Month 11 – Colds, Allergies, Confusion & Disparity

So it’s hard to believe that it was a year ago last week that this adventure began with my doctor feeling a mass on my prostate during my routine physical on 7 October 2010.  My how time flies when you’re having fun!

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So two days after last month’s posting, I came down with a nasty head cold that knocked me out of commission for a week or so.  On that Tuesday afternoon, I was toast and went home from work early; I stayed home Wednesday and Thursday.  Friday, I dragged my butt back into the office, but that probably wasn’t the wisest move, because Saturday and Sunday I was in bed the whole weekend.

Once the cold was over it seems that my seasonal allergies have managed to kick in, causing runny noses and sneezing. 

BIOLOGY AHEAD
Those experience proved to be a step back as far as the ol’ plumbing was concerned.  With nearly every sneeze, cough, and pressure used to blow my nose, there was some leakage on the other end.  It was frustrating to have to go back to wearing pads for about 10 days; I was hoping that that chapter of this story was behind me.  Apparently not.

I’ll have to admit that the experience was a bit depressing and made me want to have my prostate back.

 

Do I regret having had the surgery instead of some other treatment option?  No, not really.  There can be risks and side effects with each. 

With the surgery, I’m cancer-free as of my last check-up.  Those nasty little cells were removed from my body completely.  With the seed radiation therapy, you’d know that the cancer cells are still there, and hope that the radiation is killing them faster than they’re growing.  Having that little cloud constantly hanging over my head would be worse than occasionally leaking pee into my shorts.

While the direct beam radiation methods have gotten much better, the idea of possibly losing control of your bowels as a result of the treatment is, again, worse than a little leak now and then.

So when I do get a bit down or frustrated by the leaks, I remember two words: Cancer-free.

Going forward, I’ll just have to take more vitamins, wash my hands every ten minutes, avoid contact with any people, and stay away from pollen…  🙂  Okay.  Perhaps a bit extreme.  I’ll take care and keep a stock of pads on hand instead.  And keep doing my pelvic floor exercises.

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Of course, after going through all of that, I really didn’t need to get confused by this recent story about the effectiveness of using the PSA test for prostate cancer screening:

http://www.cnn.com/2011/10/06/health/prostate-screening/index.html?iref=allsearch

Just in case the link doesn’t work (not sure how long CNN keeps it up), here’s the text from the article:

(CNN) — The U.S. Preventive Services Task Force, the group that told women in their 40s that they don’t need mammograms, will soon recommend that men not get screened for prostate cancer, according to a source privy to the task force deliberations.

The task force is set to recommend a “D” rating for prostate specific antigen, or PSA, testing. Such a rating means “there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits,” according to the group’s website. The task force is set to propose this recommendation Tuesday, and then allow for a comment period before issuing a final recommendation.

According to a draft copy of a report released Friday, a review of studies shows screening with the PSA blood test results in “small or no reduction” in prostate cancer deaths.

The report adds that PSA testing is “associated with harms related to subsequent evaluation and treatments.”

The PSA test, which is sometimes accompanied by a digital rectal exam, can help determine if a man has prostate cancer. The problem is that many of the cancers that get detected are so small and slow-growing, they’ll never be harmful, and doctors have a difficult time discerning the quick, harmful cancers from the slow, harmless ones.

If you test 100 men over age 50, 17 of them will have prostate cancer, and only three of those will have a fast-growing cancer and die of the disease, according to Dr. Kenneth Lin, senior author of the paper.

If the 14 men with the slow-growing cancers are treated, they could be rendered impotent or incontinent from the treatment; or worse, the treatment could kill them. About one in 500 men who has a radical prostatectomy will die because of complications of the surgery, according to Lin.
Some prostate cancer patients were disappointed with the task force’s decision.

A spokesman for the Prostate Cancer Foundation called the proposed recommendation “a tremendous mistake.”

“You’re talking to someone whose life was saved by [the PSA test],” Dan Zenka said.
But Lin says he believes testing does more harm than good.

“Maybe you should get tested if you have this horrible family history where everyone gets prostate cancer before the age of 50. But for most men, testing is harmful,” he said.

Until last year, Lin worked with the Preventive Services Task Force as a medical officer for the Agency for Healthcare Research and Quality. He says the task force voted in 2009 to give PSA screening a “D” rating, but it didn’t announce it because of the uproar over the mammogram recommendation.

“I was so frustrated with the political interference, and this was the final straw,” said Lin, who left the group in November and is now an assistant professor of family medicine at Georgetown University Medical Center.
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CNN’s Jennifer Bixler and Aaron Cooper contributed to this report.

I’m not sure how to take that report, especially on top of my experiences over the last month.

I disagree that the test itself is harmful.  It’s a simple blood test.  It’s the results of the test that can cause issues.

Knowing that you have an elevated PSA reading will likely cause some emotional strain, but is it better to bury your head in the sand and not know that cancer may be alive and well within your body?  Sometimes ignorance is bliss, but I don’t think most men would think so in this case.

It’s what you do with the PSA results that can cause the harm.  Perhaps if you had an elevated PSA without any mass felt during a DRE, you may want to wait and monitor your PSA over a period of time.

In my case, my doctors felt a sizeable mass on my prostate despite a relatively low PSA reading (5.0).  My prostate weighed 70 grams on removal; a normal prostate weighs 40-45 grams.  I was told the cancer was a slow-growing type (Gleason 3+3 = 6) but how much longer could I have gone without having the cancer escape my prostate and spread to my lymph system, bones, or organs given the size of the tumor?  Who knows.

Could I have waited a little longer between diagnosis and surgery (11/11/10 to 1/4/11) to see what would happen?  Perhaps.  Should I have?  I don’t know.

If I apply the definition used in the article, I guess I have been “harmed.” I have minor stress incontinence and my sexual function has yet to return. But for me, I can live with being “harmed” in return for being cancer-free (“live” being the operable word).

The only thing that I can say is that each case is unique, and each man’s tolerance for risk is different.  In my case, I can say with confidence that I made the correct choice for me and my circumstances.  Is my choice the right choice for someone else?  That’s not for me to say.

The one thing that is good about that article is the fact that it really makes you think about ALL of the options that are out there.  Still, that can be very confusing, so take the time that you need to evaluate what will work best for you.  But if you can analyze something until the 12th of Never, you also need to recognize that, at some point, you need to make a choice.  If you’ve done your homework, it will be the right choice for you.

*     *     *

One in six men will be diagnosed with prostate cancer, and one in eight women will be diagnosed with breast cancer, and there’s a huge disparity in the amount of press each receive.

Last month was National Prostate Cancer Awareness Month, and I searched the archives of the Indianapolis Star to see how they covered it:

There were only three articles that referenced prostate cancer; one was an obituary and another was a two-line announcement of screenings being offered at a local hospital. 
Here’s a snapshot of today’s Indy Star during Breast Cancer Awareness Month:
A slight difference?
Don’t get me wrong.  No one should have to introduce the word “cancer” into their daily vocabulary, male or female, and I’m not trying to discount all the wonderful efforts that have been made over the years to find a cure for breast cancer.  But seeing as prostate cancer will affect more men than breast cancer will affect women, I’d like to see at least a little more attention, awareness, and research paid to a cure for prostate cancer so that someday it’s on a par with that given to breast cancer.
Call me childish.  Call me bitter.  Or just understand that I’m trying to do my part to advance the cause.


Month 10 – Reflection

Remember all those lost on this day 10 years ago.
And remember all those who have sacrificed so much bringing those responsible to justice.
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September is Prostate Cancer Awareness Month

Nearly one in six men will be diagnosed with prostate cancer in their lifetime.  If you have a family member who has had prostate cancer, your chances of developing the disease increase significantly.

Do yourself and your family a favor: Don’t put off getting checked.

Month 9 – Still Cancer Free!

Well, the headline just about says it all. My PSA test came back undetectable!! Woo-freakin’-hoo!I have to admit that I really let this get to me over the last few days. I was distracted and grumpy pretty much all week long as I thought about the “What if….?”

If the results came back showing an elevated PSA, that would mean a whole new ball game. The PSA test is sensitive enough to detect the presence of cells containing the antigen, and those cells could be anywhere: the prostate bed (where the prostate used to be), the bones, the organs, the lymph system–anywhere.

So even though a PSA test can indicate the presence of cancerous cells, it doesn’t tell us where they are. We’d have to wait for the cells to multiply enough to where they may show up on an MRI, CT scan, or bone scan. So selecting the right treatment option with the least short- and long-term side effects can be a real crap shoot.

Knowing that is why I haven’t slept solidly since Saturday night.

The one thing that surprised me during the visit with the surgeon this afternoon was that he performed another DRE. And I joked with him that he must be giving wicked DRE’s because there were smelling salts taped to the exam room wall. “Just bend over and lean on the table,” he replied.

He wanted to make sure that nothing was growing inside that we needed to be concerned about. There wasn’t. I appreciate his thoroughness.

So we go through this exercise again on Ground Hog Day (2.2.12) for the PSA test and the results on 2.9.12.

So I’ll close with my version of a different kind of PSA (Public Service Announcement, not Prostate Specific Antigens):

September is Prostate Cancer Awareness Month!

Guys (and gals who love their guys), remember that September is Prostate Cancer Awareness Month.

When’s the last time you had your PSA tested or your prostate poked? If you can’t remember, then it’s time to schedule an appointment with your favorite small-fingered doctor.

Thirty seconds of discomfort and a blood test saved my life. They can save your life, too!

If you want to learn more about prostate cancer causes, prevention, and treatment, this book was particularly helpful in educating me:

Dr. Patrick Walsh’s Guide fo Surviving Prostate Cancer

Month 8 – New Schedule

It was 8 months ago today that I received my cancer diagnosis (the last post was the 6-month anniversary of the surgery), and things are going well enough that you can tell I’m struggling to come up with things of interest for a weekly post. 

So based on that, I think it’s time that I switch to a monthly update; look for them on the 11th of each month.  Of course, if there’s anything of any great importance that pops up, I’ll let you know through email and a posting here.

Next month’s update just happens to be on the same day that I get my PSA results, so that will certainly be a newsworthy day.

BIOLOGY AHEAD

The only thing of note is that my allergies seem to be kicking in this summer, and that means that if I have a sudden sneeze, I have an equal and opposite reaction on the other end.  We’ll see how that plays out through the rest of the summer.  I’m not sure that I want to be in a Benadryl haze or go back to wearing pads, but if I have to, I have to.  Oh well.

Life After Radical Prostatectomy: 6 Months Later

Okay, today marks six months since having my radical prostatectomy on 4 January 2011, and I thought that I would provide a general overview of what life has been like in those six months.

Elements of this page will be very graphic in nature (talking about incontinence and sexual function), so if you’re not a fellow prostate cancer patient, you may just want to hit Google’s “I feel lucky” button.

The Early Days

I was off work from 3 January to 14 February, and might have been able to return sooner had it not been for the little episode with the infected lymph fluid that sent me back into the hospital for five days in late January.

Because the lymph fluid built up around my bladder and squeezed the piss out of it (literally), my bladder control wasn’t exactly where I wanted it when I returned to work.  Fortunately, it was good enough not to have to wear the full Depends diapers, and only the protective pads.

In late February and March, any residual pain from the surgery or drain tubes was gone and I resumed most of my normal activities–walking, stairs, driving–without much of an issue.  I was typically going through two or three pads a day depending on how active I was or just whether or not it was a good day or bad day for me.

That’s one thing my surgeon told me to expect–a roller coaster ride of good and bad days.  I didn’t let myself get too discouraged on the bad days because I knew that the trend line was going up–my good days kept outnumbering my bad days more and more.  

The other thing that he reminded me was that recovery times vary person-by-person.  One person can be dry in a matter of weeks, and another can take a full year.  I’ve been in the middle on that.

Incontinence

Stress incontinence was an issue early on.  Chances of me spring a leak were pretty good when squatting, lifting groceries from an odd angle, sneezing, or coughing.  In the very early days, I found that even standing too quickly could cause a leak.

And then there are just the, “What the hell was that?” episodes.  I can recall just standing in the grocery store talking to a coworker when I felt a little squirt just hit the pad for no apparent reason.   Go figure.

None of the leaks were large in volume.  In other words, I wasn’t peeing in my pants.  Most, I would estimate, were less than a teaspoonful (or perhaps a tablespoonful on some occasions)–enough to warrant having a bad to avoid a wet spot in my trousers.

Throughout all of that, I found myself running to the bathroom more frequently than I did before the surgery.  It wasn’t that I really needed to “go,” rather I think it was more psychological at first.  I just wanted to make sure that I wouldn’t have an accident.

Part of it was physical, too.  Up until rather recently, there was a near-constant urge to urinate.  That made for frequent trips to the bathroom even though my bladder was relatively empty.

Interestingly, in mid-May, the leaks pretty much stopped (save the stress incontinence) and I decided to stop wearing the pads. And I’ve done so with only one small incident–a sneeze surprised me before I could tighten my pelvic floor muscles and cross my legs.

By the first week of June, the near-constant urge to urinate went away, although it came back for a couple of days last week.

Traveling

By April, I was able to resume traveling for fun and work.  I took several lengthy road trips and my first flight.

Interestingly, there are some logistical and security concerns when traveling with pads.  First, you have to remember to bring them.  Second, getting through airport screenings with something shoved down your underwear is probably something you don’t want to do unless you want to have an intimate experience with a TSA agent.

For my first flight, I actually wore a pad as I drove to the airport.  I went to the men’s room after checking in, removed it, and then proceeded through security.  As I went through security, I explained my situation to the TSA agent and asked what would happen if I had to wear the pad through security.  He said they’d pull me into a private room and conduct a search there.  

After clearing security, I went to the men’s room, pulled a spare pad out of my carry-on bag, and put it in place for the flight.

Sexual Function

As far as sexual function is concerned, we may as well call it sexual dysfunction at this point.  Nothing’s happening in that department yet.

Remember that, because my tumor was so large, the surgeon had to take one set of nerve bundles, so that greatly reduced my possibility of regaining normal sexual function without some sort of assistance.

The doctor started me on the daily 5 mg Cialis pills when he pulled the catheter out.  We stopped them when I was readmitted to the hospital for my infection, and then resumed them on my return home.

Shortly after returning to work, my vision started getting pretty blurry.  Knowing that one of the side effects of Cialis is blurred vision or–worse–out-and-out blindness, I stopped taking the pills.  Saving my vision was more important than getting a boner.

I think that I may have overreacted some, because a visit to my optometrist revealed that I had perfectly healthy eyes.  Perhaps it was just getting back in front of a computer under miserable fluorescent lights that caused the blurriness.  Still, I have yet to resume the Cialis.

While I haven’t been able to have an erection, I have been able to generate enough excitement to have orgasms.  Orgasms after the prostatectomy are much different than those before.

First, there’s the obvious fact that there’s no ejaculate.  All of that plumbing was disconnected or removed during the surgery.  Interestingly, I find the orgasms to be more intense after the surgery.  I find myself much more hypersensitive to touch during or immediately after.  That’s something that I wasn’t expecting.

Summary

So it took me from January to the end of May to become “dry” again as far as the incontinence was concerned.  Wearing the pads was a minor inconvenience and they certainly beat the alternative of having cancer and dying.  As my doctor reminded me, not everyone recovers the same, so be patient.

As far as the sexual function is concerned, I’ll be patient on that.  A fellow survivor told me it took him 18 months to regain function, and he had both sets of nerves left behind.  Besides, I’m not in a relationship right now so it’s not as though that’s an immediate need to satisfy a partner.  If I do find someone, then this will take on increased importance.

Are there days that I wish I had my prostate back?  Of course.  But I’m thankful that I’m around to have those thoughts.

Six Months – Happy Independence Day!

Special Post

Wow. Hard to believe that it was six months ago today that I was being wheeled into surgery on a competitor’s stretcher!

Friday, I had an appointment with my personal physician to just follow up on all that’s happened in those six months. She was pleased with my progress and outcome and really had no significant concerns or suggestions for me.

In some ways, I was tempted to have her run a PSA test on me, but I’ll be patient and wait for the 4 August 2011 appointment and the results on 11 August. The surgeon really wanted to use the same lab to make sure that the process allowed for an apples-to-apples comparison with the February test results.

Another reason not to do it last Friday was insurance. I’m still fighting with the hospital and insurance company over the second stay in January, and the last thing I need is for them to question why I have two PSA tests within a month of each other. That would take until 2027 to resolve. 🙂

Finally, I added a new page to the blog, “Life After Prostatectomy.” It’s really intended for fellow prostate cancer patients, as it’s an open discussion of my experience with incontinence and sexual function. If you don’t want to know about that kind of thing, don’t read it! 🙂

So that’s it on this six-month anniversary. More on Thursday.

Week 33 – Regression

So it’s been a quiet week again… Same routine at work with not much new to report.

BIOLOGY AHEAD

A few weeks ago, I reported that the itchy feeling in my urethra–that gave me the near constant urge to urinate–had finally gone away.  It’s been back again for the last few days.  I’m not sure what that means other than it may be a dip in the roller coaster ride that the surgeon forewarned me about months ago.

I’m not overly concerned about it for now.  It’s still just a nuisance.  No pads are needed–I just run to the bathroom more than I really need to just to be safe.

Just before my surgery, my family physician scheduled a 6-month follow-up visit with her, and that appointment is tomorrow morning.  I’ll mention it to her, but I really don’t expect that she’ll say much other than “talk to the surgeon.”

In some ways, I’d like her to take the blood sample for the PSA test tomorrow, but the surgeon was pretty adamant about his office / lab doing the testing.  He wanted to make sure that the same lab did all the tests to eliminate possible inconsistencies between lab procedures that could alter the results.  That, or he’s looking for a couple of hundred bucks for the test and consultation.  🙂

Week 32 – Ho-hum

Yep.  Another quite week here in the cornfields.  At least as far as my recovery is concerned (no biology updates needed).  As far as work, well….

My boss was on vacation this week, so I was his designated back-up.  Between his scheduled meetings and my own, I spent from 7 AM to 3 PM in back to back meetings–even one that ran through lunch (11-1).  Ugh.

We also said good-bye to another coworker who opted to head to Seattle and a new opportunity there.

Maybe I should start a countdown…  7 weeks from today, I should have my next PSA results.  That’s not all that far off.

So that’s about it from here for now.

Week 31 – Bad Habits

Okay, I’m back in my bad habit of being late on my posting.  Last night was another farewell party for a coworker who’s decided to pursue another opportunity, so I wasn’t thinking much about updating my blog.

This is the third person (out of six in that role) that has left since the end of March.   I don’t know that I need to say anything more about what’s happening at work.

It actually was a pretty boring week here in the heartland.  Not much to report–not even on the biology front.  It makes me wonder if I shouldn’t switch to a monthly format.

I may hold off on that until my next PSA test which is scheduled for 4 August, with the results appointment on 11 August.  Assuming everything’s okay then, it may be time to just bring this journey to a close. 

Thoughts from the peanut gallery?  🙂

Week 30 – On Time!

Yea!  I remembered to update my blog on time this week!  Woo-hoo!  Of course, it helps that I’m sitting at home instead of in some airport terminal or on the road.

Yesterday I received a surprise call from the hospital I was in.  “Will you need financial assistance to pay off your $14,000 balance?”

“HUH?!?!?”

I’m still battling with the insurance and hospital over my second admission back in January.  Anthem says they didn’t do a pre-authorization for my trip to the emergency room, so therefore they’re not going to pay until they get the medical records to review.  I’ve been on the phone with the hospital several times over the last few months to try to get them to do that, and it hasn’t happened yet.

Then when I got home today, there was a bill in the mail from the X-ray service provider marked in big bold “PAST DUE.”  I had spoken with them and they put my account on hold the last time we talked, pending the resolution with the Anthem.

ARGGHHH.

And that’s all that I’ve got to say about that.

BIOLOGY AHEAD
One of the things that happened to me after the surgery was having a near constant irritation or itching in my urethra that gave me the sensation that I had to go to the bathroom nearly all the time. I’d make frequent trips to the bathroom even though my bladder was relatively empty. It got to be a bit annoying to say the least.

In the last week, that sensation has been greatly reduced for whatever reason. As a result, I’m running to the bathroom less and feeling much more confident as I move around. I hope that keeps up.