Tag: Prostate Cancer Blog

Month 136 – PSA Results & SRT

On By DanIn Prostate Cancer, Radiation Therapy20 Comments

Well, kicking the can down the road is no longer an option. My PSA shot up like an Apollo Saturn V rocket (yes, I’m dating myself).

Between 5 January 2022 and 11 March 2022, it jumped from 0.26 ng/mL to 0.33 ng/mL. That’s a 27% increase.

Yes, I had the PSA test done about three weeks sooner than I had planned. I had to see the doctor for another issue, and they did full blood work-up for that. They included the PSA test in that battery of tests, too, so I got my results earlier than expected.

Needless to say, I was hoping that this PSA test would have proved the 0.26 ng/mL to be an outlier, or at least to be consistent, but that wasn’t to be. It’s clear that the rate of increase is accelerating and that’s not good.

Based on that, I called UCSD Radiation Oncology this morning to schedule an appointment with the radiation oncologist to discuss starting salvage radiation therapy. It was a tough call to make on a Monday morning.

On a lighter note, the receptionist who took my call was great (answered on the first ring and went straight to her!—no menu tree to button-push your way through). I am not a morning person, and she was far too bright and chipper for a Monday. When I told her that I was ready to schedule radiation, she responded with a cheerful, “That’s great!!” “You said that far too enthusiastically,” I responded with my stomach in knots at having to make the call in the first place. Oh well.

The enthusiasm continued by scheduling the appointment with the doctor and the body mapping session back-to-back on the same day: Friday, 25 March 2022.

Oh. She gave me a homework assignment, too: Try to have an empty rectum and a full bladder for the mapping.

I will admit that part of me wants to press the doctor about having additional imaging done before we start radiation, but I also know that the cancer continues to grow while we’re waiting for the scan and its results. It doesn’t cost anything to ask the question.

Barring any unforeseen circumstances, the next chapter in this journey is about to begin. Wish me luck.

Day 4,117 – Radiation Oncologist Consult

On By DanIn Radiation Therapy2 Comments

This afternoon, I took a leisurely stroll down to my local radiation oncologist’s office…

That sounds like the beginning of a really bad joke, but it’s not. I walked the 0.9 mile / 1.5 km walk from my home to the UCSD Radiation Oncology center for my first consult there.

My original appointment was for 3:30 p.m., but at 11:40 a.m., they called and said they had a cancellation and asked if I could come in at 2 p.m. Sure. Let’s get this over with.

The radiation oncologist (RO) was very welcoming and very direct in talking about my options, which I appreciated very much. He’s been pretty much exclusively zapping prostates since 2010, which helped build up confidence in his experience and abilities. When he mentioned that he studied at University of Chicago (my hometown), we got off topic and talked about deep-dish pizza and Italian beef sandwiches for a moment.

The key points from the conversation:

  • He recommended proceeding with the radiation at 70 Gy for 7 weeks (IMRT/IGRT), but thought it wasn’t necessary to begin it immediately.
  • He said given my numbers and the negative PSMA PET scan, he would zap only the prostate bed and not the pelvic lymph nodes.
  • I should not let my PSA get above 0.5 ng/mL before starting radiation. Of course, starting sooner rather than later would be better.
  • The risk of long-term side effects appears to be lower than what I had in my mind.

When talking about the likelihood of success, the RO chuckled a little when I mentioned the nomogram numbers. Apparently, he isn’t a fan of nomograms. When I mentioned that the urologist at the VA said that salvage radiation was possibly curative, he chuckled at that, too. He was pretty blunt when he said that salvage radiation would be a “50-50 crap shoot” when it comes to long-term suppression of the cancer. The reason we do it, though, is to squash it hard enough and long enough to significantly slow its progression and buy years of life.

We talked at length about quality of life and life expectancy. He asked if I expected to be here in 10 years, to which I replied, “I don’t know.” My dad and his mom both died unexpectedly at the age of 69—that’s only 5 years away. Will I follow in their footsteps? Who knows. He thought that not doing salvage radiation may be an option if my chances of not living another 10 years are good. But if I thought I would live beyond 10 years, then do the radiation now.

It was interesting that throughout the discussion, he talked solely about salvage radiation without mentioning hormone therapy other than it being the next step after radiation. But then near the end of the conversation, he recommended six months of hormone therapy for me starting at the end of radiation to “really knock down the cancer.” I’m not sure I was expecting that.

We agreed that it would be okay to wait until my next PSA test in early April to see what that shows. But he reminded me that the cancer is there and it is growing. He offered me his card and said to call if I had any other questions.

All in all, I’m pleased with how the discussion went. The RO’s candor was refreshing and I was impressed with the UCSD staff and facility. I left feeling more at ease than I was when I went in. (In fact, little gremlins were doing a jig in my stomach a good chunk of the morning before the appointment.) Am I 100% sold that this is the path I want to pursue? Not yet. But I’m much closer to it than I was when I woke up this morning.

The whole, “When do you think you’ll die?” conversation was a little unnerving and simultaneously thought-provoking. It’s been a while since I’ve had a full-blown physical, so it may be worth checking under the hood to see if everything is in order before starting radiation.

In my mind, if the April PSA comes back higher than the 0.26 ng/mL in January, I’d be more inclined to start sooner. But if it comes back at the 0.21-0.22 ng/mL that it was in June, July, or October, I may be inclined to kick the can down the road a little longer. I don’t know.

As I told a friend yesterday, it’s time to go sit on a mountain top and process all of this information.

More to come.

Be well!

Salvage Radiation Therapy Nomograms

On By DanIn Prostate Cancer, Recurrence2 Comments

I’ve been playing around with two nomograms that offer predictions on the outcome of salvage radiation therapy (SRT). One if from the Memorial Sloan Kettering Cancer Center (MSKCC) and the other is from the Cleveland Clinic (CC). They are similar in design, but the MSKCC nomogram requires more detailed information to be input by the patient, but the CC nomogram provides a more information at the output.

Summary

Both nomograms gave results that are in the same ballpark, with the CC nomogram being a bit more conservative.

MSKCC said that I would have a 64% chance of being progression-free after 6 years after SRT; CC said that I have a 59% chance of being progression-free after 5 years, and 45% chance of being progression-free at 10 years.

The CC nomogram takes it one step further and estimates a 6% cumulative chance of metastasis at 5 years, and a 12% cumulative chance of metastasis at 10 years.

MSKCC Nomogram

MSKCC Salvage Radiation Therapy Nomogram link: https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

In order to use the MSKCC SRT nomogram, you will first need to calculate your PSA Doubling Time, and they specify that you should use the PSA values obtained in the last twelve months.

MSKCC PSA Doubling Time Calculator link: https://www.mskcc.org/nomograms/prostate/psa_doubling_time

The MSKCC SRT nomogram requires you to provide:

  • Pre-surgery PSA value.
  • Most recent PSA value.
  • PSA Doubling Time.
  • How many months have passed before your PSA reached 2.0 ng/mL or higher. [Interesting note: The field only accepts values between 0 and 72 months and, for me, it took 125 months to cross the 0.2 ng/mL threshold. I’m guessing that may mean that my result will be a bit conservative because I had to plug in 72 months instead of 125.]
  • Your Gleason score.
  • Information about your:
    • Surgical margins.
    • Extracapsular extension.
    • Seminal vesicles.
    • Pelvic lymph nodes.
  • Whether your PSA remained elevated post-surgery.
  • The planned radiation dose. (I left this set at their default value of 65 Gy because I had no idea.)
  • Whether you will be undergoing hormone therapy before or along with radiation. (I checked “No” as there has been no discussion of that so far.)

After plugging all of that information in, here are my results:

Cleveland Clinic Nomogram

Cleveland Clinic Salvage Radiation Therapy nomogram link: https://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

The CC nomogram asks you to provide:

  • Whether you will be receiving SRT alone or with concurrent Androgen Deprivation Therapy.
  • Surgical Gleason score.
  • Extracapsular extension.
  • Surgical margin status.
  • Seminal vesicle invasion.
  • Pre-SRT PSA level.
  • Prostate Bed Radiation Dose. [It was interesting to note that CC defaulted this to a dose greater than or equal to 6600 Gy, but it does give you the option to select “<6600”. To be able to compare the CC nomogram results with the MSKCC results, I changed that to be <6600 Gy so the doses would be similar.]

My results are below (click to enlarge):

Interestingly, if I bump up the radiation dose to >=6600 Gy, then my percentages change to 65% free at 5 years and 53% free at 10 years. That makes sense, but do higher radiation doses translate into higher risk of side effects? I’m guessing so. Something to ask the radiation oncologist on Thursday.

Conclusion

Certainly, those are average to good probabilities, but are they good enough to risk impact to quality of life? I don’t know. Of course, the next step is to dig deeper into the risks of real impact on quality of life after salvage radiation.

I’m thankful to everyone who provided information about their own experiences, either here in comments on my previous posts or in other forums. They’ve been very insightful and give me an understanding of the range of possibilities to expect. But each case is unique, and I have to remember that, should I choose this, my case will be different from everyone else’s.

More to come.

Month 135 – Approaching SRT Decision Point

On By DanIn Prostate Cancer, Recurrence, Side Effects24 Comments

My visit with the urologist this week went about as expected.

We talked about my PSMA PET scan results—negative—and he was of the mindset that those would be the expected results at my PSA level. The scan isn’t reliably sensitive enough when the PSA is hovering around 0.2 ng/ml.

With my steadily increasing PSA, he said that there’s cancer there somewhere. In his view, it’s likely location is still in the prostate bed, but we can’t rule out that there aren’t micro-metastases elsewhere.

In reviewing the totality of my case, he commented, “This is one of the trickier cases I’ve seen.” I don’t believe he was too offended when I replied, “No shit, Sherlock.” I guess my frustration of dealing with this over the years came out a little too strong.

What puzzled him about my case is how long after my surgery the PSA returned and how slowly it was increasing over the years. That led to a discussion about PSA doubling time and how my doubling time is shortening at an accelerating rate.

As part of that discussion, I asked him how many data points should be included in the PSA doubling time calculations, and he typically uses only the last three to get a current snapshot of where it is now. (I re-ran my numbers when I got home, and using the last three PSAs, my doubling time is 19.9 months.)

Of course, the engineer in me had to play with that a little, so I went through my PSA spreadsheet and calculated the PSA doubling time if I used the last three values after each test. The results were all over the place:

His recommendation, of course, was salvage radiation to the prostate bed.

He thought that salvage radiation still had a chance of being curative at this point, and given that I’m 64 years old, he thought that I would have plenty of years ahead of me should I choose to go down that path.

We talked about long-term side effects. He thought that there was a 20% to 30% chance that my stress incontinence would worsen, as would my sexual function given where it’s currently at now. He wasn’t confident enough to speak about the chances of rectal issues, at least in the numbers that I was seeking. I expressed concern about the incontinence, and he reminded me that they can take care of that with an artificial sphincter. Great. Another surgery.

I did ask how much longer I could kick this can a little farther down the road, and he didn’t seem to think that that was a good idea at this point. My stomach turned into knots.

We agreed to set up the consult with the radiation oncologist, as well as retest my PSA in early April.

Wednesday afternoon, I received a call from the scheduler trying to set up the radiation oncologist referral. She gave me the option of going to Naval Medical Center San Diego—where I used to work and had a previous referral—or going to University of California San Diego (UCSD). As good a medical treatment facility as NMCSD is, I opted for UCSD. If nothing else than for a second perspective, plus I believe UCSD will have more state-of-the-art equipment and a lower turnover rate in medical teams.

Thursday, morning, UCSD called and we’re set up to meet next Thursday, 17 February 2022. I was a little surprised when they told me that it would be at their Radiation Oncology center that’s about three-quarters of a mile (one kilometer) from my house instead of their main hospital in San Diego.

As you regular readers already know, I’ve been fearful of getting to this point for a while now. Whether my fears are irrational, unfounded or not, I don’t know, but they’re real for me.

My fears center more on having very real, quality of life-impacting side effects from the radiation than on whether or not the radiation will be curative. For some inexplicable reason, my gut intuition is that something will go awry and I’ll be in that 1% or 3% or 10%—or whatever it is—group that gets to experience those side effects impacting quality of life. The radiation oncologist is going to have to give a strong sales pitch to convince me the risks are minimal.

There will be ton of soul-searching and thinking in the days and weeks ahead.

Stay tuned.

Month 134 – PSA Results

On By DanIn Prostate Cancer, Recurrence5 Comments

Well, happy freakin’ New Year and Happy Birthday! <Sarcasm font>

My PSA continued its upward climb from 0.22 ng/mL in October to 0.26 ng/mL yesterday.

Additionally, my PSA Doubling Time fell from 45.3 months to 41.5 months. Still not bad, but that’s including all of my PSA values from December 2017 through present. That may be giving me a false sense of security, so I ran the numbers for just the last two years (February 2020-present), and that PSA Doubling Time is 26.6 months.

Memorial Sloan Kettering PSA Doubling Time Calculator

What’s really frustrating is that the 68Ga PSMA-11 PET scan just five weeks ago didn’t see anything. Anywhere.

I’m definitely going to have to mull this one over. At what point do the actual PSA value and PSA doubling time outweigh the PSMA PET scan results of not seeing anything? Or do the scan results prevail? I don’t know.

I hope that your 2022 is off to a better start than mine and, yes, I celebrate my 64th trip around the sun this month.

Be well!

Day 4,054 – PSMA PET Results

On By DanIn imaging, Prostate Cancer5 Comments

They were late. I hate tardiness. 🙂

Again, going into this, I knew that there was a 50-50 shot that the PSMA PET scan would be able to pick up anything at my PSA level, and it appears that I fell into the “we didn’t see anything” category:

ONCOLOGIC FINDINGS:

History of prostate cancer status post prostatectomy with biochemical
recurrence with:
– No focal PSMA-uptake in the prostatectomy bed.
– No PSMA-PET/CT evidence for distant metastasis.

The fact that they didn’t see anything in my prostate bed and elsewhere is both a good and bad thing. Good, in that whatever cancer may be there was so small that the scan couldn’t pick it up. Bad, in that the scan wasn’t sensitive enough to pick things up at my PSA level (0.22 ng/ml).

As a reminder, I’m just looking at the printout of my results online, and am not yet in a conversation with my doctor about the results, so I’m a little reluctant to come to too many conclusions about some other comments in the report without the benefit of his expertise. There was a section labeled:

INDETERMINATE FINDING:

– Focus of intense PSMA-uptake at the left lung lower lobe (fused 4-263)
without CT correlate, likely a PSMA injection thrombus, not favored to
represent metastatic disease. Attention on follow up.

I added the emphasis above, but it’s something that raises an eyebrow and probably warrants further monitoring or investigation as suggested. That’s something I’ll speak with the doctor about.

Speaking of speaking with the doctor, when I had my appointment in early November, we agreed to schedule a follow-up appointment to go over the scan results in January. However, the first available appointment wasn’t until the first week of February. I’m going to work on moving that earlier, even if it’s a call-in appointment instead of an in-person appointment.

Am I happy with the results? Sort of.

We know from my rising PSA that there’s cancer somewhere in some quantity. While this may be a “false negative,” it’s nice to know that I didn’t light up like the Rockefeller Center Christmas tree. That would have been bad.

Will this cause me to run to the radiation oncologist to start salvage radiation right away based on my PSA alone? Nope. I have another PSA test in January, and if that stays in the 0.21-0.22 range, I’ll be content to continue my monitoring. But if it shoots up drastically, that may cause me to reconsider.

Was it worth $3,300 out-of-pocket? I don’t know. I’m going to get back to you on that one. 🙂

So that’s my PSMA PET scan story, and I’m sticking to it.

If I don’t post again before Christmas, I hope you have a great holiday season!

Be well!

Dr. Kwon Video – Part 2

On By DanIn imaging, Prostate Cancer, Recurrence, Treatment6 Comments

Here’s the second part of Dr. Kwon’s video. Like the first video, it’s very informative (perhaps even more so, at least for me).

Even though I had seen similar statistics before, one of the kickers for me is that only 33% of recurrent cancer is found in the prostate bed (local); 45% will be metastatic; and 22% will be both local and metastatic. As Dr. Kwon rightly points out, knowing where the cancer is located will guide your treatment decisions, and that’s why I have been so reluctant to blindly step into salvage radiation therapy without having first identified the location of the cancer. Why risk the possible toxic side effects of radiation if you’re not radiating in the correct location?

In my previous post, I mentioned that Dr. Kwon was a pioneer in dealing with oligometastatic prostate cancer. At the beginning, many in the profession dismissed his work out of hand (I’ll admit I was skeptical, too), but it seems that over the last 10 years, his work has gained the respect of others and is supported by further research.

In any case, this video is 31 minutes long and I encourage you to watch it.

PET Imaging Video from Dr. Eugene Kwon

On By DanIn imaging, Prostate Cancer5 Comments

Here’s a very informative 23-minute video for both the newly diagnosed and those of us who have been playing with this for a while. It gives a good overview of prostate cancer, imaging in general, and PET imaging specifically.

Dr. Kwon is from the Mayo Clinic and, as I recall, was an early advocate of using PET imaging in identifying and treating oligometastatic prostate cancer.

This video was from the Prostate Cancer Research Institute (PCRI) YouTube channel. I’m not sure when Part 2 will be released.

Month 133 – Waiting for PSMA PET Results

On By DanIn imaging, Prostate Cancer2 Comments

As is often the case with medical tests, there’s a bunch of waiting involved. Even though the PSMA PET scan technician told me that the doctors would review the scan and have the results in 1-2 business days, apparently that didn’t mean that I’d have access to them right away.

After a week or so of hopping online, I emailed UCLA Nuclear Medicine to ask when I would be able to view the results on my online account. Their response:

Your results are set to auto-release in your account on 12/16/21 after 3:41pm.

Now that’s a rather specific date and time which seems quite unusual to me, but at least I have an answer. (It reminds me of my Navy days; see my sea story below.)

That would be my one complaint with UCLA. While the staff administering the scan was very patient-centric, the administrative end—not so much. I guess when you go to a world-renowned medical treatment facility, you’re just one of thousands and thousands of patients and personal attention becomes more challenging.

On a related note, I also alerted the VA San Diego to be on the lookout for the results and to contact me when they come in. So far, no luck.

More to come.

When I was a Surface Warfare Officer in the U.S. Navy, I qualified as Officer of the Deck, which meant that I stood watches on the bridge of the ship and was responsible for everything that went on during my 4-6 hour shift.

The captain of the ship (of all Navy ships) had something called Standing Night Orders for the Officers of the Deck to follow at night while the captain was asleep in his cabin. In the standing night orders, there was a place for the captain to write down whether or not he wanted a wake-up call and, if so, at what time.

On one of my first overnight watches with this captain, he put down that he wanted a wake-up call at 5:28 a.m.

That morning, I was busy with my head in the radar scope hood, trying to track and avoid colliding with another ship, and I missed the 5:28 a.m. call to the captain. But not to worry.

At 5:29 a.m., he was standing on the bridge in full uniform, brusquely asking, “Why didn’t you call me at 5:28 a.m.???”

Prick.

Fortunately, we had a change of command and received a new, human captain about 6 weeks later.