Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

Tuesday, December 12, 2017

Second opinions

When should I get a second opinion?

In our era of increasing medical specialization, it is sometimes a good idea to get additional medical opinions from experts in specific fields. It is unreasonable to expect any single doctor to know everything. There may be several reasons for seeking a second opinion.

Here are some situations that may lead you to get a second opinion:

• Just a feeling that something doesn’t seem right to you.
• The response to treatment isn’t what you’ve been led to expect
• Your doctor has told you something (or you think he has) that conflicts with information from another doctor or study you’ve read
• You want another opinion regarding a controversial issue (e.g., adjuvant vs salvage radiation, intermittent vs continuous hormone therapy)
• You want to explore a specific new or experimental diagnostic technique or treatment (e.g., CDUS, mpMRI, focal ablation, hyperthermia, etc.)
• You want a more aggressive protocol – something beyond the standard of care.
• You have a rare type of cancer (e.g., neuroendocrine) and want advice from an experienced specialist.
• You want another set of eyes or a confirmation on your biopsy slides, pathology, or radiology results.

The first second opinion we should all get is an expert opinion on our biopsy slides. The pathologist at most hospitals must be a jack of all trades. He has to be able to assess all kinds of tissue samples from cancers as well as all other diseases. Consequently, it would be unreasonable to expect them to be expert at reading a prostate biopsy. It is as much an art as a science, and even practiced pathologists looking at the same slide may differ. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. Their opinions are widely held to be definitive. The out-of-pocket cost may be in the $300 range (insurance may not cover it), and it is a simple matter to call your urologist to forward the slides to them. Here is the link.

The other diagnostic technique where a second opinion may change your treatment is multiparametric MRI (mpMRI). There has been a surge in popularity of mpMRIs and they seem to be offered by new facilities every day. The downside is that these are notoriously difficult to read. Experienced “rockstar” radiologists may score them differently from neophytes, and there is considerable inter-observer variability. If you are confident that a “rockstar” read yours, all well and good. If you got yours at a facility that recently began offering them, you may want the DVD sent to a rockstar for a second opinion.

Color Doppler Ultrasound (CDUS) is another imaging technique where years of training make a difference. There is a dynasty of CDUS readers who have mentored pupils starting with Dr. Lee. He taught Dr. Bahn, who taught Dr. Ukimura. I’ve had the opportunity to watch Dr. Bahn in action, and can attest to the artistry involved.

Who do I get second opinions from?

Many of the same techniques mentioned in the blog  “Finding the right doctor,” may be useful in finding the right doctor for a second opinion. 

One aspect to consider is whether you want an opinion from an unrelated doctor at an unrelated institution. If you are suspicious of something your doctor has told you, you may not want him to recommend the doctor for the second opinion. For example, I spoke to a man who had detectable yet stable PSA after his RP. His pathology Gleason score was 6, negative margins, no EPE or SVI. His urologist recommended salvage radiation, and a second urologist at the same practice who took an MRI concurred. He then went to a large tertiary care facility, and an MRI there revealed a “huge” chunk of prostate tissue left behind – something his first urologist failed to mention on the surgery report, and the second urologist did not mention on the MRI report, only noting a small amount of residual tissue. I don’t mean to imply that most urologists are like those two, but I’m only suggesting that an unrelated second opinion has the imprimatur of impartiality.

I think many tertiary care facilities have “tumor boards” that meet periodically to discuss difficult cases. You may be getting the benefit of some of the great practitioners in the field, and also some “out-of-the-box” thinking from experts in related disciplines. This is one of the advantages to treatment at large tertiary care facilities.

How do I tell my doctor?

Doctors are professionals. Approach them with the respect they deserve, and most will respond in kind. I’ve never heard of a doctor objecting to getting a second opinion – they are trained to value them. As long as you don’t take a confrontational stance, he will probably be fine with it. Also, avoid “shopping” until you get the opinion you decided in advance you wanted to hear. Doctors have been known to drop patients for doing that. Just as you expect your doctor to keep an open mind, he has a right to expect the same from you.

Other second-opinion issues

• How do I resolve two conflicting opinions from equal experts? 
• Will my insurance cover it?
• What if my doctor won’t follow the second opinion?
• What if I don’t like the second opinion?

See also:

Managing the Doctor/Patient Relationship

Being one’s own patient advocate means taking responsibility for one’s own health decisions. This is a quantum change from the way things were not very long ago. My parents were very silent in their meetings with doctors. They trusted the doctor to do what was best for them, even though the doctor could only surmise, based on his subjective point of view and his experience with other patients, what it was my parents’ wanted. This is sometimes called the paternalistic model of doctor/patient relationships.

The new model places more of the responsibility with the patient. Some will not want to take that on, and that’s OK too. Sometimes it can’t be salvaged – the personalities and goals are just too different. Patients drop doctors, and vice versa. 

Shared decision-making

The new model of doctor/patient relationships calls for shared decision-making. The doctor and patient work out the treatment plan collaboratively. This puts a greater onus on the patient, and relieves the doctor of some of his traditional responsibilities. Most doctors don’t really want to play God.

The patient must make explicit to the doctor what his priorities are. He has to think about what is really important to him, and which oncological risks and risk of adverse events from treatments he is willing to take. Are you willing to trade some quantity of life for quality of life? Are you willing to forgo ADT with radiation even though it may work better with it in the hope of diminished sexual side effects? Are you willing to try chemo earlier rather than later in disease progression to get a longer survival benefit, but knowing it may eventually fail? Do you want to put off taking ADT to have better quality of life, knowing the disease may progress unchecked? How much pain are you willing to tolerate without feeling drugged all the time? These are hard choices.

Also, let the doctor know if you are willing to enter clinical trials or be treated with an experimental protocol. Some patients want the tried-and-true, and most doctors will only offer the standard-of-care unless the patient speaks up. You have to decide for yourself if the potential benefit of an experimental protocol outweighs the risk that it might not work as well.

It helps to become as informed as you can in preparation for the meeting with your doctor. Try to meet the doctor on his own terms and with his own terms. On his own terms means that the information you accumulate is of the same quality as his information – studies published in recognized peer-reviewed publications, rather than anecdotes from a co-worker or random Internet sites. With his own terms means trying to learn the lingo as best as you can. Know the meaning of "Gleason score", "stage" and "PSA," for example. At a meeting last year, a patient asked a doctor, “For how long will I need ADT if I have radiation?” The doctor explained that it depended on his risk level, which was a reasonable answer. However, I knew what the patient really meant (I talked to him earlier) and asked “He means, for how long must he be on ADT neo-adjuvantly?” By knowing the terminology, I got the answer the patient wanted.

The doctor has responsibilities under this model too. He is responsible for administering treatments that maximize oncological control while minimizing side effects of treatment within the limits dictated by the patient. The doctor becomes the key information resource for the patient. He should provide a realistic assessment of the risks and benefits attached to each treatment option. Full disclosure of all possible side effects should be discussed and provided in writing. He must listen to the patient and acknowledge the factors that are most important to him.

Because there is so much more shared information under this new model, Patient Decision Aids (PDAs) have been developed. These are in writing or online booklets that take the patient through all the risks and benefits and ask him to make decisions about what is important. The doctor and the patient then discuss the PDA as an aid to negotiating a mutually satisfactory treatment plan. But a PDA is not a substitute for a face-to-face discussion. When used instead of rather than in addition to, the results can be worse than if no PDAs were used (see this link).

Managing egos

Yes, some doctors are very full of themselves, and don’t think the patient can possibly have anything useful to say. In my experience, that is a rarity. Doctors are, for the most part, exceedingly smart and intellectually curious people. To the best of their ability, they want to do what’s best for the patient. It’s all about respect. Respect his time, his experience and his knowledge, and he is likely to return the favor. If you approach him with that attitude, ego problems are likely to disappear.

Of course, it can never hurt to let him know how much you respect him. If you have something genuinely complimentary to say, verbalize it. Let him know how much you appreciate his time and effort on your behalf. If you are gracious to him, he may be more gracious to you.

I always assume he knows at least whatever information I know. He reads full-text peer-reviewed journal articles and attends conferences. However, he may have a full patient load and may not have read about some recent finding or other. (See Research data below).

Ask questions, rather than making demands. “What is your opinion about 18 months of ADT vs 3 years?” is a better approach than “I won’t take ADT for more than 18 months!”

I hate to sound sexist, but if you can, bring your wife, or a female friend or relative along (or at least take a lesson from their communication style). They have spent a lifetime dealing with the male ego, and are just better at it. Unlike men, who are often more competitive by nature, women are more naturally collaborative. That is a much more productive interaction for the doctor/patient relationship.

Research data

Sometimes you will come across a research study online that seems perfectly relevant to your case. How should you handle it with your doctor?

The way I do it is, first of all, respectfully. I start by acknowledging that he probably has seen it. My approach is collaborative and open, rather than confrontational and closed-minded. I try to share it, preferably via email, before my visit, if one is coming up. This gives him a chance to look at it and respond to it in a more considered way. I am also careful about sources. I would never send some “miracle cure” from a random Internet site. It is always based on peer-reviewed medical evidence. I am also open to refutation: I may not have understood why that case does not apply to my case; I may not know that there are more recent findings, possibly from a higher level of evidence; or, I may have misunderstood the findings or conclusions.

During the visit

You get the most out of the doctor/patient relationship if you come to the visit prepared.

• Bring your medical records with you (e.g., PSA results over time, biopsy, prostate size, staging, pathology report, medication history). I keep all my records in a computer file for easy access and retrieval.

• Bring a written list of your questions. If you try to remember – you won’t. It’s just too stressful, and there’s too much time pressure. I like to print them out and leave space to write down the doctor’s answers.

• Take notes. It’s just too easy to miss something when you’re trying to absorb so much all at once, often with unfamiliar terminology. It’s also a good idea to record the conversation, with the doctor’s permission, and to transcribe it to a computer file later. That forces you to go over it and may help you recognize that there was something that requires clarification. However, it is tedious to listen to a long meeting, and in my experience, most patients do not review the recording. Notes are better.

• Bring someone with you. Two sets of ears are better than one, as are two sets of notes. Afterward, stop for a coffee and de-brief. Compare your notes. Did you both hear the same thing?

• Write a summary of the meeting. I email it to myself so I have a permanent record. It’s not a bad idea to email your doctor a brief thank you note, and highlight what was discussed, agreed upon or left open, and what the next steps will be.

Preparation for a meeting:

  • ....give the doctor a heads-up that these (whatever they are) are the topics you want to address at the next meeting- email in advance of the meeting - the more notice the better. 
  • ... email the links to a peer-reviewed journal of any topics you want to discuss 
  • ...write down your questions, leaving space to write down notes of his answers (or, let whomever you bring along write them down) - debrief with that person afterward to get concurrence that you both heard the same thing. 
  • ...let the doctor know if you are willing to risk a clinical trial.   
  • ...pump up the doctor's ego - be self-effacing (note: women are usually much better at this than men are) 

  • ... surprise the doctor with a question - the reaction to a surprise is always the fallback position (the Standard of Care) 
  • ... pull out an article during the meeting- there is no time for him to consider it.  
  • ... tell him about something you heard from a friend or on the Internet --that is just inviting him to dismiss it.   
  • ...ask him things he can't know - e.g., which choice is better? will it work? how long do I have? 
  • ... let your ego get in the way - it isn't important to be "right" - it's important to find the best treatment for you, even if you were mistaken about it going into the meeting. 
In other words, manage the meeting the same way you would a business meeting.


We all want to eliminate unnecessary visits, but keep the essential ones. You may have to visit the doctor for treatments, certain tests, to update the diagnosis, to change the treatment plan, or to discuss side effects and remedies. But it may not be necessary to have a visit just to check in or discuss every lab test. There should be an agreed-upon purpose or goal for each visit.

I think it’s usually a good idea for the doctor to call/fax an Rx for lab tests ahead of your visit with him. Your visit becomes more productive when you can sit down together to discuss the lab test results and any actions to be taken because of them.

Most communications with your doctor can probably be handled with a quick email. Most medical centers are moving towards email communications and away from phone communications. I hope that waiting for the doctor’s phone calls, and playing “phone tag” with him will soon be a relic of the past. Also, it avoids playing “telephone” with a string of intermediaries who put their own spin on the message. If you keep it brief and to the point, email messages can be a lot more efficient and effective. It also facilitates sending copies of studies you may want his comments on.

Multiple Doctors

When faced with the primary therapy decision, there may be a large number of doctors you meet with - one or two urosurgeons, an IMRT specialist, an SBRT specialist, one or two brachytherapy specialists, a specialist in proton therapy, a specialist in ablation therapy, an active surveillance specialist, as well as experts in special diagnostic tests. It is tempting to want one doctor to be a "quarterback" and some doctors advertise themselves as doing that. I recommend that you resist that urge - never give up your power, and rely only on doctors with specific expertise. There is no doctor who knows anything close to what experienced practitioners know (which will not prevent them from expressing opinions). Get your information directly from the experts, and assess it yourself. It can be a formidable task, so take your time. There is no rush - even men with high-risk prostate cancer did no worse if they waited 3 months between diagnosis and treatment (see this link).

Some hospitals offer a team approach - sort of like one-stop shopping. All their best experts give you their opinions. Ideally, you would want to pick your own best doctors, but if you belong to an HMO, that may not be possible. If you have to have a team approach, it is best if you meet with each team member separately. Doctors are often reluctant to contradict or disagree with one another in the same room.

Sometimes it is time to move on from one kind of specialist to another. After radiation therapy, you may want to see a urologist or a proctologist/gastroenterologist to manage symptoms. Similarly, after prostatectomy, it can be useful to see a specialist in sexual medicine. If PSA increases steadily post-prostatectomy, patients should see a radiation oncologist. If all salvage therapies have failed, that is the time to see a medical oncologist.

Managing your records

Good recordkeeping is essential to good communication with your doctor. Communications are so much easier when you don’t have to guess what some report said, but can look at the actual report instead and agree on the facts.

Keep copies of all lab tests and reports. Computerize the results if you can for easier access and organization. If it’s too much trouble to enter lab test results on spreadsheets, at least scan them into your computer. To that end, I ask my doctor’s office to email me copies of all reports. With the new hospital and lab report email systems, it’s already online for me. I like to send myself copies anyway, in case I someday lose access to those systems.

I like to keep a log of all my doctor visits – just the date, the doctor, and some brief notes about what was discussed. It is handy for billing, as well as tracking the history of the disease.

There’s one chart that I find invaluable, and it's one that doctors love. That’s a chart of my PSA over time, on which I also note key events like biopsies and therapies. 

Assessment Questionnaires

It is equally important that the doctor evaluates and tracks the patient’s subjective symptoms in addition to his objective symptoms. Another series of records I like to keep is my qualitative assessment of my condition over time. 

A popular instrument for tracking quality of life with prostate cancer is called the Expanded Prostate Index Composite (EPIC). It’s a validated questionnaire used to obtain the patient’s subjective assessment of his quality of life based on urinary, rectal and sexual dimensions. Many doctors will ask you to fill it out before treatment begins to get a baseline measure. Then you fill it out periodically to track your progress on those dimensions. My RO uses it as a springboard for discussion at each visit. You can download a copy here and take it, score it (scoring instructions here), and track it over time, even if your doctor doesn’t. It might lead you to want to discuss some aspect of it with him. Another version is called the UCLA Prostate Cancer Index (UCLA-PCI). Other tests sometimes used are the International Prostate Symptom Score (IPSS) which only tracks urinary symptoms. An instrument for measuring sexual function is the International Index of Erectile Function (IIEF)  or the shortened version called the Sexual Health Inventory for Men (SHIM)

For cancer patients, the performance status is often tracked using the Karnofsky Performance Status Scale or the ECOG Performance Status. There is a questionnaire, often used in Europe, for tracking the patient’s quality of life with cancer called  EORTC QLQ-C30

Your doctor will probably also fill out a co-morbidity evaluation. The Charleson Co-Morbidity Index or the Adult Co-Morbidity Evaluation- 27 (ACE-27).

See also:

Finding the right doctor

With most other kinds of cancers, the patient (after a diagnosis) works with an oncologist, who brings in other specialists as needed. With prostate cancer, patients always start with a urologist. That urologist may have also performed the biopsy, and he is often a urosurgeon as well. Sometimes he is a urologic oncologist. Many patients never get further than the first urologist, and that is almost always a bad idea. Patients should interview several specialists before deciding upon the one who he will share decision-making responsibility with. Depending upon the initial diagnostic information from the biopsy, PSA, DRE, and (rarely) a bone scan/CT, the patient may want to consult with a urosurgeon, at least one radiation oncologist, a medical oncologist, or sometimes, a urologist specializing in active surveillance, or a specialist in ablation therapy. If salvage treatment is needed, a radiation oncologist or specialist in ablation therapy may be needed. How does a patient find the best doctor for the job?

The Right Specialist

I strongly recommend putting only one kind of doctor as your primary health partner. Other kinds of doctors (urologists, radiation oncologists, interventional radiologists, radiologists, pathologists, geneticists, various organ specialists, and second opinions may be called in as needed). 

Some institutions use a team approach, which is convenient. The downsides of the team approach are that they often meet without you there, so you only get to hear someone's summary and not the dissenting opinions. When they do meet with you as a group, valuable opinions may be drowned out and some doctors are deferential to their colleagues. Also, the team may not reflect the best doctors, if the best specialists do not work at that institution. It is also asking for trouble if you have too many cooks. Doctors are very specialized. A medical oncologist has only some familiarity of what a radiation oncologist does, but that may not stop him from expressing an opinion. It is up to you to confer with the best specialist for your needs and to form your own opinions.

The doctor's job is to provide you with all the information you need to make an informed decision, not to make a decision for you. It is your body and your life, and only you are qualified to make those critical decisions. Don't give up your power! 

 The three kinds of specialists who you can choose to be your primary health partner - a medical oncologist (MO), a urologist (Uro), and a radiation oncologist (RO). The one you choose as your primary at any given time depends on your answer to the following question:

Is my cancer localized? 

If your cancer is still localized, it is potentially curable. Prostate cancer may still be cured even if the cancer has escaped to pelvic lymph nodes, although this has not been definitively proven. The doctors that specialize in curing prostate cancer are Uros and ROs.  Most of us start out with a Uro who does the initial diagnosis. If the cancer seems to be localized and one decides to have surgery, that is usually done by a urologist too - sometimes the same one, sometimes different. Find the most experienced Uro you can - robotic or open doesn't make a difference.  

Urologists also run active surveillance programs at most institutions. That should be the primary focus if you are diagnosed with low-risk prostate cancer. 

Also, seek out the opinions of one or more ROs. ROs have subspecialties: brachytherapy (high dose rate (temporary implants) or low dose rate (seeds), SBRT, hypofractionated IMRT, IMRT, Salvage IMRT, and protons. Unfavorable risk patients should be focused on brachy boost therapy. Favorable risk patients should concentrate on monotherapies, which have fewer side effects. Focal salvage radiation for patients who have had primary radiation treatment is receiving more attention (see this link). Experimental therapies might include SBRT for high-risk patients, or focal radiation as primary therapy. If you are recurrent after a prostatectomy, your Uro's job is done. At that point, an RO becomes your primary health partner. ROs usually know if any adjuvant medicines are required and for how long.  

Focal, whole gland and hemi-gland thermal ablation as primary or salvage treatment is receiving a lot of attention. This may involve HIFU, TULSA, FLA, Cryo, PDT, IRE, RF or MW. They are all experimental and should be approached with caution. There are many unanswered questions. The FDA approved HIFU for removal of prostate tissue, not as a cure for prostate cancer, but many unscrupulous doctors promote them as cures. It should only be done by a fully informed patient within a clinical trial.

Some patients think that if they have localized prostate cancer and they see an MO, they will get an unbiased opinion. This is never the case. All specialists are biased towards the field they specialized in, or else they are in the wrong field. Urologists have a bias towards surgery and are most familiar with surgical issues. ROs are biased towards radiation of the type they specialize in and are familiar with what radiation can and can't do in details that Uros and MOs can't hope to be familiar with. MOs who specialize in treating men with incurable cancers are biased towards using lots of medicines and testing that may be unnecessary and create anxiety. A patient is and always should be his own quarterback.

If your cancer is not localized, prostate cancer can still be managed as a disease one can live with, sometimes for long enough that you will die of something else first. The kind of doctor who specializes in this is an MO. He should specialize in urologic oncology, preferably at a top tertiary care cancer institution. If you fall into any of the following categories, an MO should be your primary health partner:
  • Recurrent after prostatectomy (or primary radiation) and salvage radiation, unless salvage pelvic lymph node radiation is still an option 
  • Recurrent with distant metastases (Stage M1) 
  • Newly diagnosed with distant metastases (Stage M1) 
  • All other Stage M1
Various specialists may still be called in (e.g., a radiation oncologist for palliative treatment of metastases.)

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
• Hypofractionated IMRT - about 5 weeks of treatments
• IMRT, proton – about 8 weeks of treatments
• Focal ablation: outpatient
• Salvage radiation after surgery: about 7 weeks of treatments
• Salvage hypofractionated radiation after surgery: about 5 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 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, ZocDocHealthGrades, Vitals, and RateMDs, 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.

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 it's 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 (see suggested questions below). 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? (best idea!)

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?

For suggested questions to ask on interviews, see the following links:


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. 

See also: