Tag: treatment decisions

Study finds prostate cancer treatment can wait for most men

On By DanIn Prostate Cancer, Treatment2 Comments

I saw this on the national news last night and thought the results of the study were interesting:

The study directly compared the three approaches — surgery to remove tumors, radiation treatment and monitoring. Most prostate cancer grows slowly, so it takes many years to look at the disease’s outcomes.


“There was no difference in prostate cancer mortality at 15 years between the groups,” Loeb said. And prostate cancer survival for all three groups was high — 97% regardless of treatment approach. “That’s also very good news.”

That’s going to make a whole lot of guys go, “Huh?!?” The science may say it’s okay to do nothing, but once you hear “cancer,” it will be extraordinarily difficult to not want to do something more proactive. It will be interesting to see if guys stop or cut back on getting screened, and we wind up with more men being diagnosed with advanced prostate cancer instead of localized prostate cancer because they delayed screening.

https://www.nbcnews.com/news/us-news/study-finds-prostate-cancer-treatment-can-wait-men-rcna74512

Here is the New England Journal of Medicine article (I didn’t sign up for full access):

https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

A Decade Living with Prostate Cancer

On By DanIn Prostate Cancer9 Comments

One decade. 522 weeks. 3,654 days. 87,696 hours.

That’s how long I’ve been living with prostate cancer since being diagnosed on 11 November 2010. Of course, the operative phrase is “living with.”

The diagnosis was terrifying. The treatment decision was excruciating and exhausting. The surgery recovery was longer than expected with some complications along the way. The long-term side effects have been what were advertised at the beginning.

On the positive side, there were 54 months of undetectable PSA results to indicate the surgery had done the trick. Or so we thought.

When my first detectable PSA test came in five years ago, I was even more terrified and panicked than when I was initially diagnosed. It meant that my first line of defense had failed. Now I had fewer options to control or rid me of the cancer available to me.

My doctors convinced me that there was no need for immediate panic and that we could and should monitor my PSA before considering any action. My PSA fluctuated up and down, but had a slow but steady upward trend.

As my PSA continued to climb—passing several markers that are normally used to consider starting salvage radiation therapy—I continued to do nothing. I’ve been pretty steadfast in my reluctance to start zapping without knowing where the cancer is, and even some of the best new imaging techniques won’t pick up the cancer at my PSA levels.

With a PSA doubling time of four years, I’m comfortable with that decision. Heck. I’m still here five years after that initial detectable PSA reading, and ten years after my initial diagnosis.

We may find out a little more about my future direction next month when I go for my next PSA test just before Christmas. As I’ve learned (albeit slowly) over the last decade, don’t get too worked up about the results until you have them in hand. It just doesn’t do any good to speculate about the unknown. January will tell me whether I can continue the status quo or it’s finally time to take action.

If you asked me ten years ago when I started this blog (to keep family and friends informed in my pre-Facebook days) that I would still be doing this ten years later, I would have said you’re nuts. But here I am.

I’ve tried to inform and educate others about prostate cancer along the way, and to give insights to the newly diagnosed as to what you may encounter two, three, five, or ten years down the road. All the guys I spoke with pre-surgery had, themselves, only been less than a year out from their own surgery date. They had no long-term post-surgery insights to offer to me.

I’ve tried to inject a little dose of reality to those who, just like me, gleefully declared themselves to be “cancer-free” after a few undetectable PSA tests. “Not so fast.” My story is a reminder that there can be unexpected plot twists, even in the later chapters.

Along the way, I’ve met some wonderfully supportive men who have been through their own journey—some just virtually and some in person. Sadly, three of them have lost their battle with prostate cancer and they’re sorely missed.

It’s been a decade of living with prostate cancer. Living with. Let’s hope that I’m still around to write the blog post, “Two Decades Living with Prostate Cancer.”

Month 116 – Cancer Treatment Decisions

On By DanIn Prostate Cancer, Treatment16 Comments

One of my regular readers of this blog and I have amazingly similar stories when it comes to our diagnosis and treatment. We were both diagnosed around the same age, our PSA levels were quite close to each other, and we both opted for surgery. Both of us had undetectable PSAs well after the surgery—until we didn’t. His PSA became detectable around the three year point, and mine became detectable at a few months shy of five years.

He opted to begin salvage radiation therapy (SRT) along with androgen deprivation therapy (ADT) when his PSA hit 0.08 ng/ml. And, if you’ve been following my blog for any amount of time, you already know that I’ve been punting that decision after nearly every PSA test, with my PSA bouncing around in the 0.14-0.16 ng/ml range without seeking SRT or ADT yet.

Who made the right decision?

Both of us.

When cancer is initially introduced into your vocabulary—and even long after—you’ll be faced with a myriad of decisions to make. Is treatment warranted, or can I go on active surveillance? If treatment is needed, do I opt for surgery, radiation, or one of the newer methods available? Which doctor has the most experience? Which hospital has the right equipment? The list goes on and on.

Many of those same questions are applicable in the case of recurrence, too.

When it comes time to make some of those decisions, remember first and foremost that it’s your body, your family, and your circumstances. You—and not anyone else—have the final say.

Do your research using reliable, trusted sources and don’t be afraid to ask the doctor questions or call them out on something you’re not comfortable with. Seek multiple opinions from the doctors that could provide the different treatment options to you (keeping in mind, of course, that some may push their own specialty over others).

Talk to other patients or read their silly blogs to see what their experience has been, knowing that each individual cancer case is unique and will not apply directly to your own situation.

Don’t let the words “prostate cancer” scare you into acting immediately. Unless your Gleason score is an 8 or 9, you do have a bit of time to do this research and consulting with different specialists. I made my decision to have surgery rather quickly and never consulted with a radiation oncologist to see if that would be a viable first treatment option for me. Do I regret that? No. But, with a Gleason 6, I should have slowed things down and have had the meeting anyway.

One of the options that is often overlooked is to do nothing. Okay, it’s not exactly doing nothing—you’ll definitely want to be on active surveillance—but you don’t have to leap right into a treatment option if your cancer is  low grade / not aggressive. My sense is that more and more doctors are beginning to embrace that approach to avoid over-treatment.

That brings me to my final point. Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.

If my PSA continues to slowly increase and, at some point my body scan lights up like a Christmas tree because I haven’t started SRT, I’ll probably curse like the sailor I once was and say, “I knew this was a possibility. What’s next?” But I’ll also know that I will have had six or seven or more years of high quality of life without any short or long-term side effects from SRT and/or ADT, and that is of great importance to me. As much science as there is in the treatment of prostate cancer, in the end, it’s an educated crap shoot.

Who made the correct decision?

Both of us. One of us. Neither of us.

Time will tell.

Stay Well! Wear A Mask! Wash Your Hands! Stay Home!

Day 3,270 – Doctor Visit

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence12 Comments

Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.

The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.

He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.

One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.

I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”

We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.

On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.

It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?

Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)

The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.

That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.

Prostate cancer is not an “easy cancer.” Far from it.

Day 2,663 – Research Induced Stress

On By DanIn Emotional Aspects, Prostate Cancer6 Comments

Finally! I’m so glad this past week is over. It was emotionally one of the roughest weeks I’ve had in a long time.

It all started last weekend, which was a three day holiday weekend for those of us here in the U.S. Because I want to be as prepared as possible going into my April appointment with my doctor, I spent two of the three days continuing to research all sorts of things that will help me have a better informed discussion.

I posted a question in an online support group under the heading, “Recurrent Prostate Cancer and Salvage Radiation Therapy.” What followed were some very thoughtful sharing of stories from other patients who had been down that path already. But there was also a very robust discussion between a retired physician, himself a prostate cancer patient, and a long-time prostate cancer patient advocate. Both had some great insights—sometimes conflicting—and both connected me to other resources.

I’ll spare the full-blown details, but what stressed me out last weekend—and lasted well into the week—was the notion that, despite the plethora of information out there about recurrent prostate cancer and treatment options, too much of it is conflicting or inconclusive, and there’s no clear answer for me.

When you know that you’re going to have to make a decision that could impact the length of your life and the quality of your time remaining, not having clear choices is a problem. And once you choose your path, there may be no going back. You may have to live with permanent, life-altering side effects as a result of that choice. The risks may be low, but they’re real.

Cancer, treatment options, side effects, and imaging technologies were pretty much all that I thought about all week long, and it took its toll emotionally and physically. I couldn’t shake the thoughts from my head, no matter how hard I tried. In my role as a volunteer manager, I really needed to be as upbeat and positive as I can. I tried my best last week, but it was exhausting doing so.

I know that much of this stress is self-inflicted. If I’d just step away from Google and stop researching, then this may not be so bad. But that’s not how I’m wired. I will say, however, if my doctor’s appointment was tomorrow, I’d feel pretty comfortable going into it with the knowledge that I’ve amassed so far.

I also know that there are no guarantees no matter which path I choose. I just want to choose wisely.