If you’ve just been diagnosed with mesothelioma, there is no doubt many things going through your head and weighing heavily on your heart. There’s so much to discuss with your family and so many options to consider when it comes to seeking care.
You’ll need to have lengthy discussions with your doctor(s), do some research, and discuss logistics with family members, especially those who are going to be primarily responsible for getting you to and from treatments and other procedures.
At first, you’re going to find it difficult to concentrate on learning about your options for treatment.
They will be a lot of emotional hurdles you’ll want to try to get past first, but remember that time is always of the essence when it comes to cancer treatment, especially the treatment of mesothelioma, which tends to be diagnosed in a later stage and can be aggressive and often difficult to treat. You’ll want to give yourself as many opportunities as possible to prolong your life.
Or course, finding the right doctor is one of the most important first tasks you’ll undertake after your diagnosis and that’s not always a simple task. As cancer goes, mesothelioma is actually a fairly rare form of the disease, with about 2,000-3,000 cases diagnosed each year in the United States.
Compared to other types of cancer, like that of the breast and lung, the cases of asbestos-caused cancer remain few.
That doesn’t mean, however, that your cancer is any less important than anyone else’s and that you shouldn’t try your best to beat it. What it does mean, however, is that there are fewer experts in the field.
Nevertheless, you shouldn’t just “settle” for any oncologist. You’ll want to find an oncologist and other medical team members (like surgeons) who are truly knowledgeable about the specifics of this disease.
This also means that the best doctors might not be in your proverbial backyard. You may have to do a little searching.
So, you’re sitting in your doctor’s office and he delivers the dreaded news – “You’ve got mesothelioma.” Chances are that perhaps you were expecting this. After all, you’ve been dealing with the typical symptoms and you may even remember all that time you spent working with asbestos, inhaling fibers that would later cause tumors inside your body.
But whether you expected the diagnosis or not, you’re never quite prepared for it and it’s easy to become overwhelmed, especially at the start.
On the same day as your confirmed diagnosis, or shortly thereafter, your primary care doctor (or whoever made the diagnosis) will likely recommend an oncologist to you.
He or she might be the best in your community or at the local hospital, or perhaps – if you live in a small town – a reputable doctor in a nearby city. You can take that suggestion and run with it, but – truly – the better option is to hop online and start to do some research on your own. (Or, of course, a family member can do this for you.)
If you Google “mesothelioma doctor”, you’ll no doubt come up with a host of names. There are a lot of oncologists out there that say they treat mesothelioma. Male, female. Close to you or far from your harm.
You’ll find a long list. And while they might all be good cancer doctors, they just may not be good enough for your situation. You’ll need to find someone who is truly an expert in the realm of treating those with mesothelioma. Your life is that important!
So, once you’ve gathered some names, it’s time to do a little research on those individuals. What can you learn about each of these doctors through your internet research? A lot! There’s actually plenty of information to be had if you know where to look.
First of all, determine if the doctor is associated with one of the larger U.S. cancer centers like perhaps New York’s Memorial Sloan-Kettering or Texas’s MD Anderson Cancer Center.
If they are, this is usually a good sign and there’s a better chance that he or she has seen and treated more mesothelioma cases than most cancer doctors in smaller, non-specific medical facilities.
Secondly, look for professional research papers these doctors may have written. Many of the nation’s top mesothelioma specialists have participated in in-depth studies on mesothelioma and a search of their name should reveal that they had a hand in these studies.
Similarly, many of the best doctors conduct regular workshops on mesothelioma for their peers. You’ll most likely find information on those as well.
Once you’ve done your due diligence on the internet, you can probably narrow down your list. Remember, however, not to eliminate a particular doctor simply on the basis of distance from your home.
While you may not want to travel from Kentucky to Los Angeles for treatment, for example, you may find it advantageous to make the trek to Pittsburgh or even to Chicago or Washington D.C.
But before you go, it’s time to ask some more specific questions, and for that you’ll need to be in touch by phone or email.
Hopefully, you’ve identified at least 3 or 4 oncologists with whom you’d like to work. They seem like their knowledge of the disease is comprehensive and you’re hoping they can help you. Now it’s time to interview them and you’ll need to be very blunt with your questions.
After all, this is YOUR life.
The first question you should ask is about the number of mesothelioma patients this individual has treated. If the answer is in the single digits (it shouldn’t be if you’ve done your homework!), it’s time to go somewhere else.
To reiterate, if you live in a small town or in a city where there is not a hospital that’s known for quality cancer treatment, you should seriously consider the next-closest large facility, even if it’s not specifically a cancer center.
Many mesothelioma patients will tell you that getting good treatment that extends one’s life is worth the travel.
You’ll also want to ask your potential oncologist what kind of treatment they’ve recommended for the disease and what kind of results they’ve garnered from that treatment.
Don’t settle for simple answers that include only surgery, chemo, and radiation.
Over the years, so many more opportunities for treatment extending outside of the traditional have appeared, and meso patients are doing well with some of them.
It’s helpful to know that this medical expert is well-versed in new treatments for this type of cancer and he/she should be able to speak of these new options knowledgeably.
In addition, you should be seeking a doctor/facility that has access to clinical trials for mesothelioma. Many a clinical trial has extended the lives of mesothelioma victims, be it several months or several years.
You never know when the next best thing is going to come along in the field of mesothelioma treatment, so you’ll want to try to be part of it.
Once, you’ve found an oncologist, you may also eventually be in the market for a thoracic surgeon. If this is the case, one will probably be recommended to you but – again – don’t hesitate to ask questions of this individual before you agree to go under the knife.
Ask what kind of treatments/procedures he’s performed and about the outcome of these surgeries. If you are a candidate for high-risk surgeries, like the extrapleural pneumonectomy, you’ll want a surgeon who’s done this procedure many times.
This is not the time to give the new doctor a shot.
If, after all of your research and interviews, you find that the best treatment for you is not within an easy drive of your home, don’t fret.
This is the case for many mesothelioma patients and most can make it work. Will it be harder than being at home? You betcha!
But these hospitals that treat out-of-town patients understand the difficulties involved and provide consultations with social workers and others that can make the entire process easier.
With financial screening and social work assessment, many patients will find that they qualify for free or low-price temporary housing options during treatment.
These options aren’t available everywhere but many are indeed associated with the nation’s larger cancer hospitals.
Facilities such as the Hope Lodges, which are associated with the American Cancer Society, offer a free place to stay for the patient and one caregiver (a caregiver MUST be present) near many large cancer treatment facilities.
Rooms are private and residents generally have access to a community kitchen and other facilities. Often times, social activities and entertainment are sometimes provided for those who feel up to participating.
Other similar accommodations are also available and many hotels offer drastically reduced rates for cancer patients.
Once you’ve zeroed in on a preferred doctor/hospital, contact their social work/patient advocate office for information about housing for out-of-town patients.
Over the last few decades, the hospitals listed below have become renowned centers for the treatment of mesothelioma cancer.
• University of Pittsburgh Medical Center, Pittsburgh, PA
• Fox Chase Cancer Center, Philadelphia, PA
• Abramson Cancer Center at the University of Pennsylvania, Philadelphia, PA
• Memorial Sloan-Kettering, New York, NY
• NYU Langone Medical Center, NY, NY
• Mount Sinai Hospital, NY, NY
• Cleveland Clinic Cancer Institute, Cleveland, OH
• Barbara Ann Karmanos Cancer Institute, Detroit, MI
• Brigham and Women’s Hospital, Boston, MA
• Dana Farber Cancer Institute, Boston, MA
• Johns Hopkins Kimmel Cancer Center, Baltimore, MD
• Yale Cancer Center, New Haven, CT
• University of Texas MD Anderson Cancer Center, Houston, TX
• Lung Institute at Baylor College of Medicine, Houston, TX
• Stanford Cancer Institute, Stanford, CA
• Jonsson Comprehensive Cancer Center, Los Angeles, CA
• Pacific Heart, Lung, and Blood Institute, Los Angeles, CA
• Mayo Clinic, Rochester, MN
• The H. Lee Moffitt Cancer Center, Tampa, FL
• University of Chicago Cancer Center, Chicago, IL
• Duke Cancer Institute, Durham, NC
• Ochsner Cancer Center, New Orleans, LA
• Vanderbilt-Ingram Cancer Center, Nashville, TN
If you’d like further information about any of these facilities and can’t find the answers to your questions online, call the hospital. They are glad to assist you in gathering more details about their facility.
Some of today’s top mesothelioma oncologists and thoracic surgeons in the U.S. include:
• Dr. Rodney J. Landreneau – University of Pittsburgh Medical Center, PA
• Dr. James Lutekich – University of Pittsburgh Medical Center, PA
• Dr. James Pingpank – University of Pittsburgh Medical Center, PA (peritoneal meso)
• Dr. Rebecca Wolfer – Marshall University Medical Center, Huntington, WV
• Dr. Nepal Chowdhury – St. Mary’s Medical Center, Huntington, WV
• Dr. David Sugarbaker – Baylor College of Medicine, Houston, TX
• Dr. Abraham Lebenthal – Brigham and Women’s Hospital, Boston, MA
• Dr. Harvey Pass – NYU Langone Medical Center, New York, NY
• Dr. Raja M. Flores – Mount Sinai Medical Center, New York, NY
• Dr. Joseph S. Friedberg – Penn Presbyterian Medical Center, Philadelphia, PA
• Dr. Corey Langer – Abramson Cancer Center, Philadelphia, PA
• Dr. Andrea Wolf – Mount Sinai Medical Center, New York, NY
• Dr. Robert N. Taub – Columbia Presbyterian Hospital, New York, NY
• Dr. Robert B. Cameron – Jonsson Comprehensive Cancer Center, Los Angeles, CA
• Dr. Jacques Fontaine – H. Lee Moffitt Cancer Center, Tampa, FL
• Dr. W. Charles Conway – Ochsner Cancer Center, New Orleans, LA
For more specific information about any of the doctors above (or for information you haven’t been able to find online), call their office. A staff member will be on hand to guide you.
If you’ve decided to file suit against the companies/individuals who are responsible for your mesothelioma diagnosis, you’ll learn quickly that your medical information is an important part of that suit.
Chances are your doctor will need to participate in the relaying of information about your disease, how and why it developed, and other specifics, including details about your treatment. Make sure he/she is willing!
Remember, a solid, well-informed doctor who specializes in mesothelioma can aid in the success of any lawsuit you may decide to file.
Attorneys and doctors often confer with each other about the specifics of individual cases so that, in the end, the plaintiff will receive compensation that is in line with the seriousness of his/her illness.
Asbestos case frequently asked questions…