Month 99 – Stubbornness, Independence, and Relationships

My mother was fiercely independent right up to the final weeks of her life. Or at least she wanted to remain as independent as she could for as long as she could, and she generally succeeded in that.

Let’s say that this apple didn’t fall far from that tree.

IMG_20190204_195859215 (1)Last week I had a cyst removed from my right thumb (I’m right-handed). It started out quite small over a year ago and had grown to the size of a small pea just below my thumbnail. It wasn’t painful, but it was beginning to change how my thumbnail grew and, because it was sticking out from the surface of my thumb, it would get abraded if I rubbed it against things. It was time to go.

I drove myself to the hospital with the understanding that this would likely be done with a local anesthesia, but I needed to be prepared in case they needed to give me stronger happy juice during the procedure. Let’s just say that the hospital over-achieved and knocked me out for the surgery.

Thanks to the nerve blockers used in my arm, my hand was flopping around like a dead fish, completely uncontrollable and completely useless. (Much like in this classic Tim Conway / Harvey Korman sketch.) When it came time to go home, I had to have the nurse button my shirt and tie my shoes so I could leave the hospital. So much for independence.

Of course, that meant that I couldn’t drive myself home. Thankfully, I had given two friends a head’s up that I may need a ride and had each of them on standby waiting for a call from me. Tom was gracious enough to chauffeur me home during a rainy rush hour in San Diego. (San Diegans lose their minds when it comes to driving in the rain because it happens so infrequently, so I really appreciate his navigating through that mess.)

The next morning with full control of my hand and minimal pain from the incision, I had to retrieve my car from the hospital’s parking garage 31 miles / 50 km from my house. Being stubborn and wanting to regain some independence, I took three buses and two trolleys (light rail) and two hours and forty minutes to get to the hospital. But I got my car on my own. Woo-hoo! (Although it’s been almost a week and I still haven’t untied the nurse’s knots on my shoes—I’ve been slipping my feet in and out of them all week long.)

Some of you may recall that several posts ago, I talked about relationships and how disillusioned I was with some of them. Some reflection since that post and this incident have recalibrated me to a degree.

Facing any illness in general or cancer in particular as a single person poses its own set of unique challenges. Obviously, I have to impose on the lives of those around me to meet some of my needs if I can’t do things for myself. I hate having to do that (stubborn independent streak) but obviously know that it’s okay to swallow my pride and do so when the time comes.

This incident highlighted for me the handful of people that I would feel comfortable approaching for assistance, and that’s a good thing.  (Keep in mind that my family is half a continent away in Chicago, so something major would have to happen for them to be of assistance. Either I go there or one of them comes to San Diego.)

I would like that list of potential helpers to be a bit longer just to spread the burden among the lot of them, and that’s where some of my questions about current relationships still come into play. Relationships that were fostered over decades before I joined social media (i.e., Facebook), seem to have been reduced to mere “likes” and 🙂 now from people who used to call, email, or visit. Will I be able to call on them and rely on them if and when the need arises? In most cases, I should be able to count on them, but time will tell.

With luck, any need for physical assistance will be years away and I’ll have time to sort things out. In the meantime, I won’t burn any bridges and will work to ensure that I’m holding up my end of the relationship.

 

Day 3,000!

Wow! Regular readers of this blog know that I’m a numbers guy and like tracking milestones and PSA.

Little did I think when I started this blog over eight years ago that I would still be writing about prostate cancer 3,000 days later. Of course, I was hoping that I’d have been “cured” by now, but that just wasn’t in my cards. Oh well.

So the good news is that, after 3,000 days, I’m still here and still blogging (a reason to celebrate). The less good news is that, after 3,000 days, I’m still here and still blogging, but now about recurrent cancer. #CancerSucks

Thanks to everyone who’s followed along for some or all of this journey, and who have offered insights, resources, and support along the way!  —Dan

Life After Radical Prostatectomy: 96 Months Later

So it’s been 96 months since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA resumed its upward climb last month after a brief hiatus between April and August. It certainly wasn’t unexpected, yet I was holding out hope that I could have had three consecutive PSA readings at the same level. It just wasn’t meant to be. That means that I’m one step closer to having to make a decision about what’s next.

Emotions

At this point, I’m at peace with where I’m at regarding the cancer returning. What’s actually been gnawing at me since my last post like this six months ago is something completely different—relationships.

Relationships require effort and commitment by both parties and lately, I’ve been asking myself the question, “At what point does one stop investing in a relationship when you get little or no return?” I don’t know that I have the answer to that question. I don’t want to burn bridges, but time is the most precious thing we as cancer patients have, and we want to invest our time as wisely as possible.

The sad thing is that I’m beginning to ask that question of the people who are the ones that I’ll  need to turn when the cancer advances to the point where I’ll need assistance. (Remember, I’m single and the thought of facing this alone scares the piss out of me.)

Incontinence

Speaking of piss out of me, let’s talk incontinence. (Sorry, I couldn’t resist.) I have noticed a slight increase in stress incontinence episodes and, if I’m perfectly honest with myself, I would attribute that to the fact that I have gained weight again. I really think there’s a correlation there, so I’m going to work on losing some weight and see what happens.

I’m still 90+% dry, but when I sneeze, cough, or lift something of even moderate weight, the likelihood of a few drops leaking out has gone up slightly.

The other time that I have issues is immediately after emptying my bladder. (I don’t know why I haven’t talked about this before, but it’s been an issue for quite a while.) If I don’t go through a little routine at the urinal to “milk” any residual urine from my urethra after emptying my bladder, the chances are good that I may have a squirt of urine as I’m putting everything away.

Sexual Function

My ability to achieve decent erections has remained pretty constant through the last six months. I’m in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Some days I can get lucky and get in the 90% erection stage, but those days aren’t common. Of course, all of that is without any chemical assistance.

Summary

I’ve got a lot on my plate in the months ahead. I’ll continue to research imaging trials and salvage radiation in anticipation of my next PSA test in April. I’ll also evaluate my relationships, looking inward first to see how much of this may be my problem, to see where I should invest my precious time. I have no doubt that 2019 will prove to be an interesting year.

Day 2,960 – Meeting with the Urologist

One thing that I’ve learned along this journey is that every doctor has his or her own take on the situation and what should be done, and very few of those opinions match. They can’t even agree on standard definitions.

This afternoon’s meeting with yet another urologist proved to be interesting at best and a tad frustrating at worst.

He was a younger doctor but the interesting thing was that he held to the belief that I haven’t had a biochemical recurrence yet and won’t until I hit the magical 0.2 ng/ml. I was a bit taken aback by that given what everyone else has been telling me for the last two years. He also talked about the newer ultra-sensitive PSA tests, but hung on to the definition that anything less than 0.1 ng/ml was “undetectable.” In his mind, my PSA at 0.13 was “very low.”

We talked at length about my PSA doubling time, and that was one area that we came to consensus on. That having a PSADT of more than two years was a good thing. He seemed quite interested in seeing the results of the Memorial Sloan Kettering PSADT calculator, which had my doubling time at 35 months (based on only four data points because their calculator accepts only those values >= 0.1 ng/ml). (I also had my PSA tracking chart printed out and sitting on his desk when he walked in.)

I asked him about what his experience was with dealing with the long-term side effects of salvage radiation therapy as a urologist—how frequently they occurred and what severity they were. He went through the list of things that I had already known, and said in his “whole career” he had seen only three or four cases that were significant. (Note: His “whole career” spanned all of six years. I’ve had cancer 8 years.)

Lastly, we talked about the Ga68 PSMA imaging trial going on at UCLA. It was clear he was aware of the research, but wasn’t at all familiar with the details or requirements of the trial. I didn’t expect him to be well-versed on the topic, but it was clear that I knew a bit more about it than he did, especially when it came to the requirements to participate, (I didn’t tell him that I had actually contacted UCLA.)

He did ask me if I had a PSA threshold in mind where I would want to take action when it comes to salvage radiation therapy. In my mind, if we get into the 0.15 or above range and the PSADT starts to shorten, I’ll have to strongly consider the next steps. But I did bring up the Freedland study that shows, with my numbers, I can do nothing and have a 94% chance of being around in 15 years.

Normally, I don’t mind seeing younger doctors because sometimes they’re more familiar with the latest research and current treatment philosophies than their older counterparts. I’ll take his input with a grain of salt considering how he’s not in line with the thinking of some of the others that I’ve seen in the last year or two.

In the end, we agreed to kick the can down the road and do another PSA test in four months in April 2019.

I’m still interested in speaking with a radiation oncologist about this again. I may try emailing the one I saw in May or just ask for another referral after the beginning of the new year.

It was a bit of an odd consult. I’ll just forge my own path forward and we’ll see where that leads. In the meantime….

Wishing you all a very Merry Christmas and the healthiest, happiest New Year possible!

—Dan

IMG_20171207_140153690
We have to improvise here in San Diego!

A review of PET Imaging for Recurrent Prostate Cancer

This is a quite informative paper from Practical Radiation Oncology, giving a good overview of the newer imaging technologies being developed to identify the location of recurrent prostate cancer before beginning salvage radiation therapy.

Prostate cancer–specific PET radiotracers: A review on the clinical utility in recurrent disease

I’ll comment in a separate post on where my head is at after receiving my latest PSA results.

Day 2,948 – PSA Results

My slight sense of optimism that I gained after my last consistent PSA result was shattered at four o’clock this morning when I hopped online in a fit of insomnia to check my PSA test results from this week. I’m back on the upward climb again with a PSA of 0.13 ng/ml.

PSA 20181203 clean

My spiffy spreadsheet predicted a value of 0.129 ng/ml, so it wasn’t unexpected. Just my hope for a more stable PSA went out the window.

Obviously, I’ve got some serious thinking to do in the weeks ahead.

The predictive part of my spreadsheet shows the increase will continue at a rate of about 0.011 ng/ml every four months. In April, I would be at 0.140 and in August at 0.151. Is that rate slow enough to delay any decision about salvage radiation therapy a while longer? I don’t know.

Do I get involved with the imaging trial at UCLA to see if we can determine where the cancer is before undergoing salvage radiation therapy? I don’t know.

Or do I just say screw it and start the salvage radiation therapy in early 2019? I don’t know.

Stay tuned for the answers. That, or for pictures of ostriches with their heads buried in the sand.

Eight Years

It was eight years ago today that I learned that I had prostate cancer. I had no idea then what would transpire in the days and weeks ahead, and I certainly had no idea that I’d still be dealing with it—and writing about it—eight years later.

You’ve heard me say multiple times that, once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days.

You’ve also seen me throw around the phrase cancer-free with each successive undetectable post-surgery PSA test. It’s hard not to. With each undetectable test result over time, you become more confident that you have this beat. You get lulled into a sense of routine and PSA tests become less scary. But because cancer is so insidious, there’s a danger in using words like cancer-free and cured.

My first indication of biochemical recurrence 54 months after surgery was an utterly unexpected slap upside the head. “Not so fast, fool!”

Ever since then, I’ve become a big fan of NED—No Evidence of Disease—as a better descriptor of how successful a treatment option has been because it accounts for that little recurrence cloud. Saying cancer-free or cure implies a finality. You’re done. It’s behind you. A decade later, you may find out that no, in fact, you’re not done with cancer.

Some may say that’s a rather dismal outlook on things and that we need to be optimistic. Perhaps. I prefer to be more realistic, obviously as a result of my own recurrence experience. And, just because I had recurrence, it doesn’t mean that others will as well. You may live the rest of your days with no evidence of disease and, if you do, more power to you.

There is good news. It’s eight years later and I’m still here, still pretty much fully functioning, and still writing.

After eight years, I’ve learned:

  • Be optimistic but understand that, with cancer, there are no guarantees.
  • Research, research, and research some more, but step away and take time for your mental health.
  • We may think that we’re fighting a battle, but the reality is that the cancer is in control and we’re simply reacting to the next treatment or test result.

My next PSA test will be on 6 December 2018 if all goes to plan. Will it remain stable at 0.11 ng/ml, or will it return to an upward movement? Stay tuned.

Work life and my travels over the last three months or so have been so busy that I haven’t thought, read, or researched about prostate cancer much at all. It’s been a pleasant break. But the one thing that has been lingering in the back of my mind is the trial of 68Ga-PSMA-11 PET/CT Molecular Imaging for Prostate Cancer Salvage Radiotherapy Planning [PSMA-SRT] at the University of California Los Angeles (UCLA).

I’m not sure that I would want to enroll in the full-blown trial itself, but I would like to learn whether or not I could get the scan outside of the trial, even if it’s at my own expense. I’d really like to know that we’re zapping where the cancer is located instead of blindly, based on statistics, if I do choose salvage radiation therapy. It’s something I’ll discuss with the urologist on 18 December 2018.

Month 94 – Educate Yourself

prostate-awareness-350It’s once again Prostate Cancer Awareness Month, and my message to men (and their partners) out there is a simple one: Educate yourself.

Educate yourself about the debate over PSA testing and whether it may be right for you. Educate yourself about the risk of getting prostate cancer given your family history. Educate yourself about how prostate cancer behaves, either aggressively or not so much. Educate yourself about the various treatment options that are out there along with their risks, potential side effects, and potential success rates. Educate yourself about the terminology used in discussing prostate cancer.

Most important, educate yourself on all of these things before you may ever be diagnosed with prostate cancer.

You’ll be better equipped to move forward should you be unfortunate enough to be diagnosed if you’ve learned about this insidious disease that’s more complex than most people give it credit.


On a related note, if you are diagnosed with prostate cancer, expect to be surprised at who is and who isn’t there to support you along the way.

It’s been interesting to me to see how some of my best support for dealing with prostate cancer has come from readers of this blog from as far away as Australia, New Zealand, Canada, various states in the U.S., or the United Kingdom. For that, I am truly grateful and want to simply say, “Thank you!”

PSMA-SRT Randomized Phase 3 Trial is now open at UCLA

Every now and again I’m asked to share information on my blog, and this was something that is of personal interest to me given my current situation. It’s from the UCLA Nuclear Medicine department and will likely be of interest to others as well.

They reference a couple of attachments in their email to me, but none were attached.


We have the pleasure to announce the opening of a Randomized Prospective phase 3 trial of PSMA PET/CT based salvage radiation therapy (PSMA-SRT) at UCLA Nuclear Medicine (NCT03582774).

https://clinicaltrials.gov/ct2/show/NCT03582774

This is the first randomized prospective phase 3 trial designed to determine whether PSMA PET/CT can improve outcomes in patients with prostate cancer biochemical recurrence.

PSMA PET/CT will be free of charge for patients (100% sponsored by UCLA Nuclear Medicine).

Patients who are planned for salvage radiation therapy (SRT) for recurrence after primary prostatectomy with PSA ≥ 0.1 ng/ml are candidate.

We will randomize patients to proceed with standard SRT (control arm 1) or undergo a PSMA PET/CT scan prior SRT planning (investigational arm 2).

Patients randomized to control arm 1 will not undergo PSMA PET/CT: SRT will be performed as routinely planned per discretion of the treating radiation oncologist. Any other imaging will be allowed for SRT planning if done per routine care.

Patients assigned to arm 2 will be scheduled to undergo a PSMA PET/CT scan at UCLA Nuclear Medicine (free of charge) prior to radiation therapy planning. DICOM images and reports of PSMA PET/CT scans will be delivered to the treating radiation oncologist.

The radiation oncologist may change the radiation plan depending on the findings of the PSMA PET/CT scan. That is, the treating radiation oncologist may use whatever dose, fractionation, and target volumes they choose, and may use concurrent ADT or not, at their discretion (please see the attached document for the radiation therapy management specifications).

The primary endpoint of the trial is the success rate of SRT measured as 5-year biochemical progression-free survival after initiation of SRT.

Patients will be followed by the UCLA Nuclear medicine research team for up to 5 years after initiation of SRT (phone/fax/secure emails with the treating radiation oncologist team and/or with the patient) every 3-6 months (routine PSA and imaging).

To enroll a patient:

  • All subjects must sign the UCLA IRB approved informed consent form (ICF, attached) before enrollment and randomization.
  • For UCLA patients, this will be done after a consultation with the UCLA Nuclear Medicine Team or the UCLA Radiation Oncology Team.
  • For all other patients outside of UCLA, this will be done after a phone consultation with the UCLA nuclear medicine research team. Signed ICF will then be obtained by fax or email.
  • The randomization number and assigned arm will be communicated by phone or email to treating physicians and patients one day after the enrollment.
  • Patients randomized to control arm 1 will not need to come at UCLA and will receive SRT per routine care at the treating radiation oncologist institution.

This trial represents a good opportunity for all the patients who cannot afford the out-of-pocket costs of a research PSMA PET/CT (at UCLA: around $2700).

Please try to spread the word as much as you can around you.

In advance I thank you very much for your collaboration.

Please don’t hesitate to contact us if you have any question:

Jeaninne Gartmann, Study Coordinator: JGartmann@mednet.ucla.edu
Jeremie Calais, Principal Investigator: JCalais@mednet.ucla.edu
Nicholas Nickols, Co-Principal Investigator: NNickols@mednet.ucla.edu

Best regards

Jeremie Calais MD MSc
Assistant Professor
UCLA Nuclear Medicine

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.