Day 2,827 – Q&A with the Radiation Oncologist

Just a quick update…

I shared my last PSA results with my radiation oncologist via email yesterday to see if the results would influence his treatment recommendation.

He stated that a stable PSA is “great news” and that “continuing to monitor at this point is a very reasonable approach.” I also asked if a four-month PSA test frequency was appropriate or if we should look at increasing the frequency. With my numbers, he said that a three to six month frequency was most common, so sticking to four months was fine.

I also asked for clarification about sexual function after salvage radiation therapy. For some reason, I had it in my mind that from our conversation during the initial consult, he said that zapping me would likely damage my one remaining nerve bundle to the point that sexual function would be a thing of the past. He corrected me.

He said that post-radiation function is highly dependent on pre-radiation function. There will likely be some degradation, but not necessarily a complete loss of function as I had somehow lodged in my brain.

He closed the conversation by saying, “Hopefully your PSA will continue to behave itself and we can worry about that [sexual function] down the road.”

Needless to say, I was quite pleased with those responses.

We’ll see what the urologist says on the 21st (I put the wrong date in my last post) but, for now, I’m fine with doing nothing until my next PSA test in December.

 

Life After Radical Prostatectomy: 90 Months Later

So it’s been 90 months since my radical prostatectomy. How am I doing?

Status

With a continuously rising PSA, it’s time to face that reality that I have a biochemical recurrence and the cancer is back. Now it’s just a matter of trying to figure out what to do about it. Far easier said than done.

Emotions

Whether consciously or subconsciously, I came to terms with the idea of recurrence a while ago. What I’m really struggling with right now is how I’m going to make the decision as to whether to proceed with salvage radiation therapy now, later, or even at all. I have no idea how I’m going to make that choice and be satisfied that it’s the right one. When I chose surgery and my surgeon after my initial diagnosis, I was completely satisfied with my choice, had no regrets, and never second-guessed it once. I’m lacking that confidence right now.

Incontinence

On the whole, I’m still doing well with incontinence—well into the mid-90% dry range. I have noticed, however, a few more unexpected minor leaks popping up than what I’m used to. That’s concerning, especially if I choose salvage radiation therapy and its potential side effects.

The leaks usually happen when I’m more physically active (especially lifting something heavy), so if I know I have that kind of activity planned in my day, I’ll throw a thin pad in my underwear for good measure.

Sexual Function

It seems that my ability to achieve decent erections has regressed a little, too. I’m probably more in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Of course, if I have salvage radiation therapy, those numbers will likely drop significantly, especially because only one nerve bundle was left behind.

Summary

My first ever visit to a radiation oncologist in May was a defining moment for me. It certainly took its emotional and physical toll from me. I was so mentally and physically exhausted from the research and constant thoughts that I just had to stop and step away. I know I have a major decision ahead of me at some point in the future but, for now, I’m content with not thinking about it at all at the moment.

I know I’ll get snapped back into reality when I go for my next PSA test on 1 August 2018.

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

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

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 64 – Rethinking How Aggressively to Treat Cancer

Scrolling through my Facebook feed, I came across this interesting article, Gentler attack on cancer may mean that we can live with it longer, about taking a less aggressive approach to treating cancer in order to live longer. The theory is that, if you try to kill every cancer cell with a very aggressive initial treatment, any remaining cancer cells become resistant to further treatment and can be more problematic. If you take a slower initial approach to just contain the existing cancer cells, you may be able to extend your life.

I also came across this article, ASCO Endorses Active Surveillance for Prostate Cancerrecommending active surveillance over immediate treatment for those with low-risk prostate cancer (low-risk being defined as a Gleason of 6 or less). There appear to be some common sense reality checks that allow for exceptions to their recommendation as well. It’s an interesting read.


On my own front, I’ve been doing well emotionally knowing that my next PSA test is coming up soon. My appointment with the urologist is on 19 April 2016, but I’ll probably get the blood drawn when I’m scheduled to be in the clinic for another meeting on 6 April (my weight-loss group—81 lbs./36.7 kg lost!). That means I can probably get my results online around the 9th or 10th and, with luck, they’ll still be in the 0.04–0.05 ng/ml range (or less).

Speaking of luck, my streak of bad luck in 2016 continued. On my way home from my new job on my second week there, I was cut off on the highway by some yahoo not paying attention, and I had to stand on the brakes to avoid hitting him. Sadly, the gal behind me didn’t react quickly enough and rear-ended me to the tune of $2,500 USD in damages. <Sigh> Thankfully, insurance is covering the entire cost, as it wasn’t my fault—my deductible was waived. Of course, the guy who caused the accident drove off into the sunset without stopping.

c76ae-cautionsymbolsmall

Biology Ahead!

Wow. I haven’t used that little warning symbol in a long, long time, but there is something to report (I meant to put it in my Life After Prostatectomy–60 Months Later post, but forgot).

One of the potential side effects of a prostatectomy is penile shrinkage. I’d say that I had noticed the change, but interestingly, things seem to have returned to pre-surgery size in the last few months. That’s something to discuss with my urologist in April (not that I’m complaining—just to see if it’s common for that to happen, and if it really takes five years for it to happen).

Life After Radical Prostatectomy: 54 Months Later

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 54 – Walking for Better Outcomes

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

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 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 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.”