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Finding a mesothelioma specialist is one of the most important decisions you can make after your diagnosis. Because the cancer is so rare, your primary physician will likely not fully understand the disease or how to best treat it. A mesothelioma doctor has expertise in the disease, and will be the best person to evaluate your individual case and determine the optimal course of treatment.
Following a diagnosis, you’ll likely face information overload with so many decisions to make, on top of trying to deal with your emotions around the reality of the situation. Choosing the right specialist who can help you through the process and support you through treatment and after-care can make such a difficult time more manageable.
Tips for Choosing the Right Doctor
Even choosing a primary care doctor can take endless research, recommendations, and many doctor’s visits to find the right one for you. But when facing cancer, especially an aggressive one like mesothelioma, it can feel like there’s no time to slow down or delay treatment by any means. It’s important to step back and realize taking that bit of time to find a doctor that specializes in mesothelioma, but also fits your individual preferences and needs, can make all the difference in your cancer care.
Doctors are scattered at cancer institutes throughout the United States, with many top mesothelioma doctors located in Boston, Los Angeles, New York and Texas. Patients may need to travel for treatment, especially if enrolled in a particular clinical trial, which is an important aspect of the decision process. Mesothelioma patients should also keep in mind they may even work with multiple doctors depending on the treatment they need, like specializing in chemotherapy, radiation therapy, surgical oncology or thoracic oncology. Patients should meet with each member of the medical team that will be part of their care to ensure they’re comfortable with everyone involved.
- Talk to your primary physician who diagnosed you, as they may have recommendations for a doctor or a mesothelioma treatment center
- Research the doctor’s credentials like their schooling and board certifications, as well as any affiliations with medical schools
- Learn about the cancer center itself, like its location, if they have a specific mesothelioma program, clinical research they’re working on and other staff members you may work with
- Consider if the mesothelioma doctor and clinic are in-network on your health care insurance plan
- Set up an introductory visit to meet the larger staff and your potential doctor
Preparing for Your Appointment
It’s common to feel overwhelmed or anxious for your first appointment with your new oncologist. Getting organized before your initial appointment can help settle some of the nerves and allow the first appointment to go much more smoothly.
- Bring your medical records (including scans) to the oncologist or have them sent over
- Write a list of any medicines you currently take, as well as any vitamins or supplements
- Have your insurance cards ready, and find out what you should expect to pay for this visit
- If you already received them, fill out and bring any new patient forms with you
- Learn the logistics ahead of time: where to go, parking and the length of the appointment
- Bring someone with you – they can be your support system, and another set of eyes & ears
- Come prepared with a list of questions and a way to take notes
Questions to Ask Your Doctor
You likely have so many questions running through your mind after a diagnosis, it can be hard to even know where to begin. It might be helpful to first consider, “how much do I want to know?” Some patients are information hungry and want to know all they can, while others would rather just know their life expectancy and what treatments can give them the best chance of becoming a mesothelioma survivor. It’s entirely up to you and what you feel comfortable with.
Here are some example questions to consider asking your mesothelioma specialist when you first meet, which can be a good starting point:
- What is my diagnosis?
- Where can I learn more about the disease?
- What is my prognosis?
- Do you specialize in treating a certain type of mesothelioma, like pleural mesothelioma or peritoneal mesothelioma?
- What area of medicine do you specialize in (ie. surgical oncologist or thoracic surgeon)?
- Are you associated with a school of medicine?
- How soon do I need to start treatment and how long will treatment last?
- What are my treatment options?
- What does each treatment entail?
- What are the side effects I can expect from these treatment methods?
- What are the risks involved with these treatments?
- Should I consider participating in a clinical trial?
- Are there any clinical trials available I might be eligible for?
- How will treatment impact my day-to-day?
- Can I continue working?
- How can I manage any symptoms I face?
- What are some support resources I can take advantage of?
As you move along after your first appointment and treatment, keep track of any other questions that arise from yourself and your loved ones. For example, if in your mesothelioma research you find information on how heated chemotherapy or cardiothoracic surgery improved survival for many patients, you can ask your doctor if that’s an option for you or if there are similar treatments available for your case. It’s important to continue to communicate with your doctor about any questions or concerns you might have throughout the journey, so you can be as informed as possible and an active participant in your own care.
What to Expect at Your First Appointment
Your first appointment will likely be a whirlwind of information, meeting many different faces of the medical staff, and getting a better sense of what’s ahead in your journey. Overall, the meeting will let you get a better understanding of your diagnosis, prognosis, and your treatment options. What to expect for your first appointment will vary a bit depending on the oncologist and medical center, but in most cases do not plan on starting treatment in that same visit.
Depending on the institution, most first appointments will typically last about 1 – 3 hours. The appointment may start with a physical exam and any additional testing the doctor may need to learn more about your individual case and have a better understanding of the best treatment recommendations for you.
Your oncologist will then go over your diagnosis and provide more information on your life expectancy. Sometimes this information can seem really discouraging and harsh, but your doctor will be honest and hopeful about the treatment options that can potentially help you overcome the odds. Patients respond differently to treatments, and there are often ongoing clinical trials with promising emerging treatments that can potentially improve long-term survival.
Your doctor will discuss their treatment recommendations for your case, and what to expect from these treatments. It’s a good idea to write the options down to research on your own later and be able to ask more questions about the plan at another appointment. A decision does not need to be made in your first appointment, and you should take some time to reflect and consider your next steps on your own and with your loved ones.
Along with meeting other members of the staff that you will be working with, like nurses, other oncologists, and a social worker, many comprehensive cancer centers will also have patients meet financial advisors to look over treatment costs and what your insurance plan will cover. It will also be helpful to discuss with the advisor any secondary costs you might face, like lodging or travel, and seek any recommendations for other ways you can potentially help mitigate these expenses.
By the time your first appointment is over, you’ll have a lot of information to consider. Though many patients feel the need to start treatment right away and avoid delaying next steps, it’s important to take some time to go over everything you learned. Do some research on your own, ask some more questions, discuss what lies ahead with your loved ones.
Your mesothelioma journey will likely not be an easy road, but with the support of the right medical team and loved ones, there is always hope.