Hearing that you have mesothelioma will trigger a lot questions. As a new cancer patient – or a loved one of someone just diagnosed with cancer – you’ll need to know a great deal about what this means in the weeks and months ahead. A knowledgeable oncologist can answer most of them. If not, you can get a referral to someone who can. Don’t be afraid to ask questions.
If you can’t get answers, keep pushing for them. You will find a supportive asbestos-cancer community, one that can provide great information without having to get a doctor’s appointment or wait for a returned phone call. There are many facets to dealing with asbestos-related cancer, and learning about them can make you dizzy.
As you deal with this disease, we wanted to put together some frequently asked questions that we hear. Hopefully this will make your quest for answers easier. If you have more questions and you think our Patient Advocates can help, simply pick up the phone and call.
We can help you or a loved one get a diagnosis or a second opinion from a mesothelioma specialist.
Because this is such a rare cancer, your doctor may not have much experience treating it. You should ask your doctor how many mesothelioma patients he or she has treated, and what therapies he or she has performed. If you would prefer to be treated by a more experienced physician, ask if your doctor can recommend a specialist. You can also use the Doctor Match program here at The Mesothelioma Center.
Your doctor can tell you your type, which describes the location from which the cancer originated. There are three main types of mesothelioma: pleural, pericardial and peritoneal. Mesothelioma can also develop in the lining of the testicles, although it is extremely rare.
Doctors can provide you with information about the stage of your cancer, which describes exactly how far it has progressed throughout your body. Most cases of this disease are not diagnosed until an advanced stage like Stage III or IV.
After determining the stage of the cancer, doctors can make a prognosis that predicts the course of disease and how it will affect your survival. Although some patients are afraid to ask about prognosis or would rather not know, knowing your prognosis may help you better understand your disease and allow you to properly plan for the future.
While the prognosis for most patients is generally a year or less, new and improved treatments are extending the life expectancy of patients worldwide. It is important to understand that every cancer patient is different. Although a prognosis can be helpful, it may not accurately predict your survival.
Understand, though, that most doctors have a hard time giving patients an exact time frame. Life expectancy does vary from patient to patient, but the typical range is between four and 18 months.
Every case is different. A team of oncologists well versed in the treatment of the disease will collaborate to develop the best possible plan for you. The most common course of treatment involves some combination of surgery, chemotherapy and radiation therapy.
The appropriate treatment options are largely influenced by the stage of your cancer and your overall health. Be sure to ask your doctor about all available treatment options.
In some cases, your doctor will need to perform other tests to determine if you qualify for a treatment option. Be sure to ask your doctor if additional tests like imaging scans or blood tests are needed, and if so, what these tests entail.
For each therapy your doctor suggests, you should ask about the goal of that treatment. Some treatments are palliative, meaning they aim to manage painful symptoms and improve your quality of life. These treatments do not attempt to cure the cancer. Before agreeing to undergo any treatment, be sure that you fully understand its purpose.
Symptoms may make you feel weak and uncomfortable, and a number of treatments can help address these symptoms. While the procedures can help alleviate the discomfort caused by the cancer, they may cause their own side effects.
For example, surgery can remove part of the tumor, in turn reducing the pressure a patient feels on his or her chest, but the risks involve soreness at the incision site, bleeding and infection. Chemotherapy, which helps the body destroy the tumor, may make you feel weak or nauseated. For most of these side effects, doctors can provide medications to counteract the pain, but you may still experience adverse reactions.
No. This is your body, and you get to decide on your treatment. Choosing a medical team to handle your treatment does not strip you of your power to make decisions. If your doctor suggests a treatment that you are uncomfortable with, you do not need to accept it.
In his book, "They Said Months, I Chose Years," survivor J.R. O'Connor explains that he believes "everyone has to find their own path when facing a terminal disease … [and] possess the faith and confidence to make the right treatment decisions."
More and more doctors are recognizing the advantages of complementary and alternative treatments for cancer. These treatments, often offered alongside traditional cancer therapies, may include natural medicines or therapies like meditation, acupuncture, massage and hypnosis. If your doctor does not recommend alternative treatments, you may want to research them on your own. Be sure to talk to your doctor before trying any additional treatments.
Some patients can continue working and performing everyday duties and activities throughout treatment. However, certain treatments can greatly affect your well-being and quality of life. Before starting any treatment, you should talk to your doctor about how the recovery process will affect your daily routine.
Even if your insurance policy is limiting, you may be able to obtain authorization to see a specialist out of network. If you have to travel to a far-away facility, you may be eligible for a travel grant and lodging discounts. You may be able to secure an override so that you can get the full range of care that you need. For help with this process, e-mail our Patient Advocates.
If you or a loved one was diagnosed with mesothelioma, you should consider looking for an attorney. Lawyers who represent people with an asbestos-related disease work on a fee basis, which means you will not have to pay for an attorney until you collect money from a verdict, a settlement or an asbestos trust fund claim. Why would you need an attorney? Because your disease more than likely stemmed from you being exposed to asbestos. This means your illness was entirely preventable, and you have a right to be compensated for any negligence involved.
Get help finding an attorney who knows the process and can get you and your family the compensation you deserve.
Share the news of your diagnosis when you are ready. Remember that your family may be your best source of support.
Telling loved ones about this disease can be emotional and scary. You may need to handle each conversation in a different way. Children should be reassured that they did not cause your cancer, while older kids may angrily ask "Why?" Private, candid conversations should be held with your spouse, parents or close friends whom you wish to include.
When you are ready to share the news, decide which details you wish to share, and do not feel pressured to discuss anything that makes you uncomfortable. And don't worry about hurting your loved ones. They often will be your biggest source of support.
At this point in your journey, you may be experiencing a number of emotions related to your diagnosis, such as fear, anxiety or sadness. Depression is not uncommon in cancer patients. You may benefit from joining a support group to find comfort.
You may feel empowered and comforted by contributing to advocacy and awareness events. Even while receiving treatment, many patients are able to attend symposiums, conferences and fundraisers to connect with others in the community, learn about the breaking news in the field of mesothelioma, and help bring public awareness to the cancer.
Many patients diagnosed with cancer may feel overwhelmed or depressed. If you need help dealing with the emotional challenges of your cancer, ask your doctor to recommend a mental health professional.
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