Category: Incontinence

Day 2,747 – Side Effects of Salvage Radiation Therapy

On By DanIn Incontinence, Prostate Cancer, Recurrence, Side Effects6 Comments

During my conversation with the radiation oncologist on Thursday, a big part of the discussion was on the long-term side effects of salvage radiation therapy. He stated that the probability of long-term urinary or rectal side effects was “in the single digits.” That reinforced my own understanding, but after the meeting, it occurred to me that we didn’t talk about the severity of those side effects in any detail.

I fired off an email to him on Friday asking, in essence, of those with long-term urinary and rectal side effects, what percent of those are mild, moderate, or severe?

He replied in a matter of hours and said that he couldn’t respond using the terminology in my email (I gave him definitions of what each of those meant in my own mind). Instead, he referred me to the Common Terminology Criteria for Adverse Events (CTCAE) used in standardizing terminology used in research across the globe. He referred me to “cystitis” and “proctitis” to see their definitions for grades 1 through 5. (Grade 1 was the least impactful; Grade 5 was typically death.)

The doctor also shared side effect data directly pulled from the manuscripts of 3 major randomized trials in post-prostatectomy patients. He didn’t provide the links—just the text—so I used the Google machine to come up with the links/articles. It’s interesting to note that all three are focused more on adjuvant radiation therapy than salvage therapy, but I suppose getting zapped for one is pretty much the same as getting zapped for the other.

 

Bolla et al, Lancet, Vol 366, Aug 2005

Late effects of rectal and bladder grade 3 or higher were only slightly increased in the XRT group vs. the observation group: 4.2% vs. 2.6%.

Wiegel et al, JCO, 2009

There was only one event of grade 3 toxicity (bladder). No grade 4 events were recorded. There were three events (2%) for grade 2 genitourinary adverse effects in the RT arm compared with none in the other arms. In addition, two grade 2 GI adverse effects (1.4%) were seen in the RT arm compared with none in the other arms.

It was interesting to note that the doctor omitted the second half of that paragraph from the original study:

Altogether, the cumulative rate of adverse effects for bladder and rectum (≥ grade 1) was 21.9% in the RT arm and 3.7% in the wait-and-see group (P < .0001; Appendix Fig A2, online only). One urethral stricture occurred in arm A and two occurred in arm B. Incontinence was not assessed, because it is not mentioned in the RTOG/EORTC scoring scheme.

Thompson et al, J Urology, 2009

We conducted a companion quality of life study in 217 men randomized to S8794 with assessments at baseline, 6 weeks, 6 months and annually for 5 years. A strength of this analysis was the inclusion of a 6-week assessment, designed to capture the side effects of radiotherapy at their peak. Tenderness and urgency of bowel movements were significantly more common at the 6-week point (47% vs 5%) in the radiotherapy group but by 2 years there was little difference between the groups. Urinary frequency was more commonly seen in the radiation group but there was no difference in the rate of erectile dysfunction (common in both groups) between groups. Global assessment of quality of life, while initially worse in the adjuvant radiotherapy group, became similar by year 2 and was increasingly superior in the radiotherapy group during the following 3 years. This gradual switch toward a superior quality of life in the adjuvant radiotherapy group should be examined in the context of the increased rates of PSA recurrence, salvage radiotherapy and hormonal therapy in the observation group, all of which have negative impacts on quality of life.

I’ve only skimmed the full studies at the moment, and I’ll come back to them in a day or two. On the surface, however, the numbers have eased my fear of long-term side effects a tad.

Right now, I just need to get away from the topic for a few hours and have some fun. Time to go out and play…

Stay tuned.

Day 2,745 – Conversation with the R.O.

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, Recurrence, Sexual Function, Side Effects20 Comments

When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.

In a nutshell, his recommendation was to start salvage radiation therapy.

The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:

  • He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
  • He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
  • He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
  • Continued surveillance is a viable option for me given my numbers and PSA doubling time.
  • We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
  • He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
  • If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
  • Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
  • With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
  • He was open to waiting until the August PSA results to see what they revealed before making a decision.

It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.

I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.

What’s next for me? A ton of thinking, reflecting, and reevaluating.

Enough for now. I’m spent.

Life After Radical Prostatectomy: 84 Months Later

On By DanIn Incontinence, Life After Prostatectomy, Prostate Cancer, Recurrence, Sexual Function12 Comments

So it’s been 84 months since my radical prostatectomy. How am I doing?

Status

With my PSA increasing steadily over the last two years to the point where it’s now at 0.10 ng/ml, it appears that I’m on the path to recurrence. Needless to say, that’s not the outcome that I had in mind when I started this journey, but my surgeon did warn that approximately 20% of prostatectomy patients have the cancer return.

Emotions

My visit to the doctor in December went just as I expected it would, with one exception. I left the office feeling as though the wind had been knocked out of me. This whole notion of recurrence took on a whole new meaning when the doctor suggested that we’re going to have to start thinking about radiation in the future. It’s becoming real again. Since then, I’ve been doing okay. Not great. Not horrible. Okay.

Incontinence

I remain “dry” 98% of the time. There have been a few very long days at work where my body tired and, combined with the physical exertion at the end of the day, I was a bit more prone to leak. Rarely do I need to get up to go to the bathroom in the middle of the night—I can last 6-7 hours most nights.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Summary

Recurrence is the fear of every cancer patient because now your options become more limited and the costs of dealing with it—emotional, physical, and financial—begin to increase significantly. It’s time that I start seriously preparing for the trip down this fork in the road. The good news is that I have time with my PSA doubling time as long as it is.

Month 59 – Resigned

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, RecurrenceLeave a comment

It’s been an interesting month, that’s for sure.

The emotional roller coaster ride of learning that my PSA moved upward has come to an end for now. In fact, I’ve pretty much resigned myself to the fact that it is what it is, and there’s little that I can do about it other than wait.

Have I resigned myself to the idea that the cancer is coming back? I don’t know. Perhaps. I certainly don’t want it to come back, but I’m coming to terms with the fact that it’s within the realm of possibility in a way that it hadn’t been before the increase in PSA. If I’ve resigned myself to anything, it’s that I’ll have plenty of PSA tests going forward, along with the associated anxiety that comes with each.

I remember my surgeon telling me there’s an 80% chance that I’ll be cancer-free at 10 years, so that means that there’s a 20% chance that it will be back. For some reason, my gut instincts are telling me that I’ll be in that 20%. I don’t know why. Perhaps it goes back to my first solo trip abroad.

I was flying from the United States to Japan as a midshipman going on my summer training cruise, and I was flying on a military charter that landed at Yokota Air Force Base. On arrival, they told us that 20% of us had been selected at random to go through a thorough customs inspection. I was one of the 20%. They dumped my duffle bag’s entire contents onto a nice stainless steel table, went through everything, and told me to repack it in less than 5 minutes. Just my luck.

I know. A silly comparison. Still, it’s how my luck runs sometimes. December will be an indicator as to whether that rule will apply or not.

I’ve been battling an early season cold for about two weeks now, and it just doesn’t seem to want to let go. The stress incontinence was remarkably good during the first week, but when the cold moved into my chest the second week, I went back into pads for protection as I coughed and coughed.

Perhaps the stress of the PSA results weakened my system a tad, but most likely, it’s just that I work in a museum where lots and lots of people–especially kids–come through.  Oh well.

DJTPC

Life After Radical Prostatectomy: 54 Months Later

On By DanIn Incontinence, Life After Prostatectomy, Prostate Cancer, Sexual Function, Side Effects2 Comments

So it’s been four and a half years since my radical prostatectomy.  How am I doing?  (Remember, what follows is a graphic description, so proceed only if you want to read…)
Continue reading “Life After Radical Prostatectomy: 54 Months Later” →

Month 55 – Sick of Being Sick

On By DanIn Incontinence, Prostate CancerLeave a comment

I hate getting sick.

The week before Memorial Day weekend, I came down with a nasty end-of-spring head cold that kept me home from work a couple of days.  It also put me back into incontinence pads.

Heavy coughing certainly increased the likelihood that I would have stress incontinence episodes, so I started wearing pads as insurance.  I’m glad that I did, because several times they were definitely needed.  I will admit, however, that I did better than I expected in many cases, and I attribute that to my recent weight loss.

The one thing that I’ve had difficulty controlling is stress incontinence while I’m standing.  If I’m standing or walking when I sneeze or cough, there’s a much greater likelihood of leakage, no matter how hard I try to control my pelvic floor muscles.  That’s where the pads came in really handy.

The unfortunate thing with this head cold is that, even though the worst of it lasted only a couple of days, the nagging cough lingered for a good week and a half after.  Ugh.

The moral of this story: Keep pads on hand for those unexpected times when you may need them.

This recent Prostate Cancer Foundation article, Excess Weight Linked to Worse Prostate Cancer Diagnosis, reinforces my will to keep losing weight.  Sure, it may be a case of me closing the barn door after the horses have escaped, but getting to a healthy weight can only be a good thing in the long run for a whole host of reasons.

 

 

Month 54 – Walking for Better Outcomes

On By DanIn Incontinence, Prostate Cancer, Research, Sexual Function, Side EffectsLeave a comment

I came across this article, Walking Boosts Outcomes for Prostate Cancer Survivors, on the Prostate Cancer Foundation website a few weeks ago, and it struck a chord with me.

When I began my weight loss regimen back in December, I made a concerted effort to increase my physical activity, mainly in the form of walking.  I’m not close to the level of activity that is talked about in this article, but it has helped with losing weight and with mitigating some of the minor side effects I had been experiencing post-surgery.

I know it’s only anecdotal observation on my part, but I feel that the number of stress incontinence episodes are down and, when I do have them, they’re not as significant as they once were.  I’d like to say, too, that it’s improved my erectile dysfunction, but, if I’m being honest, I’m not so sure that it has.  If it has, it’s only been slightly.  At least things aren’t getting worse.

Month 52 – Less PSA Testing; Rise in Prostate Cancer

On By DanIn Incontinence, Prostate Cancer, Research, Sexual Function, Side EffectsLeave a comment

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 51 – Weight, Incontinence & New Screening

On By DanIn Incontinence, Prostate Cancer, Research, Side EffectsLeave a comment

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).

*     *     *

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 By DanIn Incontinence, Prostate Cancer, Side EffectsLeave a comment

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.