Post by Allen on Aug 27, 2014 13:38:36 GMT -8
In this section, please post your comments, questions, and suggestions about finding doctors. We can all learn from your experiences.
Available doctors/treatments – HMO vs PPO
You may be limited in the doctors and treatments accessible to you. If you have insurance with an HMO, you are limited to those doctors. Even with PPO insurance, some doctors will be out-of-network. On your current plan, you may not have affordable access to the doctor or treatment you want. If that is the case, and your variety of prostate cancer is slow growing, consider switching plans at the next open enrollment period. Insurance companies are not allowed to turn you down for pre-existing conditions.
Doctors accepting patients/ insurance/ Medicare
You won’t always be able to get the doctor you most want. Some doctors don’t take Medicare. Some don’t take any kind of insurance. Some aren’t taking any new patients. Sometimes it helps to approach a doctor with a reference from a colleague. I once got a second opinion from a famous specialist through pleading and crying -- whatever works. Have several doctors on your list as backup.
Ability to travel for treatment
There may be some very good doctors in community practice, but, according to database studies, patients generally do better with more experienced doctors, and those doctors are more likely to be found at major tertiary care centers. Some of those doctors will be out-of-state. The important considerations are whether you can afford to travel for a treatment, and whether your insurance will pay an out-of-state doctor.
Below are some typical treatment times. Can you afford to travel for them? There will also usually be an earlier trip for imaging and perhaps fiducial placement for radiation:
• PET scan (diagnostic): 2-4 hours
• Surgery: 2-10 days, depending on complications
• LDR Brachy (seeds): 1 day treatment, 1 day follow-up a month later
• HDR brachy (temporary implants): 2 days -- Sometimes a second 2-day stay a week later
• Combo IMRT with brachy boost: about 5 weeks
• SBRT – every other day for 4-5 treatments
• IMRT, proton – about 8 weeks of treatments
• Focal ablation: outpatient
• Salvage radiation after surgery: about 7 weeks of treatments
• Salvage brachy after radiation: 1 day
Finding doctors
Use your networks. I told everyone I knew that I had prostate cancer and was looking for doctors. My primary care physician knew a couple of good ones, more came from family, friends, and co-workers. Online boards (like this one) are invaluable. Post with a title like “looking for an HDR brachytherapist in Kansas.” Someone may know someone who knows.
Check rating sites like Yelp, ZocDoc, HealthGrades, Vitals, RateMDs, and UCompareHealthCare, but remember that people who bother to write typically have extraordinarily good experiences or extraordinarily bad experiences. The ordinary experiences tend to be under-represented. There are also disguised ratings from disgruntled employees, ex-spouses, friends, etc. Many hospitals and some doctors in private practice now routinely ask patients for doctor evaluations, and they are often available online. I’m particularly impressed by doctors who take the trouble to respond to negative reviews. Such sites are a good thing to check after you’ve narrowed your list down to just a few doctors.
Join a local prostate cancer support group. You will meet men with definite opinions about doctors they have used. Some organizations, like the Cancer Support Community, UsToo, and Malecare, may run groups locally. Sometimes hospitals run them. They should be easy to find with a Google search.
There are a couple of doctor finder and rating services worth looking at. The US News & World Report Doctors, which is free, is a searchable database of doctors and their profiles. CastleConnolly has a Top Doctor rating service that you can access for $2/month. They also publish Top Doctors books annually.
Specialists usually know one another. They go to conferences together, read and referee one another’s research in peer-reviewed journals. If you know a specialist that you can’t access because of insurance or distance, call his office and ask if he has a recommendation in your city.
Pubmed is a great way to find out who’s who in the specialty of interest. In the search bar, enter “prostate cancer” and “your city” (use the quotation marks) to generate names of doctors in your city. You can narrow the specialty of interest to you by using search terms like “biochemical recurrence,” “salvage brachytherapy,” “Active Surveillance,” etc. If you already have some names, it may be a good idea to check them out on Pubmed. In the search bar, enter “Doctor’s Last Name First Initial”[author]” and “prostate cancer.” It will come back with a list of publications written by that doctor (make sure its not a different doctor with the same last name), and will show you the topics that are of special interest to him. If you click on “Author Information,” it will show the hospital where he works and perhaps some contact info. Be sure to Google him as well – doctors may move to different hospitals.
Check Google Books as well. If the doctor was invited to write or edit a book that is used in medical schools to teach new doctors, chances are that he is an acknowledged expert in that field.
If there is a tertiary care center or other hospital that you have access to, they usually have websites that list their staff and their resumes. Check them out in Pubmed, CastleConnolly, and with your online network.
Experience counts. This may be especially true for surgeons and LDR brachytherapists, where the best practitioners are accomplished artists. There are several studies that have shown that surgical outcomes, both in terms of cancer control and side effects are vastly better at high volume hospitals and among the highest volume surgeons. Based on this, some have suggested that prostate surgeries should only be performed at tertiary care centers.
Go to the best that you have access to – you deserve it.
OK, so you’ve generated a list of potential doctors that you have access to. What now? Set up appointments and start interviewing them. Most will allow self-referrals, but some will only take patients referred by other doctors.
The Interview
This is like a job interview. You are assessing whether his knowledge and experience is right for you. But you are also assessing whether he is the type of person you can work with. Before deciding on whether he or she is a good fit, you have to do a frank self-assessment.
How do you prefer to come to a decision? Ask yourself:
1. Do I want to make the key decisions myself, or
2. Do I want to relegate those decisions to the doctor, or
3. Do I want to collaborate in shared decision making?
How much information do you want to deal with? Some people have the attitude “Bring it on! There’s no such thing as TMI.” Others have the attitude “He is paid to know all that.”
What are the trade-offs you are willing to make between oncological outcomes and quality of life, and will the doctor be willing to accept your decisions about this?
Personalities
Doctors are people too. They have the same diversity of personality characteristics that everyone else does. Some of us will not want our choice of doctor to be at all influenced by personality. Others cannot imagine working with a doctor they don’t respond to personally.
Here are a couple of comments from patients in my support group:
“I know he is the top surgeon in the area, but he was arrogant. He didn’t listen to anything I had to say and swept aside my concerns as if they were unimportant. He didn’t seem to think there was any risk, as long as I went with him, and oh, by the way, he has an opening next week on a DaVinci that he can squeeze me into. He has a huge ego and wants to play God. I never went back.”
“He has done more robotic surgeries than anyone. He assures me that the operation will be a complete success and that very few of his patients suffer lasting incontinence or lasting ED. His self-assurance makes me feel comfortable turning myself over to his capable hands.”
Here are another two comments:
“He didn’t look me in the eyes once during our meeting. He recited a long list of possible side effects and quoted probabilities from a variety of research studies. He refused to give me a firm recommendation, and told me it depends on what I want. He is a complete nerd who should be calculating statistics rather than dealing with patients.”
“He had all this amazing data at his fingertips. He gave an honest appraisal of all the risks and the benefits associated with each treatment. He gave me everything I needed to make my decision. It was exactly what I needed.”
Each pair of comments described the same doctor. Within each pair, the personality of the doctor was the same, but the personality of the patient was very different. You have to start with a frank self-assessment before you decide what personality characteristics are important to you in choosing a doctor.
Here are some questions to keep in mind as you conduct your first interview with a potential doctor:
• Does he listen?
• Does he adequately address my concerns?
• Do we speak the same language? Do we communicate?
• Does he provide full disclosure?
• Does he make me feel like a human being, or an object?
• Is he rushing me into a decision?
• Is he telling me what I need to know to make an informed decision?
Remember that a good “bedside manner” does not necessarily translate into a competent doctor, as comforting as his presence may be.
Ongoing communications
It’s a good idea to establish how future communications will occur. I prefer to choose doctors who are willing to establish direct lines of communication with patients.
I find phone calling to be a frustrating way of communicating. Because of HIPAA rules, he probably can’t leave a full message. He will seldom be available to speak to you when you call. Often there are gatekeepers you have to get through when you call. Assistants and nurses, though well meaning, may not always get the message exactly right. Avoid asking them questions that only your doctor ought to answer. It puts them in an awkward position, and may lead to errors.
During my first interview, I ask if the doctor is willing to communicate via email. My favorite doctor replies promptly to my questions, typically within minutes. I respect his time by keeping my questions brief so that I don’t abuse the privilege. In this way, we avoid playing phone tag.
Available doctors/treatments – HMO vs PPO
You may be limited in the doctors and treatments accessible to you. If you have insurance with an HMO, you are limited to those doctors. Even with PPO insurance, some doctors will be out-of-network. On your current plan, you may not have affordable access to the doctor or treatment you want. If that is the case, and your variety of prostate cancer is slow growing, consider switching plans at the next open enrollment period. Insurance companies are not allowed to turn you down for pre-existing conditions.
Doctors accepting patients/ insurance/ Medicare
You won’t always be able to get the doctor you most want. Some doctors don’t take Medicare. Some don’t take any kind of insurance. Some aren’t taking any new patients. Sometimes it helps to approach a doctor with a reference from a colleague. I once got a second opinion from a famous specialist through pleading and crying -- whatever works. Have several doctors on your list as backup.
Ability to travel for treatment
There may be some very good doctors in community practice, but, according to database studies, patients generally do better with more experienced doctors, and those doctors are more likely to be found at major tertiary care centers. Some of those doctors will be out-of-state. The important considerations are whether you can afford to travel for a treatment, and whether your insurance will pay an out-of-state doctor.
Below are some typical treatment times. Can you afford to travel for them? There will also usually be an earlier trip for imaging and perhaps fiducial placement for radiation:
• PET scan (diagnostic): 2-4 hours
• Surgery: 2-10 days, depending on complications
• LDR Brachy (seeds): 1 day treatment, 1 day follow-up a month later
• HDR brachy (temporary implants): 2 days -- Sometimes a second 2-day stay a week later
• Combo IMRT with brachy boost: about 5 weeks
• SBRT – every other day for 4-5 treatments
• IMRT, proton – about 8 weeks of treatments
• Focal ablation: outpatient
• Salvage radiation after surgery: about 7 weeks of treatments
• Salvage brachy after radiation: 1 day
Finding doctors
Use your networks. I told everyone I knew that I had prostate cancer and was looking for doctors. My primary care physician knew a couple of good ones, more came from family, friends, and co-workers. Online boards (like this one) are invaluable. Post with a title like “looking for an HDR brachytherapist in Kansas.” Someone may know someone who knows.
Check rating sites like Yelp, ZocDoc, HealthGrades, Vitals, RateMDs, and UCompareHealthCare, but remember that people who bother to write typically have extraordinarily good experiences or extraordinarily bad experiences. The ordinary experiences tend to be under-represented. There are also disguised ratings from disgruntled employees, ex-spouses, friends, etc. Many hospitals and some doctors in private practice now routinely ask patients for doctor evaluations, and they are often available online. I’m particularly impressed by doctors who take the trouble to respond to negative reviews. Such sites are a good thing to check after you’ve narrowed your list down to just a few doctors.
Join a local prostate cancer support group. You will meet men with definite opinions about doctors they have used. Some organizations, like the Cancer Support Community, UsToo, and Malecare, may run groups locally. Sometimes hospitals run them. They should be easy to find with a Google search.
There are a couple of doctor finder and rating services worth looking at. The US News & World Report Doctors, which is free, is a searchable database of doctors and their profiles. CastleConnolly has a Top Doctor rating service that you can access for $2/month. They also publish Top Doctors books annually.
Specialists usually know one another. They go to conferences together, read and referee one another’s research in peer-reviewed journals. If you know a specialist that you can’t access because of insurance or distance, call his office and ask if he has a recommendation in your city.
Pubmed is a great way to find out who’s who in the specialty of interest. In the search bar, enter “prostate cancer” and “your city” (use the quotation marks) to generate names of doctors in your city. You can narrow the specialty of interest to you by using search terms like “biochemical recurrence,” “salvage brachytherapy,” “Active Surveillance,” etc. If you already have some names, it may be a good idea to check them out on Pubmed. In the search bar, enter “Doctor’s Last Name First Initial”[author]” and “prostate cancer.” It will come back with a list of publications written by that doctor (make sure its not a different doctor with the same last name), and will show you the topics that are of special interest to him. If you click on “Author Information,” it will show the hospital where he works and perhaps some contact info. Be sure to Google him as well – doctors may move to different hospitals.
Check Google Books as well. If the doctor was invited to write or edit a book that is used in medical schools to teach new doctors, chances are that he is an acknowledged expert in that field.
If there is a tertiary care center or other hospital that you have access to, they usually have websites that list their staff and their resumes. Check them out in Pubmed, CastleConnolly, and with your online network.
Experience counts. This may be especially true for surgeons and LDR brachytherapists, where the best practitioners are accomplished artists. There are several studies that have shown that surgical outcomes, both in terms of cancer control and side effects are vastly better at high volume hospitals and among the highest volume surgeons. Based on this, some have suggested that prostate surgeries should only be performed at tertiary care centers.
Go to the best that you have access to – you deserve it.
OK, so you’ve generated a list of potential doctors that you have access to. What now? Set up appointments and start interviewing them. Most will allow self-referrals, but some will only take patients referred by other doctors.
The Interview
This is like a job interview. You are assessing whether his knowledge and experience is right for you. But you are also assessing whether he is the type of person you can work with. Before deciding on whether he or she is a good fit, you have to do a frank self-assessment.
How do you prefer to come to a decision? Ask yourself:
1. Do I want to make the key decisions myself, or
2. Do I want to relegate those decisions to the doctor, or
3. Do I want to collaborate in shared decision making?
How much information do you want to deal with? Some people have the attitude “Bring it on! There’s no such thing as TMI.” Others have the attitude “He is paid to know all that.”
What are the trade-offs you are willing to make between oncological outcomes and quality of life, and will the doctor be willing to accept your decisions about this?
Personalities
Doctors are people too. They have the same diversity of personality characteristics that everyone else does. Some of us will not want our choice of doctor to be at all influenced by personality. Others cannot imagine working with a doctor they don’t respond to personally.
Here are a couple of comments from patients in my support group:
“I know he is the top surgeon in the area, but he was arrogant. He didn’t listen to anything I had to say and swept aside my concerns as if they were unimportant. He didn’t seem to think there was any risk, as long as I went with him, and oh, by the way, he has an opening next week on a DaVinci that he can squeeze me into. He has a huge ego and wants to play God. I never went back.”
“He has done more robotic surgeries than anyone. He assures me that the operation will be a complete success and that very few of his patients suffer lasting incontinence or lasting ED. His self-assurance makes me feel comfortable turning myself over to his capable hands.”
Here are another two comments:
“He didn’t look me in the eyes once during our meeting. He recited a long list of possible side effects and quoted probabilities from a variety of research studies. He refused to give me a firm recommendation, and told me it depends on what I want. He is a complete nerd who should be calculating statistics rather than dealing with patients.”
“He had all this amazing data at his fingertips. He gave an honest appraisal of all the risks and the benefits associated with each treatment. He gave me everything I needed to make my decision. It was exactly what I needed.”
Each pair of comments described the same doctor. Within each pair, the personality of the doctor was the same, but the personality of the patient was very different. You have to start with a frank self-assessment before you decide what personality characteristics are important to you in choosing a doctor.
Here are some questions to keep in mind as you conduct your first interview with a potential doctor:
• Does he listen?
• Does he adequately address my concerns?
• Do we speak the same language? Do we communicate?
• Does he provide full disclosure?
• Does he make me feel like a human being, or an object?
• Is he rushing me into a decision?
• Is he telling me what I need to know to make an informed decision?
Remember that a good “bedside manner” does not necessarily translate into a competent doctor, as comforting as his presence may be.
Ongoing communications
It’s a good idea to establish how future communications will occur. I prefer to choose doctors who are willing to establish direct lines of communication with patients.
I find phone calling to be a frustrating way of communicating. Because of HIPAA rules, he probably can’t leave a full message. He will seldom be available to speak to you when you call. Often there are gatekeepers you have to get through when you call. Assistants and nurses, though well meaning, may not always get the message exactly right. Avoid asking them questions that only your doctor ought to answer. It puts them in an awkward position, and may lead to errors.
During my first interview, I ask if the doctor is willing to communicate via email. My favorite doctor replies promptly to my questions, typically within minutes. I respect his time by keeping my questions brief so that I don’t abuse the privilege. In this way, we avoid playing phone tag.