Day 1,769 – Getting Prepared

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

prostate-cancer-awareness-hero-806x307,0

Day 1,767 – A Few Rough Days

Wow. I’m back to the reason I started this blog: If I don’t write, my head will explode. Really.

After my initial meltdown over discovering the change in my PSA reading a week ago today (last Saturday), I was cruising through the last week pretty well.  Sure, it was on my mind, but only peripherally.

Thursday night, however, the thought of an increasing PSA came barreling into the forefront of my consciousness like a runaway freight train careening down a mountainside.  And it stayed there.  All. Freakin’. Night. It remained there all day Friday, too, and well into the wee hours of this morning when my body finally pulled the plug on my brain and said, “Enough! Sleep!!”

I had a flashback to the early days of this experience where I was so overcome by thoughts that I actually went to the doctor, exhausted, asking for assistance in trying to get some sleep.  I thought, “No! Not again! I don’t want to go through this again!”

No matter how hard I tried to re-focus on anything other than increasing PSAs yesterday, I kept coming back to it over and over again. Technically, I never came back to it, because I never actually left the thoughts behind. They were a constant presence.

Nothing worked, so I figured I’d tackle it head-on by breaking out Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer and researching more so that I would be better prepared for my urologist appointment on Tuesday. I’m glad that I did; I’m a little smarter this morning than I was last night.

I know that I’m getting way, way, way ahead of the facts here, but I learned that I’d be a good candidate for salvage radiation therapy (SRT) given my Gleason of 7 and being more than three years out since the increase in PSA began.  The only unknown is the PSA doubling time.  Of course, just like everything with prostate cancer, there are multiple schools of thought as to whether and when SRT should start.

But I also learned that it can take up to 8 years on average after the first sign of a PSA increase for the cancer to metastasize to the point where it can show up on a scan someplace.

At this point, the logical, analytical side of me understands that having a PSA of 0.05 ng/mL is still considered to be undetectable, and there’s no reason to panic. I’m generally okay with the number. What I’m not okay with is the movement in the numbers.

I get that most doctors believe that biochemical recurrence doesn’t occur until the PSA hits 0.2 ng/mL, with others believing that it’s better to wait until it’s 0.4 ng/mL, so 0.05 ng/mL isn’t close to either of those numbers.

I also get that emotions are fickle and often trump logic in a big way, and that’s what made me the most frustrated this week–my inability to control my emotional reaction as I would like to.  I really, really don’t want to be going back to Days 19 -22 again. Really.  But that uncontrollable emotional roller coaster is all part of the wonderful experience we call cancer.  [Sarcasm.] I hate roller coasters.

Tuesday’s urologist appointment can’t come quickly enough. Things that I’ll be asking:

  • What does going from a reading of <0.03 ng/mL for over 4 years to a reading of 0.05 ng/mL at 4 years and 8 months mean to you?
  • How and when are we going to confirm that this was either a blip or a real change?
  • If it is a real change, what’s the plan going forward?

Standby for a few random posts in the days and weeks ahead as we navigate through this new chapter in my journey.

[Oh. I had to break out my spreadsheets to calculate what day of this journey today is.]

prostate-cancer-awareness-hero-806x307,0

 

 

Month 58 – Welcome to PSA Anxiety

prostate-cancer-awareness-hero-806x307,0Blindsided.

That’s how I was this morning (I’m writing this on 5 September) when I hopped online to check on my PSA results.

Ever since my surgery in January 2011, my post-surgery PSAs always came back as <0.03 ng/mL; this time, it came back at 0.05 ng/mL. Shocked, stunned, heart-wrenched, panicked.  Yep, that was me, and then some.

Because my appointment with my urologist isn’t until 15 September, I immediately began searching for information online about increasing PSA levels after prostatectomies to learn what this meant.  Of course, I know the big picture: If PSAs go too high, “It’s baaack!” But what about from <0.03 to 0.05?? Is that significant?  If so, how so?

The Prostate Cancer Foundation and Johns Hopkins came to my rescue and calmed some of my frayed nerves.  I’m breathing again.

In the PCF article, “The Role of PSA,” they reminded me:

After prostatectomy, the PSA drops to “undetectable levels,” typically given as < 0.05 or < 0.1, depending on the lab. This is effectively 0, but by definition we can never be certain that there isn’t something there that we’re just not picking up.

It’s good to know that 0.05 ng/mL was still considered to be undetectable, and that recurrence was defined:

In the post-prostatectomy setting, the most widely accepted definition of a recurrence is a PSA > 0.2 ng/mL that is seen to be rising on at least two separate occasions at least two weeks apart and measured by the same lab.

There’s no need for me to be in full panic mode at the moment, but that doesn’t mean that I’m not concerned.  The most disconcerting thing for me is that there was movement in the PSA reading and that this may be the beginning of an upward trend.  Or it may simply be a blip in the readings. I’m doing my best to not let emotions overtake facts.

Johns Hopkins has a great article about the topic that also helped me calm down after reading it:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

I’m really anxious to talk with my urologist about the plan going forward, and waiting the ten days between now and then will be difficult.

I would hope–and push–for another PSA test in a month or so and then, depending on its results, stepped up frequency of testing if it’s at 0.05 ng/mL or higher.  That, of course, will open the door to the wonderful world of PSA Anxiety: Test, wait, worry; test, wait, worry; test, wait, worry.

I remember how anxious I was going in for my first PSA test after the surgery and, over the last 4 years and 8 months, that anxiety dwindled.  For this week’s test, it was just a matter of routine.  I was excited to be able to call myself “cancer-free” just shy of the five year mark. Now this happened, calling that five year milestone into question (at least in my mind; perhaps not in that of my urologist).  Silly me.

I was hoping that the cancer cloud hanging over my head at this point was withering away to a thin, wispy little cirrus cloud.  Instead, this morning, I got this:

448d4-t-storm

Once cancer is introduced into your vocabulary, it’s there for good.  Period.

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.

*     *     *

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 50 – Four Years Cancer-free & Cancer Death Rates

Okay, I’m the first to admit, that’s an odd combination of topics in the title.

First, the good news: My PSA remains undetectable four years and three days after that prostate was plucked from my body.  My birthday was this week, so still being cancer-free is a great birthday present.

I got my latest results online this afternoon, and I have an appointment with my urologist on Tuesday.  We’ll see what she has to say about the frequency of monitoring.  This result was at an eight-month interval; prior to that, I was being checked every six months.  Who knows… Maybe she’ll say come back in a year.  (Honestly, I’m not sure how I would feel about that.)

Aside from that, my sexual function issues and mild stress continence remain the same as before–no real changes to my “new normal.”  I’m generally okay with that.

Oh.  I haven’t had time to create it yet, but look for a new page on the blog, “Life After Radical Prostatectomy – 48 Months Later” coming soon.

*     *     *

As you can tell from my last post, I’m focusing a bit less on the physical aspects and a little more on the emotional aspects of being four years out.  I never really threw myself into the dating pool after the surgery, because I had it in my mind that I was “damaged goods” and that no one would want to deal with that.  It’s taken me quite a while to beat that thought into submission, and I’m ready to try.  Who knows what will happen.  I may get rejected 9 times out of 10 once the person learns of my issues, but it’s the one person who says that it’s not a problem that will likely be the best one to hang onto.

So dating is one of my New Year’s resolutions, and the other is to lose some weight.  I really think that’s been a contributing factor in some of my stress incontinence issues.  Since 3 December 2014, I’ve lost 11.5 lbs / 5,2 kg.  Not bad considering the amount of food thrown at me during the holidays.  Will power.

*     *     *

On a different note, the Prostate Cancer Foundation recently published a story talking about the decline in cancer death rates over the last 20 years.

Jemal also noted that during the past two decades, deaths from colon and prostate cancer have been nearly cut in half, and breast cancer deaths have dropped by a third.

“Really, it’s due to screening, as well as improved treatment,” he said. “It’s really remarkable.”

One thing that will be interesting to see is how the death rates are affected by the recent changes in prostate cancer screening guidelines.  I hope that there’s not a reversal in that trend as a result.

Month 42 – PSA Results

It’s funny.

I didn’t even think much of getting my blood drawn for my six month PSA test on 30 April.  Just went in, got stuck, and went on my merry way.  No biggie.

Or so I thought.

Afterwards, I was checking my online health record twice a day looking for the results.  Hurry up and wait.  I guess modern technology has all made us wanting instant gratification, and when we don’t get it, we get upset.

Once a cancer patient, there’s always that little cloud of “What if?” hanging over your head.  I don’t get nearly as worked up about waiting for the results as I did for my first post-surgery six month check, but it’s still there.

So the results?  Still undetectable!  🙂

I actually have my appointment with my urologist on Tuesday to officially go over the results.  I’m sure we’ll talk about incontinence and sexual function, too.  [Edit 5/16/14: The urologist doesn’t want to see me for 8 months instead of the usual 6 months.  Next PSA: January 2015.]

Oh.  And Happy Mother’s Day to moms everywhere–living and departed.

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Note the new contact form to make it easier to shoot me an email if you have any questions about my experiences.

 

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.

*    *     *
Finally, for those readers in the U.S. about to observe Thanksgiving, I hope you have a great holiday with family and friends.

Special Post – PSA Results

My PSA remains <0.01 (undetectable) 28 months after my surgery.  Translation: Still cancer-free.  Woo-hoo!

I asked my urologist about the recent studies that came out and the AUA’s recommendations for PSA tests going forward, and his reaction was interesting.  I’m not sure that he’s fully convinced that reducing screening is the right thing to do.  Still, he seemed open to the new thought process on the issue.

If anything, it told me that this discussion is far from over.

Month 30 – Genetic Test & PSA Guidance

This will be a long post because there have been several important stories in the news about prostate cancer recently.

*    *    *

The first report talks about a new genetic test that will better classify the aggressiveness of prostate cancer, and that will allow patients and their physicians to better guide their treatment decision.  This progress is quite exciting.

New Test May Help Guide Prostate Cancer Treatment 
(Full text below in case article gets deleted by NBC News.)

Being able to know the aggressiveness of the cancer may give men on active surveillance greater peace of mind, and it may allow those who are recently diagnosed to choose active surveillance as their treatment option, avoiding the potential risks of long-term, significant side effects that can come with radiation or surgery.

Of course, the test is new and unproven in the real world yet.  Still, it is a step in the right direction.

The second article talks about the American Urological Association’s (AUA) change in guidelines concerning PSA testing, making the testing less frequent.

Urologists Recommend Less PSA Testing for Prostate Cancer
(Full text below in case article gets deleted by NPR.)

Funny that this article about PSA screenings would come out just before my next post-operative PSA screening (scheduled to get the results on 20 May).  I’ll have to ask my urologist what his thoughts are on all this.

*    *    *

What do I think about all of this?  Well, I’m glad that there is more and more research that is bringing the diagnosis and treatment of prostate cancer into better focus.  Don’t get me wrong, I still think there’s a long way to go, and if prostate cancer research had half the attention and support that breast cancer research does, we could make so much more progress at a more rapid pace.

What would I do if I were diagnosed with prostate cancer today given these and other recent developments in prostate cancer diagnosis, classification, and treatment?  Would I have skipped the radical prostatectomy?  I don’t know.

What likely would have happened is that I would have slowed the decision-making process down to allow for more time for research and reflection.

When you hear “cancer” for the first time, your immediate response is to say, “Get rid of it!”  That’s they way we’ve been conditioned all of our lives.  But now with these advances, we’re getting to the point where the initial response can be, “Can I live with it?”  But it’s going to take researchers and the medical community considerable time, effort, and facts to convince us that “Can I live with it?” should be the appropriate response.

*     *     *
Pricey new test may help guide prostate cancer treatment
By MARILYNN MARCHIONE
updated 5/8/2013 9:55:14 AM ET 2013-05-08T13:55:14
A new genetic test to gauge the aggressiveness of prostate cancer may help tens of thousands of men each year decide whether they need to treat their cancer right away or can safely monitor it.
The new test, which goes on sale Wednesday, joins another one that recently came on the market. Both analyze multiple genes in a biopsy sample and give a score for aggressiveness, similar to tests used now for certain breast and colon cancers.
Doctors say tests like these have the potential to curb a major problem in cancer care — overtreatment. Prostate tumors usually grow so slowly they will never threaten a man’s life, but some prove fatal and there is no reliable way now to tell which ones will. Treatment with surgery, radiation or hormone blockers isn’t needed in most cases and can cause impotence or incontinence, yet most men are afraid to skip it.
“We’re not giving patients enough information to make their decision,” said Dr. Peter Carroll, chairman of urology at the University of California, San Francisco. “You can shop for a toaster” better than for prostate treatment, he said.
A study he led of the newest test — the Oncotype DX Genomic Prostate Score — is set for discussion Wednesday at an American Urological Association meeting in San Diego.
The results suggest the test could triple the number of men thought to be at such low risk for aggressive disease that monitoring is a clearly safe option. Conversely, the test also suggested some tumors were more aggressive than doctors had believed.
Independent experts say such a test is desperately needed but that it’s unclear how much information this one adds or whether it will be enough to persuade men with low-risk tumors to forgo treatment, and treat it only if it gets worse. Only 10 percent who are candidates for monitoring choose it now.
“The question is, what’s the magnitude of difference that would change the patient’s mind?” said Dr. Bruce Roth, a cancer specialist at Washington University in St. Louis.
One man may view a 15 percent chance that his tumor is aggressive as low risk “but someone else might say, ‘Oh my God, let’s set the surgery up tomorrow,'” he said. “I don’t think it’s a slam dunk.”
Also unknown: Will insurers pay for the expensive test without evidence it leads to better care or saves lives?
The newest test was developed by Genomic Health Inc., which has sold a similar one for breast cancer since 2004. Doctors at first were leery of it until studies in more groups of women proved its value, and the same may happen with the prostate test, said Dr. Len Lichtenfeld, the American Cancer Society’s deputy chief medical officer.
The company will charge $3,820 for the prostate test and says it can save money by avoiding costlier, unnecessary treatment. Another test for assessing prostate cancer risk that came out last summer — Prolaris by Myriad Genetics Inc. — sells for $3,400.
Both companies can sell the tests without Food and Drug Administration approval under separate rules that govern lab diagnostics. Myriad Genetics has published nine studies on Prolaris involving more than 3,000 patients. Genomic Health has not published any results on the prostate test, another thing that makes doctors wary. Yet it has a track record from its breast cancer test.
About 240,000 men in the U.S. are diagnosed with prostate cancer each year, and about half are classified as low risk using current methods. Doctors now base risk estimates on factors such as a man’s age and how aggressive cells look from biopsies that give 12 to 14 tissue samples. But tumors often are spread out and vary from one spot to the other.
“Unless you can be sure your biopsy has hit the most aggressive part that’s in the prostate, you can’t be sure” how accurate your risk estimate is, explained Dr. Eric Klein, chief of urology at the Cleveland Clinic, who led early development of the Oncotype prostate cancer test.
For one study, researchers used prostates removed from 440 men. They measured the activity of hundreds of genes thought to be involved in whether the cancer spread beyond the prostate or proved fatal. A second study of biopsies from 167 patients narrowed it down to 81 genes, and researchers picked 17 that seemed to predict aggressiveness no matter the location in the tumor.
A third study used single needle-biopsy samples from 395 UCSF patients scheduled to have their prostates removed. The gene test accurately predicted the aggressiveness of their cancer once doctors were able to see the whole prostate after surgery.
Using one current method, 37 of the 395 men would have been called very low risk and good candidates for monitoring. Adding the gene test put 100 men into that category, said another study leader, Dr. Matthew Cooperberg of UCSF. The gene test shifted about half of the men into either a lower or a higher risk category.
“It went both ways — that was the remarkable thing. In any category of risk it added independent information compared to the standard criteria we use today,” Carroll said. “More work needs to be done, but, in my opinion, this is a very good start.”
However, Dr. Kevin McVary, chairman of urology at Southern Illinois University School of Medicine and a spokesman for the Urological Association, said the test must be validated in more men before it can be widely used.
“It’s not there yet,” he said.
UCSF just got a federal grant to see how men choose treatments and whether this test might sway them.
“We throw all these numbers at them. Are they really going to make a better decision?” Cooperberg said.
Dean Smith, 60, a retired marketing executive from Mill Valley, Calif., is following his doctor’s advice to monitor the cancer he was diagnosed with in March. He said a gene test may have made him more comfortable with that decision.
At least six of his friends suffered side effects ranging from urinary leakage to inability to have sex after having their prostates removed.
“I would suspect that having cancer and having to live with it would be very difficult for them,” but it doesn’t bother him, Smith said. “I will die from something other than prostate cancer, I guarantee you.”
*    *     *

Here’s a link to the American Urological Association’s latest guidelines for the detection of prostate cancer:

Detection of Prostate Cancer

(I’ve added a link to the AUA in the “Helpful Links” section, too.)

Urologists Recommend Less PSA Testing For Prostate Cancer

by Scott Hensley

May 03, 2013 2:49 PM

Terry Dyroff, of Silver Spring, Md., had a PSA blood test that led to a prostate biopsy. The biopsy found no cancer but did give him a life-threatening infection.

The men and women who often treat prostate cancer are now recommending that the blood test commonly used to screen for it should be given a lot less often.

The American Urological Association released new guidelines that, if they’re heeded, would dramatically reduce the ranks of men who would be candidates for PSA testing.
The prostate-specific antigen test can catch cancer early, but it frequently gives false alarms or identifies cancers that don’t require treatment.
So the urology specialists now say this about screening for prostate cancer:
  • Men under 40 shouldn’t get PSA tests.
  • Men ages 40 to 50 shouldn’t be tested, if they’re at average risk for the disease. Those at higher risk — such as African-American men and those with a family history of prostate cancer — should talk it over with their doctors.
  • For men 55 to 69, the test makes the most sense. The AUA panel recommends a shared decision by doctors and patient about the test. Once testing begins, the panel says it should be given every two years, rather than annually.
Finally, the group says men over 70 and with less than a 10 to 15 year life expectancy can probably skip the test.
Johns Hopkins urologist H. Ballentine Carter, chair of the guideline panel, acknowledged to USA Today that some men and doctors may be hesitant about less screening.

But the evidence reviewed by the panel supports the stance. PSA screening can prevent about 1 death from prostate cancer for every 1,000 men screened over a decade, the guideline says. But there are dangers from testing, including false positives and side effects from subsequent testing and treatment, including infections, impotence and incontinence.

“The public is very enthusiastic about screening, partly because of our messaging,” Carter told USA Today. “The idea that screening delivers benefits may have been overexaggerated.”

Almost a year ago the influential U.S. Preventive Services Task Force issued its own guideline saying healthy men should no longer get routine PSA tests.

The urologists disagreed then — and now. But the conversation has now shifted to how few men should get tested instead of how many.

Update at 3:55 p.m. ET: Dr. Otis Brawley, the American Cancer Society’s chief medical officer, and a longstanding critic of PSA testing, praised the urology group’s work in an email to Shots:

“I believe that the American Urological Association should be commended for a very careful evidentiary review and developing a statement that is truly consistent with the state of the science.

“The past 20 years represents some of the worst in public health in that we widely disseminated a screening intervention before adequately assessing it. I welcome any effort to explain to men the uncertainty, potential harms, and potential benefits of PSA screening. Use of this test should be a decision made by the individual patient in collaboration with his healthcare provider. The American Urological Association statement combined with the American College of Physicians statement of last month should mean the end of mass screening for prostate cancer.

“Now the American Cancer Society and five other independent organizations are calling for shared or informed decision making regarding use of this test.”