with any other diagnostic techniques?
• Will this technique jeopardize my chances of attaining future treatment? If so, how?
• What is intraoperative frozen section analysis?
• What is immunohistochemical staining? How much tissue do you need to perform this kind of testing on tissue?
• How conclusive is immunohistochemical staining?
• Should I have multiple biopsies performed to ensure accuracy?

B. Treatment

• Does my physician believe in treating the tumor aggressively when possible?
• Does my physician favor chemotherapy, radiation therapy or surgery to treat my tumor?

1. Effusion Control/Pleurodesis & The Problems of Staging

• What are the available methods for controlling a pleural effusion?
• Will any of the treatments for the effusion jeopardize future treatment of the actual tumor? How do any of them affect survival rates?
• What is the difference between a talc pleurodesis and a chemical pleurodesis? Does the talc pleurodesis prevent future pleural effusions? If I undergo a talc pleurodesis, will I be precluded from any surgical orptions, or from promising clinical trials using chemotherapy?
• What are the methods of staging mesothelioma’s progression? What do the stages mean?
• What is the best method to determine stage without compromising future treatment options?
• What external factors (such as stress and diet) affect my present and future staging? Can I control them?

2. The Surgical Issue

• What are the surgical options for treating mesothelioma?
• Thoracoscopy with pleurodesis
• Pleurectomy/decortication (P/D)
• Extra-pleural pneumonectomy (EPP)The following issues should be considered before choosing surgery:
• Pulmonary evaluation
• Cardiac evaluation
• Do I have a resectable tumor?
• What is a "margin"? What are negative and positive margins?
• How does tumor metastasis affect my surgical treatment options?

3. Pleurectomy/Decortication (P/D) vs. Extra Pleural Pneumonectomy (EPP)

• What does each procedure entail?
• Should I choose a palliative surgical option, that is, a surgery which will relieve my symptoms but does not promise a cure? Or should I choose a "curative" surgical option, that is, a surgery which offers a chance of long-term survival? What are the practical differences between palliative and curative surgeries?
• What are the complications that can arise from each procedure?
• What is the median survival time for each procedure?
• What are the survival rates for each procedure at six months? One year? Two years? Five years?
• What is the mortality rate for each procedure?
• Can the survival rates be affected by additional therapy? Previous therapy?

4. Adjuvant Therapies

• What are the advantages (if any) of multi-modality therapy, that is, combining one type of therapy, such as surgery, with another, such as chemotherapy?
• Can you refer me to a published article that correlates various therapies with survivals?
• What are the different multi-modal therapies?
• What chemotherapies are available to mesothelioma patients?
• Should chemotherapy be administered before, during or after surgery?
• What drug or drug combination do you favor?
• Can you refer me to a published article on the survival statistics that correlate with the chemotherapy regimen?
• What radiation therapy is available to mesothelioma patients?
• What are angiogenesis inhibitors? What trials (if any) are available?
• What are EGFR inhibitors? What clinical trials (if any) are available?
• What is gene therapy? What clinical trials (if any) are available?

5. Pain Management

• If I have surgery, what types of narcotics (if any) would you prescribe and how long would I need to take them?
• What can I do to reduce post-surgical pain myself?
• Are there any exercise regimens I can adopt in order to reduce pain?
• Are there any exercise regimens to enhance my recovery that I perform with my pain?
• Is it true that my risk for becoming addicted to painkillers is extremely low?
• Are there differences between generic and brand painkillers that could affect my condition?
• Are there any complications with any painkillers I might take?
• How do I balance pain relief with an acceptable quality of life?
• Do the painkillers have any side effects?
• What is the difference between nonsteroidal anti-inflammatory drugs (NSAIDs) and opioids? Will one treat my pain more effectively than the other?
• How can we ensure that my painkillers will not lose their efficacy over time?
• Are there surgical methods of relieving pain if nothing else works? If so, what are they? Would they compromise my overall treatment?
• What is a nerve block?
• What is a nerve cordotomy?
  

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