Straight Talk about Mesothelioma, a blog series created by Michael T. Milano, M.D., Ph.D., a radiation oncology specialist, as a resource for mesothelioma patients and their loved ones.

No one ever thinks they will be forced to confront mesothelioma — it is extremely rare with approximately 3,200 people diagnosed every year. When a patient does receive that unexpected news from their doctor, they are generally faced with many questions.

Most doctors try to address the basics of everything you need to know upfront. That includes exact details of your diagnosis and what the best course of treatment may be. Physicians can get very involved in the science and medicine behind a diagnosis and treatment, which admittedly, can be overwhelming for anyone.

Most cancer patients want to know one thing: Am I going to survive?

Take Control of Your Mesothelioma Prognosis

How your doctors initially choose to explain your prognosis is up to them, but you have the ability to guide the conversation. After all, this is truly a life or death discussion.

  • Tell your doctor upfront what you want to know and what you don’t want to know. If you are not ready to learn about your prognosis (i.e. average survival, life expectancy), let your doctor know this. At some point, you will need to know this information to make informed decisions about your treatment as well as personal and financial decisions, but not everybody is ready to face being told that they have a terminal disease without processing other information first. A doctor’s discussions with mesothelioma patients are incredibly delicate situations, so your doctor will probably be thankful for your honesty. If you want to know prognosis, you must know that no physician can specifically predict what will happen to you, as there are a range of possible outcomes. Certain factors of the cancer (see below) can help a doctor better predict prognosis. Even if there is no likelihood for a cure, there is no way to accurately predict what will happen specifically to you. Some patients like to know the worst case scenario, while others prefer a more optimistic approach.
  • A lot of different help a doctor determine prognosis, so if you want to know how your doctor came to yours, just ask. Every case of mesothelioma is different, so general statistics, may not apply to your specific situation. Make sure they are considering:
  • What the cancer looks like on body scans (CT, PET, MRI), including:
    • The location and type of mesothelioma
    • Stage of the disease
      • Metastasis, or how much the cancer has spread
    • What the cancer looks like under the microscope
    • Cell type (there are 3 different kinds)Your general health
      • Your age
      • How well you function in day to day tasks (performance status)
      • Your history of smoking
      • How well you breath at rest and with exertion
        • Pulmonary function
      • Your cardiac (heart)
      • Other health issues
  • After a prognosis has been discussed, ask your doctor how various courses of treatment could affect that prognosis. For example, would your prognosis improve if you opted for both chemotherapy and surgery, versus chemotherapy and radiation? Are there any drugs currently in clinical trials that could improve your prognosis? Is there anything you can do at home, like change your diet or begin exercising, to improve the prognosis?
  • Be clear with your doctor about your priorities when it comes to your prognosis. Some patients are willing to do whatever it takes to live longer, while others are not willing to sacrifice quality of life in the name of a few extra months on earth. Your doctor is not a mind reader, so make your wishes known so they can adjust treatment accordingly.

The Truth about Receiving a Mesothelioma Diagnosis

When discussing details of your prognosis with your doctor, it can help to be realistic from the beginning. Start from that place of realism, and then view it however you choose.

For example, on average, mesothelioma patients survive about 4-18 months after diagnosis. That is the realistic time frame. However, some patients have gone on to live more than 10 years. There are advancements being made every day in the treatment of mesothelioma and while there is not currently a cure, there are many life-extending options that could be available to you.

You are in control when it comes to how you learn about your mesothelioma prognosis. Listen to your doctor, ask key questions, and don’t be afraid to communicate your wants and needs as you fight this battle.