15 Questions Your Mesothelioma Doctor Didn't Answer
You went to your general practitioner complaining of fatigue, coughing, shortness of breath and reduced respiratory function, and walked out with a mesothelioma diagnosis. Hearing the news came as a shock. You were left with questions about your diagnosis - questions your family doctor couldn't answer.
Your family doctor, however, referred you to a mesothelioma specialist to learn more about the cancer and develop a plan of action. You figured you'd find out everything you need to know about mesothelioma, including a clear definition of the disease as well as treatment options and prognosis. Yet after your first appointment with the specialist you still have unanswered questions. What did I forget to ask? What didn't my doctor tell me?
How did I end up with mesothelioma?
Mesothelioma is almost always caused by asbestos exposure. Because a lot of older construction materials are known to have asbestos in them, there are a number of places where you may have been exposed. You may have inhaled asbestos working in or living in a building where construction materials were exposed or removed. It's also possible you breathed in asbestos fibers at auto garages, schools, shipbuilding facilities, power plants, chemical plants or other jobsites where the fibers were prevalent.
Because the latency period of mesothelioma is between 20 and 50 years, it is highly unlikely that you got the disease after inhaling or ingesting the fibers recently.
Am I putting my family in danger?
Mesothelioma is a cancer and is not contagious. Your family and friends cannot contract the disease from you. However, second-hand exposure to asbestos could be a concern. There are known cases of spouses getting mesothelioma because they were exposed to work clothes that were loaded with asbestos fibers and dust. If this is the case, the other residents of your home may benefit from regular mesothelioma screenings.
What are my chances of survival?
Depending on your age at the time of diagnosis and your personal response to treatment, you may have up to a 39.7 percent chance of reaching five-year survival. Patients diagnosed under the age of 45 have the greatest opportunity to beat the disease, but as age increases, the chance of survival drops. At its lowest, for patients over 75 years old, the five-year survival rate is 2.7 percent.
How much time do I really have?
This is the question everybody asks. Most mesothelioma 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. "Indeed, a few long-term survivals have been achieved ... [but] it is the rare patient who lives longer than three years," explained the authors Craighead and Gibbs in "Asbestos and its Diseases."
How do I break the news to my family that I have mesothelioma?
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 that you wish to include.
When you are ready to share the news, decide what 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.
Will mesothelioma prevent me from working or handling my daily tasks?
As mesothelioma progresses, pain and fatigue can intensify and interfere with your ability to work, cook, clean or handle other normal, daily responsibilities. Depending on the severity of your symptoms, you may need to take some time away from work or ask for help with household chores while you fight your illness. After being diagnosed, many patients decide to spend their time away from the office and instead enjoy the company of their friends and family.
How do I manage the emotional stress of my diagnosis?
Mesothelioma support groups can provide comfort and help you realize your emotions are natural.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 and remember you are not alone.
You may feel empowered and comforted by contributing to mesothelioma advocacy and awareness events. Even while receiving treatment, many mesothelioma 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.
Should I consider creating a "bucket list?"
Now is the time for you to pursue your dreams. Create a list of goals and experiences you wish to achieve, like making memories and arranging special events with loved ones and friends and reconciling with people from your past. Here are some ideas to get you started:
- Keep a journal
- Perform random acts of kindness
- Travel to a place you never visited
- Try new food
- Buy something special for yourself
- Rent the movie "The Bucket List"
- Go skydiving
- Ride a motorcycle
- Learn to sail
- Learn Kung Fu
- Learn to play an instrument
- Take a belly dancing class
- Go ride a rollercoaster
- Sing Karaoke
- Learn to juggle
- Look up an old flame
- Throw a party for yourself
How do I choose the right doctor to treat my disease?
One of the most important choices you can make is who to entrust with your health care, and you should not settle for a doctor that is not fully experienced with mesothelioma. Many of the procedures are complicated, and working with a medical team of specialists who know what to look for and how to treat the disease can significantly improve your chances of survival.
The Mesothelioma Center's Medical Outreach Director has personally visited a number of nationally acclaimed facilities and has met many of the doctors who handle mesothelioma cases. The Doctor Match Program can help connect you with a qualified doctor in your area who may be able to meet your specific needs and treatment goals.
Will treatment make me feel sicker than I already feel?
Mesothelioma symptoms may make you feel weak and uncomfortable, and a number of treatments have been developed to help address these symptoms. While the procedures can help alleviate the discomfort caused by mesothelioma, 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 side effects of mesothelioma treatment, doctors can provide medications to counteract the pain, but you may still experience adverse reactions to the treatment you obtain.
Do I have to accept all of the treatments my doctor suggests?
No. This is your disease, and you get to decide. Hiring 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 her book, "They Said Months, I Chose Years," mesothelioma survivor J.R. O'Connor explains that she 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."
Should I get a second opinion?
Don't be afraid to seek out a second opinion. Your doctor will understand.Tough one, but the answer is: If you want one, get one. This is an issue you should not be afraid to discuss with your doctor. They understand second opinions because many of them give second opinions as well. It's your body and your life. If you feel that you want more information about your disease, seek it out from other doctors and any other research you can do.
If you do want a second opinion, The Mesothelioma Center's free Doctor Match Program can help. The program puts mesothelioma cancer patients together with top doctors and top cancer centers around the country. Patient advocates line up appointments that patients have difficulties obtaining on their own.
Are there natural approaches to treatment?
Yes. Some mesothelioma patients choose natural and alternative approaches to treatment, such as nutritional supplements, acupuncture, meditation, and dietary changes. These techniques, among other natural methods, can help strengthen the body and alleviate some of the pain associated with the cancer. Even if you do choose to pursue traditional treatment, alternative therapies can be used as a supplement to increase the effectiveness of surgery, chemotherapy or radiation therapy.
Do I have any legal options?
Yes. If you have been diagnosed with mesothelioma, you may be able sue the companies who produced asbestos-containing products that led to your disease. This process is best handled by a mesothelioma lawyer. Mesothelioma lawsuits can help patients secure financial assistance for their treatment, lost wages, funeral expenses and to help their families later.
Are there programs available to help cover my medical bills?
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.
How is mesothelioma diagnosed?
The diagnostic process is usually begins with a visit to a general physician when a patient complains of chest pain and difficulty breathing. Before a diagnosis is made, a patient will likely consult with a pulmonologist or an oncologist for more specialized testing. An official mesothelioma diagnosis is usually made after a number of tests, including imaging tests and biopsies. The entire process can take between three and six months on average.
I've been diagnosed with mesothelioma. Now what?
One of the first inclinations for those recently diagnosed is to learn more about the condition. Questions regarding prognosis and treatment are some of the first researched. To provide a comprehensive resource, the Mesothelioma Center has created a free informational packet that discusses these questions in addition to financial assistance options.
-
05/24/2012 -
One of the biggest asbestos-abatement jobs ever done in Buffalo, New York, is being handled now by a local company with a history of asbestos-related ..
-
05/23/2012 -
A new class of anti-cancer drugs is nearing the clinical trial phase and may eventually be available for treatment of aggressive diseases like pancrea ..
-
05/23/2012 -
School districts all across America have been wrestling in recent years with the task of removing and disposing of toxic asbestos from older buildings ..
© 2012 The Mesothelioma Center |
Last Modified Friday, April 27th, 2012 | Disclaimer | Privacy Policy |
The information provided by The Mesothelioma Center is not a substitute for professional medical advice, diagnosis or treatment.
Sponsored by a law firm concentrating in asbestos litigation, The Peterson Firm, LLP with offices at 1350 Connecticut Ave, NW, Fifth Floor, Washington DC 20036.
