Month 27 – Another Study

New Page & New Helpful Link

You may have noticed that I’ve added a new page (link to the right)–“Life After Radical Prostatectomy – 24 Months Later” for those with inquiring minds…Under the Helpful Links section to the right, I’ve added a link to the American Cancer Society’s list of questions you should ask your doctor during your diagnosis and treatment.

Another Study

So there’s yet another study published in the New England Journal of Medicine (link to original article and text below) talking about the side-effects of prostate cancer treatment, supporting the notion that prostate cancer is overtreated with significant consequences.

I get it. But until researchers can isolate the really agressive cancers from the more slow-growing cancers, it’s a crap shoot for any prostate cancer patient no matter how you slice it. Do the active surveillance and pray that the cancer doesn’t metastasize and spread, or treat it with surgery or radiation and risk possible significant side effects when it could have been left alone.

More research is needed to get us to that point where we can make truly educated decisions about our treatment options based on whether we confirmed we have the aggressive or slow-growing cancer.

Would I have made a different treatment decsion two years ago if I had known this information? Probably not. I take comfort in knowing that my PSA levels have been undetectable for two years now. I don’t know how I would have handled living with cancer in my body under active surveillance, not knowing if and when it would have metastasized.

Prostate cancer treatments have serious long-term side effects

Prostate cancer treatments have serious long-term side effects

New research strongly reinforces the notion that prostate cancer is vastly overtreated with often dire results.

A study out Wednesday in the New England Journal of Medicine focused on treatment side effects, following a group of 3,533 men for 15 years after they got either surgery (called prostatectomy) or radiation for cancer that had not spread beyond the prostate. Radiation produced fewer side effects — especially in the first years after treatments– but both groups experienced huge impacts.

“This paper tells you that if you get treatment there are a lot of side effects regardless of the therapy you chose,” the senior author Dr. David Penson, professor of urologic surgery at Vanderbilt University Medical Center, said in an interview.

Most men were in their sixties when they were first treated. Two years after treatment 60.8 percent of the men who had undergone radiation had erectile dysfunction, compared to 78.8 percent of those who chose surgery. By 15 years, the numbers became 87 percent and 93.9 percent. Many men also suffered urinary and bowel problems and those, too, grew worse with time.

A rational argument is that such side effects are acceptable if the treatment is saving lives. But the paper raises serious doubts.

“So many of these men have low-risk disease that probably doesn’t need to be treated,” Penson said.

Men typically undergo needle biopsies because they have elevated levels of the blood test called prostate-specific antigen (PSA). If the needle finds cancer cells, a pathologist measures their severity, resulting in what is called a combined Gleason score that ranges from 1– the least severe– to 10.

Most prostate cancers score between 6-7. Several top urologists at university medical centers agreed that prostate cancer below a score of 6 should be watched, but not treated. Yet in this latest study, which is a reliable cross-section of how medicine is actually practiced, about 60 percent of the men who underwent treatment had scores of 2 to 4.

The findings prove that “a staggering percentage of men with totally inconsequential prostate cancer got treated and suffered the consequences,” says oncologist Dr. Marc Granick of Beth Israel Deaconess Medical Center and Harvard Medical School, who was not involved the study.

Undoubtedly, prostate cancer can be deadly. Estimates are that it will kill almost 30,000 men in the United States this year, second only to lung disease as the major cause of cancer deaths in men. But the problem is, there are at least two kinds of prostate cancer.

The common form appears in the majority of men over age 50, grows slowly, and never presents a health threat. The other form spreads rapidly and can lead to a horribly painful death, usually from malignant cells invading the bones. Doctors cannot tell the difference between the dangerous and harmless cancers. Researchers are looking for genetic markers that would make the critical distinction, but they have yet to find them.

Meanwhile, increasing numbers of prostate cancer specialists argue that the sensible path is for men with lower combined Gleason scores to undergo active surveillance (formerly called watchful waiting), come back for future tests and forgo treatment until it is indicated. Often they will never need treatment.

That doesn’t happen, however. Penson said recent surveys show that fewer than one in four men who are candidates gets active surveillance. The majority get surgery or radiation.

One reason for the intervention is “incentives for the facility and for the providers” — in other words, money for hospitals and doctors. “Also,” he adds, “patients don’t like to hear ‘I have cancer and I’m just going to watch it.’” But patients should demand and doctors should educate that “just watching it” is perfectly safe in many cases.

Learning that lesson could spare an enormous amount of misery and money.

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.

Month 23 – Itching Revisited

It was two years ago that I went in for my physical and my doctor felt a mass on my prostate during a DRE and kicked off this journey. Hard to believe.


As I’ve gained more experience blogging, I’ve noticed that the two most common sources of traffic for this blog are Google searches on:

1. “Bend over and spread your cheeks.” (I won’t even begin to wonder why people Google that…)

2. “Prostate cancer and itching.”


BIOLOGY AHEAD
Looking back at my post on Day 70, I talked about the topic, but only superficially, so I want to revisit it and provide more details about what I was experiencing.

As a refresher, I had my radical prostatectomy on 4 January 2011. Through mid-June of 2011, I experienced a pretty constant itching sensation in my urethra that varied in intensity. Early on, it was pretty strong and nearly constant. As time progressed, the intensity would wane and there were periods where I would be itch-free.

The thing that bothered me wasn’t so much that the itching was completely driving me nuts, it was that it made me feel as though I had to urinate nearly all the time, even though I really didn’t have to go. That made me run to the bathroom much more frequently than I needed to. And when I did urinate, the itching sensation often returned shortly after.

There were no signs of any urinary tract infection at my PSA screening in late February and, I’ll have to admit, being a stubborn/foolish guy, I really didn’t pursue the issue with my urologist. I just endured it, thinking it was part of the package deal. I don’t recommend that approach.

In June 2011, it was pretty interesting in that the itching sensation pretty much stopped suddenly, as though a light switch had been thrown. That pleased me to no end.

So now, 21 months after my surgery, I’m 98.7% itch-free. The only time that I get an itching sensation in my urethra is after a stress incontinence event. (By the way, my stress incontinece has improved significantly as well.) If I have a substantial sneeze or cough, I can sense that a little urine will make its way into my urethra, but not all the way out the end of my penis. When that happens, I itch until I urinate and clear the urethra.

So I hope that provides some better and more meaningful insight into my experience with prostate cancer and itching.

Okay… So a little editorial venting here…

October is Breast Cancer Awareness month and, if you watched any NFL football games this weekend, you saw many players and coaches decked out in pink Nike shoes, pink wrist bands, pink towels, and pink ribbons.

Don’t get me wrong. Breast cancer is a horrible disease and every effort should be made to eradicate it.

Yet the NFL didn’t do squat for Prostate Cancer Awareness Month last month. Zip. Zilch. Nada. Nary a blue ribbon to be found let alone blue shoes, wrist bands, or towels.

Considering that about 10 men on each team will be affected by prostate cancer, it’s pretty sad that they don’t acknowledge it even exists. Imagine how many men they can reach with a message of awareness over the course of four Sundays in September?

Guys need to get much better at increasing prostate cancer awareness (the main reason I’ve kept this blog going) and do much better at marketing the issue and cause.

Alright. I’ll step down off my soap box now…

Month 22 – Status Quo

Aside from this being Prostate Cancer Awareness Month, there really isn’t much that’s changed since last month’s post.

Things continue to go well on pretty much every front with the exception of the sexual function.  That’s still only running at the 50% – 60% level and I think it’s time that I retry the Cialis again.  (Readers of this blog may recall that I had problems with my vision shortly after starting it after the catheter was removed, so I stopped taking it.  I thought eyesite was more important than an erection.)

I did find that there’s a local prostate cancer support group in my area that I may get involved with, mainly to share my experience with guys who are newly diagnosed.  I’ll have to do some research on it…

So that’s about it.  A short post this month.