Questions to ask a low dose rate (seeds) brachytherapist

Questions for LDR brachytherapists

1.     How many have you performed?

2.     How has your practice of brachytherapy changed over the years?

3.     What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?

4.     What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?

5.     What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?

6.     For how long should I refrain from sex with a partner?

7.     For how long should I refrain from close contact with people and pets?

8.     Among men who are previously potent, what percent of your patients return to baseline?

9.     Do you recommend ED meds as protective?

10. What kind of dose with which isotope do you use? Would adjuvant IMRT be given with that? Would hormone therapy be given with that?

11. How do you prevent seed migration?

12. Do you use “intra-operative planning” or some other technique to guide placement and assure adequate seed distribution? Do you use a template with ultrasound guidance, cone-beam CT or some other method?

13. What do you set as dose limits for organs at risk? How do you assure that urinary sphincters, the urethra, and the rectum are spared?

14. Do you do a follow-up CT or MRI after a month?  How often do you find you have to go in again to treat cold spots?

15. How will we monitor PSA? What kind of PSA pattern can I expect?

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

17.  In your practice, what percent of men experience biochemical recurrence?
    • What % of those have been local?
    • If there should be a biochemical (PSA) recurrence, what would the next steps be?
    • Have you ever used SBRT, brachy, or cryo for salvage after a local LDR brachy failure, and was that focal or whole gland?

18.  Are you open to email communications between us?

Questions to ask on a first visit for primary radiation therapy (IGRT/IMRT)

IGRT/IMRT Questions for Doctors

1. How many have you planned? 
2. How has your practice of IMRT changed over the years? 
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? 
4. What proportion of your recurrences were local? (see this link) 
5. What kind of urinary and rectal reactions can I expect? 
• How long can I expect them to last? 
• What medications or interventions do you typically give for that? 
• Should I expect those symptoms to recur later? 
6. What is your rate of serious (Grade 3) adverse events? 
7. Do you see urinary strictures? 
8. Urinary retention requiring catheterization? Fistulas? 
9. Rectal bleeding requiring argon plasma or other interventions? 
10. What is the margin you will treat around the prostate? 
• Is it less on the rectal side? 
11. Will you include the pelvic lymph nodes? 
12. What about the seminal vesicles -proximal or entire? 
13. What are the prescribed doses to the planned target volumes? 
14. If applicable, in light of my unfavorable risk cancer: 
• do you think I need a brachytherapy boost to the prostate? (see this link) 
• do you think I need hormone therapy? For what duration?
15. In light of the 8 major randomized clinical trials on hypofractionation reported in the last year (see this link), do you recommend hypofractionation (fewer treatments) for me? 
16. Does your hospital do SBRT monotherapy for patients like me? Why not? 
17. Do you work off a fused MRI/CT scan for the plan? 
18. What machine do you use? (any brand of VMAT or Tomotherapy are good) 
19. Do you use fiducials or Calypso transponders? 
• Do you do transperineal placement of them? 
20. What system do you use for inter-fractional tracking? (cone beam CT or stereoscopic X-ray, probably) 
21. Is the alignment automated? 
22. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them? 
• What dose will my penile bulb receive? 
23. Do you use angiography to locate and spare the pudendal artery? (see this link) 
24. How long does each treatment take? 
25. How will I be immobilized during each treatment? 
26. Are there any bowel prep or dietary requirements? 
27. Should I avoid taking antioxidant supplements during treatment? 
28. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later? 
29. Have any men retained some ability to produce semen? 
30. What is your opinion of taking Viagra preventatively? (see this link) 
31. Do you monitor side effects with the EPIC questionnaire? 
32. In your practice, what percent of men experience acute urinary side effects? 
33. In your practice, what percent of men experience acute rectal side effects? 
34. In your practice, what percent of men experience late term urinary side effects? 
35. In your practice, what percent of men experience late term rectal side effects? 
36. What kind of PSA pattern should I expect following treatment? 
37. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
38. If there should be a biochemical (PSA) recurrence, what would the next steps be? (they have to prove it’s local but not distant) 
39. Have you ever used SBRT, brachy, or cryo for salvage after a local IMRT failure, and was that focal or whole gland? 
40. Are you open to email communications between us?

Questions to ask (and not ask) on a first urologist visit after a biopsy

1. Am I a good candidate for surgery? What about anatomic abnormalities, previous hernia, effects of anesthesia, cardiovascular disease, diabetes or other comorbidities?


2. I would like to get a second opinion on my biopsy slides from Epstein's lab at Johns Hopkins. (Here's the link.)


3. What is my highest Gleason score? How many cores were positive? What was the highest percent of cancer in any core?


4. What is my stage, and risk level? (You should  know your PSA – if you don’t, ask). How big is my prostate, and what is my prostate density?


• If stage is T3 or T4: How can surgery be a good option if only the prostate capsule is taken out, leaving the rest behind? Aren’t the side effects of adjuvant radiation worse than if I had radiation at the start? (he may not know this.)


5. Am I a candidate for active surveillance (why, why not), and if so, what are your Active Surveillance criteria and protocol? Why those and not something more or less stringent? Should I get a genetic test before deciding? Will that be covered by insurance?


6. How many of the surgery technique you practice (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)


7. Are you going to be doing all of the really important parts of my procedure yourself? (You need to be particularly careful about this at major training institutions where residents may be doing some parts of the surgery, or even the whole operation, while “your” surgeon is overseeing it.)


8. In the last year, what was your positive surgical margin rate? (Should be less than 10% among men with stage pT2)


9. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)


10. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?


11. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia? Peyronie’s? orgasmic pain or dysfunction?


12. What kind of anastomosis technique do you use? (total - not just anterior)


13. Will the bladder neck be spared? How will you maximize the urethral sparing?


14. If you have positive biopsy cores near the apex: How will you ensure that all cancerous tissue is removed there?


15. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?


16. What measures will you take to assure the integrity of the neurovascular bundles?


17. What kind of penile rehab do you suggest?


18. What kind of imaging (Bone scan, CT or MRI) is necessary for men at my risk level?


19. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?


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


21. How will I be monitored for recurrence? Will I get an ultrasensitive PSA test? How will you decide the point at which you would recommend I see a radiation oncologist? Do you use the Decipher test?

Questions not to ask:

1. Is my age a factor in whether active surveillance is right for me? (only you can decide whether you are willing to live more years with the side effects of treatment, or whether you prefer to be treated while younger when side effects are apt to be less - see this link)


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


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

How anticipating regret and quick decisions can lead to poor decision making

An essay in the New England Journal of Medicine describes the cognitive components of regret. They opine that regret always involves self-recrimination and not just disappointment over poorer than expected outcomes.

They breakdown treatment regret into different causes:

• "Process Regret" occurs when patients do not consider information about all available choices before making a decision.
• "Role Regret" arises when a patient gives in to pressure from others to change his decision.
• Active decisions can lead to more regret than passive decisions when the outcome turns out poorly.
• "Omission Bias" is the tendency to avoid active decisions, even when in our best interest.
• "Commission bias" may occur when the patient is distraught and believes that immediate decisive action is needed.
• Regret is lower when things are going poorly anyway; higher when there is a downturn of fortunes.

But there is another kind of regret that is equally counterproductive. In fact, it can lead to our making poor treatment decisions. "Anticipated regret," the fear of future self-recrimination, can cripple the patient's decision process, and ironically lead to "treatment regret" farther down the road. They offer the following advice to physicians, but I think that we as peers should heed it as well:

"We should recognize that anticipated regret can leave a patient mired in decisional conflict, unable to choose. For these patients, it is vital to bring anticipated regret to the surface by openly discussing their fears and helping them gain a clear perspective on the risks and benefits of their options in order to move forward. To mitigate the possibility of future experienced regret, we as doctors can try to reduce the emotional temperature and, when feasible, avoid having patients make their decisions while in a hot state. Except in the most urgent circumstances, physicians can set in motion a deliberate process, exploring all treatment options to avert process regret. When patients are heavily influenced by others in making a decision, we can also be alert to the possibility of role regret.

Here's their essay.

My personal belief is that regret - either of the past or anticipated - is a destructive emotion that causes distress. The best way I know to avoid it is by practicing Mindfulness to keep us in the present moment as much as possible and less in an a past that we can no longer change or a future that we cannot reliably anticipate.

I have also come to believe that no doctor ought to accept as final any prostate cancer primary treatment decision made by a low, intermediate or high risk patient within a month of receiving his diagnosis, and preferably within 3 months. The emotional temperature has too strong an effect on decision making, and time is our friend in this regard. Similarly, doctors should insist that second opinions have been acquired.

A new study by Hirasawa et al. confirms others that demonstrate that waiting 6 months or more (median 7.6 months) from biopsy to surgery among patients with localized prostate cancer (low risk to high risk) had no effect on 5 year rates of biochemical recurrence. It also had no effect on whether nerve bundles were spared, pathological upgrading or upstaging, positive margins, or positive lymph node detection. A similar study has demonstrated the same thing when the eventual treatment choice was radiation, comparing  those who waited more than 3 months with those who had treatment within 3 months,. There is no medical reason to rush this primary treatment decision.

Conflicting messages after surgery for high-risk patients from radiation oncologists and urologists

In spite of the data suggesting that brachy boost has better outcomes for high risk patients, it is being utilized less often and surgery is being utilized more often. After surgery, the high-risk patient is monitored by his urologist (Uro). If the urologist fears a recurrence, he may (1) refer his patient to a radiation oncologist (RO) for adjuvant or salvage radiation therapy (A/SRT), (2) refer his patient to a medical oncologist if he believes the recurrence is metastatic and incurable, or (3) he may continue to monitor the patient. The rate of utilization of A/SRT has been dwindling in spite of three major randomized clinical trials that proved that ART has better outcomes than waiting. If the patient does get to see a radiation oncologist, he may be advised to be treated soon, in conflict with the urologist advising him to wait. This puts the patient in a difficult situation.

Kishan et al. report the results of a survey among 846 ROs and 407 Uros. The researchers sought their opinions about under which conditions they would offer a high-risk post-prostatectomy patient A/SRT. For the purposes of their survey, they defined "adjuvant RT" as radiation given before PSA has become detectable, and "salvage RT" as radiation given after PSA has become detectable. "Early salvage RT" means PSA is detectable but lower than 0.2 ng/ml.

The following table shows the percent of ROs and Uros who agreed with each survey question:

	RO	Uro
ART underutilized	75%	38%
ART overutilized	4%	19%
SRT underutilized	65%	43%
SRT overutilized	1%	5%
SRT when first PSA is detectable	93%	86%
ART when first PSA is undetectable	43%	16%
Early SRT when first PSA is undetectable	42%	43%
SRT when first PSA is undetectable	16%	41%
Recommend SRT if PSA is:
Detectable	15%	7%
2+ consecutive rises	30%	20%
>0.03-0.1	8%	8%
>0.1-0.2	13%	11%
>0.2-0.4	29%	35%
>0.4	5%	19%
Recommend ART if pathology report is adverse:
Positive margin	80%	47%
Extraprostatic Extension (pT3a)	60%	32%
Seminal Vesicle Invasion(pT3b)	68%	47%
Local organ spread (pT4)	66%	46%
Pelvic lymph node (pN1)	59%	29%
Gleason score 8-10	20%	20%
Prefer SRT	12%	25%
Recommend adjuvant ADT with ART if:
Positive margin	14%	12%
Extraprostatic Extension (pT3a)	15%	11%
Seminal Vesicle Invasion(pT3b)	29%	25%
Local organ spread (pT4)	36%	37%
Pelvic lymph node (pN1)	65%	46%
Gleason score 8-10	46%	28%
No ADT	22%	31%
Recommend whole pelvic A/SRT if:
Positive margin	6%	9%
EPE	12%	9%
SVI	25%	22%
pT4	30%	30%
pN1	82%	64%
GS 8-10	36%	24%
No role	12%	24%
Other	13%	3%

In contrast to Uros, ROs are more likely to believe that both ART and SRT are underutilized. Uros believe that are used about right. ROs often see patients too late if they see them at all.

When the first PSA is detectable, both kinds of doctors would recommend SRT. When the first PSA is undetectable, 43% of ROs would recommend ART nonetheless, while only 16% of Uros would recommend ART.

Most of the ROs would treat when they see 2 consecutive rises in PSA, or if the PSA was detectable and under 0.2. Most (54%) Uros would wait until PSA was over 0.2.

Over half the ROs would recommend ART to high risk patients demonstrating any of several adverse pathological features: positive margins, stage T3/4, or positive pelvic lymph nodes. The majority of Uros would not recommend ART to high risk patients with those adverse pathologies.

The majority (65%) of ROs would include adjuvant ADT if there were positive lymph nodes. Uros were less likely to recommend adjuvant ADT based on lymph node involvement and Gleason score.

While most of both groups would have added whole pelvic radiation for patients with positive lymph nodes, 82% of ROs would, but only 64% of Uros.

ROs, knowing that a locally advanced cancer can suddenly become metastatic, and therefore incurable, would like to give A/SRT as soon as possible. Uros, who treat patients for the combined effect of surgery and radiation on urinary and sexual function, would like to wait as long as possible. The patient is caught in the middle of this difficult decision. Some have recommended beginning neoadjuvant ADT at the lowest detectable PSA and extending that time for as long as needed  to give urinary tissues maximum time to heal. Whatever the high-risk patient may eventually decide is in his best interest, he should meet with an RO immediately after surgery to hear both sides of the issue. Uros are blocking access to information that the patient needs.