THE "NEW" PROSTATE CANCER INFOLINK

As Howard Wolinsky has been learning over the past few years, not all prostate cancer support groups are “equal” — in the sense that individual support group leaders may be seriously biased by their own personal experiences (which may have occurred many years ago).

As a man on active surveillance for prostate cancer over the past decade, Howard recently described his “learning experience” in an article you can find here.

Now I want to be very clear that there are many really excellent support groups and support group leaders who do everything that they reasonably can to keep up to date with current best practices and the management of differing types of prostate cancer, but it is also certainly the case that there are support groups (and support group leaders) that are significantly less well informed.

One of the issues that the prostate cancer advocacy and support community really needs to grapple with is how to ensure that support groups associated with specific organizations are actually providing a full and appropriate range of services. I am quite sure that organizations like Us TOO International and others want to be able to do this, but whether they really can and are succeeding in doing this is a very different question (as is exemplified in Howard’s recent article above-mentioned).

It is inevitable that any patient who is a support group leader has had his perceptions “colored” (at the very least) by his own personal experiences. This comes with its upsides and its downsides. The major upside is that he has been through certain types of treatment and he understands exactly how they may have affected him, individually. The major downside is that he may be clueless about the experiences of other men who — entirely justifiably — have made decisions that were different to his. Worse still, he may be clueless about the data that support (or don’t support) new forms of diagnosis, monitoring, treatment, and management that may not even have been available when he was diagnosed.

One of the things we try very hard to make clear at Prostate Cancer International (and here on the InfoLink site) is that there are often no “right” or “wrong” ways to manage prostate cancer of specific types. Two men of exactly the same age, general health status, etc., each newly diagnosed with exactly the same type of prostate cancer, can very reasonably come to very different decisions about what they want to do about it. Neither of them is “right” and neither of them is “wrong”. They have just come to different decisions based on the available information.

As an organization, while Prostate Cancer International may feel that the “best” way to manage a specific patient is method X, we would never criticize a patient for concluding that he wanted to be managed by method Y. We would, on the other hand, want to be sure that he was aware that his particular diagnosis might be appropriately managed by any one of methods U, V, W, X, Y and Z (each of which would come with its own spectrum of risks and benefits).

The advent of active surveillance as an appropriate way to manage a vast range of men with early stage, localized, relatively low-risk forms of prostate cancer has drastically changed the way that physicians and patients need to think about and talk about individual options for the management of these types of prostate cancer.

Whether there is really a “culture war” about the management of prostate cancer that is analogous to the current “culture war” about socio-political thinking here in the USA is a little hard to determine, but at Prostate Cancer International we take very seriously the idea that prostate cancer support groups and their leaders need to be able to respond to the needs of their individual members for assistance and support. The last thing any particular support group should be doing is telling any individual patient that they have made bad decisions or that any one form of management is “right” and others are “wrong” when there may be multiple competing but very reasonable options. And we also take very seriously the idea that any person speaking on behalf of Prostate Cancer International has a really clear grasp on the relative risks and benefits of competing management options. Our own personal opinions don’t necessarily apply to other individuals.

Filed under: Diagnosis, Living with Prostate Cancer, Management | Tagged: bias, group, support |