Find The Best Doctors

FIND THE BEST DOCTOR FOR YOUR SPECIFIC DISEASE
Even if that doctor is out-of-town.

Don’t panic about time. 

  • With many diseases and most cancers, you have time to get other opinions.
  • Some cancers like certain leukemias may not allow much time to get additional opinions. For those, get to an expert quickly.

 


Specialists vs. general docs:

  • If you have a serious, potentially life-threatening condition, you need to be in the hands of a specialist.  For cancer, that means a doctor and team specializing in the type of cancer you have and not just a general oncologist.
  • Distinguish whether your present doctor is a generalist or a specialist. (i.e., breast cancer and not just general oncology. A thyroid specialist and not just an endocrinologist, etc.)
  • I have a general oncologist in my city who I like very much. His practice is where I received my breast cancer chemotherapy. However, I make major decisions with my out-of-town breast cancer specialist.

 


Cutting-edge doctors and hospitals:

  • With life-threatening illnesses, I firmly believe in consulting with not just a specialist but with a specialist who is truly on the cutting edge of fighting your disease. The difference can be life or death.
  • When I was diagnosed with Acute Lymphoblastic Leukemia, I was lucky to become the patient of THE cutting-edge leukemia doctor, Hagop Kantarjian, at MD Anderson in Houston. Dr. Kantarjian historically creates the treatment approach that ten years later becomes the standard leukemia treatment across the country. By being his patient, I could receive treatment that wasn’t available yet in other hospitals. ALL leukemia, until recently, did not have great survival odds for adults, but with Dr. Kantarjian’s cutting-edge treatment, my odds are much better. Plus, MD Anderson hospital has much more experience dealing with leukemia patients than any other hospital in the country. My local university hospital generally has 20 inpatient leukemia patients at any time, but MD Anderson has three large floors of leukemia patients daily, a total of about 130 beds. And their 40 leukemia faculty experts see about 2,400 new leukemias every year. That makes for much more expertise and familiarity with caring for patients in my situation.
  • When you have something rare or strange, it can be quite tricky to diagnose if it isn’t being read or looked at by a team that is used to seeing it.  My local doctors and the pathologists they used could not diagnose my ALL leukemia because they didn’t see it enough and their lack of experience prevented them from understanding what they were seeing in my biopsy. It took going to a true leukemia expert to be able to get a correct diagnosis. I only wish I had gotten to that true expert faster.

 


Traveling to an out-of-town doctor:

  • If you live in a small city or town, there might not be a specialist because there are too few patients with that type of disease for a doctor to specialize. You may need to travel to an academic center (or for cancer, to a cancer center designated by the National Cancer Institute, of which there are 70+ around the country) to establish your diagnosis and treatment plan.  This is a hassle, but it’s your life.  
  • An out-of-town doctor can help you decide the treatment that you then carry out locally. Traveling to another state to determine the best treatment for you doesn’t mean your surgery or other treatment needs to be performed there. I made my decisions with the out-of-town super-experts and then had my surgeries and chemo in my hometown.
  • Sometimes, when cutting-edge treatment is complex, or the drugs are not available on a national scale, you may need to get your treatment out of town. This happened to me with my latest diagnosis, ALL Leukemia. Not only did it prove tricky for my local doctor to diagnose (and I wish my instincts to go elsewhere had kicked in earlier), the cutting-edge treatment wasn’t available in Atlanta.
  • Traveling to an out-of-town expert on a critical component of my disease prevented me from being over-treated. I discovered that the breast cancer surgery typical for my city was frowned upon outside it and not necessary in my case.
  • If you have an issue no one seems to be able to solve, keep going until you find a solution. Traveling to another out-of-town specialist allowed me to solve a post-surgery complication that no doctor I saw in my hometown could solve.
  • Going to a medical center that sees MANY patients with your diagnosis can provide better testing, diagnosis and care.  When I went to Mayo to get a second opinion before having carpal tunnel surgery, I was amazed at the greater depth of their diagnostic testing and explanations. As the nurse explained, “we see 100 of these cases a week.  Your local team likely sees less than 100 cases a year. We have much more practice and a better understanding of what we are seeing.”
  • Some specialists may allow you to consult via phone if you cannot travel to them.
  • Some medical centers, such as Mayo Clinic in Rochester, Minnesota, allow you to get second opinions on your pathology by simply having your doctor send the necessary slides to them.

 

Getting there without putting your financial life in crisis.

  • Traveling to save your life or your quality of life is the best use of frequent flier miles I know.
  • For many people, their difficult diagnosis can put a strain on their financial life.  The concept of traveling to a cutting-edge expert may at first seem impossible.
  • The people in your life who care about you- friends, co-workers, family, church members, neighbors, etc— really mean it when they say they want to help you.
  • They can pool frequent flier miles for a plane ticket, or create a “Go Fund Me” for your treatment, or arrange for you to stay overnight with their Aunt Jean— all of these things can help make it possible for you to get the best medical advice.
  • Allowing others to help you is a gift not only for you, but for them, too. Nothing makes people happier than helping someone they care about.   So say “yes, thank you!” to their offers of aid.  Ask a friend to help you organize it all.  It really may be possible.

 

Collaboration among doctors:

  • When your case is complex and you need doctors of different fields to work together, traveling to a center like the Mayo Clinic can make all the difference. Mayo Clinic encourages its doctors to work together to come up with better patient diagnoses and solutions. Mayo doctors are on salary, so they get the same-sized check whether they spend 10 minutes or five hours on your case. This fee arrangement encourages Mayo doctors to take more time with you and consult with each other about you. And they have no incentive to order unnecessary tests or less-than-imperative surgeries.

 


How to find a new doctor:

  • My favorite way to find new potential doctors is to ask my present doctor, If you were the patient and you could go anywhere to meet with the best expert on my specific disease, who would you see?” 
  • The lead authors of the medical journal articles you research are another potential source for consultations. You can ask your present doctor what they think about this possibility. Would this doctor be a good fit for your case?

 


Getting the appointment:  

  • If the appointment scheduler tells you that the next available appointment is too far out, politely ask what other solutions might be available.
  • It could be that you need to call their office every day to see if they have had cancellations.
  • Tell them that you are ready to travel to see the doctor. They might work harder to find a spot for you.
  • Keep thanking them for their efforts to help you.
  • If you know someone who knows this doctor, their involvement might help. Mention the name, or ask that person to make a call for you. Your own doctor might be able to help too.
 

 

A warm thank you to Dr. C. Kent Osborne of Baylor College of Medicine for his help with developing the information found on this page