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Anyone who says that you should not make major decisions when you are under a lot of emotional stress has never had to deal with a cancer diagnosis. Finding out that you have cancer is stressful enough, but deciding which cancer treatment you want to undergo is even more distressing. It is like being trapped in a room and having to choose to escape from one of three doors, but there is a different kind of predatory animal behind it. Choosing the surgical removal of a lung, chemotherapy, or natural but premature death is like being asked to confront a lion, a grizzly bear, or a saltwater crocodile. The sooner after your diagnosis that you begin treatment, the longer you are likely to survive, but you should not make a decision the minute that your doctor tells you what your treatment options are. Most people diagnosed with mesothelioma start researching treatment options while they are still in the testing phase when doctors are trying to figure out whether the disease making the patient sick is mesothelioma or something else, and when they are trying to determine which treatments will work best.
Talk to the Doctors From Whom You Have Been Receiving Care
The advice that you should not Google your symptoms is true of everyday aches and pains, and it applies even more to serious, chronic illnesses like mesothelioma. Anything you read online will just leave you feeling even more hopeless and confused. The people who have the most informed opinion about which treatments are feasible, given the details of your health, are the doctors who have been treating you. Talk to your primary care doctor, oncologist, surgeon, hematologist, or any other doctors who have been treating you. Ask them any questions that might affect your decision. These are some questions that mesothelioma patients sometimes ask before beginning treatment:
- What is it like to live with one lung?
- How can I reduce chemotherapy side effects?
- How long do you expect me to survive if I choose surgery, if I choose chemotherapy, and if I choose both?
- What treatments can relieve my symptoms if I choose not to undergo treatment or choose to stop treatment?
Remember that you have the final decision about your treatment. Your doctors do not have the right to pressure you to pursue or refuse surgery, chemotherapy, or any other treatment.
Get a Second Opinion
Mesothelioma is a rare disease and the number of doctors in the United States who have treated patients with mesothelioma. It is unlikely that there is more than one clinic in your city where there are doctors with experience treating mesothelioma patients. It is worthwhile to email cancer centers in other cities and ask to set up a phone consultation or videoconference with a mesothelioma doctor there. The doctor who gives you a second opinion might ask to see your medical records so he or she can have a thorough understanding of your medical history.
You might find that the doctor from whom you seek a second opinion has more experience with mesothelioma treatment and knows more about recent research, which you might want to change doctors, even if it means traveling. Your original doctor should help you make this happen, and he or she might even refer you to a treatment program with a greater focus on mesothelioma. When you get a second opinion, beware of doctors who tell you that your original doctor is ignorant or that everything you think you know about mesothelioma is wrong; especially beware of doctors who promise miracle cures for mesothelioma.
Find Out If You Can Participate in Clinical Trials
One of the most important reasons to seek a second opinion from an oncologist with experience treating mesothelioma patients before you begin treatment is to make sure that, if any clinical trials related to mesothelioma treatment are seeking participants, you have found out about them. Clinical trials offer cutting-edge new treatments; if a hospital is doing a clinical trial, it means that preliminary experiments related to the treatment have shown promise, and now the next step is to offer it to a larger group of patients. If the clinical trial goes well, with patients responding well to the treatment and not suffering adverse effects, the treatment will become more widely available and may even replace the current standard of treatment. Most of the medical interventions you have undergone during your lifetime went through the clinical trial phase before becoming available to the public.
The time to do a thorough investigation of clinical trials is before you begin mesothelioma treatment, not after. The inclusion criteria for clinical trials tend to be very strict. For example, imagine that there is a clinical trial where one group of patients takes immunotherapy drugs and the other takes both immunotherapy and chemotherapy. The only patients this clinical trial will accept are those who have been diagnosed with mesothelioma but have not undergone surgery or chemotherapy for it. This is so the researchers can be sure that the effects they are seeing in the study are because of the drugs that they are administering and not because of any treatment the patients received before enrolling in the study.
Talk to Other People Who Have Undergone Treatment for Malignant Mesothelioma
It is worthwhile to talk to doctors who know more about mesothelioma treatment than almost anyone else in the world, but they cannot tell you the whole story. Doctors can tell you about tumors shrinking and patients getting through chemotherapy without suffering debilitating side effects, but they cannot tell you how it feels to live with mesothelioma and to undergo treatment for it. Patients have a completely different perspective on living with cancer. You might find someone who was more upset to lose his beard (before he underwent chemotherapy, kids always used to mistake him for Santa Claus) than he was to lose a lung. You might meet someone who tells you that, while he was undergoing chemotherapy, the only things that tasted good were unsweetened iced tea and orange popsicles. Patients know more about what it feels like to spend Christmas in the hospital or to try cannabis for the first time at age 64 than doctors do. Since mesothelioma is so rare, it is unlikely that you already know someone who has had mesothelioma. Your doctor can give you the contact information of in-person and online groups of mesothelioma patients and their families.
Do Your Own Research
If you are a naturally curious person, whether or not you have a professional background in science, you might find it reassuring to read the published studies about mesothelioma. The history of mesothelioma treatment is recorded in the clinical trials and case reports that have been published over the years. The optimist in you might notice that the newer studies give a longer expected survival time after diagnosis than the older ones do. Reading published research about mesothelioma might also help you think of questions to ask your doctors, so you can be sure that you are making informed decisions about your treatment.
Don’t Worry Too Much About Money
Money plays a role in almost every decision you ever make. You probably chose your job, at least in part, because it paid better than other jobs you could have taken. When you bought your house, you only considered houses that you could afford. When you bought your car, you thought not only about how much the car would cost you in total (or how much the monthly payments would be when you financed it), but also about how much you would have to spend on gasoline.
The hard truth is that cancer treatment is expensive, no matter what you do. While there is evidence that, in general, wealthier people enjoy better health, in part because they don’t have to work physically taxing and dangerous jobs, and in part because they can much more easily pay for healthcare, if you have mesothelioma, it will be with you for the rest of your life. Winning the lottery will not cure your mesothelioma.
More than 80 percent of cases of malignant mesothelioma are the result of asbestos exposure. Laws are in place to require the companies that exposed today’s mesothelioma patients to asbestos decades ago to take responsibility for the patient’s treatment. A mesothelioma lawyer can help you access the compensation you are owed and get your treatment paid for, whether it is through mesothelioma trust funds or lawsuits. If you have health insurance, have your doctors bill your insurance company; when you get a settlement in your mesothelioma case, you may need to reimburse the insurance company for some or all of what it paid toward your mesothelioma treatment. Finally, if you are enrolled in a clinical trial, the medications and other treatments you receive as part of the study may be covered by a research grant, so you will not have to pay for them.