Well, I really don’t have much of an update from a personal perspective. Things are pretty much status quo, which is good.
I was amazed, however, that since the last post, this blog has surpassed the 10,000 page views mark, with readers from around the globe. It’s astonishing to me given my original intent when starting this blog.
Speaking of readers, one of the blog readers (a fellow prostate cancer patient and now friend), forwarded me the article below shortly after my last post.
Again, there have been so many changes in guidance on testing and treatment in the last year that it will make your head spin. If I were newly diagnosed today, I’m not sure what I would do.
I take that back. One thing I would do is slow the decision-making process down and research, research, research. But even at that, at some point you and your physician(s) are going to have to make a decision based on the best information available to you at that point in time, and there will always be some element of risk in whatever decision you make, no matter how thoroughly researched.
Does that mean that I rushed my own decision and regret having had the radical prostatectomy? Generally speaking, no and no.
Yes, I could have kept on researching, but near the end, my head was ready to explode from all of the information that I had gathered, and that was taking an emotional and physical toll on me.
And, had my quality of life post-prostatectomy been not as good as it is, then I may have had a bit more regret about having had it. Of course, any man would like to have full erections without drug assistance and no stress incontinence. But my issues are relatively minor in the grand scheme of things and have little or no impact on my daily life. That’s pretty good considering…
So read the article for a thought-provoking perspective, and use September to educate yourself and the guys in your life about prostate cancer.
What If What You ’Survived’ Wasn’t Cancer?
But maybe you went through all that pain for nothing.
This isn’t just logical nit-picking. Thanks to widespread screening, the number of early-stage cancers identified has skyrocketed. In many instances — including types of breast, prostate, thyroid and lung cancers — more early diagnoses haven’t led to proportionate decreases in mortality. (New drugs, not early detection, account for at least two-thirds of the reduction in breast-cancer mortality.) The cancers the tests pick up aren’t necessarily life-threatening. They’re just really common. So more sensitive tests and more frequent screening mean more cancer, more cancer treatment and more cancer survivors.
In a well-intended effort to save lives, the emphasis on early detection is essentially looking under the lamp post: Putting many patients who don’t have life-threatening diseases through traumatic treatments while distracting doctors from the bigger challenge of developing ways to identify and treat the really dangerous fast-growing cancers.
There are plenty of scientific unknowns. Take the commonly diagnosed breast cancer called ductal carcinoma in situ, which accounts for about a third of new U.S. diagnoses, 60,000 a year. In these cases, the cells lining the walls of milk ducts look like cancer, but they haven’t invaded the surrounding breast tissue. DCIS was a rare diagnosis before the introduction of mammograms, which are highly sensitive to milk-duct calcifications, and the JAMA article labels it a “premalignant condition” that shouldn’t even be called cancer. Arguably, a lot of women who think of themselves as “breast cancer survivors” have survived treatment, not cancer.
By contrast, we do know that a lot of prostate cancer isn’t dangerous. Autopsy studies show it’s quite common in older men who die from unrelated causes. “Out there in the street, if you remove the prostates in men over the age of 50, 30 to 40 percent would have some kind of cancer,” Carroll says, “most likely, low grade and low volume.”
Thanks to more sensitive tests, he notes, the prostate “cancers we’re detecting today are totally different than the cancers we saw two decades ago. And our ability to distinguish these tumors is much better. We have the wherewithal now to be able to tell a patient that your cancer is highly likely confined to your prostate, of small volume, slow growing, and something that may not need immediate treatment at all.”
Carroll has more than 1,000 patients under “active surveillance,” getting regular PSA tests, imaging and biopsies. Only about one in three turns out to need treatment within five to 10 years. (An additional 10 percent opt for surgery simply because they get tired of all the tests or can’t take the anxiety.) The program is also working, Carroll says, to “decrease the burden of testing,” ideally by eliminating the need for repeated biopsies.
A prostate-cancer diagnosis is still terrifying to patients and their families. Thompson describes many of his conversations with patients — and especially with their wives — as “talking them off the ledge.” When he tells patients they’re likely to be fine without immediate treatment, they often worry how they’ll explain the good news to their children or neighbors. People expect a cancer diagnosis to entail trauma.
Although Carroll thinks calling slow-growing prostate tumors “cancer” is important to encourage vigilance, Thompson wants to change the nomenclature, using the term IDLE (indolent lesions of epithelial origin) to describe low-risk cases where waiting isn’t likely to make a difference. Just using the word “cancer,” he argues, creates unnecessary suffering.
It’s a compelling case, but changing the vocabulary finesses the fundamental cultural issue: the widespread and incorrect belief that “cancer” is a single condition, defined only by site in the body, rather than a broad category like “infectious disease.” Someone doesn’t develop “cancer” but, rather, “a cancer.” How frightening that diagnosis should be depends on which one.