When I was first diagnosed, I had never heard of mesothelioma. I didn’t know where to turn or how to access valuable resources and information. Before I get into the five things I wish I knew immediately after diagnosis, I encourage you to go to curemeso.org (Mesothelioma Applied Research Foundation). They are a nonprofit, independent organization; and are a wealth of information about all forms of mesothelioma. This includes the latest medical research, the most qualified medical providers for this rare cancer and practical support. The Mesothelioma Applied Research Foundation also offers a strong community support network that is unparalleled. Send me a message if you need help getting connected.
1. Early Action is Key
The importance of taking early action cannot be overstated. Once you receive a mesothelioma diagnosis, it’s vital to understand the need for prompt decision-making. Mesothelioma is an aggressive cancer, and while it can take years to develop, once symptoms appear, the disease tends to progress quickly.
Why is Early Action Critical?
The window for effective treatment is often limited, particularly in advanced stages of mesothelioma. Early-stage mesothelioma may offer more treatment options, such as surgery combined with chemotherapy and radiation. These interventions can significantly extend life expectancy and improve your quality of life.
Here’s why early action is important:
- More Treatment Options: Mesothelioma caught in its early stages offers a greater chance for surgery. Procedures like pleurectomy/decortication (P/D) or extrapleural pneumonectomy (EPP), along with chemotherapy or radiation, can be viable treatments to remove tumors and extend survival. For peritoneal mesothelioma, procedures like Cytoreductive Surgery (CRS) with Hyperthermic Intraperitoneal Chemotherapy (HIPEC) can be a lifesaving option if diagnosed early enough.
- Clinical Trials: If you act quickly, you may qualify for clinical trials exploring new and cutting-edge treatments like immunotherapy, gene therapy, or targeted therapies that could provide innovative ways to combat mesothelioma.
- Symptom Management: Early intervention allows doctors to manage symptoms more effectively, improving your overall comfort. Procedures to drain fluid can alleviate pain and breathing difficulties.
What Can You Do?
The first step after diagnosis is getting a second opinion from a mesothelioma specialist. Many doctors lack experience with this rare cancer, so it’s critical to work with a specialist who can outline the best course of action based on your specific situation. Keep in mind that acting quickly does not mean rushing without understanding. Take the time to gather information, consult with multiple experts, and then proceed with a treatment plan.
2. Specialized Care is Essential
Mesothelioma is unlike other cancers, and receiving care from a general oncologist may not give you access to the best possible treatment. The rarity of mesothelioma means that many oncologists do not have sufficient experience with the disease, and standard cancer treatments might not be effective. This is why seeking specialized care is crucial.
What is a Mesothelioma Specialist?
A mesothelioma specialist is a doctor who has extensive experience in diagnosing and treating this specific type of cancer. They work at cancer centers known for their expertise in asbestos-related diseases, and they stay updated on the latest research and clinical trials.
Why Choose a Specialist?
- Expertise in Mesothelioma Treatment: General oncologists may follow a one-size-fits-all approach to cancer, but mesothelioma is unique and requires specialized knowledge. Mesothelioma specialists can offer personalized treatment plans based on your stage, location, and overall health.
- Access to Advanced Treatments: Specialists often have access to advanced treatments that may not be available to other doctors. They are also more likely to be involved in clinical trials for new therapies, offering you options that general oncologists might not be able to provide.
- Experience with Surgical Procedures: Mesothelioma surgeries are complex and should only be performed by surgeons experienced with mesothelioma. A mesothelioma specialist will be better equipped to handle the intricacies of these surgeries and improve the chances of success.
- Better Prognosis: Patients who see mesothelioma specialists tend to have better outcomes. These doctors are more familiar with the disease’s progression and are adept at managing complications and side effects.
Where Can You Find a Specialist?
Several cancer centers and hospitals across the country have mesothelioma programs. Some of these include the National Institute of Health, MD Anderson Cancer Center, Brigham and Women’s Hospital, and Mayo Clinic. Research the top mesothelioma specialists and choose the one with experience tailored to your specific needs. Don’t be afraid to travel if necessary – getting the right can could significantly improve your treatment outcomes. Again, curemeso.org is a great resource to help you find the best specialists for your specific situation.
3. Support Networks are Vital
The emotional toll of a mesothelioma diagnosis is significant, and navigating the physical, mental, and financial challenges can feel overwhelming. Having a support system in place is one of the most important factors in coping with this disease.
Emotional and Mental Health Support
After diagnosis, many patients experience a range of emotions, from anger and fear to sadness and grief. The uncertainty of the future can weigh heavily on you and your loved ones. It’s normal to feel overwhelmed, but you don’t have to face it alone.
- Join Support Groups: Connecting with others who are facing similar challenges can offer comfort, validation, and valuable advice. Mesothelioma support groups, both in-person and online, can be a lifeline for patients and their families. These groups provide a safe space to share experiences, frustrations, and victories. Many support groups are specifically tailored to mesothelioma patients, and you can find these through the Mesothelioma Applied Research Foundation.
- Counseling: Professional counseling or therapy can help you process your emotions and find ways to cope with the mental stress. Grief counselors, psychologists, or social workers who specialize in cancer patients can offer valuable insights and coping strategies.
- Family Support: Don’t hesitate to lean on family members and close friends for support. They can help with day-to-day tasks and provide emotional stability during challenging times. Keeping open lines of communication with your loved ones will make it easier for them to understand your needs and support you.
Practical Support
Dealing with mesothelioma often means managing a myriad of practical challenges, from handling finances to navigating treatment schedules.
- Caregiver Assistance: Appointing a caregiver, whether a professional or a family member, can be incredibly helpful. They can assist with scheduling appointments, administering medications, or simply providing companionship.
- Financial and Legal Help: Medical bills, travel expenses, and the cost of specialized care can add up quickly. Many organizations offer financial aid to mesothelioma patients. Seeking financial counseling early on can help you plan for future expenses. Additionally, many support organizations can guide you through accessing resources and aid programs.
4. Legal Rights and Compensation
Mesothelioma is a preventable disease, caused by asbestos exposure. Many cases of asbestos exposure are linked to occupational hazards, where companies failed to protect their workers from the dangers of asbestos despite knowing its risks. As a result, mesothelioma patients have legal rights to seek compensation for their illness.
Why Legal Action is Important
Medical treatments for mesothelioma can be incredibly expensive. Legal action can help provide financial compensation to cover the costs of treatment, as well as lost wages, pain and suffering, and other damages. Many mesothelioma patients receive settlements or verdicts that can alleviate the financial burden of this disease. Unfortunately, the majority of law firms prey upon those who have been diagnosed with mesothelioma. I can provide a list of vetted law firms if you need assistance.
Be aware: If you order a free mesothelioma book online or submit any information on mesothelioma-related websites, it’s likely part of a lead generation tool for law firms. You may start receiving calls from lawyers or legal representatives shortly after.
Steps to Take
- Consult an Asbestos Attorney: Specialized asbestos attorneys have experience handling mesothelioma cases. They can help you navigate the legal process, file claims, and pursue compensation from the companies responsible for your exposure.
- Know Your Rights: You may be entitled to compensation from asbestos trust funds, which have been set up by companies that declared bankruptcy to pay victims of asbestos-related diseases.
- Workers’ Compensation: If your asbestos exposure occurred while you were employed, you might be eligible for workers’ compensation benefits. These benefits can help cover lost wages and medical expenses.
- VA Benefits: Veterans who were exposed to asbestos during military service can file for VA benefits. The U.S. military used asbestos extensively, particularly in Navy ships, putting veterans at high risk for mesothelioma.
Timing Matters
The statute of limitations for filing a mesothelioma claim varies by state, but it is usually between one and three years from the time of diagnosis. This means it’s crucial to act quickly to preserve your right to compensation.
5. Quality of Life is Just as Important
When dealing with mesothelioma, it’s natural to focus on the goal of extending life expectancy through treatments like surgery, chemotherapy, and radiation. However, quality of life is just as important as the duration of life.
What is Quality of Life?
Quality of life refers to your physical, emotional, and mental well-being during your treatment journey. It encompasses everything from pain management and mobility to mental health and the ability to enjoy meaningful activities.
How to Improve Quality of Life
- Palliative Care: Palliative care is specialized medical care that focuses on relieving symptoms and improving comfort. Unlike curative treatments, palliative care aims to enhance your quality of life, whether you’re undergoing aggressive treatment or focusing on symptom management. Palliative care teams work alongside your cancer doctors to help manage pain, difficulty breathing, fatigue, and other symptoms.
- Pain Management: Effective pain management is essential for maintaining a good quality of life. Mesothelioma can cause significant discomfort, but there are many ways to manage pain, including medications, nerve blocks, or even integrative therapies such as acupuncture or massage.
- Physical Therapy: Mesothelioma treatments can weaken your body, but physical therapy can help you maintain strength, mobility, and independence. Even gentle exercises like walking or yoga can significantly improve your physical well-being.
- Emotional Support: Prioritize your emotional health by staying connected with loved ones, participating in hobbies you enjoy, and seeking out mental health support. Depression and anxiety are common among cancer patients, so it’s important to address your mental well-being proactively.
- Diet and Nutrition: Eating well can also improve your quality of life. Nutritional counseling can help you find the right balance of nutrients to boost your energy, maintain weight, and support your body through treatment.
Why It Matters
A good quality of life can make a significant difference in how you experience your mesothelioma journey. By focusing on comfort, emotional well-being, and physical health, you can make the most of your time, regardless of your prognosis.
Conclusion
A mesothelioma diagnosis is a difficult and overwhelming experience, but there are important steps you can take to manage the disease and improve your outlook. Acting quickly, seeking specialized care, surrounding yourself with support, knowing your legal rights, and prioritizing your quality of life are all essential in navigating the challenges ahead.
Remember, you’re not alone in this fight. Thousands of people are walking the same path, and with the right care and support, you can make informed decisions that give you the best chance at living well with mesothelioma.