Month 52 – Less PSA Testing; Rise in Prostate Cancer

Wow.  It didn’t take long for this to happen.

You may recall that in 2012, the U.S. Preventive Services Task Force (USPSTF), recommended abandoning PSA screening of any men of any age.  (In 2009, they recommended no screenings for men over 75.)  Now there’s early research showing a 3% per year increase in intermediate and high-risk prostate cancer cases.

The article, Did PSA Test’s Decline Spur Rise in Prostate Cancers, cautions that this is only one study, but that there was a measurable difference since the change in USPSTF guidelines:

Between 2011 and 2013, the study authors noted a 3 percent per year increase in the percentage of prostate cancer patients who had a PSA level of 10 or higher at the time of their diagnosis. PSA levels of 10 or more signify intermediate or high-risk prostate cancer.

Further studies, of course, are needed to confirm these findings.  But if they are confirmed, this could be quite troubling.

The rationale behind eliminating PSA screening was that too many men were being over-treated and suffering life-long side effects impacting quality of life, when they could have lived a relatively normal life with a slow-growing cancer inside them that would have never killed them.

If I were starting this journey today, I’d want to have the formerly routine annual PSA tests and then scrutinize my treatment options very carefully.  I would not want to wait until I became symptomatic and discover I have a PSA of 10 or more on initial diagnosis.

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As far as my personal status is concerned, I continue to lose weight (now 23 lbs. / 10,4 kg since 1 December 2014), and my occurrences of stress incontinence continue to decline.  (The were pretty infrequent before, but even less so now.)  Sexual function seems to be about the same or just a tad better.

Month 51 – Weight, Incontinence & New Screening

Last fall, I could feel my clothes getting a little tighter, but every time I stepped on the scale, it showed me right at my usual weight.  But when I went to the doctor and stepped on his scale, I was startled at what it read.  Bottom line: My scale was inaccurate and I had managed to creep up to my heaviest weight ever.  It was a real wake-up call.

I have to wonder if my weight was impacting my stress incontinence.  It seemed as though I was having more incidents of it than normal.  Sometimes, I simply attributed it to being tired, because I do know that when my body is tired, the incidence level goes up.

I’ve made a concerted effort to lose weight.  Since 1 December 2014, I’ve managed to lose 17.9 lbs (8 kg) and I feel much better and my stress incontinence has returned to what it was before.  I’m still well above my optimal weight, so I’ll keep at it to see if I can continue to lose weight and hopefully make improvements.

I know this is all anecdotal, but I’ll keep monitoring it and discuss it with my urologist during my next visit (which isn’t until September, so hopefully, I’ll have lost some more weight by then).

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The Prostate Cancer Foundation recently reported the findings of a study that uses MRI technology in conjunction with biopsies and ultrasounds to be able to better distinguish between high-risk and low-risk prostate cancers.  This is exciting news.  If proven out, this could minimize overtreatment of patients with low-risk cancers, and allow those with high-risk cancer to be treated more aggressively.

Month 44 – LARP at 42 Months

On July 4th, I was three and a half years out from my surgery, so I added a new page:

Life After Radical Prostatectomy – 42 Months Later

It’s pretty much a reflection of my new normal, so please check it out.

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Interestingly, about a week ago, I had three consecutive nights where I was running to the bathroom to pee about 4-5 times each night.  I’m not sure what was up with that, but it made for some cranky, sleep-deprived days afterwards.  I wasn’t drinking any more than I normally do, so it wasn’t as though there was extra fluids to process.  Odd.  Oh well.  Back to sleeping through the night.

Month 41 – Biological Update

We’re going to jump right in with this post…

BIOLOGY AHEAD
 
My niece and her three and a half-year old daughter came to visit for their spring break, and we were able to get out and do a lot of fun things together. By the second day, my niece was chiding me about how many times I was going to the bathroom, and that got me to thinking, “Am I going more than usual?” Or was it just her perspective.

In retrospect, I probably was running to the bathroom a tad more frequently. Mainly because we were on the go, outside in cool air a good chunk of the time, and I never knew where the next bathroom might be, so I took advantage of using the ones nearby. (And, no, I’m not talking every 20 minutes. It was every couple of hours.)

As I explained to my niece, it’s more that I have the urge or sensation that I need to go, than I actually do. When I get to the bathroom, not much comes out. Fortunately, the urges aren’t the, “Oh my God, I need to find a bathroom in the next 30 seconds or I’m going to pee in my pants,” kind of urges. But they’re there and they’re telling my brain it’s time to go when my bladder really could last a bit longer. That can be frustrating.

And on the sexual function front, I’ve been quite pleased there. I’ve had much better erections (near 100%) in the last month–all without chemical assistance. Not bad for having only one nerve bundle. As I’ve said before, be patient; let nature do its thing.

So that’s it for this month. Quick and simple.


Late update: I’d encourage those recently diagnosed to read a comment left by another reader, J.R., on the “Life After Radical Prostatectomy – 36 Months Later” page.  It’s an interesting perspective, and I tend to agree with him.  Losing sexual function is more difficult to adjust to than many people, including myself, thought it would be.

Month 39 – Encouraging News on Ability to Determine Aggressive Prostate Cancer

For those who have been regular readers of this blog, I hope you like the new layout.  Things were getting a little too cluttered, so I added a new column just for the blog’s administrative links (left column) and kept all the prostate cancer-specific links in the right column.  It should make it a tad easier to navigate.

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Well, I’m past the head cold that I had and back to normal activity without pads.  I will have to admit, though, that even after the worst of it passed, I seemed to be a little more leak-prone for some reason.  But that’s calmed down, too, thankfully.

*     *     *

There’s encouraging news about having a better ability to determine whether prostate cancer is the aggressive type that can kill you, or the less aggressive type that can be observed under active surveillance.  You can read about that in the previous post (re-blogged from the Prostate Cancer Foundation site).

This is important.  It will help avoid over-treatment of prostate cancer, subjecting men to some of the side-effects of a treatment regimen that they may not have needed in the first place.  Of course, men will still have to overcome the thought of living with cancer inside them, always wondering if and when it may spread into something much more difficult to deal with.

 

Month 38 – Back in Pads (Temporarily)

First, happy 2014! A new year, and a new beginning.

January 4th marks three years since my radical prostatectomy, so I’ve added a new page: “Life After a Radical Prostatectomy – 36 Months Later.” You can access it from the link on the right side of the page.

As far as last month’s post is concerned, I’ll keep the blog going every month for now, and play it by ear as the year progresses. Thanks to those who offered words of encouragement, either privately or through comments.

Finally, another birthday has come and gone since last month’s post, which is just fine by me.  They’re only numbers, and it sure beats the alternative.  🙂

Remember, the American Cancer Society’s motto is that they are “The Official Sponsor of Birthdays,” and they’re a great resource to use.

BIOLOGY (AND PHYSICS) AHEAD
 

Okay. It’s been a while since I’ve used that little warning symbol.

On a return to visit my family over the holidays, I managed to pick up a head cold as a nice supplemental Christmas present. Of course, with most head colds, there’s sneezing, coughing, and just plain misery.

It’s the sneezing and coughing that reintroduced me to Newton’s third law of physics: For every action, there is an equal and opposite reaction. Big time.

Let’s just say that every big sneeze and violent coughing up of mucus that had drained into my throat or lungs, caused enough urine to leak out the other end that I found myself back wearing pads for the worst days of the cold. Not fun.

So my advice to you is to keep that package of pads handy for just such situations if you still suffer from stress incontinence. (I still have a package of the standard men’s pads that Depend put out, but now I see they have smaller, thinner pads, too. It may be worth giving them a try.)

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 29 – Blogging About Cancer

I stumbled across the article below a few weeks ago and found it to be quite interesting, considering that I’ve been blogging about my prostate cancer for over two and a half years and 8,000+ page reads now.

Blogging about cancer certainly isn’t for everyone, and there are concerns in this electronic age.  For example, how much do you want your employer to know about what you’re going through?  How do you protect your own privacy and the privacy of others in your blog?  All things to consider.

I haven’t looked at some of the sites mentioned in any detail, but the one that offers up a calendar to coordinate visits, meals, snow shoveling, etc., is something that could come in quite handy.

During my recuperation, I had very generous friends and neighbors who would help me out, but there was no coordination, and I’d end up with three meals on one night, and go for four or five days without seeing someone.  Would have been nice to have that calendar and the ability to coordinate better.

*     *     *
BIOLOGY AHEAD
Well, last month I reported having had an erection good enough for penetration, and I’m sad to report that, for now, it appears to have been a one-time event. Still, my erections are certainly better than a year ago, and it’s something I’ll discuss with my urologist when I go for my next PSA test in May.

Other than that, things are pretty good… I can sleep 7-8 hours through the night without having to use the bathroom, and I think I’m stuck with some very minor stress incontinence (a drop or two when I cough, sneeze, or squat) from here on out.

*     *     *

Why More Patients Should Blog About Illness and Death

March 28, 201310:05 AM

I entered the world of illness blogs for the first time when I learned through Facebook that a friend from middle school passed away last Friday from acute myeloid leukemia. In the three months between his diagnosis and his death, the friend, whom I’ll call Tom, blogged beautifully and intimately on CaringBridge, a Web tool designed to help the seriously ill tell their stories and manage communication with friends and family.

Tom was 34. In his Web journal, he wrote about the trauma of bone marrow exams and chemotherapy and his anxiety about finding a bone marrow transplant donor. He supplemented his dispatches from the cancer ward with funny and raw Instagram photos, defiant tweets and YouTube videos and lyrics of the songs he was listening to.

Altogether, it was a window, painful but so rarely accessible, into the exquisite horror of a harrowing prognosis and the burden of the toll of illness on his friends and family. Tom was desperately worried about his wife, his young son and his daughter on the way. Yet his love for them rang out so clearly through his writings that the blog itself may one day be a treasured memento of the ways Tom held them close in his final days.

We share so many milestones now through social media. And that includes health: A 2010 survey by Pew Research found that 23 percent of the users of social networking sites have followed their friends’ personal health experiences on Facebook. So is it any surprise that the outer reaches of our social networks now also deliver us intimate stories of dying?

Palliative care experts, who specialize in improving the quality of life for people with a life-threatening illness, say all this blogging and sharing about illness is helping to open up the conversation about death that we so often avoid.

“As more people tell their story of dying with a terminal illness, we’re seeing a change in how we look at illness and mortality,” says Christian Sinclair, national hospice medical director at Gentiva Health Services, a large home health care company. “Illness and death are still so technically driven, or medicalized. So getting a safe space, like a blog or social media, to talk about it can be very empowering.”

Blogging empowers patients to talk about illness outside the typical frame of “the battle,” Sinclair says, and reading the stories helps family members, too. “They don’t have to dodge the hard questions, because the patient is able to tell their story openly and frankly,” says Sinclair, who also edits the blog Pallimed.

The most prestigious medical institutions, including Johns Hopkins and the University of Michigan, now encourage patients to blog their illness through sites like CaringBridge and CarePages. In the hospice community, a longtime volunteer and software engineer started What Matters Now to offer similar services.

Other institutions, like the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C., run writing workshops. Nancy Morgan, who directs the center’s arts and humanities program, says she never instructs people to write directly about cancer. “There is a potential for wounding,” she says, especially if the patients are depressed or otherwise feeling too vulnerable. “Most of the time they do [choose to write about the cancer], but it’s their choice.”

While many illness blogs are read only by friends and family, some patients go more public with their stories. Right here on NPR.org, Leroy Sievers and his wife, Laurie Singer Sievers, blogged their way through Leroy’s cancer, which took his life in 2008. And David Oliver, a retired professor of gerontology at the University of Missouri, and his wife, Debbie, a palliative care and hospice expert at the same university, have kept a video blog of David’s illness on YouTube and this site.

Still, some bloggers keep their blogs private from certain people close to them during their illness. A 2011 survey of 41 illness bloggers by researchers at Tufts University School of Medicine found that only 1 in 4 of the writers shared their blogs with their health providers.

Holding back from doctors and nurses like that could be a missed opportunity — and not just for the patient, according to Sinclair. “I think these blogs help physicians and nurses see their patients as [people],” he says. “But there are boundaries, and some health care professionals are looking for opportunities to get closer while others want to shield themselves.”

Sinclair says that when patients have shared their blogs with him, he’s enjoyed them. “I think it helps us check up on our own mortality. Am I doing the things I want to do? Am I making a difference? These are positive questions that can get lost in the shuffle of the day.”

Month 26 – Two Down; Eight to Go; and 55

Okay. First, a warning. This month’s update will be like a ping pong ball in a clothes drier– topics all over the place.

Two Down; Eight to Go

For family, friends, and regular blog readers, you know that I can get pretty OCD about remembering dates and anniversaries. Well, imagine my own surprise when Friday, 1/4, came and went as though it were a regular day, and it was.

But it was two years ago Friday that I was having that pernicious little prostate plucked from my pelvis in surgery, and I completely forgot about it! I guess that’s a good sign. Life goes on after prostate cancer. That, or perhaps my memory is fading… 😦

Most will say that you have to remain cancer-free for 10 years to really have beaten it, so Friday marked 2 years down, 8 to go.

55

Somewhere between last month’s post and this month’s post, I celebrated my 55th birthday. My new motto regarding birthdays–regardless of the number–is: Any birthday you’re around to celebrate is a great birthday!

Blog Reader Visits

This week, I visited with two guys who I’ve met through this blog. Kind of building a mini-support network, I guess.

One had his radical prostatectomy in May 2012 and is progressing nicely. The other just began this journey with his prostate cancer diagnosis last Friday. I wish him well.

BIOLOGY AHEAD

Jinxed

Wouldn’t you know it? After writing last month’s post about sleeping through the night, I’ve been having problems sleeping through the night. Go figure.

When I was staying with my sister for the holidays, two of the five nights I was there, I was up peeing four or five times through the night. My fluid intake wasn’t any higher than normal. (Really! No 12 pack of holiday beer or gallon of eggnog…) In fact, the one night, I was beginning to wonder, “Where is all this coming from?!?” I’ve had a couple nights since where I’ve been up two or three times.

PCa and Dating

My gut tells me that I’m in a tiny group of prostate cancer (PCa) survivors who are single. The vast majority of PCa survivors are already in relationships, and their spouses/partners were part of the treatment decision-making process, fully understanding the risks and possible side effects when it came to sexual function.

One of my New Year’s resolutions was to throw myself into the deep end of the dating pool because I really would like to share my life with someone.

My struggle, however, is figuring out how and when to tell that someone about the PCa, the surgery, and its impact on my sexual function.

With only one nerve bundle remaining, I can only achieve a 50% – 75% erection–not enough for penetrative sex. And, of course, when I orgasm, there is no ejaculate–zip, zilch, nada.

Relationships should be founded upon open, honest communication. But somehow I don’t think I’ll swim even one lap in the dating pool if I walk into the restaurant and say, “Hi. Pleased to meet you. I can’t get a boner and I don’t ejaculate. Still wanna try this out?”

Nor do I want to string someone along for weeks or months and then find that romantic moment where things would progress to the next level and have to say, “You know… There’s something I’ve been meaning to tell you,” or, worse, “Surprise!!”

Relationships are more than just sex (and intimacy is more than just intercourse). So part of me says let the person get to know me over a period of time, and if there’s a real connection, then they may be able to overlook the sexual function issues. But if it is an issue, then there may be two broken hearts as we head off in separate directions.

Somewhere in the middle may be best. Perhaps in the 3-5 date range. If it looks like there’s a possibility that this may go someplace, let them know at that point. They’ll know enough about me to make the call as to whether my dashing good looks , charming personality, and quirky wit outweigh the sexual function shortcomings.

So wish me luck.

Month 25 – Sleeping through the night

Not long ago, I was comparing notes with a fellow radical prostatectomy patient, and the discussion led to sleeping through the night.

This particular gentleman said that, while he had nearly 100% control over incontinence, the one thing that plagued him was the need to run to the bathroom multiple times through the night.  Obviously, that makes for a very fitful sleep pattern.

My own experience has been much better.  In the first few months after my surgery, I was running to the bathroom 2-4 times through the night.  I suspect, though, that was me being overly cautious, not wanting to have an accident in the bed.  I would also curtail my fluid intake after dinner with the thought that, if there’s nothing in me, there’s nothing that will have to come out.

Today, I can pretty much sleep through the entire night without a problem, even with late night fluid intake (I gave up on the nothing-to-drink-after-dinner notion long ago).  Still, there’s probably one night every six weeks or so where I find myself making two or three trips for whatever reason.  But it’s happened the last few nights, but I suspect that may be something related to recovering from my first overseas trip since the surgery.

I just came back from a trip to Germany and Austria to check out the Christmas markets and to visit family and a friend.  I think my body clock is still somewhere between Vienna and here, and that’s why I’ve had to run to the bathroom in the middle of the night.  Pure speculation.

The flights over and back went just fine.  No problems with being cooped up for 9 hours or so, at least as far as bladder control was concerned.  I did pack a couple of pads for insurance, but all they did was take up a little suitcase space.  They weren’t needed at all.