Receiving a diagnosis of mesothelioma can be devastating news. Mesothelioma is a rare and aggressive form of cancer, and the diagnosis often comes as a shock, especially if you have limited knowledge about this disease. You may feel frightened, anxious, and overwhelmed as you try to process the news and figure out the next steps.
However, it’s important to remember that a diagnosis is not the end – there is still hope for you. Taking action right away after your diagnosis can help you get the best treatment, improve your prognosis, and maintain a good quality of life.
Here are six important things to do after receiving a mesothelioma diagnosis.
1) Learn as much as you can about mesothelioma
One of the first things to do after a mesothelioma diagnosis is to educate yourself as much as possible about the disease. Spending time researching the different types, typical prognosis, and treatment options will help you understand what to expect at each stage.
This will allow you to be an active participant in your care – you can ask informed questions and weigh in on treatment options. Education empowers you to make the best choices for your unique situation.
Connecting with a mesothelioma support group can also provide invaluable real-world insight into living with the disease from others experiencing it firsthand. Support groups allow you to connect with others going through similar challenges, helping you feel less alone.
2) Find an experienced mesothelioma specialist
Because mesothelioma is a rare cancer, most oncologists don’t have a lot of experience treating it. It’s important to find a doctor who specializes in mesothelioma and treats a high volume of mesothelioma patients. Look for a specialist affiliated with a major cancer center that actively researches mesothelioma.
Patients who are treated by mesothelioma specialists have better outcomes. These doctors understand the intricacies of this complex disease and can provide the most up-to-date treatments. They are also more likely to inform patients of clinical trials they may be eligible for. Clinical trials give you access to promising new therapies and medication. Don’t hesitate to ask your primary care physician or oncologist for a referral to a specialist.
3) Get an accurate stage and cell type diagnosis
There are four stages of mesothelioma – stage 1 being the early stage, while stage 4 means the cancer has metastasized or spread to other parts of the body. An accurate staging gives your medical team important information about the progression of the disease and helps determine the best course of treatment.
Mesothelioma can also be classified into three cell types: epithelioid, sarcomatoid, and biphasic. Epithelioid is the most common and most responsive to treatment. Sarcomatoid is the least common and most difficult to treat. Biphasic means both epithelioid and sarcomatoid cells are present. Knowing your cell type gives doctors information about your prognosis and projected treatment response.
Ask your doctor to stage your mesothelioma and determine the cell type. This may require imaging tests, biopsies, blood tests, and examination of fluid or tissue samples by a pathologist specialized in mesothelioma. Having clarity on these two factors will allow you to make well-informed treatment decisions.
4) Understand your treatment options
Treatment for mesothelioma depends on the stage and cell type but generally involves some combination of surgery, chemotherapy, radiation therapy, and clinical trials.
Surgery is usually the first line of treatment when the cancer is still localized and hasn’t spread. Depending on where the mesothelioma is located, common surgeries include pleurectomy/decortication of the lungs, peritonectomy for abdominal mesothelioma, or pericardiectomy for the pericardial lining. The goal is to remove all visible tumors. Surgery may be followed up by chemotherapy and/or radiation to kill any remaining cancer cells.
Chemotherapy uses anti-cancer drugs to try to kill cancer cells and stop their growth. There are several chemo drugs used to treat mesothelioma, either alone or together in combination regimens. Chemotherapy may be given before and after surgery or as the main treatment for later-stage cancers.
Radiation therapy uses high-energy beams to kill cancer and shrink tumors. It is sometimes used before or after surgery when the tumors are localized or to relieve pain and symptoms when the cancer has spread.
Clinical trials involve experimental drugs and therapies being studied for mesothelioma. Ask your doctor if you are eligible for any clinical trial.
5) Assemble your support team
A strong support system will be invaluable after your diagnosis. Mesothelioma treatment often involves surgery, lengthy hospital stays, chemotherapy side effects, and difficult recovery periods. You’ll need help from family, friends, and medical staff to get through each day.
Identify people in your life who can support you in specific ways – driving you to appointments, bringing meals, assisting with medical tasks, providing financial help, or just keeping you company and listening. Do not hesitate to ask for and accept help. Your loved ones want to be there for you but may not know what you need unless you tell them.
In addition to your personal support network, take advantage of resources like counseling, support groups, home health aides, and apps to connect with the mesothelioma community. Your doctor can also refer you to services that assist with transportation, meals, respite care, and hospice if needed.
6) Focus on your emotional health
Processing a mesothelioma diagnosis is extremely difficult emotionally. Fear, anxiety, anger, and sadness are all normal reactions. Don’t try to cope alone.
- Talk to a therapist if you are feeling depressed, hopeless, or overwhelmed. They can provide mental health support.
- Discuss a plan with your doctor if you are experiencing severe anxiety around treatment decisions or procedures.
- Stay as active as possible to help manage stress and maintain a sense of normalcy. Even light walking can improve mood.
- Join a fitness community for those with cancer for motivation and understanding.
Conclusion
A mesothelioma diagnosis can feel overwhelming, but taking immediate action gives you the greatest chance of recovery and survival. Educate yourself on the disease, find an experienced specialist, understand your treatment options, assemble your support team, and prioritize your emotional health. Remember, you are not alone.
