So it’s been three years since my radical prostatectomy. How am I doing?
Continue reading “Life After Radical Prostatectomy: 36 Months Later”
Month 37 – Value and Future of this Blog
Finally. November / “Movember” is over!
I’m glad to have supported the cause, but I’m even more glad to be rid of that itchy, two-toned beard and moustache! (My moustache and the top half of my beard were a reddish-brown, and the rest was snow white. Ugh.)
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I have to admit that I’m struggling over what to write for this month’s update.
When I began this blog three years ago, it was meant to be an easy way for me to keep family and friends informed of what was happening immediately after the diagnosis. I figured that I would let the decision be up to them to follow along, rather than me fill their email in-boxes with something they may not have felt comfortable reading.
Over time, the mission of this blog was to educate others about prostate cancer from the perspective of just one person who went through the diagnosis and one treatment option.
This blog served both purposes quite well.
But I always wanted the blog updates to bring something of value to its readers, and that’s where I’m beginning to stumble a little.
Is it of value to you to hear month after month that nothing has changed? If it is, then I have no problem continuing monthly updates. But if it’s not, then perhaps it’s time to shift to “as needed” updates–update the blog when I hear something in the news about prostate cancer that’s of interest, or if something changes significantly with my own status.
Perhaps I’ll let you, the readers, answer that question by completing the poll at the top right of this post. Or, if there are specific things you’d like me to address in my monthly updates, leave a comment in the comment section below.
Don’t worry. I can’t see myself abandoning the blog altogether or taking it down. I’ve put to much energy and soul into keeping it going, plus I know that it’s been a good resource for some newly diagnosed guys along the way.
I’m open to your constructive comments and feedback. What do you want to read about in these monthly updates?
Three Years Since Diagnosis
Three Years
So it was three years ago yesterday that my urologist confirmed what my gut had been telling me for 5 weeks–I had prostate cancer. Kind of hard to believe that it’s been that long ago already.
Looking back on the experience, I didn’t realize how much it would impact others. My sister had a melt down when she heard the news. Friends that I thought would be there for me couldn’t even bring themselves to be in the same room with me, let alone have an open discussion about cancer. And acquaintances that I barely interacted with prior to the diagnosis became my staunchest supporters.
The biggest lesson that I learned was that I, as the cancer patient, would have to take the lead and guide those around me through example as to how and when it was okay to talk about the diagnosis. People were afraid to bring up the topic or simply ask, “How are you doing?” for fear that it would send me into a tizzy.
So for those of you reading who may be newly diagnosed, remember that even though it’s primarily about you, it’s also about everyone you come in contact with as well. Look at the world through their eyes. (Or, perhaps, even how you yourself acted when you learned that a friend or family member was diagnosed with cancer.) And, if you do have a close friend or family member who can’t be there for you, don’t push it and don’t judge them. Accept it and move on.
Latest PSA Results
My latest six month check-up shows that my PSA remains undetectable (<0.03 ng/ml) which is great news, of course. No signs of little cancer bugs. Next check-up: 13 May 2014.
More Men’s Health Awareness
To promote men’s health awareness as a part of Movember, Matt Lauer and Al Roker had DRE prostate exams done live on the Today show (don’t worry, you don’t see the actual DRE being performed):
Matt Lauer and Al Roker have prostate exams
It’s great that we continue to increase awareness, but I really wish the men’s health community would be more consolidated and more focused in its efforts.
My local grocery chain highlights prostate cancer in June; there’s National Prostate Cancer Awareness Month in September, and there’s Movember in November. Perhaps it’s good that there are year-round activities, but by being somewhat disjointed, we lack the higher profile and oomph that the breast cancer awareness campaign has.
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Finally, for those readers in the U.S. about to observe Thanksgiving, I hope you have a great holiday with family and friends.
Movember
I forgot that November is “Movember.” Men grow moustaches to support awareness about men’s health issues, including prostate cancer, testicular cancer, and mental health.
You’re supposed to start the month clean-shaven on 1 November and grow and groom a moustache through the end of the month. Moustache-growing teams raise money to support cancer research and men’s health. You can read about it here:
It’s been decades since I last tried growing a moustache, and when I did, the light blond whiskers on my upper lip were barely visible, so you really couldn’t tell it was there. Maybe I’ll give it another shot this month and see what happens. I’m guessing it may be more gray than blond, and will still be barely visible. Oh well.
Month 35 – No News…
…is good news.
I really don’t have anything to report this month. Zip. Zilch. Nada. Nichts. That’s good.
The only thing that I can offer up is the little trip down memory lane.
It was three years ago this week that I went for my routine physical and my doctor felt the mass during the DRE, kicking off this journey. It was an unnerving day that began a whole series of wait-and-see events–appointments, tests, waiting for results–and trying desperately not to let my mind try to get too far ahead of the facts.
Other than that, everything else is pretty much status quo.
Next month’s update will be on 12 November instead of the usual 11th. That’s because I’ll get my next PSA results on the 12th, and I thought I’d just consolidate the updates into one.
Keep your fingers crossed…
Month 34 – Perspectives on Prostate Cancer
September
is
National Prostate Cancer Awareness Month
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.
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From Bloomberg
What If What You “Survived” Wasn’t Cancer?
What If What You ’Survived’ Wasn’t Cancer?
By – Aug 18, 2013
You’re feeling fine when you go for your annual physical. But your mammogram looks a little funny, or your PSA test is a little high, or you get a CT lung scan and a nodule shows up. You get a biopsy, and the doctor delivers the bad news: You have cancer. Because you don’t want to die, you agree to be sliced up and irradiated. Then, fortunately, you’re pronounced a “cancer survivor.” You’re glad they caught it early.
But maybe you went through all that pain for nothing.
For decades, the reigning theory has been that the earlier a cancer is spotted and treated, the less likely it is to be lethal, because it won’t have time to grow and spread. Yet this theory infers causality from correlation. It implicitly assumes that cancer is cancer is cancer, even though we now know that even in the same part of the body, cancer is many different diseases — some aggressive, some not. Perhaps people survive early-stage cancers not because they’re treated in time, but because their disease never would have become life-threatening at all.
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.
“We’ll all be cancer survivors if we keep going at the rate that we’re going,” says Peter Carroll, the chairman of the department of urology at the University of California at San Francisco and a specialist in prostate cancer.
Distracting Doctors
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.
“Physicians, patients, and the general public must recognize that overdiagnosis is common and occurs more frequently with cancer screening,” argues a recent JAMA article by the oncologists Laura J. Esserman (a surgeon and breast-cancer specialist), Ian M. Thompson Jr. (a urologist) and Brian Reid (a specialist in esophageal cancer). They argue for limiting the term “cancer” to conditions likely to be life-threatening if left untreated.
That’s going to be a tough change for a lot of people to swallow. For patients and the rest of the public, getting tested offers a sense of control, encouraging an almost superstitious belief that frequent screening will ward off death. (A few years ago, when the actress Christina Applegate was making the talk-show rounds urging young women to get breast MRIs, my own oncologist told me he was getting calls from women who thought the tests would not merely detect but prevent breast cancer.)
Early detection of non-life-threatening cancers also produces a steady supply of “cancer survivors,” who work to support cancer charities and make their efforts look successful. There’s an entire industry devoted to celebrating “breast cancer survivors” in particular, and many women are heavily invested in that identity. It offers a heroic honorific as a reward for enduring horrible treatments. A term originally coined to remind cancer patients that their disease need not be fatal has become a badge of personal achievement.
Fearing Mistakes
Physicians, meanwhile, fear making a mistake. It seems safer to treat someone who doesn’t really need it than to miss something potentially fatal. But, warns Esserman, director of the Carol Franc Buck Breast Care Center at UCSF, “the cancers that grow and spread very quickly are not the ones that you can catch in time with screening.” If anything, emphasizing early detection misdirects research and funding. “We have to come up with better treatments, we have to figure out who’s really at risk for those and figure out how to prevent them,” she says. “We’re not going to fix it with screening.”
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.
Yet oncologists who identify DCIS have been surgically removing it (and in many cases the entire surrounding breast) for 40 years, so it’s hard to know how dangerous it actually is. “Since we really don’t know the true natural history of DCIS we do not know if DCIS always progresses to invasive cancer or not,” says Colin Wells, a radiologist at the University of California at Los Angeles specializing in breast imaging. “There are some reasons to think not, but this needs to be worked out” with further research. If DCIS does spread to invade breast tissue, the question remains whether that cancer threatens to go beyond the breast, becoming lethal if untreated.
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.”
Distinguishing Tumors
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.
Prostate cancer illustrates the cultural barriers to abandoning what Esserman calls today’s “scorched earth policy.” Despite the widespread awareness that many prostate cancers aren’t life-threatening, many physicians are determined to find and treat it any time a PSA score comes in a little high. “I saw a gentleman this week who had had 12 biopsies, no cancer, and they said there must be cancer in there and they did 24,” says Ian Thompson of the University of Texas Health Science Center at San Antonio, who is one of the JAMA authors.
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.
“The number of people that will die from those slow-growing prostate cancers is really low,” he says, but the unacknowledged costs of giving them a cancer diagnosis are huge: “the person who can’t sleep for two weeks before his next test results, and all the follow-up biopsies and all the lost wages, and the people who can’t get life insurance because they now have a new cancer diagnosis, the person whose firm says, ‘Well, we’re concerned you have cancer and therefore you can’t be promoted to this job.’”
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.
Special Post
September
is
National Prostate Cancer Awareness Month
Take time this month to learn more about prostate cancer, its effects, and the treatment options.
Much has changed in the last year concerning prostate cancer testing and treatment, and you need to be aware of those changes. Get the latest information and guidelines from your personal physician, especially if you’re in an at-risk group.
It’s too important not to educate yourself about prostate cancer. It’s your life we’re talking about, after all.
Month 33 – Bladder Endurance
So here’s an interesting story on some research showing that men who take fish oil supplements for heart health may be putting themselves at increased risk for prostate cancer.
Fish Oils May Raise Prostate Cancer Risk
Granted, it’s only one study, so it’s something to take with a grain of salt, but it’s also something to keep an eye on for future studies.
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Remember that next month, September, is…
National Prostate Cancer Awareness Month
Given all the changes in testing recommendations since last year’s Prostate Cancer Awareness month, it’s even more crucial to become educated about diagnosing prostate cancer and treatment options. Make sure you spread the word and tell the guys in your life to take a few minutes to learn about prostate cancer in September.
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BIOLOGY AHEAD
So a couple of weeks ago, I had a couple of surprises in the bladder control department.
Since the surgery, I have to admit that I get to be a bit more tactical and use bathrooms a bit more frequently than I should. Typically, I’ll last 3-5 hours but may urinate a bit more frequently when I’m not sure when I’ll find the next toilet.
A few weeks ago, I was at a friend’s annual summer barbecue party, and I lasted just over 7 hours before having to go to the bathroom (and that was on a hot summer day when I was drinking plenty to keep hydrated). So that was the first surprise. I couldn’t recall the last time I went 7 hours during the day without using a toilet. (I can sleep through the night fine most of the time.)
But at the end of the 7 hours when I did stand up to head to the bathroom, I sprung a leak. This was more than the standard couple of drops during stress incontinence episodes, this was probably a good spoonful or so that left a two-inch diameter wet stain on my jeans. Thankfully, by then, it was dark and my jeans were dark, too, so it wasn’t obvious. Still, it was completely unexpected.
I guess the lesson learned is to keep emptying my bladder more frequently. I really wasn’t conscientiously trying to set a “hold my bladder” record with the 7 hours; it just happened that way.
Month 32 – Robotic Surgery
Those more astute readers of this blog may have noticed that I’ve added a new page, “Life After Radical Prostatectomy – 30 Months Later,” to give a quick overall update of where I’m at.
Check out the link to the right under the “Pages” section.
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Here’s an interesting article about robotic surgery in general, its success, and its complications:
The article is a bit alarmist, highlighting one really bad case, considering the thousands of perfectly good outcomes from a robotic surgery each year. Still, it is good to see that perspective.
For me, one of the main and obvious take-aways from the article is that the surgeon’s experience level using the robot matters. But then again, I already knew that when I drove myself nuts trying to find the best, most experienced surgeon possible.
If you’re having surgery at a teaching hospital, you may want to consider asking if there will be any “student drivers” at the robot’s wheel and, if so, for what parts of the surgery. Because once you’re in anesthesia la-la-land, you won’t have a clue as to who’s doing what to your body.
Bottom line: research, research, research.
And don’t be afraid to question your doctor about his experience level. If he or she hesitates when answering, or seems offended by the question, it’s time to look for another surgeon. Which surgeon would you choose? The one who says:
“I’ve performed 743 radical prostatectomies in the last 6 years, with the last one on last Thursday, and I have a 1.6% complication rate.”
Or the one who says:
“Well, um, I really don’t keep count, but I’m checked out on the robot and I know what I’m doing.”
It’s your body. It’s your life. You have every right to ask those questions before “hiring” your surgeon.
Life After Radical Prostatectomy: 30 Months Later
So July 4th marks 30 months since my radical prostatectomy (and 30 months of independence from cancer!).
Where am I at in this journey? Well…
Continue reading “Life After Radical Prostatectomy: 30 Months Later”
Dan's Journey through Prostate Cancer 