It’s Saturday morning, I’m up, and the birds are chirping outside the window. All good things.
The other good thing is that, for now, I’m remarkably at peace with last night’s PSA results. There’s no anger. No sadness. No real fear. That’s a good thing, too. Wasting emotional energy won’t do anything to change the result.
Another good thing is that it’s taken two years for my PSA to get to this point, and it may take another two years before it hits the traditional 0.2 ng/ml recurrence threshold. That’s time, and time is a good thing.
So what’s next?
My appointment with my doctor isn’t until 12 September and we’ll have a lengthy discussion then. I’m okay with the delay; it allows me time to put together my questions and concerns.
One of the concerns that I will raise yet again is the PSA level at which recurrence is defined. For years, the 0.2 ng/ml threshold has been the accepted standard. However, based on more recent studies, it’s becoming increasingly accepted in the prostate cancer world that salvage treatment should start much earlier.
Studies out of UCLA and Johns Hopkins suggested that a PSA of 0.03 ng/ml using the ultrasensitive PSA test can be predictive of recurrence. In that case, I’m about 18-24 months behind the 8-ball. Another study out of Germany released in May 2017 suggested recurrence be defined at 0.1 ng/ml, which I’m just shy of (time for one more Maß of beer at Oktoberfest!). And just to prove that I’m not nuts obsessing over the definition of biochemical recurrence, a somewhat dated research paper (2007) showed “a total of 145 articles contained 53 different definitions of biochemical recurrence for those treated with radical prostatectomy.” [Emphasis added.] No wonder there’s confusion among us patients!
You can see why, then, it’s so confusing and frustrating when recurrence is being defined by different groups as anywhere between 0.03 ng/ml and 0.2 ng/ml and your numbers are smack-dab in the middle of that range. Either my cancer is back or it’s not. It just depends on who you ask.
For my own sanity at this point, it’s just easier for me to accept the idea that the cancer is back, period. I can’t keep going on the emotional roller coaster ride of “Is it or isn’t it?” Given two years’ worth of upward-trending data points when there shouldn’t be any PSA at all, it’s a fairly safe bet that the cancer is back. I genuinely don’t think I’m getting ahead of myself and, if I’m proven wrong at some point in the future, I’ll eat my words and we’ll have one hell of a party. (Oktoberfest, anyone?)
Treatment options for me include salvage radiation therapy (SRT), androgen deprivation therapy (ADT) (hormone therapy), a combination of both and, perhaps chemotherapy. There are also newer options out there that I need to get more familiar with. Of course, there’s always the option to do nothing, too (it’s not as crazy as you think).
Salvage Radiation Therapy
Radiation therapy usually targets the prostatic bed—where the prostate used to be—on the assumption that that’s where the residual cancer cells are hanging out. But the insidious thing about prostate cancer is that microscopic cells could be anywhere in the body and never get picked up by any scans or imaging. You can blast the crap out of your prostatic bed—risking increased incontinence, complete impotence, and bowel control issues—but not get all the cancer. In fact, one study shows that only 38% of SRT patients are disease-free at five years after their radiation therapy. Other studies put the number at around 50%. SRT can be curative, however, in those patients where it worked.
I’ve also seen conflicting guidance about SRT. On the one hand, “men with Gleason scores of 7 or lower, no cancer found in their seminal vesicles and lymph nodes, and increases in PSA several years after surgery were more likely to have a local recurrence of cancer—which means their cancer may still be cured with external-beam radiation to the prostate bed, where some residual cancer cells may be hiding.” (Walsh, 2nd ed. 381) I fit all of those requirements and would be a candidate for SRT.
On the very next page in Walsh, however, it states, “Radiation was also not likely to help men who had negative surgical margins. This is logical…because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area (and thus can be treated with radiation).” I had negative margins. The one thing that troubles me in that passage is the word “persists” because it implies the patients’ PSAs never went to undetectable after the surgery like mine did. That may make a difference in applicability.
Then there’s this little tidbit of information from the New Prostate Cancer Infolink: “There is an open controversy as to whether salvage radiation therapy, even if given after biochemical recurrence (a confirmed PSA ≥ 0.2 ng/ml), translates to a survival benefit. Fewer than a third of patients with a post-prostatectomy biochemical recurrence experienced systemic progression, and it takes a median of 8 years for distant metastatic progression, and 13 years for mortality to occur, according to a Johns Hopkins study (by Pound et al.).”
Androgen Deprivation (Hormone) Therapy
Prostate cancer feeds off of testosterone, and androgen deprivation therapy is a means of starving the cancer cells of testosterone. It’s the equivalent of chemical castration. There are two types of ADT: one stops the production of testosterone and the other stops the cancer cells from absorbing the testosterone. But here’s the kicker: there are androgen-independent cancer cells out there that will not be affected at all by either therapy, and they’ll just keep growing. ADT is not a cure; it only prolongs life.
ADT has some nasty side effects: depression, fatigue, hot flashes, anxiety, increased risk for other diseases (diabetes, cardiac issues), weight gain, osteoporosis, loss of libido, irritability, and others. Some of these side effects are so debilitating in some patients that they can no longer work and have difficulty functioning in their daily lives. (Yes, that’s a worse case scenario, but from my anecdotal observations of ADT patients online, side effects do have a significant impact on many of them.)
Another option to eliminate the majority of testosterone production is through surgical castration (gulp!). That may reduce some of the side effects, but not all.
Lastly, there’s debate as to when to start ADT and how to administer it. Some argue that you should start early to slow the growth; others argue that you wait until the end so that it can be helpful in tumor and pain management; yet others argue between whether it should be administered continuously or intermittently. Interestingly, studies have shown there is no statistical difference in outcome whether you start ADT early or late—the result is the same. (Walsh, 2nd ed. 473, 476-477) The only difference is that, if you start early, you suffer from the side effects for a much longer period.
Doing Nothing
Of course, the last option of doing nothing has some merit, too.
I’m not keen on being radiated, especially if we don’t know without a high degree of certainty that the cancer is still in the prostatic bed. I mean, really, if I’m going to risk peeing and pooping in my pants and never having an erection again for the rest of my life (perhaps slightly exaggerated) for just a 38% chance that I’ll be cured… That requires some thought.
The same thing with starting ADT early. If you’re going to be depressed, curled up in a bed 20 hours a day, unable to work or function just so you can extend your life for a few months or years, and the outcome is going to be the same as if you started ADT late, is that really worth it? Is that living?
None of us are getting out of here alive, and doing nothing isn’t “giving up.” In fact, when the side effects of the treatment may be worse than the disease itself, I view doing nothing as a way to say, “F–k cancer!” If I can squeeze a whole lot of living into the next 10-15 years without side effects of treatment impacting my quality of life and preventing me from truly living, why wouldn’t I do that? Sure, it’s a crappy hand that I’ve been dealt, but I’ll just come to terms with it and play it out. Again, none of us are getting out of here alive, and the notion of extending life at all costs just for the sake of extending life doesn’t sit well with me. Quality over quantity is important to me, and I’m sure there’s a balance in there somewhere.
A study done in 2005 at Johns Hopkins looked at various factors—Gleason score, PSA doubling time, and time from surgery to the return of PSA—and determined the likelihood that you will not die from prostate cancer based on those measures. Based on my numbers (Gleason 7, PSA DT more than 10 months, and return of PSA more than 3 years after surgery), I have a 99% chance of being around in 5 years; a 95% chance of being around in 10 years; and an 86% of being around in 15 years. (Walsh, 2nd ed., 386-390) Again, what’s not clear from that summary is what, if any, treatments patients had during that time. Bottom line: I’m not going anywhere anytime soon.
Have I come to a decision? Of course not. It’s far too early and there are far too many conversations that need to be had with medical teams, and much more research to do. It will also be interesting to see if we stick to the four-month PSA test cycle or increase the frequency now. Based on my last conversations with the VA doctor, I suspect that we’ll keep to the four month cycle and consider acting once the PSA hits the 0.15 mark or so. (They’re pretty tied to the 0.2 ng/ml number.)
The one thing I want to understand much better is what percent of patients are impacted by the treatment side effects and to what degree. I’ve already got a decent idea—the numbers are relatively small—but I need to zero in on that in my research.
One last bit of good news. Advances are being made in prostate cancer research every day, and perhaps there’s something in the pipeline that will be of use in the near future.
At least now you have a better idea of what’s ahead and how my pea-sized brain is processing all of this at the moment.
It’s now well into the evening here in San Diego (took a break in the middle of the day) and time to figure out where those chirping birds went to escape the heat. That, or plan a trip to Oktoberfest.
[I hope I didn’t offend or scare anyone. I also respect each and every person’s decision for their own treatment options because what they chose is right for them and their personal circumstances.]
Dan's Journey through Prostate Cancer 
Hi Dan, great article covering all the bases. Well done. All you need to do now is make sense of it all! Good luck deciding the course of action that fits. Cheers, Phil
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Thanks, Phil. I think we’ve got time before choices need to be made. We’ll see.
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From personal experience regarding ADT; I’ve been on Lupron and bicaludamide for 4 months. I don’t take any other medications for any conditions. I’ve been a pillar of health for a long time. Vegan diet…well…90ish % vegan for 6 years. I have been eating some fish lately. Daily exercise regime since I was in my 30’s. Don’t drink or recreational drugs. (maybe that’s my problem?) My standing heart rate is around 40. Blood pressure is 115/60.
The hormones are kicking my ass. The side effects are no joke. Yes, my PSA went from 67 to 7, so, they’re working, but as you noted, there’s the hormone resistant cancer cells still doing their thing. I eat breakfast in the morning of oatmeal and fruit and that’s all I need for the whole day even after my exercise routine that a younger man would have trouble keeping up with. Yet, I feel fat. My trim waistline is showing signs of flab. I’m drinking a cup of green tea now, first thing this morning, and I feel bloated. I can forget anything to do with sex. Not happening. Not even the slightest bit interested. The hormones seem to cut directly into the mind and shut down even thoughts that once used to bubble forth if I glanced at an attractive woman. I mean, women to me are about as interesting as this desk I’m sitting at.
Emotional instability. Yes, indeed. The other day I broke down and had two beers. Mistake. I found myself lying on the floor crying, sobbing, completely depressed and I had forgotten that I was even on hormones. I was convinced of my worthlessness as a human. I find myself visiting suicide message boards online. I wish there was a bi-polar quality so I could at least experience the opposite high. There’s just depression then back to …normal?
Hot flashes. Yup. I had to install a ceiling fan over the bed because I would wake up in a literal pool of sweat. Night sweats. Change the sheets in the morning.
Irritability and all the other effects you’ve mentioned.
My next shot of lupron and Dr. Appt is August 25. I’m considering not showing up and letting nature take it’s course like a good Klingon. I’d rather go out in battle, guns blazing, heart pumping and all my senses tuned at the ready than drifting slowly into a fat slobbering, crying, lazy, SOB….. “Today is a good day to die”
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Eric, thank you for sharing your story so openly. I don’t have the first-hand experience to be able to relate to what you’re going through, but I wish you well and hope that your medical team can point you to someone who may be able to help minimize some of the emotional side effects. (I’m not sure if that’s even possible.) In the meantime, feel free to keep venting away.
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I have been on lupron for years now. I have all the same issues you mentioned. For the depression I went to a psychiatrist and started taking antidepressants. For the hot flashes my doctor recommended I try Black Cohosh or vitamin E 1000 iu. Don’t take both. Choose one. Take one dose a day. The black cohosh can be found at most pharmacies in the over the counter drug section.
As Dan mentioned one of the other treatment methods with lupron is intermittent. As I recall my oncologist said it was four months on, eight months off. You may want to discuss this with your oncologist.
Take care and good luck.
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Thanks, Jim. The voice of experience is so much better.
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I remember Dr. Walsh in Surviving Prostate Cancer mentions intermittent treatments. I’ll have to look at it again, but I’m not sure if he recommended it? Well, I’ll go get the book now.
Page 488 of third edition. “The major benefit of all this, advocates say, include better quality of life- recovery of sexual function and a greater sense of well-being during the downtime between treatments. Advocates of this approach believe prostate cancer can be cycled, like a rubber band that stretches and then – boing – snaps back to a smaller state, then stretches again. In this way, they believe they can stave off the emergence of the androgen-insensitive cells that ultimately prove fatal in men with metastatic prostate cancer. However, a recent randomized trail of 766 men from southern Europe found that there was no improvement in overall survival in men who received intermittent therapy. Consequently, intermittent therapy does not delay the emergence of androgen-insensitive cells, as it was supposed to.
…..An intermittent hormonal therapy program requires disciplined and careful monitoring of PSA and testosterone levels, especially after treatment as stopped.”
Ya, I’ll ask the doctor, but I’m not happy about the yo-yo effect and worrying during downtime. I’m crazy enough. I guess I could always go another level of crazy?
I’ll check out the Cohosh or vitamin E. Nice, I’m on it.
Thanks
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Sorry to set you off on a wild goose chase on the intermittent lupron. The black cohosh did work for me. Eventually, I got over the hot flashes, but it took years.
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It’s good to know the options and what Walsh wrote. My doctor did mention intermittent, so it’s good to be prepared with questions and knowledge before the appointment in a couple weeks.
One last question. Are you only on Lupron? No bicaludamide?
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I was on casodex as well for several years, but then the lupron started to fail and I went off the casodex and started on xtandi. The xtandi took my PSA from the 150s down to the mid teens where it’s remained. Hope this helps.
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I see. Casodex is bicaludamide or anti-androgen, but taken with lupron. Xtandi is also an anti-androgen taken without Lupron..I guess. Ok, something to look for in the future. thanks for the info. “Live Long and Prosper!”
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I’m taking xtandi with lupron. Still on that train. I had a choice of zytiga or xtandi. I chose xtandi because the list of side effects was smaller. Some oncologists stop using lupron when it starts to fail, but mine believes there’s still benefit.
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Best wishes Dan, you and only you can make the right decision. You will do what’s best. Look for peace of mind. Take care and keep us informed. I always look forward to reading your blog. Life is good.
Sean Kilkenny
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Thanks, Sean. I’m sure that there will be time before I have to start making any real choices. In the interim, I’ll get as smart as I can so the choices I do make are educated ones.
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Good post Dan. And you bring up some good points.
I think it takes as much, probably more courage, to do nothing. I don’t think I could do that. But who knows, I’ll probably find out soon.
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Thanks, Ken. I’m not sure that I’ll have the courage, either, when push comes to shove. But too often people forget that doing nothing is one of the options. We’re wired as a society to keep us around for as long as possible, but sometimes we forget to look at the cost of doing so (and I’m not talking financial cost).
In January, I’ll turn 60 and if I can get another 15 years beyond that, I will have out-lived both of my parents and 3 of my 4 grandparents. Hell, both my father and his mother died of cardiac issues at 69, so anything beyond 69 is gravy for me. 🙂 The average life expectancy for men in the US today is 76.3 years, so going another 15 years would get me in the ballpark, too.
My mother died from emphysema and mesothelioma. She hated being tied to an oxygen tube and hated the side effects of her medications. The last thing she wanted was to be put in some clinical trial, being poked, prodded, and likely having even more side effects all in an effort to extend her life 6-9 months at best. She wanted to be in control for as long as she could, and she did.
That experience has certainly shaped my view on the topic but, when the time comes, who knows what choices I’ll actually make. I can only hope to have as much strength and grace as my mom did.
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I believe you’re approaching this in the best way possible and from a position of strength. One possibility that you didn’t discuss is chemotherapy. My understanding is that if one has gone to stage iv, then a growing number of oncologists believe the best treatment is ADT and chemotherapy. I personally doubt I will ever do chemo. Too much loss of quality of life, but I wanted to share this trend.
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Hi Jim. Thanks for the input. Yes, I know that chemo is an option at later stages, but it’s just not something that I’ve done a ton of research on yet. Like you, it’s not high on my bucket list of things to do. I will say, however, there’s a young woman whom I work with who just finished chemo for breast cancer, and she seemed to tolerate it pretty well. Each case is unique, that’s for sure.
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Dan, I want to keep up with your situation, would never not follow you. I find this very interesting and I care. I agree on considering all the different options as well as doing nothing. In my husband’s condition with Alzheimer’s, our choice was not to do nothing but the outcome is virtually that. So, we are striving to make the best of each day with what we have that day. I also have a cousin with the same condition you have who is about 27 years older than us who chose to do nothing. When the treatment options are not very promising or have significant side effects, close consideration of percent effectiveness must be studied. We are after quality life more than quantity. There are many long term ramifications from the chemo options.
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Good article Dan! I have also given much thought to similar scenarios. Given my time over I think I may have chosen to wait and see. Enjoy quality of life. But who thinks it all through when the diagnosis is given. I would definitely not have a needle biopsy! I still believe it releases cancer cells from the prostate. Lutetium looks positive at this time, but who knows? I think you are on the right track mentally. Any psa indicates cancer cells present somewhere.
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Hi Dan,
Thanks for this – these are very, very difficult decisions but you seem to be well across the information on which to make a decision.
One thing that might be worth trying. Have you looked into Modified Citrus Pectin? As ever with supplements the evidence is sketchy but there is a small clinical trial which looks promising. I have decided to give it a go to see if I can get my post RP post Salvage Radiotherapy doubling time up from the less than six months it now stands at.
Here are some links.
https://www.ncbi.nlm.nih.gov/pubmed/14663471
http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-therapies/individual-therapies/modified-citrus-pectin-mcp
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782490/
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