Communicating About Your Mesothelioma Diagnosis
Talking to mesothelioma experts about your diagnosis, treatment and overall health can be stressful. Developing clear communication strategies for these discussions and working with your loved ones to create these plans can help you feel more comfortable and ensure your needs are met.
Written by Sean Marchese, MS, RN Edited By Walter Pacheco
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How to Cite Asbestos.com’s Article
Marchese, S. (2023, March 13). Communicating About Your Mesothelioma Diagnosis. Asbestos.com. Retrieved March 23, 2023, from https://www.asbestos.com/support/patient-communication-tips/
Marchese, Sean. "Communicating About Your Mesothelioma Diagnosis." Asbestos.com, 13 Mar 2023, https://www.asbestos.com/support/patient-communication-tips/.
Marchese, Sean. "Communicating About Your Mesothelioma Diagnosis." Asbestos.com. Last modified March 13, 2023. https://www.asbestos.com/support/patient-communication-tips/.
Discussing Your Diagnosis With Your Doctor
When you receive a mesothelioma diagnosis, it’s natural to feel overwhelmed, but it’s important to remember that you’re not alone. There are experts here for you to talk to and help you understand your diagnosis, find key patient resources and improve your quality of life.
One of the first places to start is asking your doctor about finding a mesothelioma specialist who is an expert in the highly specialized field of mesothelioma treatment. Working closely with Patient Advocates can also help you find and schedule an appointment with a specialist for a second opinion and to discuss treatment options.
Find a Specialist Near You
Having a clear set of questions for your doctor, mesothelioma specialist and Patient Advocate can help you more effectively communicate your needs and concerns. Some questions to ask may include:
How can I learn as much as possible about mesothelioma?
As the National Cancer Institute notes, knowing as much as you can about the type of cancer you have may help. The NCI explains that the more you know, the more in control you’ll feel.
Mesothelioma is a rare and aggressive cancer that typically affects the lung, abdomen or heart lining. Asbestos exposure is the primary cause. Educate yourself about your diagnosis, including life expectancy and prognosis. Talk to your doctor and ask questions to help better understand your condition.
Should I consider seeking a second opinion?
Getting a second opinion can be critical. Because mesothelioma is rare and shares symptoms with other conditions, misdiagnosis is possible.
Mesothelioma experts have years of experience diagnosing and treating this specific type of cancer. They can offer the latest in specialized treatments unavailable anywhere else. A specialist can provide more information about your diagnosis and explain differences in treatment.
Can I monitor my symptoms?
The symptoms of mesothelioma can be vague and nonspecific. They may include chest pain, shortness of breath, cough, abdominal pain and weight loss. Breathing difficulty, chest pain or other symptoms may require emergency care. Familiarize yourself with how symptoms progress through the stages of mesothelioma.
Mesothelioma requires prompt and specific treatment. The prognosis for mesothelioma can vary depending on the stage of the disease, the location of the cancer and other factors. By utilizing all the resources available, you can manage your condition and maintain a good quality of life.
Communicating About Treatment and Overall Health
As you begin to navigate your mesothelioma diagnosis, you’ll have questions about your treatment plan. Treatment depends on the stage of your cancer and overall health.
Knowing what to ask your mesothelioma specialist can help:
What treatment options should I explore?
There are several treatment options available for mesothelioma. These include surgery, chemotherapy, immunotherapy and radiation therapy. Ask your doctor about the best treatment plan based on your condition and medical history.
Specialists usually prescribe a multimodal treatment plan. This therapy combines multiple approaches for your specific needs and goals. Ask your doctor to explain what this type of treatment means for you and your specific care needs.
Are clinical trials an option for me?
Some patients who do not respond well to traditional therapy succeed in clinical trials. Ask your doctor if there are clinical trials appropriate for your condition.
Mesothelioma clinical trials can provide access to cutting-edge treatments. These therapies are experimental and may not be widely available.
What can I do to take care of my physical health?
Mesothelioma takes a physical and emotional toll. Eating a healthy diet can play a critical role. Maintaining a balance of key nutrients can help maintain your overall health and strength.
Ask your mesothelioma doctor about the right exercise plan for you. This may need to change throughout your treatment journey, so be sure to speak with your medical team regularly. Getting enough rest to manage your physical health is also key.
Talking About Your Needs With Your Support Network
In addition to medical care, having a robust mesothelioma support system is critical. Support groups and counseling can connect you with others going through similar experiences. They provide a safe space for you to share your feelings and concerns.
Broaching these conversations can be challenging for families as they navigate this mesothelioma journey together. Having conversation starters ready can help ensure your needs and your caregiver’s needs are being met.
How do we build a support system together?
Talk openly about the option of joining a support group. Many patients find fulfillment in hearing directly from fellow mesothelioma survivors about how they’ve navigated their own treatment, built support networks and nurtured hope. It can be very empowering.
Essential mesothelioma resources also include caregiver support. These resources help manage the emotional impact of your diagnosis and help your loved ones as well.
When and how do we tell people about my diagnosis?
Telling others about your diagnosis is a deeply personal decision. It can help for you and your loved ones to be on the same page about if and when you feel comfortable sharing that information.
Talking openly with those closest to you can help you develop a plan or shared strategy. There isn’t one “right” way when it comes to how to tell people that you have cancer. Identify what’s most important to you personally to share.
How do we take care of our emotional health?
A mesothelioma diagnosis can be emotionally devastating. Having a comprehensive support system to address your mental health needs is crucial.
Talking to a therapist can benefit not only mesothelioma survivors, but caregivers and loved ones as well. The diagnosis alone can cause distress, and some cancer treatments may cause feelings of depression.
Talking About Financial and Legal Options
Many people find talking about finances uncomfortable. Planning how to approach these challenging conversations early can help ensure you and your loved ones access available financial resources.
Preparing questions for yourself and your loved ones can help organize your strategies for communicating with financial planners, lawyers and other professional experts who can help you. Preparation can help alleviate some of the stress of the next steps.
What financial planning steps should we take?
Deciding if you’re going to consult financial advisors and mesothelioma lawyers is an important step. Preparing for the expenses of care can feel daunting, but experts can help make the process easier.
Financial resources are available. Understanding what insurance will cover, what expenses to expect and what approach you and your loved ones want to take in your personal financial planning process can help everyone feel prepared.
Should we get legal help?
If you were exposed to asbestos and developed mesothelioma, you may be entitled to compensation that can go toward medical expenses, lost wages and other damages. Consider working with a mesothelioma attorney to explore your legal options.
Your Patient Advocate can connect you to support resources, including legal representatives, to help develop a plan best suited for you. They’ll work with you to receive the compensation you deserve.
When should we complete end-of-life planning?
Completing end-of-life documents and plans can ease stress and worry for loved ones. Work with your family, legal representatives and health care teams to create a comprehensive list of final wishes.
Your document checklist should include a will, power of attorney, organ donor status, do-not-resuscitate orders and more. Legal decisions can also play a role in end-of-life planning. These steps will ensure that your health care team and legal representatives fulfill your wishes.
Remember that every person’s mesothelioma diagnosis is unique. There is no one-size-fits-all approach to managing this condition.