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, ZocDoc, HealthGrades, 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:

• Questions to ask (and not ask) on a first urologist visit after a biopsy
• Questions to ask on a first visit for primary radiation therapy (IGRT/IMRT)
• Questions to ask an SBRT specialist
• Questions to ask a low dose rate (seeds) brachytherapist
• Questions to ask a high dose rate (temporary implant) brachytherapist
• Questions for a focal ablation therapist
• Questions for an adjuvant or salvage radiation doctor
• Questions to ask yourself

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. 

See also:

Managing the Doctor/Patient Relationship

Getting a Second Opinion

Questions to ask YOURSELF in deciding on a primary therapy

• Do I need to see a pathology report to tell me how contained it was?

• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?

• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)

• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?

• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)

• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?

• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).

• Am I prepared to undergo radiation therapy and its side effects?

• Am I prepared to undergo surgery and its recovery?

Questions for an adjuvant or salvage radiation doctor

Questions for a Adjuvant or Salvage Radiation Interview.

1. How many prostate cancer patients have you treated with adjuvant/salvage radiation?

2. How has your practice of salvage treatment changed, if at all?

3. Is there any kind of scan that you recommend to rule out metastases that might be useful at my current PSA?

4. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?

5. Do you think I should get a Decipher test to find my probability of metastasis in the next 5/10 years? Do you know if my insurance covers it? What do you think about their PORTOS score?

6. How large a dose do you propose for the prostate bed? (should be near 70 Gy -72 Gy)

7. Do I need pre-treatment, concurrent or adjuvant ADT?

     a. Why?

     b. What's the evidence that it's useful?

     c. For how long?

8.How do you decide whether to treat the pelvic lymph nodes?

     a. If so, at what dose?

     b. How do you plan to prevent bowel toxicity?

     c. How will you account for the separate movement of that area and the prostate bed?

9. What do you think of doing this in fewer treatments (hypofractionation)?

10. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, etc.) Why do you prefer that one?

11. What is the actual treatment time for each treatment? (faster is better)

12. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only? Soft tissue?

13. How will inter- and intra-fractional motion be compensated for?

14. What measures do you propose to spare the bladder and rectum?​ (ask about treatment margins and dose constraints)

15. What side effects can I reasonably expect, and how do we handle them?​(discuss in detail!)

16. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?

17. How will we monitor my progress afterwards, both oncological and quality of life?

18.What's the best way for us to communicate if I have a question or issue?

Questions for a focal ablation therapist

Questions for focal ablation therapists (read this link first)

1.     Am I a good candidate for focal ablation? Why do you say that?

2.     What about proximity to other organs – urethra, bladder neck, rectum?

3.     How would you assess my risk of urethral stenosis requiring catheterization?

4.     Is there a risk of recto-urethral fistula?

5.     Should I expect some incontinence for a while? For how long?

6.     What about damage to the neuro-vascular bundles on one or both sides?

7.     What is the risk of losing the ability to have erections? Orgasms? or have painful orgasms?

8.     What is the likelihood that I will still be able to ejaculate at orgasm?

9.     Should I expect blood in semen? In urine? Is climacturia ever an issue?

10. Should I expect bleeding and sloughing of necrotic tissue through my penis?

11. How long after the procedure can I have anal receptive sex?

12. What is the likelihood that undetected cancer in the untreated area will become a problem? How will we monitor that?

13. What is the likelihood that cancer in the treated area will not be fully killed off? How will we monitor that?

14. Will we use imaging (mpMRI or PET/CT) to assure the cancer is gone? Will we do a follow-up biopsy? Is there a pathologist here who is expert at reading biopsies of ablated tissue?

15. How will we monitor progression after the procedure? Since my PSA from the unablated zone will always be there, how do we know if progression has occurred?

16. What is the cost of the procedure? Does that include anesthesia?

17. What is the cost of a re-do, if I need one?

18. Are any of the costs covered by insurance?

19. How many focal ablations (as a primary therapy) have you done?

20. Have you always used the same equipment?

21. How has your practice changed over the years?

22. Are you going to be doing all of the really important parts of my procedure yourself?

23. What percent of those required re-dos?

24. What percent eventually needed other salvage therapies? What kinds of salvage therapies were used? Radiation? Surgery? Were they successful? What kinds of side effects occurred from the salvage?

25. What is the longest follow-up you’ve done of patients you’ve treated?

26. How long should follow-up be before we deem it a success, or am I always on “active surveillance”?

27. What kind of aftercare will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?

28. What is the best way for us to communicate? May I ask short questions by email?

Questions not to ask:

1.     What treatments should I consider and which is the best for me? (this would be asking your doctor to be an expert in treatments outside of his specialty, and also to know which benefits and risks are most important to you – he doesn’t have time or inclination to be expert in all therapies, and he’s not a mind reader.)

2.     If I were your father, what would you recommend? (You don’t know how he feels about his father (lol), and more importantly, what he would feel most comfortable with is not necessarily what you would feel most comfortable with. This is your decision to make and live with – don’t give up your power!)