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.
Receiving a diagnosis of late-stage mesothelioma is devastating. Unfortunately, because of the way the cancer grows and spreads, many people don’t get diagnosed until they have an advanced stage (i.e. stage 3 or 4). Sometimes a proper diagnosis may take a while. In fact, symptoms may present 20 to 50 years after exposure and can even mimic other illnesses.
If you, or someone you know and love, has recently been diagnosed with late-stage mesothelioma, you aren’t alone. It’s estimated that over 3,200 people are diagnosed every year with this disease, with two-thirds being over the age of 65.
How Is Mesothelioma Diagnosed?
An oncologist will determine whether an individual likely has mesothelioma based on diagnostic tests, such as X-rays, MRIs, CT scans, and PET scans. A biopsy is needed to confirm the diagnosis. It’s important to relay all information about present and previous symptoms to your oncologist, as well as providing a comprehensive medical history, so that they can determine which tests need to be ordered. From these tests, your doctor can come to a diagnosis.
What Are the Treatment Options?
Depending on the stage of mesothelioma, there are a different treatment options doctors may suggest. For an early-stage cancer, multimodal therapy – consisting of surgery, chemotherapy, and radiation – may be recommended.
Stage 3 Treatment Options:
With stage 3 mesothelioma, curative surgery may or may not be an option. Other treatments, such as chemotherapy and radiation, will certainly be discussed on a case-by-case basis. Of course, it is ultimately up to you and your doctor as to whether or not surgery and chemotherapy are the best options.
Stage 4 Treatment Options:
With stage 4 mesothelioma, treatment is considered palliative in nature, meaning that the treatments may prolong life, and improve quality of life, but will not cure the cancer. Your doctors will focus on reducing pain and improving other symptoms from the cancer.
What Comes after Diagnosis and Treatment Planning?
Step 1: Acceptance
Because mesothelioma is a long-latency disease with a short mortality rate, a diagnosis may come as a shock – especially for those who didn’t work in an asbestos-related field. However, those who have been diagnosed could have spent their entire career with on-the-job exposure to asbestos in their workplace.
Part of accepting a mesothelioma diagnosis is fully understanding what it means. If you were alone when your doctor shared the news, ask for a follow-up appointment where you can ask additional questions, and bring someone you trust with you to take notes. The better informed you are, the better you’ll be able to make decisions about treatment and plans for your future.
Step 2: Prepare for the Future
The next step in staring down a mesothelioma diagnosis is taking necessary actions to prepare for your future. Communicate your end-of-life wishes with your family and close friends. While this may be a tough conversation to have with your loved ones, you will be the person in control of your life, not anyone else. Topics to discuss include whether you’d like home-care, hospice, or hospital treatment. Funeral, financial, and estate planning should also be done as soon as possible after a diagnosis.
Preparing for the future doesn’t have to be all “tough conversations” and “doom and gloom.” Is there anything you’ve been interested in trying? Do you want to learn something, visit a new location, or eat a delicacy you’ve been nervous to try in the past? Do it! If you have a bucket list, get started crossing off the fun and exciting items. If you don’t, grab a pen and paper and jot down some ideas of things you’d like to accomplish.
Step 3: Support Helps
Remember, after receiving a late-stage mesothelioma diagnosis, you don’t need to process the news alone. You’ll likely be assigned a case manager or social worker to help you through this difficult time and begin planning for your future. If not, ask your doctor for recommendations for a mental health counselor or a newly-diagnosed cancer-patient support group.
If the idea of attending a support group makes you feel uncomfortable, reach out to your friends, family, and colleagues. The people in your life may feel unsure of how to help you. Be vocal; if you need support or encouragement or anything else – ask for it!
Reading mesothelioma survival stories is another way to boost your spirits. There are many great news stories online you can digest while waiting for appointments or browsing the Internet. Ask your practitioner if they can put you in touch with other survivors. A one-on-one conversation may make you feel more comfortable than a group setting.