So your sitemaster was able to spend a while this morning reading through the full 56 pages of the new AUA/ASTRO/SUO guidelines on the treatment of localized prostate cancer.
As was noted when the new guidelines were first mentioned a few days ago, these guidelines are extremely detailed and do need to be read with care. Physicians who specialize in treatments like HIFU and various forms of focal therapy will not be happy with them because the guidelines state (accurately in our opinion) that the long-term value of these forms of treatment for localized prostate cancer are still to be proven.
At the other end of the scale, the new guidelines make it very clear that for the vast majority of men with low-risk and very low-risk prostate cancer, the standard of care is now active surveillance (or watchful waiting for man with a life expectancy of ≤ 5 years). This further, formal endorsement of active surveillance places the onus squarely on all urologists to ensure that they make it very clear to all such patients that the most effective and safe form of initial management for low-risk, localized prostate cancer is a rigorous and structured form of monitoring — not surgery, not radiation, and not any other form of immediate treatment either.
Poeple are going to quibble about some of the statements in the document. The proton therapy advocates, for example, are not going to be happy about guidance statement no. 48:
Clinicians should inform localized prostate cancer patients who are considering proton beam therapy that it offers no clinical advantage over other forms of definitive treatment.
However, The “New” Prostate Cancer InfoLink takes the position that this new set of guidance is a vast improvement over its predecessors, from many points of view. WE applaud the authors (and most particularly the patient advocate among the authors) for the inclusion of guideline no. 68, which reads as follows:
Clinicians should support localized prostate cancer patients who have survivorship or outcomes concerns by facilitating symptom management and encouraging engagement with professional or community-based resources.
However, we will say that we believe more needs to be done in this last area. Managing prostate cancer well is important. However, managing the ability of men with prostate cancer to be able to live well with their condition is also very important, and we still have a ways to go if we are to achieve that priority.
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THE "NEW" PROSTATE CANCER INFOLINK 
On the whole, it was fair and balanced. I think it does a great job of dispelling many of the half-truths and myths that patients hear. A few reactions I had:
• I was particularly impressed by the first section on shared decision-making, and the section on active surveillance. (BTW -What happened to the links for statements 6-27?)
I would like to have seen a statement that active surveillance is appropriate for low-risk men regardless of age.
• Statement 40 should have mentioned other morbidities associated with PLND: thromboembolisms and permanent lymphedema.
There was no mention of treatment of men newly diagnosed with N1M0 from STAMPEDE and other data analyses.
• Statements 23 and 41 should have included strong guidance that cancer control was significantly increased by the addition of a brachy boost to EBRT in unfavorable-risk patients. This has been proved in a large RCT for LDR brachy boost (ASCENDE-RT), and three RCTs for HDR brachy boost. There is now Level 2 evidence that cancer control is vastly improved in high-risk patients compared to surgery ± salvage radiation.
• Statement 41: They should mention the benefit of allowing urinary and sexual symptoms to improve with early salvage rather than adjuvant radiation, and the possible use of adjuvant ADT to prevent progression while waiting for continence to be restored.
• While there was a lot of space devoted to focal therapies (guidelines 50-60 et al.), there was little (a brief mention in #42) devoted to HDR-BT or SBRT — a glaring omission IMHO.
• For consistency, they should have adopted the NCCN (Zumsteg) definitions for favorable and unfavorable intermediate risk. The unfavorable category should include those with > 50% positive cores even with Gleason score 3 + 4, even though the data are “less robust.”
• Statement 61 (about ED): Once again (as in the PROSTQA study), they hid the important distinctions by not breaking it down by age groups. Among 60- to 69-year-old men, potency preservation 2+ years post-treatment was 27% for RP, 39% for EBRT and 44% for BT. They also ignore that, in some studies they reference, men receiving EBRT were 10 years older than men receiving surgery.
I like that they finally mentioned climacturia and anorgasmia, but they did not mention perceived penile shrinkage or Peyronie’s.
They should have recommended early penile rehab after RP, and prophylactic ED medications with RT.
• Statement 64 (about bother with incontinence and ED) bothers me a lot. The fact is, people are adaptive, and unless symptoms worsen, “bother” scores will naturally lessen over time. The ProtecT trial showed that about 20% had lasting incontinence. They were also wrong to draw an equivalence with the irritative effects after radiation — at 6 years post-treatment, urinary irritation/obstruction EPIC scores were virtually identical and back to baseline for both RP and EBRT. The same holds true for bowel function EPIC scores.
• Statement 66: I’m disappointed that they did not recommend ultrasensitive PSA for monitoring after RP. They should also have recommended referral to a radiation oncologist at the earliest indication of ultrasensitive PSA recurrence.
• There should have been separate statements in the decision-making section about informing patients about the potential for salvage therapies if primary treatment should fail. This is included in the explanation of statement 66, but merits a guideline statement of its own. This should include a discussion that the probabilities of primary treatment failure with RP or RT are similarly small for favorable-risk patients, so salvage should not be a key decision factor for them.
• There should be some mention made of the biggest benefits of RP: the patient gets a pathology report and, if successful, the PSA becomes immediately undetectable.
• Possibly statements about the low risk of secondary cancers from radiation, and the low risk of spreading the cancer with surgical instrumentation.
It’s easy to pick at it, but it was a great step towards a collaborative effort to assure that patients don’t hear different “truths” from different therapists. Tony is to be congratulated for keeping it all so patient-centric.
Addendum — I see there is a statement about the low risk of secondary cancers after radiation in the back-up to statement #4.
I would also like to see a statement in this section that the patient should be informed that he has plenty of time to meet with experts and make an informed choice. Even high-risk patients who waited more than 3 months before getting treatment did no worse than patients waiting less than 3 months. That has been shown whether the choice was ultimately surgery and radiation. In fact, I hope the statement would be worded more strongly — that clinicians should not act on any decision until at least a month has passed. Decisions made in the emotional period of diagnosis may be different from a more considered opinion.
I was surprised by the guidelines, in that they were created by the professional physician organizations (AUA, ASTRO, SUO) as guidelines to practicing physicians/members that seem to admonish clinicians to provide an atmosphere of shared decision making with the patient, and to call out their tendency toward treatment biases:
“Counseling of patients to select a management strategy for localized prostate cancer should incorporate shared decision making … However, men undergoing treatment for prostate cancer are often not presented with a complete description of all treatment options and treatment related side effects; up to a quarter of men are not asked about their treatment preferences.”
and
“studies suggest that practitioners may have biases (conscious and subconscious, financial and non-financial) for and against certain management strategies. Both urologists and radiation oncologists have been observed to recommend whichever therapy they deliver in their practice. Such observations are troubling, since prostate cancer treatment decisions should be concordant with patients’ preferences.”
The guidelines are a wealth of knowledge in a condensed format about all aspects of localized prostate cancer, and should be read by any prostate cancer patient wanting to participate with their doctor in what the guidelines promote: Shared Decision Making.
Allen I’d love to take credit on keeping the document patient centric but the truth be told it was the mindset of the entire panel. While the document is aimed at clinicians, the physicians fully recognized that many patients will pay attention to these publications. They were word-smithing the statements persistently and that’s where I was able to contribute from time to time.
On another note, SBRT and HDR-BT are mentioned in the document but the main trend was IMRT, and BT generalized. Meaning IMRT is photon based radiation and so is SBRT, and BT is HDR or LDR. There was no glaring evidence presented that stated that any one way of IMRT or BT delivery is better than another. So when you see IMRT or BT mentioned it could be in more than one delivery method and SBRT and HDR-BT are inclusive. (See discussion point for #42 I thought it treated SBRT and HDR fairly).
The emphasis on shared decision making was also very evident. And it was not a simple subject to cover. I really had little input on it even though you’d figure that as the patient advocate that would be an area I’d be very vocal. But the panel was on top of it. They were putting things out there that I totally agreed with. My best contribution in this area was #68 and my colleagues totally agreed with me. I thought starting the paper with SDM and ending it with recommending peer group support was the right approach.
Dear Sitemaster.
The last quote is important to me. My relations with the doctors are excellent. Thanks to some of them, I was referred to another hospital in another Swedish county, for hyperbaric oxygen treatment for radiation-induced gystitis of the bladder. I read about it, studied its advantages over other treatments, and discussed this with the doctors at length. They did the rest, mostly to arrange it by a few phone calls and letters. It went well, I enjoyed the treatment. It seems to have been a success. Using me as example, other patients will most likely be allowed to get the treatment, which is first line in, for example, the Netherlands. Without my scientific background and the fine reception of my idea by several doctors, this precedent would not have occurred.
Now, one of these doctors called me last February. Regarding my high-risk, localised case, he told me that he would like to say I was cured, but of course cannot do so with medical accuracy. That cancer, he said, will with high probability never recur, and that probability is decreasing with time. So, after 8 years, that is that. Had I remained in Amsterdam I would most likely be dead by now. I was too old for the private insurers who run the show in that country. I discovered the 65-year limit and dodgey guideline entry about toxicity in time, and split 11 days later, with no idea what would happen. It was an adventure and I had nothing to lose.
Interesting. I was also surprised by the guidelines.
In regards to the therapies IMRT and proton beam, an important factor to take into consideration is the quality of life of the patients post-treatment. I work at the University of Florida Health Proton Therapy Institute and have realized the drastic difference in the overall health and well-being of the proton patients as opposed to the IMRT or chemo patients. Give my blog a read if interested.