Good advocacy, good advice, and the quality of CARE

Your sitemaster has decided that we need to be very clear about something related to the management of (in particular) low-risk and very low-risk, localized prostate cancer — but it applies across the prostate cancer spectrum over time …

The patient always has choices. And in management of low-risk forms of prostate cancer there are now many of these. They include active surveillance, watchful waiting (for older men with limited life expectancies), radical surgery, various types of whole gland external beam radiation therapy, a couple of types of brachytherapy, newer treatments like HIFU (if you can afford to pay for them yourself), and — at least for some patients — a variety of types of focal therapy (again, usually if you can afford to pay for them).

The patient newly diagnosed with any low-risk form of prostate cancer is fully entitled to make whatever choice works best for him and his family.

There is no one “right” type of treatment for most patients a lot of the time today. In every single case, a patient is going to need to make a risk vs. benefit evaluation which works for him (and ideally for his family too). Some men (and some doctors) can see active surveillance as a very beneficial method of avoiding all of the risks of invasive treatment for as long as possible (and maybe for ever) and they can live with the risks because they are comfortable that the worst risks are very rare. Other men (and some doctors too) see active surveillance as rife with the potential risks associated with unpredicted and rapid progression and are much less able to see the benefits. This is the nature of life. Some men (and some doctors) like sky-diving and other men wouldn’t jump out of a plane wearing a parachute unless their God told them they would die if they didn’t.

The good advocate is never going to criticize a patient for how he decides to manage his diagnosis. The job of the good advocate is to help patients appreciate all the reasonable options and ask the right questions of his doctors. Your sitemaster likes to think that he is and has been a “good advocate,” but he freely admits that he has been a strong advocate for active surveillance and watchful waiting (i.e., “expectant management”) for appropriate patients for the best part of 20+ years. However, he is also very conscious that it is not his responsibility to “tell someone” what they should or shouldn’t do. When they make what your sitemaster may personally consider to be a less than wise decision, they are still going to get his support over time.

The other thing that it is incredibly important for a “good advocate” to do, is to make sure that patients realize that who manages their care may be far more important as an initial choice than what sort of treatment they may choose to have. If you have the right person managing your care, that physician will help to direct you to a highly competent expert who can execute the form of treatment that you and your care manager agree to be appropriate — as opposed to just trying to tell you how he or she is going to treat you. Differentiating between “who manages your care” and who executes a specific form of treatment for a patient who has chosen to have that type of treatment after discussion with his “care manager” is often a difficult idea for a newly diagnosed patient to comprehend, but it may be critical to that patient’s long-term outcome over time.

After 25 years as a prostate cancer patient advocate, your sitemaster knows of several physicians who he would be willing to let “manage his care” if he was diagnosed with prostate cancer tomorrow … and he is quite sure that most of those physicians would actually have very little to do with executing any specific type of treatment for him! Your sitemaster would be relying on one of those physicians for diagnosis, monitoring, follow-up over time, and regular discussions about “what has to come next”. If a specific treatment was needed (or advisable), he would be relying on them to refer him to one of the best possible specialists in the execution of that specific form of treatment to discuss and potentially execute that treatment.

Your sitemaster is conscious that he has never actually laid this idea out like this before. He should have done so. He is also very conscious that there are many other long-term patients who have come to a similar realization over time. It may well be that — as “good advocates” — what we need to be doing is making sure that this is something that more patients learn faster, and that more doctors become familiar with as a concept!

14 Responses

  1. Excellent as usual. A good summary of what the ideal world would be if we had informed patients and enlightened physicians. This same statement can apply to those of us with advanced prostate cancer as well. When a new decision point is reached, all the same attributes apply.

    The medical model changes too slowly for the advancing knowledge base for any one disease state. I have learned late in the game that a young, newly trained physician is the most likely to have the newest information.
    The era of general oncologists who see all cancers is also ending. They too, need to subspecialize to have expertise in any individual cancer type.

  2. Excellent discussion!

  3. Very well said! As a spouse who is the primary researcher for my husband who now has a biochemical recurrence after RP 5 years ago, the concept that there are no right treatments for everyone is one I really believe. In the elusive search for a “cure”, some “advocates” downplay the risks to QOL of treatments. Finding a medical professional to manage his care is even more of a challenge since all the specialists focus on their own specialty!

  4. Very good blog. What I have found in some cases is that prostate cancer doctors who manage a patient’s care run semi-annual blood work, and watch PSA but don’t check things like prolactin level, estrogen (particularly for aging men), DHT or sometimes “T” that are important levels to watch that can affect prostate cancer cells. So, patients with knowledge have to tell the doctor what should be checked.

    However, there are prostate cancer doctors, e.g., Snuffy Myers (retiring), Richard Lam, and Mark Scholz, who work to get a patient’s prostate cancer into a durable remission by watching such things and prescribe meds to reduce levels, as needed. Getting to the right prostate cancer specialist can be challenging due to geographic location and knowing who these doctors are.

    Maybe it would be good to list recommended, known prostate cancer specialists and their locations.

  5. Conceptually great. Realistically: a dream in most cases. The patient is new, scared to death, and has already made one big decision — who will do the biopsy. He probably doesn’t even know about second opinions on slides, much less treatment.

    When the urologist says “I will do surgery, or radiation, or AS” the patient will probably nod in agreement. He (again) doesn’t know there are options.

    When I was diagnosed 20 years ago, my urologist offered me radiation, period, based on my age and a coronary history. Seeds were not avaiIable locally and he did not do them! I went off the grid! … and changed urologists!

  6. Excellent.

    For some patients it is helpful to carry out some thought experiments. How would you feel if you made the wrong decision? — that is, you decide to get active treatment, but have complications and have a recurrence — or you decide not to have active treatment and you develop cancer that extends beyond the prostate and is difficult to treat and cure. …

  7. Susan:

    Keep looking! … They don’t ALL focus only on their own specialty. :O)

  8. I’ll address these comments to patients who are newly diagnosed with potentially curable (i.e., M0 or MX) prostate cancer.

    I think we all have to acknowledge the way the process works — the patient is diagnosed by a urologist who often has a bias towards surgery. It’s his first source of information and has an enormous influence. This is as far as most patients get. If I can get to patients before they commit, I can offer alternatives to investigate. If I come across as anti-surgery, I’m not (at least in some situations), but I am pro-choice. And that means getting the patient beyond the “just cut it out” stage, and getting them to understand that, even in high-risk cases, they have time to investigate and to explore their own personal requirements.

    Getting the right therapy and the right doctor for that therapy are equally important. I have many patients say, “Get an MO to be your quarterback — he’s impartial.” First of all, he’s not impartial — no human being is — we all have biases. MOs are specialists in a species of therapy — care and maintenance of incurable cases. As such, I’ve found they tend to give unnecessary tests, want to overtreat, and get in the way of appropriate curative therapies. I have found that too many cooks spoil the soup. MOs are not specialists in any curative therapy, although that will not get in the way of their expressing a strong opinion.

    The best strategy for the patient is to interview specialists in all the therapies that may apply, to hold off on making judgments (very difficult!), but just to absorb and ask questions. (I give them a list.) In my ideal world, no patient would be allowed to make a treatment decision within a month of diagnosis, and patients would wait at least 2 weeks after their last interview before making the active surveillance/curative treatment decision. After careful soul-searching, the patient is ready to make a decision about his desired therapy and doctor. It is that doctor who should call the shots, with agreement from the patient.

    I think the new AUA guidelines, with its emphasis on shared decision-making (kudos to Tony Crispino), is a step in the right direction. Realistically, it won’t change community practice overnight.

  9. As part of my signature block when working with a patient I include the words, “A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed.” Like our learned Sitemaster, I hope that from the research and deep study that led me to mentoring and my own web site, my intent to ease their burden of worry and concern has been successful by addressing their concerns reasonably for the patient and/or his caregiver to review further then discuss with their treating physician.

  10. Thanks for starting this discussion,Mike.

    I never thought about the role of an advocate this way before.

    My own journey along this rocky road began a little over 3 years ago, when my prostate aancer [I guess CPa is the preferred designation in some areas] was initially diagnosed.
    I will contribute more to this discussion after I order my thoughts in light of this new mindset and I have an opportunity to read more about what other “old timers” have to say.

  11. Good post.

    I know many people advocate what it is they did for themselves with full belief that may apply to anyone. But it doesn’t. My first few years I advocated in favor of surgery. But years have me in a totally different frame of mind about that. Not saying that I would have changed my treatment course; I just have a better understanding of the many various nuances involved in the treatment of prostate cancer. There were also many slow adoptions of active surveillance seen from many “well seasoned” patient advocates but that too has drastically changed. I believe that a good advocate will always continue learning, be willing to accept new ways of thinking, and refrain from bias to the best of their ability. And that’s easier said than done.

  12. Apologies for the generalization, but I do think it is a challenge to find an oncologist who specializes in prostate cancer but is not biased on treatment choices to their own area of expertise. There are few of those around! Maybe the best you can do is to be your own informed advocate with access to researchers and specialists to inform your decisions.

  13. Dear Susan:

    Yes. At present it still is a challenge. … My point is that if we are all thinking about this properly, we should be able to make it become less of a challenge, because the physicians should be appropriately rewarded for being good patient advisors first and for being expert at a specific technique second (rather than the other way around).

  14. Thanks,again, Mike and those who have taken time to respond.

    It seems that we are dicing our various roles available for experienced prostate cancer patients in our community. Mike began by focusing on advocacy, but others shifted the focus to mentoring.

    For me, the difference between the two lies in the more personalized focus mentoring takes on and the greater need it imposes not to let your own beliefs and biases get in the way.

    Another role not mentioned directly yet is one where a patient draws on his area of expertise to contribute to the scientific understanding of prostate cancer. Each of us has our own story to tell and some of us back up our narratives with solid data.

    In this era of super-specialzation, we offer forget that the heart and soul of medicine begins with story telling.

    I learned recently that Columbia University has a subspecialty in Narrative Medicine. I also attended a conference where one of the presenters gave a very compelling talk about what he has learned from ” outliers” in his clinical practice. The emerging field of genomic medicine places the emphasis back on tailoring treatment to each patient’s unique type of prostate cancer.

    Finally, there seems to be an increasing recognition, maybe more based on wishful thinking that hard data, the N = 1 research designs are not annectodal stories but can be considered legitimate scientific experiments if they are designed and carried out properly.

    In my field, experimental psychology, Skinner pioneered this approach and emerging MRI technology now provides a way to back up a rigorous analysis of changes in PSA kinetics throughout the course of treatment with more direct measurements of changes in tumor size. This allows for specific hypotheses about proposed mechanisms of action of nontraditional treatments, such as the use of medical marijuana, to be tested empirically.

    The so-called ” gold standard” research designs using double-blind placebo controls are an artefact of big pharma need to get FDA approval for marketing and for-profit drug development. These studies provide very little information for the practicing clinician or the particular patient who wants to know what treatment to try next.

    There is plenty of room in our community for advocates, mentors, and field tested veterans who have learned much from the school of hard knocks.

    Let’s keep this dialogue going.

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