Salvage Radiation Dose: Decision-Making Under Uncertainty

A large, well-done, confirmed randomized clinical trial (RCT) is the only evidence that proves that one therapy is better than another. According to current consensus, this is deemed "Level 1a" evidence. But this high level of evidence is seldom available. This is especially true of prostate cancer because it takes so long to achieve acceptable endpoints like overall survival, prostate cancer-specific survival, and metastasis-free survival. Such studies are very expensive and difficult to carry out.

Alexidis et al. analyzed the National Cancer Database for men treated with adjuvant or salvage radiation therapy (SRT) after prostatectomy failure from 2003 to 2012. SRT with doses above 66.6 Gy were labeled "high dose," and SRT with doses above 70.2 Gy were labeled "very high dose." Between 2003 and 2012:

• High dose SRT utilization increased from 30% to 64%
• Very high dose SRT utilization increased from 5% to 11%
• Utilization of high and very high dose rates was greatest at academic centers, lowest at community centers.

The authors decry the fact that this doubling of high dose SRT took place in the absence of RCTs that would definitively establish proof. They point out that the evidence for it is based on observational studies (see, for example, King and Kapp and Ohri et al.), which are fraught with confounding due to stage migration,  selection bias and ascertainment bias. Stage migration was the result of better imaging becoming increasingly available to rule out SRT from patients already harboring occult distant metastases. Also, three randomized clinical trials published in the middle of the observational period convinced many radiation oncologists that earlier SRT led to better tumor control than waiting. Selection bias occurred because the patients selected to get higher doses of radiation were healthier and those whose cancer was less progressed -- they would have done better regardless of the dose. Ascertainment bias resulted from the longer observational period for patients treated in 2003 vs. 2012 - the opportunity for treatment failure increases with the amount of time that has passed. The authors also doubt that biochemical recurrence-free survival (which is what was used in observational studies) is a good enough surrogate endpoint for overall survival. They are right that all these factors may be confounding the previous retrospective analyses, and the only way to know with certainty is to conduct a trial where patients are randomized to receive high or low SRT doses,  and follow patients long enough so that median survival or at least metastasis-free survival is reached in the low dose group.

There has been one randomized clinical trial of SRT dose escalation in the modern era. The SAKK 09/10 trial found little difference in acute toxicity symptoms at 70 Gy compared to 64 Gy, but patient-reported urinary symptoms worsened. Unfortunately, many patients were treated with three-dimensional conformal radiation therapy (3D-CRT), which had higher toxicity than the IMRT in widespread use now. Also, it uses freedom from biochemical failure (not yet reported) as its surrogate endpoint.

So, what is a patient to do in the absence of Level 1a evidence? Should he accept the higher doses with possibly added toxicity and better tumor control, or should he go for a lower dose with possibly less toxicity and less tumor control?

As a compromise, Mantini et al. recently reported 5-year biochemical disease-free survival (bDFS) and other outcomes for patients who received higher dose SRT (70.2 Gy vs. 64.8 Gy) depending on their post-operative pathology. They also may have received (depending on pathology) whole pelvic radiation and adjuvant hormone therapy. Those patients who received the higher dose had equivalent 5-yr bDFS in spite of their worse disease characteristics. Those who received only 64.8 Gy still had a 5-year bDFS as high as 92%. We do not know how many of those recurrent men with favorable disease characteristics actually needed any SRT. They were all treated with 3D-CRT and toxicity was not reported.

The other thing we can do when our information is imperfect is go through the Bradford Hill checklist. It can give us more confidence if we have to make a decision based on less than Level 1 evidence. The factors that ought to be considered are:

• Strength of Association (larger associations are more likely (but not necessarily) causal)
• Consistency of Data (independent studies all lead to the same conclusion)
• Specificity (a very specific population is differentially affected)
• Temporality (the effect has to occur after the cause)
• Biological gradient (too some extent, more drug/radiation dose leads to more effect) 
• Plausibility (one can come up with a plausible explanation)
• Coherence (lab studies demonstrate a plausible mechanism for the observed effect)
• Experiment (has the effect been prevented by modifying the cause)
• Analogy (similar factors may be considered)

Unfortunately, the authors did not refer to Dr. King's more recent analysis of SRT dose/response, which we discussed in depth here. He looked at 71 studies, demonstrating consistency. While it is not Level 1 evidence, it is Level 2a evidence. In it, he observes that the salvage radiation dose response conforms exactly to the primary radiation dose response.  In other words, the prostate tumor is equally radio-resistant whether it is in the prostate or the prostate bed. This increases the plausibility of a dose effect of SRT. What's more, dose escalation was proven to be beneficial for biochemical recurrence-free survival, metastasis-free survival, and freedom from lifelong ADT use, for primary radiation in intermediate risk men by a RCT (RTOG 0126). So, we also have greater confidence in SRT dose escalation by analogy.

RTOG 0126 did not find an increase with higher dose in 8-year overall survival or cancer-specific survival. This calls into question whether these longer-term effects are really useful endpoints if we are to be able to obtain and use the results of any clinical trial in a reasonable time frame.

Dr. King proposed a randomized clinical trial of 76 Gy vs. 66 Gy for SRT. Meanwhile, he is routinely giving his SRT patients at UCLA 72 Gy. Dr. Zelefsky at Memorial Sloan Kettering Cancer Center and other eminent radiation oncologists have also upped the radiation dose to 72 Gy. Such doses seem to be safe and effective, but it is one of many factors in the SRT treatment decision that must be carefully considered by patients and their doctors.

A PSMA-based PET scan can change salvage radiation treatment decisions

The new PSMA-based PET scans provide a way to locate exactly where the cancer has spread to after an unsuccessful prostatectomy. Formerly, the only tools we had were scans that could only detect very large or rapidly growing tumors at PSAs well above the levels most radiation oncologists would be comfortable treating with salvage radiation; that is, there is widespread agreement that success rates improve the lower the PSA is when SRT is used. Even the newly approved Axumin PET scan only detects cancer in 38% of patients if their PSA is in the range of 0.2-1.0 ng/ml. By contrast, as we saw recently, the Ga-68-PSMA-11 PET scan has detected cancer in half of men when their PSA was still below 0.2, and in about two-thirds of men whose PSA was 0.2 - 0.4. The PSMA-based PET scan has the power to change SRT treatment decisions.

Calais et al. reported the results of a multi-institutional study of the Ga-68-PSMA-11 PET/CT in 270 men with biochemically recurrent prostate cancer after prostatectomy while their PSAs were still below 1.0 ng/ml (median 0.44). The institutions comprised UCLA, Technical University of Munich, Ludwig-Maximillian University of Munich, and University of Essen. Patients received PET scans from 2013-2017. Researchers painstakingly mapped all sites of cancer to find the locations of cancer that would have been missed if they had just blindly treated the prostate bed and/or the pelvic lymph node field recommended by RTOG guidelines.

The following table shows how treatment decisions might change based on their findings.

So, all in all, about half of treatment decisions might change - 30% in a minor way, 19% in a major way. The major changes would be: 

• forgoing SRT entirely in up to 12%
• consider metastasis-directed radiation in 8% - a treatment of unknown significance
• changing from prostate bed-only to whole pelvic SRT in 11%, so as to potentially render curative what would have been a non-curative treatment
• expanding the pelvic treatment field in 7%, so as to potentially render curative what would have been a non-curative treatment

At the above institutions, extended pelvic lymph node dissection (ePLND) is common practice - 81% of patients had a PLND. Consequently, 20% of patients already had detected pelvic LNs (N1) before the scan. At many institutions in the US where ePLND is less common in intermediate and high risk patients, this can cause a much larger and potentially curative change in the treatment plan from prostate bed-only to whole pelvic radiation. The researchers are to be congratulated for the painstaking work in contouring and comparing so many pelvic scans.

As one might expect, PSMA-based cancer detection was higher for those with Gleason score more than 7, and those with pathological stage N1 and T3. The patient's PSA at the time of the scan played a major role. While almost two-thirds had a PSA ≤ 0.5 ng/ml, the detection rate was 41% for those patients vs. 60% for those with higher PSAs. While detection improves with higher PSA, it is important for patients to understand that it is unwarranted (and potentially unsafe) to wait for PSA to rise just so that more cancer can be detected. That would be a self-fulfilling prophecy: by waiting for the cancer to put out more PSA, one is virtually ensuring that the cancer will grow, spread, and possible metastasize. Although we await definitive clinical trial data, most radiation oncologists recommend early treatment (before PSA reaches 0.2 ng/ml) for men with adverse pathology or for those evincing a distinct pattern of PSA progression after prostatectomy.

While a previous analysis showed that the Ga-68-PSMA PET had little effect on SRT decisions, and no patients were upgraded from incurable to potentially curable, this larger, more detailed study indicates that about 1 in 5 patients can be upgraded, and 1 in 6 can be spared SRT. This would seem to justify the cost. UCLA charges $2650 for recurrent (and high risk) patients. NIH is recruiting recurrent and high risk patients for an improved PSMA-based PET scan (called DCFPyL) that  is free (and transportation to Washington D.C. is covered as well).

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:

Finding the Right Doctor

Managing the Doctor/Patient Relationship

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:

Always...: 

• ....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) 

Never...:   

• ... 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.

Communications

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

Getting a Second Opinion

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?