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

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

Why we should care about standard of care

“Standard of care (SOC),” is a legalistic term. As it applies to medicine, it means that the doctor has proceeded with reasonable caution, as any minimally competent doctor would exercise in such circumstances. It clearly protects the doctor from malpractice lawsuits. But is it always in the patient’s interest? Can following it too rigidly harm patients whose status requires adjustment for natural variation? Conversely, what are the risks of departing too far from the norms?

In radiation therapy, SOC can be determined by professional organizations, consortiums of hospitals (like the National Comprehensive Cancer Network - NCCN), NGOs (like the American Cancer Society), individual hospitals, peer review, or by the customary practice of individual doctors. For clinical trials of new therapies, an Internal Review Board (IRB) is responsible for defining ethical constraints. In addition, the FDA, the Centers for Medicare and Medicaid Services (CMS), and insurance companies may define SOC by dictating which therapies are approved and reimbursable. The American College of Radiology (ACR), the American Society for Therapeutic Radiation and Oncology (ASTRO) and the American Brachytherapy Society (ABS) are the largest professional organizations of radiation oncologists.

For interested readers, here is a list of some guidelines and white papers on specific radiation therapies:

Low Dose Rate Brachytherapy for Prostate –(ABS) (ACR)

High Dose Rate Brachytherapy for Prostate (ABS)

High Dose Rate Brachytherapy (ASTRO)  (ACR)

IGRT (ASTRO) (ACR) (ACR)

IMRT (ASTRO) (IMRT)

SBRT (ASTRO)

Proton Beam Therapy  (ASTRO)

Adjuvant/Salvage IMRT after prostatectomy (AUA/ASTRO) (ACR)

Very few of the above are specific to radiation for prostate cancer. In some cases, there is a paragraph or short chapter. In 2013, the Radiosurgery Society (RSS) began writing guidelines for prostate SBRT, but has so far abandoned the effort. What’s the problem?

The problem is that developing guidelines is a lot of work, and the work is usually unfunded and thankless. The top practitioners in each field are often approached in order to enhance the credibility of the guidelines. These are often the clinicians who are busiest and who have the least to gain – they already know what works and what doesn’t through their own research and experience. They must compile and sift through massive amounts of data to summarize what’s known about the subject. Then they must issue draft guidelines, send them to peers, wade through peer comments, send out second draft guidelines, etc., until consensus is reached, or it becomes clear that no consensus can be reached. The consensus opinion is then peer-reviewed and published. By the time it is published, new information from studies and clinical trials may render some of the conclusions outdated, so revisions must be done continually.

While some patients (and clinicians) may worry that SOCs are too restrictive, well-written ones acknowledge the variance in the data and allow for adjustments depending on patient characteristics. Some doctors, fearful of being sued, may follow them too slavishly, but I think most will simply explain why adjustments must be made and are reasonable. This not only protects the doctor, but the patient as well. A patients deserves to know what adjustments to the SOC are planned for him, and why.

In some cases, the SOC fails to gain a consensus among practitioners. The abovementioned AUA/ASTRO guidelines on adjuvant/salvage radiation after prostatectomy are a case in point. Many doctors believe that following those guidelines would result in overtreatment; consequently, they are increasingly ignoring them. Unfortunately, they are not only delaying radiation, which might be prudent, but seem to be forgoing it entirely. This was discussed in a recent commentary (see this link).

SOCs also protect patients from being experimented on without their consent. Although we may conceptually admire the maverick doctor who thinks out of the box to come up with the next breakthrough, such miraculous treatments seldom occur in practice. At the very least, even the patient who is willing to be the test case of a new treatment, must sign a waiver acknowledging that the treatment is experimental, has unknown and possibly unsafe outcomes, and is outside the SOC.

This puts some clinical trials in a gray area. We have reported on some radiation clinical trials that are so far outside the SOC, that they are ethically questionable.  SOC continually evolves along with medical evidence from new clinical trials, so the two work hand-in-hand. Let’s look at a few that involve SBRT. Unfortunately, there are no published SOC guidelines for prostate SBRT. The lack of an official SOC has allowed some clinical trials to be implemented that have put patients at risk.

• We looked at the Bauman et al. study that had to be terminated because of higher than expected toxicity. SOC guidelines specific to prostate SBRT that included intra-fractional motion tracking and tighter dose constraints might have spared those patients injury.

• Kim et al. used a dose schedule as high as 50 Gy in 5 fractions, far above what others use for SBRT. As a result, 6 of the 61 patients treated with this extreme dose suffered Grade 3 and Grade 4 rectal toxicity. Four of them had to have a colostomy, 2 suffered rectourethral fistulas, and one had grade 4 bleeding that was treated with cauterization. Toxicity like this has never been reported in SBRT literature before or since. One might understand a study like this if they were trying to find an optimally effective dose, but the stated purpose was only to find the dose-limiting toxicity – they found it.

• As we commented earlier, the City of Hope is conducting a clinical trial of SBRT salvage radiation after prostatectomy (NCT01923506). While SBRT for salvage is potentially a low cost and beneficial therapy worthy of a clinical trial, their dosimetry is far outside of the SOC. They propose to use a dose as high as 45 Gy in 5 fractions to the prostate bed. This is higher than the dose typically delivered to the intact prostate during primary SBRT radiotherapy. Doses for salvage radiotherapy are usually reduced, not increased. They want to find the dose such that up to a third of patients will experience dose-limiting toxicity. A third is a lot of toxicity.

• The Moffitt Center is conducting an SBRT clinical trial  (NCT02572284) that is questionable for several reasons. First, they misinform with the statement, “The standard dose is 10 Gy per day when SBRT is the only treatment to the prostate and no surgery is planned.” That dose far exceeds customary practice, and is quite toxic, as we saw in the Kim et al. study. Fortunately, they will be using far lower doses of 25, 30, or 35 Gy across 5 fractions. Only the 35 Gy dose is used in customary practice for prostate SBRT.  All high-risk patients will also have a prostatectomy 2 weeks or 4 weeks after the radiation. Considering the known safety issues involved in salvage surgery after radiation, even by very experienced surgeons, I am perplexed that they would do this adjuvant surgery at all, let alone that soon. I think there will be horrendous harm at all dose levels, and they will be unable to find an optimal dose level. I also wonder if patients are being informed that either therapy alone might be curative. Furthermore, I hope patients are told that there will be no salvage therapies available to them if this combo treatment fails.

Dose escalation studies are usually done to find the optimal dose. The “dose-response curve” is S-shaped. At the bottom, at very low doses, there is little increase in cancer control. Then on the steep part of the curve, cancer control increases rapidly with increasing dose. Finally the curve flattens again as increasing dose adds little cancer control, but adds significantly to toxicity. The goal is to locate the dose at the top of the steep part, just before it flattens out. How are we to find that optimal dose – the new SOC - without pushing the envelope of SOC so far that patient safety is compromised?

Memorial Sloan Kettering Cancer Center is conducting an SBRT dose escalation study (NCT00911118) that illustrates how this can be done safely and ethically. The first group of 30 patients received 32.5 Gy in 5 fractions. If fewer than 10% suffered dose-limiting toxicity, the next group of 30 patients received 35 Gy. The next group received 37.5 Gy; and the next, 40 Gy. A patient told me that owing to low toxicity rates, they added an additional cohort of 30 patients receiving 42.5 Gy. This is the way to find the SOC for SBRT – in incremental steps with care taken to assure patient safety all along the way.

I hope ASTRO, ACR or the RSS will develop SOCs for prostate SBRT and the other forms of prostate radiation for which SOCs are lacking. They protect both the patient and clinician, and provide the ground above which improvements can be made ethically and safely.

Gay men should never* have a prostatectomy

After over 10 years with gay prostate cancer support groups, I have come to believe that radical prostatectomies (RP) cause special and needless suffering in gay men and should never be used in them. Two great resources for gay men faced with this decision are these:

The Effects of Radical Prostatectomy on Gay and Bisexual Men's Mental Health, Sexual Identity and Relationships: Qualitative Results from the Restore Study

Threat of Sexual Disqualification: The Consequences of Erectile Dysfunction and Other Sexual Changes for Gay and Bisexual Men With Prostate Cancer

Gay men suffer more from prostate cancer

The distress caused by a prostate cancer treatment is worse for gay men than for straight men (Hart, Ussher, Rosser). The excess distress among the "boomer" cohort may be rooted in a lower perception of societal status to begin with (discussed in The Velvet Rage), and the adoption of dominant culture point-of-view of gay men as hypermasculine or effeminate, and hypersexualized. The greatest threat to the identity of gay men with prostate cancer is the loss of erectile function.

"Just cut it out"

"Cancer panic" is a type of anxiety familiar to everyone who has had a cancer diagnosis. It is often followed by generalized depression and grieving over one's mortality. Anxiety and depression are the enemies of understanding. There is very little input that can occur. From the doctor's point of view, a great deal of information is imparted. But from the patient's point of view, all he may hear is "cancer blah blah blah."

For most of us, cancer seems to be an unvaryingly lethal disease. We all have loved ones who have died, sometimes painfully, from various types of cancer. The fact that prostate cancer is uniquely slow growing and we have biomarkers and diagnostic tests that often allow it to be cured is lost on many of us, if not intellectually, at least emotionally.

"Just cut it out" is a very natural first reaction. Often, well-meaning family and friends reinforce that initial reaction.

Results the same or better with radiation or active surveillance

The ProtecT clinical trial randomized men with localized prostate cancer to either active monitoring, radical prostatectomy (RP), or external beam radiation (EBRT). After 10 years there was no difference in oncological outcomes. While ProtecT didn't break down results by risk level (almost everyone was favorable risk), we now know that 55% of low-risk men are able to go without treatment for 20 years so far without grade progression (Klotz). Favorable intermediate-risk men have similar 10-year results with RP or SBRT. Unfavorable intermediate-risk men seem to have superior results with radiation (see this link), and high-risk men have much better results with brachy boost therapy than surgery (Kishan et al. 2018).

There were marked differences, however, in quality-of-life in ProtecT. There was higher risk of lasting incontinence and erectile dysfunction after prostatectomy.

Among men who were previously potent, only 35% maintained potency 2 years after nerve-sparing prostatectomy (Sanda et al, 2008). It was similar to EBRT in men who were 10 years older. Using better radiation techniques (like SBRT) has resulted in 2-year potency preservation of 79% (Chen et al.). Of course, active surveillance results in no incremental potency loss.

Age

Younger men do better with any therapy - RP or RT. When we are younger, our tissues are more resilient. Some have used that as an excuse for younger men to avoid active surveillance. In fact, there is no age at which active surveillance is not preferable in terms of long-term side effects (see this link and Lee et al.).

It has been argued that the risk of a second primary malignancy due to radiation is a major risk factor in younger patients. This recent study found that the "Probability of Second Malignancy was similar between SBRT and radical prostatectomy." It is tremendously difficult to attribute second malignancies to radiation. Hensley et al. has shown that men who have had bladder cancer (removed by cystectomy) are more prone to prostate cancer. The best estimates of risk are less than 1% (see this link and this one). Arguably, younger men have more intact DNA repair mechanisms.

Young, unpartnered and gay men are particularly impacted by "marginalisation, isolation and stigma—relating to men's sense of being “out of sync”; the burden of emotional and embodied vulnerabilities and the assault on identity." (Matheson et al.) A recent Pew study reported that gays are much more likely to be single than straights, especially gays over 45 (AARP). Gay men of all ages do not have the social support system of their straight counterparts.

Aging without expected erectile function is especially a problem for gay men (Ussher et al.)

Erectile Dysfunction

Even among men who are able to regain erections sufficient for vaginal penetration, they are seldom able to regain erections sufficient for anal penetration. At Memorial Sloan Kettering, arguably one of the best institutions at providing quality RP, "only 4% of men who were ≥ 60 years old with functional erections pre-surgery achieved back-to-baseline erectile function." (Nelson et al.) I would guess that drops to near zero for anal penetration.

As mentioned, erectile dysfunction is the single largest emotional and social problem for gay men, who are mostly single at the age when they are treated for prostate cancer. Gay men more than straight men face an identity crisis because their identities have been sexualized. With only 35% maintaining potency after RP, and even fewer left with erections sufficient for anal intercourse, they are effectively excluded from the dating market and face a lifetime of social isolation. Ussher et al. (2017) calls it "sexual disqualification"- exclusion from gay life.

The sudden loss of potency destroys many pre-existing relationships. Partners look for sexual satisfaction elsewhere, and often leave relationships as a result. Depression is a common result. There have been no studies of suicide following RP among gay men, an unmet need.

While orgasm is still achievable without an erection, many men do not find it worth the bother.

Loss of Ejaculate

While women can fake orgasms, men can't. We either ejaculate at orgasm, or we don't have an orgasm. Ejaculation is how men communicate that "it was good for me." Men are disappointed when their partners do not "cum." RP removes all ejaculate except for Cowper's gland secretions. RT reduces ejaculation, but in a recent trial of SBRT patients at Georgetown, only 15% were without ejaculate after 2 years. Anejaculation excludes men from relationships with other gay men. It is more bothersome to gay men (Wassersug et al.)

Ejaculation is how we've signaled orgasm to ourselves since puberty. Getting used to orgasms without ejaculation takes some psychological readjustment, whether gay or straight.

Perceived size loss

Another rarely discussed adverse effect of RP is size loss. Men are very conscious of size and compare themselves to others. Size is seen as a surrogate for masculinity, and many think that sufficient size is necessary for mutual pleasure. Size loss is difficult to measure objectively, but the perception of size loss can be patient-reported (but usually isn't). In a patient-reported study of 1411 men, 55% of men report size loss after RP (Carlsson et al.)That loss had a negative effect on their quality of life. Some patients complain that even sitting down to pee they are unable to point their micropenis into the toilet. Gay men with such size loss universally do not undress in front of others.

Climacturia

Shooting urine at orgasm (climacturia) is another non-regularly reported side effect of RP. Incidence was as high as 44% at 3 months post RP and 36% at 24 months post RP (Mitchell et al.). For many men, gay or straight, it is embarrassing and bothersome. Many give up sex because of it.

Penile sensitivity/dysorgasmia

Because of damage to the pudendal nerve during RP, some men report penile pain (usually temporary) or loss of sensitivity (maybe permanent). Perhaps related is reported pain during orgasm(this seldom occurs). This is often not reported.

Anal Pleasure

I've heard mixed reports about whether receptive anal sex (bottoming) is as pleasurable post-prostatectomy. Some feel that pushing against the prostate and pushing out cum is an important source of pleasure. Others feel that filling the rectum is all that's necessary. Ussher reports that many men who are in relationships who previously enjoyed "topping" switched to bottoming when they could no longer perform. Many were unhappy about switching roles. This has only been qualitatively researched.

Myths

There are two myths that are prevalent about radiation, and they affect decision-making among gays and straights equally. The first myth is that salvage after radiation is nearly impossible. While it is true that surgery after radiation is fraught with peril and should never be done, it is untrue that no salvage is possible. In fact, salvage after RT often has better results both oncologically and in terms of side effects compared to salvage RT after surgery (see this link). More to the point, with 10-year biochemical recurrence-free survival after RT over 95% for favorable risk, and over 80% for the highest risk patients, and with better PSMA PET patient selection, salvage should not be an overriding concern. It is a mistake to think that one can always have salvage. Side effects are always worse than if RT had been given originally.

The other myth is that with radiation, side effects crop up with time. One need only look at the patient-reported outcomes in the 6 years of the ProtecT trial to see it isn't true (see this link). With radiation, acute side effects are highest in the first 6 months and decrease afterward. That is not to say there are no late-term effects, but it is extremely rare for an entirely new side effect to occur later that has never occurred before. Erectile dysfunction naturally increases over time as men age. In a very elegant study, Keyes et al. showed that half of the long-term decline in erectile function among men getting brachytherapy was due to normal aging. ED does occur with radiation, but there is significantly less.

ADT

It is worth mentioning that those with advanced prostate cancer who must use ADT, often complain of their loss of masculinity. When RT is used for high-risk localized prostate cancer, adjuvant ADT is temporary. However, if proper preventive measures aren't taken (e.g., penis pump), there could be permanent size loss.

Lack of Research

The major instruments/questionnaires for evaluating quality-of-life after treatment, EPIC and SHIM, do not ask about most of the above adverse effects of treatments. Indeed, they do not ask men if they have sex with other men. What does not get measured, does not get acted upon. If there are any solutions to the above adverse effects of RP, they are not being studied intensively, if at all.

Most urologists have no idea if their patients are gay or straight. Sometimes they bring their male partner if they have one. But most often they are not out to their doctor because they are fearful that their doctor may have anti-gay attitudes and will somehow provide lesser treatment.

Advice

Slow it down!: For men diagnosed with localized prostate cancer, there is ample time to make a decision. Treatment delays have been studied (see this link), and treatment delays of 3 months, even in high-risk men, do not make a difference in outcomes. Your initial cancer panic will subside with time, and you will be able to make a more reasonable decision. Doctors should never accept a treatment decision within one month of diagnosis, and probably not even within 3 months, especially with the approval of PSMA PET scans for unfavorable risk patients. If your diagnosis is low-risk, join an active surveillance program. Even some favorable intermediate-risk men with small amounts of pattern 4 can buy time on active surveillance.

Tell your doctor that you're gay. Very few are bigots in major cities. If you live in Buttfuck, KY you should not have a prostatectomy there anyway. Remember that your doctor is of limited use in helping you grapple with the emotions necessary or even provide much of the information necessary to make this decision, and won't be there to pick up the pieces afterwards. A recent NY Times article described a novel program at Nothwestern University in Chicago to help gay men after prostate cancer treatment.

Join a support group. One can read all about this stuff, but things like loss of ejaculate and size loss won't be real to you unless you experience them. The next best thing is talking to a live person who has experienced them. (This is called the "availability heuristic," by the way.) It is one thing to understand intellectually, but quite another to feel it. Seeing a grown man cry about his micropenis has more impact than reading that penile shortening occurs.

Go into psychotherapy/ learn mindfulness: We all have baggage about cancer. Learn what kind of baggage you are carrying and whether you are hampered by it. If you can, take a class in mindfulness. With practice, it will help you stay in the present moment instead of ruminating endlessly about low probability future outcomes.

Talk to a Radiation Oncologist: We all started with a urologist. Sometimes, he did your biopsy. Many are trained as surgeons. Some surgeons are "hot dogs" who believe they can cure the common cold. They usually recommend surgery, because it's what they do. (If they don't believe in surgery, they wouldn't be a surgeon.) Get out and find a radiation oncologist before you make a treatment decision.

Don't ask the doctor what he would do if you were his father! This is probably the question patients most often ask, but shouldn't. You are asking one specialist to also be a specialist in another therapy. A doctor well-trained in shared decision-making will deflect your question: "what more can I tell you, so that you feel able to make this decision for yourself?" Even if the doctor is gay, he is not you - he has his own set of concerns and biases.

*OK, there are exceptions, but very few.

(1) There are very few men who are super-sensitive to radiation cannot have it. 

(2) Some men have BPH to such a degree that radiation will inflame the prostate and cause the urethra to close up. Most such men can have a TURP procedure before radiation. TURPs usually cause reverse ejaculation (semen goes up into the bladder). But it is also necessary to wait several months before radiation begins; otherwise, there is risk of incontinence. 

(3) Men with a history of intractable relapsing prostatitis. 

There may be other reasons - I encourage patients to tell me about any.

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 an adjuvant or salvage radiation doctor
• Questions to ask yourself
• I didn't add focal ablation because we now have definitive proof that it doesn't work (see this link)

What to expect after prostate radiation (acute side effects)

Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. The duration and intensity vary greatly between men.

If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms.

Urinary

Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately.

A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out.

Rectal

There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard.

If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor.

Sexual

Semen will usually dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm.

You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it.

Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm.

If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.


For a list of all side effects, long-term and acute, see:
Adverse Effects of Primary IMRT

What to expect immediately after prostate radiation

Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. These are called "acute" side effects. The duration and intensity vary greatly between men.

If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms.

Urinary

Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately.

A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out.

Rectal

There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard.

If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor.

Sexual

Semen will usually dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm.

You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it.

Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm.

If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.

Salvage SBRT after Prostatectomy

UCLA has announced a new clinical trial using SBRT for treating recurrent prostate cancer after failure of initial prostatectomy. This is the third such trial in the LA area, adding to the ones at USC and  City of Hope (no longer recruiting). The advantages to the patient are completing salvage radiation in just 5 treatments, and at a lower cost. But there are many issues that the lead investigators, Amar Kishan and Chris King, explored in a very detailed document that they kindly allowed me to see. The hope is that the increased biologically effective dose possible with extreme fractionation will increase cure rates without adding undue toxicity.

Eligibility

Patients are eligible if they had adverse pathological findings (i.e., Stage T3/4, positive margins, Gleason score 8-10, tertiary pattern 5), or PSA rising over 0.03 ng/ml. They are excluding anyone who exhibits distant metastases on a bone scan (M1) or positive pelvic lymph nodes discovered by dissection (pN1). They are allowing patients with non-surgical evidence of pelvic lymph node invasion (i.e., suspected because of a CT or a PET/CT).

Radiation Dose / adjuvant ADT

The treatment plan is:

• All patients will receive 34 Gy in 5 fractions to the prostate bed. 
• There may be a simultaneous boost dose of 40 Gy to any detected tumors in the prostate bed.  
• Optionally, they will also receive 25 Gy in 5 fractions to the pelvic lymph nodes. 
• Optionally, they will also receive 6 months of ADT beginning 2 months before radiation begins. 

While whole pelvic radiation and adjuvant ADT improve salvage radiation outcomes on the whole (see this link), they may not be necessary in all cases. A recent analysis suggested that adjuvant ADT only benefits those with post-prostatectomy PSA ≥ 0.4 ng/ml, Gleason score 8-10, Stage T3b/4, and those with high Decipher scores (> 1 in 3 probability of distant metastases in 10 years).

The prostate bed dose is biologically equivalent to 85 Gy using conventional fractionation (about 1.8 Gy per fraction). It is much higher than the typical salvage radiation dose of 67 Gy - 72 Gy in 37-40 fractions. It also exceeds by about 9% the dose used in a trial of moderate hypofractionation (discussed here). At the last ASTRO meeting, Dr. King presented the rationale for increasing the salvage radiation dose (see this link).  At the time, he proposed a randomized clinical trial using a dose of 76 Gy with conventional fractionation. The new protocol far exceeds that dose on the basis of biologically effectiveness, but they will compare outcomes to historical controls. The goal is to achieve a 5-year biochemical recurrence-free survival rate of 72%, compared to the historical level of 56%.

Toxicity

Salvage SBRT isn't just another form of salvage IMRT; IMRT is more forgiving. With IMRT, if there is a small misalignment, it is not a big deal -- the dose per fraction is small enough that a target miss caused by organ motion will not materially affect outcomes and will average out over time.

• Only devices that continuously track prostate bed motion during, and not just at the start of, each treatment, and that operate with extremely fast treatment times may be able to avoid all of the geographic misses. Image guidance is complicated when there is nothing for fiducials to grab onto.  This becomes an important consideration only at higher dose rates.
• Although the biologically effective dose (BED) for oncological control is higher with the SBRT protocol, the BED to healthy tissues (which causes toxicity) is lower. 
• For the tissues that may cause acute toxicity, the BED is a third lower compared to a 72 Gy conventionally-fractionated treatment. In a recent trial of 70 Gy salvage radiation, acute grade 2 and 3 urinary toxicity was 18%; acute grade 2 and 3 rectal toxicity was 18% as well.
• For the tissues that may cause late-term toxicity, the BED is about the same. Serious late-term toxicity was a rare event when 76 Gy was used for salvage in one study, but late term grade 2 toxicity was about 20% urinary toxicity and 8% for rectal toxicity. It is unknown whether the late-responding tissues of the bowels and urinary tract will suffer increased damage from the higher dose rates after longer follow-up.

SBRT as a primary treatment is different from SBRT as a salvage treatment.  There are also several considerations that arise more in the salvage radiation therapy setting than in the primary therapy setting:

• The bladder and rectum are no longer shielded by an intact prostate, so they are potentially exposed to greater spillover radiation. The prostate bed without the prostate is highly deformable, and rectal distension can change its shape markedly within seconds during the treatment. This increases the amount of toxic radiation absorbed by healthy tissues.
• The scar tissue of the anastomosis may become inflamed, leading to a higher risk of urinary retention or tissue destruction.
• The bladder neck, which may be spared during primary radiation and surgery, receives a full dose during salvage radiation therapy, increasing the probability of bladder neck contracture, urethral strictures, pain and incontinence. These problems may be amplified at higher doses per treatment.
• Erectile function is probably already impaired from the surgery. Neurovascular bundles, if spared by surgery, are far more exposed during salvage radiation.

We have had a couple of cautionary cases where SBRT toxicity has been extraordinarily high. In one, it was because the delivered radiation dose was too high. In the other, there may have been multiple causes.

There has been a study where conventionally fractionated salvage IMRT with a dose as high as 80 Gy has been used with low toxicity. A recent study using moderate hypofractionation for salvage (51 Gy/ 17 fx) also boasted low toxicity levels among treated patients.

They will monitor both physician-reported toxicity and patient-reported toxicity (urinary, rectal, and sexual). If the rate of grade 3 (serious) toxicity is higher than 20%, accrual will be halted and the study subjected to careful review. If the rate is higher than 30%, the study will be terminated.

Dose Constraints

The investigators have put together a set of very tight dose constraints for organs at risk. Organs at risk include the bladder, the front and back of the rectum, the small intestines, the penile bulb and the femoral head. They also included "point dose constraints": the maximum radiation exposure to even a millimeter of the organ at risk. Because of individual anatomy, it may not always be possible to simultaneously meet all dose constraints. In those cases, the physician will decide if the deviation is material, and if it is, he may lower the dose as low as 30 Gy.

Image Guidance

The prostate bed consists largely of loose and highly deformable tissue. Although some radiation oncologists (e.g., at UCSF) use fiducials or transponders for salvage image guidance, most find that they do not stay in place. This has not been a big issue for salvage IMRT because a few "misses" will not contribute materially to toxicity, but it may be a larger issue for salvage SBRT. One way around this is to have the doctor monitor the position of the soft tissue throughout each treatment, and manually realign the beams whenever the position of the tissues deviates from the planning image. The problem is that  manual realignment is time consuming. The patient is lying on  the bench with a full bladder, which may be difficult to hold in. Also, the more time that passes during a treatment, the more opportunity for bowel motion to occur. The lack of intrafractional image guidance remains a concern in this clinical trial that the investigators are well aware of.

A related issue occurs when the pelvic lymph nodes are simultaneously treated. The lymph nodes may move independently of the prostate bed, so it may be impossible to hit both areas simultaneously with pinpoint accuracy. The investigators are using the pelvic bones as landmarks.

Most importantly, all patients must have a full bladder to lift it up and help anchor organs in place. in addition, enemas are required before each treatment, and if the bowels are at all distended, treatment will be discontinued.

Risks

As with any clinical trial, patients take a risk in trying a new treatment. There is also a learning curve that doctors go through in trying out a new therapy.  I, myself, chose to participate in a clinical trial of primary SBRT when there were only 3 years of reported data. I judged the potential benefits worth the risk for me. It was also important to me that the treating radiation oncologist (Dr.King) had been using SBRT for prostate cancer longer than anyone else. Every patient should be well aware of the risks before agreeing to participate in a clinical trial. Patients who are looking for a shorter duration treatment with less toxicity risk may wish to be treated at the University of Wisconsin or in a clinical trial at the University of Virginia (discussed here).

The Constitution of Medical Knowledge

Patients are often confused by seemingly conflicting findings of studies, or equally good doctors recommending different treatment plans. How are we to decide? Medical science is a process created by a “reality-based community” to help decide such questions. Science isn’t just hypothesis-testing with empirical observation, although that is a big part of it. It is also the consensus of a community of experts. In 1660, scientists led by Isaac Newton formed The Royal Society as the first institution designed to collect, encourage, and evaluate scientific knowledge. They published the first scientific journal in 1665 (which is still in publication). Were they ever wrong? Often! For example, for 250 years everyone wrongly believed Newton’s theory that gravity was a fundamental force of nature. And that is the point – knowledge is fallible and not subject to the personal authority of any one person. But over time, the arc of the universe of scientific knowledge bends towards truth.

There have been many improvements to the system of medical science since the Scientific Revolution. The first peer-reviewed journal was published in 1731. But peer-review as we now know it didn’t begin until the 1970s. The first randomized clinical trial occurred in 1747 (citrus for scurvy), but the rules for running double-blinded randomized clinical trials, and progressive Phase 1-3 trials weren’t systematized until Austin Bradford Hill and Harry Gold in the post-WWII era. Statistics entered medicine in the 1970s. Systematic reviews began in the late 1970s. Evidence-based medicine, as we know it today, was taught in medical schools since the 1980s.

Jonathan Rauch in “The Constitution of Knowledge: A Defense of Truth” describes knowledge as a funnel. At the top are all the guesses, the hypotheses, that drive scientific investigation. This would include (in order of increasing reliability):

5. Much of what is posted on any patient health forum every day: anecdotal “evidence” from patients; YouTube videos posted by Snuffy Myers, Mark Scholz, etc.; lab studies (mouse or test-tube); 

4. observational/epidemiological studies of patients; 

3. retrospective case-controlled studies, and systematic reviews/meta-analyses of them; 

2. cohort studies (people followed from before disease occurrence; e.g., Health Professionals Follow-Up Study, Mendelian Randomization Study). 

All of them are just hypothesis-generating. Most hypotheses are, and should be, wrong. Science depends on evaluating lots of hypotheses. There is no shame in guessing wrong; the only problems are when guessing stops and when one confuses a guess for a fact.

1. Large, well-done, and confirmed randomized clinical trials are at the bottom of the funnel; they are not just hypothesis-generating, they constitute truth in medical science. These categories were universally agreed upon after looking at which kinds of studies are likely to have conflicting results, and which almost never have conflicting results. All scientists believe in these categories; “pseudoscience” occurs when people claim to be doing science but ignore these categories. 

Here’s a fuller description:

Levels of Evidence 

 GRADE 

Pseudoscience

Some institutions regularly GRADE prostate cancer research (NCCN, AUA, ASTRO, ASCO, SUO, EAU, CUA, PCF, and others). The institutional opinions (and not anyone’s personal opinion) are the standard-of-care. Until disproved, they constitute current medical truth. While even the best research doesn’t predict for the individual, one is foolish to ignore our best estimate.

There is no science without consensus by experts - science is a social construct. One can argue that there are and always have been objective truths, but we can only know what is in some way perceivable by humans. Did the Earth always revolve around the sun? Of course. But it did not enter the realm of science until Copernicus hypothesized it (1543), and Galileo (1609), Tycho Brahe (1573), Johannes Kepler (1609), and Isaac Newton (1687) proved it and showed how. That’s when astronomy became a science. There is no science without hypothesis-testing and empirical observers. 

 Loss of Respect for Expertise 

How do we know what is true? None of us has the time or the inclination to test everything for ourselves. We rely on trusted experts to tell us. Few doubt that the heart pumps blood to our lungs and other tissues, although few have seen our hearts do that. We know that William Harvey discovered that fact in 1628, and it is now universally accepted as true and foundational to all cardiology. Even fewer know how the cardiac tissues cause the heart to beat, how arrhythmias are diagnosed, or how plaques can cause heart attacks. We rely on cardiologists to know all that, and within cardiology are sub-specialties (e.g., heart transplant specialists, sports cardiology, electrophysiology, etc.). There are dozens of medical specialties, each with several sub-specialties. There are even specialists in cutting across categories, and assuring that the latest innovations become available to patients; this is called “translational medicine.” In this era of specialization, few know much outside of their specialty, and as patients, we must, at some point, rely on the experts for our knowledge about disease, diagnosis, and treatment. 

Medical science became probabilistic in the 20th Century. All medical institutions agreed that statistics are the only way to reject hypotheses, judge superiority or inferiority, infer causality, and to analyze and reduce errors. Statistics are difficult to understand and are non-intuitive, even for many doctors. As sophisticated statistical techniques were adopted by the medical institutions and their publications, lay people, who did not have their arcane knowledge, were increasingly left out of the truth community. 

The Dunning-Kruger Effect is a cognitive bias on the part of incompetent people overestimating how much they know. In medicine, a little knowledge is a dangerous thing. When I started writing my novel, Thaw’s Hammer, about a killer virus, I thought I knew enough about the subject to write a credible novel. Four years later, I knew how much I didn’t know. I grew to admire the experts who had to understand the biochemistry of the replicative apparatus, the interactions with host cells, and the immune system. Viruses are the most numerous and diverse forms of life on Earth. Anyone who thinks they fully understand them is wrong. The experts differ from lay people in knowing they don’t completely understand them. Still, an expert understands a lot more than any lay person who thinks he knows more. I know enough to reject any advice from a Jenny McCarthy or a Joe Rogan in favor of advice from the CDC. 

Overconfidence in subjective assessments, when contrary to scientific consensus, is also influenced by alignment with political and religious social groups. The Dunning-Kruger Effect is particularly strong on the issues of vaccination (particularly Covid-19 vaccination), genetically modified foods, and homeopathic medicines (see this link).

Fundamentalism in Medicine

Knowledge is progressive and cumulative. Newton said, “If I have seen farther, it is because I have stood on the shoulders of giants.” Opposing this kind of humility, are people who think, based on a few facts or “alternate facts,” that they have arrived at the truth hidden from the rest of us. What they are really doing is inhabiting what Rauch calls an “epistemic (knowledge) bubble.” They are only allowing into their knowledge bubble those data, and persons, that confirm their biases. They take studies out of context and fail to rigorously analyze studies they agree with while finding reasons to disqualify studies that don’t agree with their preconceived notions. They reject the methods of analysis developed by the institutions they reject. They are usually smart and think that they are fully capable of judging the data for themselves. This takes a certain kind of narcissism – as if the whole world is full of “sheeple” and only they know the real truth. They are also lazy – it would be too much work to learn and evaluate the whole body of knowledge. 

Fundamentalism has been around in religion at least since the Protestant Reformation. But it emerges in all other areas of human knowledge – politics (as populism), law (as originalism/ anti-stare decisis), and folk/Internet medicine. It is usually short-lived: the fundamentalists of one generation eventually give way to the acceptance of an orthodoxy and hermeneutics for interpretation of texts. Fundamentalism substitutes personal authority for institutional authority. Personal knowledge is acquired rapidly and doesn’t require input from others. Because personal ego is at stake, it excludes all information that doesn’t confirm. Institutional knowledge, on the other hand, builds on a foundation of knowledge of the “truth community,” and includes conflicting data. The conflicting data create new hypotheses and the opportunity for knowledge to expand. If enough conflicting data accumulate, they may cause what Thomas Kuhn called a “paradigm shift.” 

Google is a wonderful thing. Knowledge is potentially at our fingertips, but information out of context can mislead. Instead of knowledge, we can be left with information that only confirms what we think we know. Social media ideally expose us to all sides of any issue. But if we are not open to all sides, social media can only reinforce the knowledge bubble we have built around our pre-determined beliefs. Without challenges to what we think we know, there is no progress. 

Distrust of Institutions 

There has been growing distrust of institutions among lay people, sometimes with good reasons. There were abuses like “p-hacking” that fostered distrust. Until recently, publications did not require authors to be transparent about potential conflicts of interest. Often, negative findings were not published (the US government now requires all registered clinical trials to publish their findings). Budget cutbacks at the NIH decreased funding for medicines and technologies that did not have profit potential. Mistakes and abuses were publicized in the media and over the Internet. Institutions are valuable not because they don’t make mistakes, but because they correct mistakes and abuses. Retractions and corrections are published. Researchers who lie are found out and excluded from future publication. 

The other threat to truth came from an unlikely source – conspiracy theorists. Before the Internet, they were just isolated “nut jobs.” But social media provided the means for them to find others with enough common beliefs to form a “non-truth” community. On the patient forum, HealthUnlocked, I’ve seen several who point to a supposed Big Pharma/FDA conspiracy. Although they are still a minority, they can have outsize influence by dominating conversations, mixing truth and lies, purveying lies so outrageous that some believe there must be some truth to them, and by blinding the conversation with so much bullshit that reasonable people despair of ever discerning the truth. On Facebook, Twitter and YouTube, bad actors can stage a concerted campaign to “like” and “share” content they want to use as propaganda. They can “troll” serious posts to render the conversation harder to follow. 

Because institutional knowledge was not readily comprehensible to laymen, and because distrust mounted as abuses were well-publicized, the Internet (Dr. Google) became a substitute for expertise. Laymen believed they understood the subjects as well as experts and their institutions, and they were able to find others on social media willing to tell them so. When biases are confirmed by media personalities they become particularly pernicious. We always believe relatable people we know and like (from TV, videos, and podcasts) versus strangers who author incomprehensible studies full of numbers and jargon we don’t understand. This cognitive error is called “the availability heuristic” – it’s why you may believe the claims of someone you know on an Internet forum over high-level statistical evidence. The danger of substituting personal knowledge for institutional knowledge in medicine became apparent with the anti-vaxxer movement. It had always been a fringe group, but in the US, a third of the population did not get vaccinated against Covid-19.

What can be done?

What can be done to restore faith in institutional truth? Rauch sees hope in the measures Facebook took after it came to light that bad actors from Russia manipulated Facebook’s algorithms to change what was seen by Facebook members. Facebook changed its algorithms and created software to eliminate bots. They also labeled and demoted content of dubious veracity. They established an independent oversight board with transparent rules. It reports to and is financed by independent trustees, who can remove its members if they act in bad faith. The board’s decisions are binding on Facebook and anyone who uses Facebook. Its decisions are published. It acts much like an independent court. The problem for a patient health forum like HealthUnlocked is that unless the oversight body is a panel of doctors, they cannot privilege the content of one post over another without risking lawsuits.

The most any patient forum can do is establish rules for civil discourse. I would suggest the following rules and guidelines for anyone posting in a patient forum:

(1) No ad hominem remarks. Ad hominems are remarks that insult the person. “You’re wrong about that and here’s why…” is entirely appropriate. “Jane, you ignorant slut!” is entirely inappropriate. Responses must speak to content, not the supposed intentions of the poster. If you don’t have anything good to say about a person, say nothing. This should eliminate trolling. Trolls thrive on attention and virtue-signaling, so don’t feed the trolls by responding in kind. Alert a moderator immediately. If you feel you have to make personal remarks, do it in private mail.

(2) Members cannot post dangerous or illegal content (e.g., a recipe for a known toxic substance or instructions on how to obtain it). They may post unproven or experimental therapies, and especially their own experience with them. Members are encouraged to identify experimental therapies as experimental. Hypotheses are entirely appropriate and encouraged.

(3) Avoid strawman arguments. Strawman arguments are ones that replace what the poster is actually saying with a false one which is then refuted. If you are starting a reply with the words “"So what you're saying is ... ?" or “Then you must also believe that…” you are probably setting up a strawman. The opposite is a steelman argument, where you restate what the poster said in the strongest form. It shows you are listening and want to resolve the issue.

(4) Avoid sarcasm. Sarcasm doesn’t work on the Internet. It usually only works if one can see your facial expressions and hear it in your voice. There are no sarcasm emojis, and the original poster will probably believe you meant it seriously. Making fun of a person is just a form of ad hominem. Humor is fine, but not as a rhetorical technique.

(5) Be aware that consensus is rare. Patients may get a lot of conflicting advice or anecdotes, and that’s okay. Discuss with a doctor you trust.

(6) Don’t take it personally if someone disagrees with you. Consider the issue as dispassionately as you can. It’s not necessary to reach agreement, just to flesh out the issue from all sides.

(7) Caveat emptor! No one on a patient forum is a doctor, and no one’s advice or personal experience should be taken as definitive. Anecdotes are not evidence. Check everything with your doctor. It is entirely appropriate to ask for source material for advice that goes beyond the standard-of-care, and to discuss those sources with your doctor. But remember that doctors may have little patience for sources that do not come from peer-reviewed journals or are low-level or low-quality evidence (see above).