The new NCCN patient guidelines — a great improvement over last time

We have now had the chance to look carefully through the new, patient-specific guidelines on prostate cancer issued by the National Comprehensive Cancer Network (NCCN) just before the Holidays. They are not perfect, but they are certainly a vast improvement over the NCCN’s first attempt.

On the good side:

  • It gives a sound introduction to the benefits and risks of individual testing (“screening”) for risk of prostate cancer, making it very clear that testing should be an individualized decision based on factors such as personal risk, ethnicity, and the desires of the patient.
  • It gives a good overview of all of the major management options, and places significant emphasis on the potential value of active surveillance, most particularly for those men with low- and very low-risk disease
  • It includes good, basic information on the side effects and complications of all the various treatment options.
  • It has sections dealing with such important factors as
    • Talking to one’s doctors
    • Seeking second opinions
    • Involving one’s spouse/partner in the decision process
    • Diet and exercise
    • Recognizing that caregivers also need care

On the down side, those who have particular views about specific types of treatment will be disappointed by the fact that:

  • It includes no information about proton beam radiation therapy, stating, “These NCCN Guidelines don’t recommend EBRT with proton beams at this time. Research hasn’t shown proton beams to be the same or better for prostate cancer than photon beams and conventional external beams.”
  • There is no reference to high-intensity focused ultrasound (HIFU).
  • There is no reference to any form of focal therapy (using methods like cryotherapy or HIFU).
  • It doesn’t get into any detail about complementary and alternative forms of management (with supplements and other nutritional factors).
  • There is no discussion of intermittent androgen deprivation therapy (IADT) as a form of therapy for systemic forms of prostate cancer (metastatic and micrometastatic disease), although it is defined.
  • There is no discussion of the relative merits of single-agent ADT as compared to combined ADT or ‘triple” ADT.

The booklet — which is 100 pages long — does contain, however, a thorough glossary of relevant prostate cancer terminology, recommended questions to ask one’s doctors (about testing, about treatment, and about clinical trials), and all of the usual base information about development of prostate cancer, the staging and grading processes, and other core information.

On the whole, although there are some flaws, The “New” Prostate Cancer InfoLink feels that this booklet is a valuable one that can be strongly recommended to any man who is looking for a sound, basic introduction to prostate cancer.

It is well laid out and comes with numerous illustrations and tables. It is relatively simple and easy to read and follow. And of course it comes with the added benefit that it is freely available on line and that copies of the printed booklet can be ordered at no cost from the NCCN too.

16 Responses

  1. It states it does not find any advantage to proton beam therapy; yet there is no basis given to support its conclusions. Help.

  2. Well … As far as I am aware there are no published data that do support the conclusion that PBRT is clinically superior to any other modern form of photon-based therapy. They aren’t saying it is any worse … only that there are no data proving that it is any better. The statement in the document is therefore perfectly reasonable.

  3. The FDA approved proton beam therapy in 1988 and the first PBRT started in California in 1990 so it is inconceivable in the last 21 years that there have been no clinical studies comparing different treatments.

  4. Dear Chuck:

    Your astonishment is understandable, but I can assure you that there has never been a comparative clinical trial of PBRT to any other form of therapy for the treatment of prostate cancer. I have been complaining about this for most of the past 15 years. The radiation oncology community is completely split about the need for such a study. Please understand that PBRT was never originally developed for the treatment of prostate cancer. That came several years after the first proton beam facility was developed. For most of the past 15 years the only PBRT center offering treatment to men with prostate cancer was the one at Loma Linda. Newer PBRT centers are a very recent development.

  5. I don’t understand why Sitemaster is not asked to be a member of these guideline committees. We would have better guidelines if Sitemaster could participate in the process. Alternatively, the committee should ask Sitemaster to comment on the completed guidelines and his comments should be appended to the guidelines, under the heading, as Paul Harvey used to say: “And now, for the rest of the story.”

  6. I must disagree, I think this is a very long but very weak document. Having only read a small amount, these are some of the weaknesses I have already found.

    1. They mention the high likelihood of finding early stage cancer, but do not present balanced information about the high number that get a biopsy or the percentage of men who get over-diagnosed or a range of the likelihood of benefiting.
    2. They say that the reduced deaths might be due to screening but don’t talk about why that may be incorrect, in other words it only presents one side. (p. 12)
    3. They mention that most men without cancer have a PSA less than 4 ng/ml and then use the word “normal” for that group when in fact there is no normal level.
    4. They say that less than 50 out of 100 men have cancer when the PSA is between 4 and 10 but the actual number is much closer to 25 out of 100, so they have misrepresented the risk.
    5. Their justification for recommending a baseline PSA at age 40 is weak and they do not discuss the downside of beginning at that age.
    6. On page 17 the patient document talks about biopsy and says the following:

    “To make sure the best tissue sample is collected, transrectal ultrasound is used” — that is not a very clear explanation of what ultrasound is used for, which is to look for abnormal areas or make sure that the entire gland is being sampled.

    “The needle removes tissue about the length of a dime and the width of a toothpick”. What a terrible illustration. Why not give the measurement in size using inches or millimeters.

    “However, side effects are possible. You may experience hematospermia or hematuria” A well-written document written for patients should NEVER use words they have never heard before without giving an explanation of them. All it does is confuse them.

    I briefly looked at the various treatments. It gives very little information about the odds of benefitting, the odds of getting side effects. It does not talk about proton radiation which is being used way too often given the absence of good studies. It does not mention combination of external radiation and seeds or external radiation and hormones for intermediate or high-risk disease.

    All in all, this needs tremendous improvement!

  7. There are, to my knowledge, also no clinical trials of various forms of photon therapy. Nevertheless, there are many positive reports on the outcomes of proton therapy as well as newer forms of photon therapy.

  8. Dear Gerry:

    It could certainly be better … but did you ever look at the original version? This is way better than that, and for someone who knows nothing (which is the case for most patients) it is “a sound, basic introduction.”

    By the way, hematuria and hematospermia are defined on page 17. (See the list of definitions on the right of that page.)

  9. Unfortunately, “positive reports” of outcomes of any forms of treatment are just that — postive reports. Their value as evidence of merit is limited in the extreme.

    A more valid argument about the lack of comparative information about proton-beam radiation therapy would be that, on the same grounds, we have no comparative information about the value of any modern form of radiation therapy to any modern form of surgery. Indeed, the only competed, randomized, comparative, clinical trials of different types of first-line treatment for localized prostate cancer completed in recent years are of surgery to watchful waiting and of external beam (photon-based) radioation therapy to cryotherapy.

    From that perspective, most of the information on first-line treatment of prostate cancer is of dubious value, especially when one considers that the two trials of surgery vs. watchful waiting showed no survival benefit for patients of 65+ years of age with low-risk disease!

  10. I fully agree. And that leaves a layperson (me) in quite a quandary when trying to evaluate treatment options. One (I) can only read as much as possible and then try to make an “educated” guess.

  11. Boy howdy, do I wish Sigmund Freud were here to offer his analysis:

    (page 50) Sexuality
    “Concerns about sexuality are OFTEN NO SMALL ISSUE for men with prostate cancer. SOME treatments for prostate cancer can diminish sexual interest, response, or both. You may find this VERY difficult if you areN’T in a STABLE relationship or still want to have babies. Partners often have concerns too. Some will struggle with a change in your sexual relationship. Others will ONLY care that you’re taking steps to SAVE YOUR LIFE. Talking about these issues with each other and seeking help as a couple MAY help.”

    If I felt like I’d ever met or read comments by a prostate cancer specialist with a sense of irony, the implied dismissiveness and antipathy toward sexuality as a normal and healthy function of being a human might not be so very crystal clear.

    “Others will ONLY care that you’re taking steps to SAVE YOUR LIFE.”

    I want to know who wrote this sentence! It’s an abomination … and a flat out lie!!! Most men, who are sexually maimed by prostate cancer treatment, were never at risk from dying of prostate cancer in the first place. Oh, oh, those hateful, selfish partners who are willing to risk their man’s life for a trivial romp … It’s a wonder men have survived until they have a chance to save themselves through irreparable damage to their sexual function.

    And what’s this nonsense about a not being in a “stable” relationship? Does the oncology and urology community really believe that sexlessness is an indicator of stability in a relationship? And the point of sex is reproduction??? Did the NCCN look to the Hays Code to write this stuff?

    Though some men experience more or less damage, all conventional treatments diminish men’s sexual capacity. Period. Why the continued lies, soft sells, and obfuscation?

    Maybe it’s not so hard at all to deduce Freud’s analysis: (a) Folks who are uncomfortable with and/or who feel antipathy toward sexuality are drawn toward professions that allow them to diminish others’ capacity, or (b) Those whose work diminishes others’ capacities live with themselves by diminishing the importance of the consequences of their actions, or (c) Both of the above.

    That the NCCN is putting out such dreck in 2011 is pretty disheartening. I fear little serious work will be done to improve prostate cancer treatments in a way that diminishes their impacts on the WHOLE of men’s lives for a very long time. Why fix a problem when you can simply declare it not to be a problem and accuse those who do consider it a problem to be willing to let someone they love DIE??? Geez Louise. How depressing.

  12. The disappointment for me with this document is that is not patient-centered enough. If it were, the document would provide information on all possible treatments for prostate cancer — especially the ones they omitted (targeted focal therapy [TFT], proton beam therapy, complementary medicine, etc.). I am most disappointed that TFT was not mentioned. This procedure is being done at major medical centers across the US. Others are going outside the US if they are choosing HIFU. Why not discuss the option? Although there is some information on patient-centered principles (information and shared decision making), more is needed.

  13. Even the section of the book that the sexuality paragraph is included in “Beyond Usual Treatment” is dismissive of the very typical “side” effects of prostate cancer. The impact of RRP and radiation therapy on erectile dysfunction and penile shrinkage are well established. So is the literature describing various therapies to minimize these effects. Why in the world would anyone suggest that implementation of therapy to mitigate the ravages of standard treatment is “beyond usual” treatment? Does the NCCN consider the recommendation that men do Kegel exercises to be “beyond usual” treatment? Kegel’s aren’t directly treating the prostate cancer…

    How in the world do men trust people to “care” for them when you know already they consider some of life’s most basic intimacies to be trivial and optional? How in the world do partners navigate a system that is willing to give an explicit message to men that their partners may not care enough about them to ONLY want them to “save their lives”?

  14. And section 4.3 Active Surveillance

    The last sentence of this section, that is NOT included, by the way, in the “Treatments for Prostate Cancer” section, though by definition, active surveillance is non-invasive management with intent to intervene should cancer progress, equates AS with WW, which is palliative care. So, this is just a flat out inaccuracy. Surely the NCCN knows the difference! So… are they intentionally lying or willfully ignorant?

  15. Tracy,

    Your comments show over and over again, how little the healthcare profession is patient-centered. They make little effort to understand what the patient’s goals are: whether it be to retain their sexual function or avoid wearing diapers for the rest of their lives. The four principles of patient-centered care are: (1) dignity and respect; (2) information; (3) shared decision-making; (4) collaboration. Think about the encounters you have had with physicians about your [husband’s] prostate cancer. How many of these principles did you experience? We have a long way to go.

  16. A big improvement over the previous version? Certainly.

    Is it perfect? Absolutely not; knowing the sitemaster, he will submit comments to NCCN, if he hasn’t already done so.

    PBRT: Too many responses address that issue. Let’s face it, PBRT was not developed for prostate cancer and at least one proton center in the planning stage has already made statements that it will not use it for prostate cancer. Though there is no proof one way or the other, the actual statement in the new guidelines refers to ” .. to be the same or better …”. Well that is disturbing. There apparently is no proof that it is NOT the same either; so, why discount it? (By the way, NCCN does include one facility that operates a PBRT center.)

    Alternate therapy: Defined, but not discussed in detail.

    Statistics: Data that I have seen indicate that 25% of men with a PSA between 2.5 and 4.0 ng/ml have prostate cancer (whether or not it should be treated is a different matter); stands to reason that percentages for PSA levels between 4 and 10 ng/ml are higher.

    Combination and focal therapies: “Widely” used today and should be discussed.

    AS and WW: Definitely not the same; however, I fail to see why somebody considers AS non-invasive as the usual protocol includes biopsies.

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