One patient’s personal journey to active surveillance

There was an interesting personal story in Monday’s Washington Post (as told by the patient’s wife) of one man’s journey toward the decision to manage his prostate cancer with active surveillance.

Obviously active surveillance is “not for everyone.” However, what The “New” Prostate Cancer InfoLink finds interesting about this tale is the apparent willingness of two, clearly well informed and skilled urologists to simply “blow off” the possibility that active surveillance was even an acceptable strategy for a patient like this.

It is certainly the case that the very high quality MRI scanning capabilities at the National Cancer Institute (where this patient enrolled in an ongoing clinical trial) can facilitate the decision to place a specific patient on active surveillance. It is also true that most urologists do not have immediate access to technology of this quality. However, …

The real question that this patient’s tale brings to light is the one of why — after some 20 years of research showing that immediate treatment is not always in the interests of an awful lot of men with low-risk, localized prostate cancer — immediate treatment is still the de facto recommendation presented to the majority of such patients?

If patients are not clearly advised of their choices, they can not make wise decisions. One of the two urologists referred to in this article clearly goes out of his way to try to inform his patients about the risks and benefits of PSA testing as well as of the different types of treatment that might be appropriate … but apparently even he was unwilling to bring up active surveillance.

23 Responses

  1. Does this change with focal treatment, minimally invasive? Are focal, less invasive options a game changer?

  2. No, not really. Any form of treatment, however minimally invasive, comes with risks for complications and side effects. The primary question that most men with low- and very low-risk prostate cancer fail to ask themselves (and which many of their doctors also fail to address) is, “Will I/Will this patient really benefit from any treatment at all at this point in time, or should any discussion of treatment (minimally invasive or otherwise) be deferred until it is apparent that treatment is necessary?”

    Active surveillance is a management strategy at a point in time. It is not some sort of absolute decision to never have treatment. By contrast, every form of treatment is a decision to take a risk that the side effects of that treatment may outweigh any available benefits. What we are still missing is tools that will allow us to make those decisions with high enough levels of accuracy.

  3. Another great missive. My suggestions to anyone who wonders why actiive surveillance is not the primary choice for prostate cancer patients is simple: (1) Each person is different. (2) People freak out at the word cancer, and for obvious reasons.

    One has to have “mental fortitude” to do active surveillance for years … because it is not hard to find people where the cancer has left the prostate and they are now on hormonal therapy that also comes with major side effects. The patient and physician must be “on it” monthly. And I mean “on it.”

    How does a prostate cancer patient deal with the emotions of wife and family and the burning stigma to get rid of the cancer? Really. How does one do it? I would have done AS except I already had 9/12 cores positive. I also watched a friend on AS make it a year and a half until his numbers did a major spike and his family was freaking out.

    As I’ve shared before, it is real easy to discuss what “others” should do with prostate cancer and active surveillance. But when the cancer is in you, all of the rules change.

  4. To Gmac53:

    This is the most well run, informative prostate cancer website in the country, in my opinion. The sitemaster is not afraid to bring up all prostate cancer issues and search for solutions, which active surveillance certainly is … albeit often temporary.

    But in answer to your question about “focal therapy” … I believe HIFU does offer less invasive prostate cancer treatment choices to ablate the cancer and reduce side effects. I researched all of the choices and chose HIFU last April and I cannot rave about it enough. I have no side effects.

    The caveat for HIFU, though, is just like that for radiation or RALP: find the most experienced, high volume urologist using the best technology. The learning curve for HIFU is steep, yet it is also steep for RALP and radiation, too. No one seems to talk about that, though.

    In the last 3 months, US HIFU and Ablatherm have submitted applications to the FDA for approval of their differing types of HIFU technology after clinical trials in several parts of the country. Unless something negative comes out on HIFU (or the radiation/RALP lobby intentionally corrupts the approval process) US males will have one more, less invasive choice.

  5. Dear Elucidated1:

    A large part of the point of the tale above is that, for this couple, the precise opposite of what you describe was the case. They were the ones who had to find out, without help from their doctors, that (for them) the idea that “all the rules change” was not the case at all. Are they exceptional? Maybe, but maybe not. My point (I stress) is not whether active surveillance is right or wrong for a particular patient or group of patients. It is that if patients are not offered the option, then many will undergo treatment that they neither want nor need (at least at the time of diagnosis) and that they may come to seriously regret.

  6. Dear Elucidated1:

    I am not aware that US HIFU (which has apparently just changed its name to SonoCare Medical) has submitted such an application for their Sonablate technology. There is no media release about this that I am aware of. It is certainly true that Ablatherm has made such a submission.

  7. Nothing like diversity of information. There is a British urodoc who opined about treating just the minor cancer with margin and not the entire organ, similar to breast cancer.

  8. Sitemaster,

    Thanks for this clear and concise explanation of the reality facing we prostate cancer patients. I really enjoy your helpful summaries of these often detailed stories and studies.

    I am in the fourth year of active surveillance and hoping for some of those improved tools that might come along. Hopefully, in the future, more of us will have access to high precision MRI or something similar.

    I was a little disappointed that, in the story, they never mention the PSA level or rate of change.

    All your reporting and comments are much appreciated!

  9. Dear gmac53 … That is precisely what is meant by the term “focal” therapy, and it can be done in many ways. I think you are referring to statements made by either by Dr. Ahmed or by Dr. Emberton, who work closely together in the UK on the clinical application of focal therapy. Click here to see more.

  10. Yes, Dr. Emberton. Thanks.

  11. Site,

    This couple is obviously bright and well thought out. They have resources. The well written article Jim’s wife wrote is the exception. And out of 240,000 cases diagnosed a year in the US, how many have the ability to have and understand MRI-guided biopsies, to understand the gravity of the type and size of cancer without physician guidance that has the “Patients interests coming before their own professional interests or CYA?” Wouldn’t you think that out of a quarter of a million we could find tens of thousands of stories like Jim’s?

    As a past educator, I am often amazed that bright people have difficulty understanding the thought process and challenges that most people have in America just trying to live a simple life. “Why can’t they just see what I am seeing?”

    Then one throws in the C word, cancer, and all rational thinking goes out the window. Consider the fact the anyone discusses gun control and the next thing you hear is that, “OMG, they are coming to take away all of our guns?”

    Like you, I also have advanced degrees and yet the challenge of medical lexicon, the diverse opinions of choices by doctors I spoke with as well as dealing with the emotion of having cancer is formidable, as I have previously shared.

    A bad analogy would be: You and I are standing on the edge of The Corrnice at Mammoth. You are looking down . . sweating though it is ten degrees out. I tell you just to ride along the ridge to where it is easier to ski down. You tell me that you dont’ even ski.

    Metaphorically, that is exactly the same thing I was feeling when I got prostate cancer. It was overwhelming. So, how does Joe Public figure out when even the best urologists in the world still don’t agree.

  12. BTW, SonaCare Medical (US HIFU) submitted for FDA approval in December.

  13. Dear Elucidated1:

    So wait a moment … I think what you are telling me is that physicians have a responsibility to give their patients simple, honest, and understandable advice! Yes?

    Well that is all that I am saying. My point is precisely that! The physicians who first saw this patient and his wife did not given them simple and honest advice. They told them that immediate treatment was essential. …

    You don’t need a sophisticated MRI machine to tell a man who is a good candidate for active surveillance that he is a good candidate for active surveillance. If he expresses interest in that, then you can start to tell him how to get it done well, and with a minimum of angst. (You still don’t need an MRI machine of the sophistication of the one at the NCI, although it does help some.) If you don’t tell him he is a good candidate at all, then how the **** is he meant to find out that it is a good option?

  14. You just rock. I agree with all of it. But this sounds suspiciously like a topic that must be rammed down the throats of urologists at the next national conference. In the past you have eluded to the fact that more patients should be proactive in their research. Urologists, however, seem quite similar to car mechanics … you want to trust them to do the right thing. And therein lies the rub. Time for an intellectual tune-up.

  15. Customers don’t like coded language nor a feeling of inferiority. We are medical customers.

  16. “It is certainly the case that the very high quality MRI scanning capabilities at the National Cancer Institute (where this patient enrolled in an ongoing clinical trial) can facilitate the decision to place a specific patient on active surveillance.”

    Are such machines capable of telling you the extent of the cancerous tissue, e.g., whether it is organ-confined or not? I know the post-RP prognosis given by nomograms is very dependent on whether it was organ-confined or not but this information is not available from needle biopsies.

  17. Dear Chris:

    Actually a whole range of MRI methodologies are capable of this under the right circumstances. There are a bunch of critical factors involved, which include such factors as: whether an endorectal coil was used; the use of diffusion weighting; the correlation of MRI- and ultrasound-generated data (which is of particular potential importance in the conduct of MRI-targeted biopsies); the field strength of the MRI scanner (1.5, 2, or 3 T); and so on. However, one of the most critical factors is the skill and experience of the radiologists who “read” and interpret the scans.

    At this time there is no consensus on the technology and expertise for widespread application of the use of MRI in active surveillance. And there is certainly a “lower limit” to the size of the tumors that can be seen on an MRI scan. I don’t think that any physician would be recommending active surveillance today for any patient who had any suggestion on MRI of a potentially significant tumor that showed any possibility of extracapsular extension.

  18. Gmac:

    It’s just fascinating to see the superiority of some doctors who revel in playing the God card. And although I do know many that don’t, I have been personally bullied by a urologist early in my prostate cancer path … who basically told me, dripping with innuendo, that unless I went the way he was suggesting, I may not, uh, make it. If my wife hadn’t been with me, I’d have had some fun with him.

    But now that I am cancer free after HIFU, I just backdoored him in a very pointed letter which I also shared with the head of his department of urology, and which I’m sure got him more attention than he wanted.

    At what point in time does the urology community recognize what Mike here is saying? That “active surveillance” should be the first choice, and is active … not passive, and demands close attention on a regular basis? For most Americans though, they get better attention at a Hilton hotel than they get from their doctor. Is the workload so big that now we are all just another number?

  19. Good discussion by all. We are medical customers and given the access to clear advice, research and findings, can and should be permitted a say in our treatment.

  20. I guess one could say we have chosen active surveillance as it is now more than 2.5 years since my husband was first diagnosed with prostate cancer, and if we had followed medical advice treatment would have commenced within a few weeks of diagnosis. Much agonising, much research, and many consultations later and we couldn’t make the decision to go ahead with treatment — i.e., radiation. No-one could guarantee there wouldn’t be any side effects or possible damage which could result in bladder or bowel problems.

    My husband is now 75 and will be 76 in August. His PSA fluctuates and is around 8. His most recent DRE was described as no different than the first one 26 months previously. There are no symptoms or discomfort (that he is aware of) as a result of the cancer. Then one is constantly told that at his age he is likely to die with it rather than from it. So what would one do? Which risk is worse?

    And what of the MRIs. I see this discussed frequently but my husband has never been offered this? Would it show just what is happening? How does one find out out if you have an aggressive creature or just a passive thing that is only another sign of aging down there in that formidable gland. We watch our diet, have cut out processed sugar, decreased meat consumption, keep active, and (what I think is most important) have now got over the initial shock, adjusted to the facts, and go along with wait and see while getting on with living. And regular checkups of course.

    I might add that if we had decided on radiation it would have been 39 treatments, Monday through Friday, requiring travel of 106 km each way each day of treatment. One puts one’s life at risk just travelling the highway to get the treatment! …

  21. Dear Nancy … Sounds to me like you have done all the right things. You could certainly ask the doctors whether an MRI might be appropriate … but I have no idea whether that would be available on the Australian national health system, or how accessible the relevant type of MRI equipment (depending on exactly where you live).

  22. “treatment — i.e., radiation. No-one could guarantee there wouldn’t be any side effects or possible damage which could result in bladder or bowel problems.”

    I guess people are more likely to suspect that radiation could cause side effects than surgery. That may have made a difference to the decision in this case.

  23. Surgery wasn’t offered as an option due to past heart surgery. We felt in the beginning that we were being pushed into making decisions before we really had enough knowledgr and understanding of all the issues. We have watched friends endure miserable times — months and years — having treatment for various cancers — including prostate, and then not surviving. This was another reason we opted for a slower reaction as sometimes quality is better then quantity.

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