On_A_Journey's journey

On_A_Journey

PART ONE

Hello all,

I joined this forum recently, asked some questions and made some comments, but until now I’ve only given a brief description of what brought me here. I will treat this thread as my own personal blog by telling my story and providing any updates as they happen. I am 59 and from Australia. I have a strong family history of prostate cancer. In 1995, my paternal grandfather died from it at the age of 83. Despite earlier tell-tale symptoms, he didn’t consult a doctor until far too late. By the time he was diagnosed he was already fully metastatic and there was no hope. My father was diagnosed at the age of 68 in 2002, underwent RP that year and is still alive at the ripe old age of 88, but is now ailing with several other comorbidities. My older brother, my only sibling, has no issues with his prostate at all. I have a 31 year old son and keep him fully informed.

Almost 10 years ago, having just turned 50, I thought it would be a good idea to see my doctor for a good old-fashioned check-up and to mention my family history of PCa and my desire to keep on top of any apparent issues. The following is a timeline from initial consultation to eventual diagnosis:

Feb 2013 – Initial discussion with family doctor. PSA blood test arranged.

Mar 2013 – PSA = 6.5. Follow-up test arranged with a referral to a urologist.

May 2013 – PSA = 5.9. 12 sample TRUS biopsy arranged.

Jun 2013 – PCa not detected from biopsy. 6-month follow-up arranged.

Dec 2013 – PSA = 6.7. Choice given between 20 sample TRUS biopsy or wait 6 months. Chose the latter.

May 2014 – PSA = 7.4. 20 sample TRUS biopsy arranged.

Jun 2014 - PCa not detected from biopsy. 6-month follow-up arranged.

Nov 2014 – PSA = 8.1. Multiparametric prostate MRI arranged.

Jan 2015 – From MRI report, “Features suspicious for a 15mm focus of prostate malignancy."

Jan 2015 – PSA = 7.0. Trans-perineal biopsy arranged.

Feb 2015 – Four of nine samples indicated adenocarcinoma. T1 PCa diagnosed. Gleason 3+3.

On_A_Journey

PART TWO

Continuing on from PCa diagnosis to biochemical recurrence:

Mar 2015 – Confirmed with urologist that I was happy to continue with active monitoring.

Jun 2015 – PSA 10.6. Decided to go ahead with RP.

Jun 2015 – From surgical report, “Gleason 3+4, stage T3a, negative resection margin.”

Aug 2015 – PSA = 0.53

Nov 2015 – PSA = 0.75. Salvage RT arranged. Future consultation will be with radio-oncologist.

Dec 2015 – Began first of 33 sessions, ended Feb 2016. Follow-up in 3 months.

May 2016 – PSA = 0.21. Follow-ups stretched out to 6 months.

Nov 2016 – PSA = 0.14

May 2017 – PSA = 0.08. Follow-ups stretched out to 12 months.

May 2018 – PSA = 0.04

May 2019 – PSA = 0.06

May 2020 – PSA = 0.11. Follow-ups brought in to 6 months.

Nov 2020 – PSA = 0.16. Follow-ups brought in to 3 months.

Feb 2021 – PSA = 0.19. PET scan arranged.

Mar 2021 – All clear.

Jun 2021 – PSA = 0.18

Sep 2021 – PSA = 0.18

Feb 2022 – PSA = 0.20. As most of you would know, this is biochemical recurrence territory for someone who has undergone RP. Interestingly, this was also the first PSA test that indicated results in both Atellica (the 0.20 reading) and Alinity (which showed up as 0.33). Until then I wasn’t aware that there was more than one way to come up with a PSA number. I’m still unsure of the non-mathematical difference, but all subsequent results will be indicated as Alinity, so they might seem a bit skewed. 

On_A_Journey

PART THREE

Continuing on from biochemical recurrence to now:

Mar 2022 – PSA = 0.38. This appointment was brough forward 5 weeks because of anxiety around persistent back pain, which resolved over time. Another PET scan was arranged.

Apr 2022 – All clear.

Jun 2022 – PSA = 0.41. Testosterone was also tested, 14.1 nmol/l (normal range 10.0 – 31.0), equivalent to 407 ng/dL (normal range 300 – 1000).

Sep 2022 – PSA = 0.43

Dec 2022 – PSA = 0.48, T 17.9 nmol/l (516 ng/dL equiv.)

What I have found very interesting so far is that every time I have had an MRI or PET scan, my next PSA readings have either stabilised or only increased slightly! Also, the known correlation between T and PCa is displayed as well. From a very small sample of two results, a trend emerges that makes it seem like my PSA increases faster with a higher T result. I believe that I will be tested for T every time now, so this will confirm the trend.

Looking forward, I will give a blood sample again next week and see my oncologist in early February. This is only a two-month interval; I expect my PSA to be just over 0.50 which was a previously agreed trigger point for another PET scan, which I expect to occur. If cells are detected in a node, my radio-oncologist will arrange radiation in an attempt to cure me. If nothing is detected, Androgen Deprivation Therapy will be seriously discussed.

centralPA

Thanks for the super informative thread, OAJ. Knowledge hard gained, unfortunately.

On_A_Journey

Latest results.

We were assuming that the PSA reading would be over 0.50 and it didn't disappoint, bugger it. It rose from 0.48 to 0.57 which is an increase of 19% in just two months. Yikes. Testosterone also increased slightly.

Recap of the past 12 months:

Feb 2022 – PSA = 0.33

Mar 2022 – PSA = 0.38. This appointment was brough forward 5 weeks because of anxiety around persistent back pain, which resolved over time. Another PET scan was arranged.

Apr 2022 – All clear.

Jun 2022 – PSA = 0.41. Testosterone was also tested, 14.1 nmol/l (normal range 10.0 – 31.0), equivalent to 407 ng/dL (normal range 300 – 1000).

Sep 2022 – PSA = 0.43

Dec 2022 – PSA = 0.48, T 17.9 nmol/l (516 ng/dL equiv.)

Feb 2023 – PSA = 0.57, T 18.6 nmol/l (537 ng/dL equiv.)

My PSA velocity has clearly been increasing since mid last year. I have a PET scan booked for Feb 14th and a follow-up with my radio oncologist on the 17th. He mentioned that an early meeting with a medical oncologist was on the cards too. If the PET scan is clear, I expect to start ADT soon after.

VascodaGama

Hi,

Great story. Thanks.

It seems that those tiny metastases respond to androgen fluctuations. I am confident that ADT will do the trick in stopping the increase of the PSA. However, the PET scan should be done with the intention in locating those cancerous spots to attack them with another radiotherapy approach.

For such extent, I think it better not to start ADT yet but waiting till the PSA increases above 1.00 ng/ml, which gives higher assurances of a due scan result. Low PSA values are commonly related to false negatives in PET scans.

Best wishes

VG

On_A_Journey

Thanks VG, much appreciated.

Yes, my oncologist is still looking for something to zap. I'm totally aware that the odds of the scan actually detecting something are less now than what they would be if my PSA was comparatively higher, but I'm also becoming more anxious as time goes on, especially because of the demonstrated exponential rise over the past three results. Unless I understand PSA wrongly, even if my reading stabilized at 0.57 forever and a day, the cancer is still growing at the same rate. If my PSA goes up, it is growing faster again. If it goes down a bit, it is still growing but at a slower rate - but still growing. I understand that my PSA is still a small number now, but I feel pretty helpless at the moment by not physically being able to do anything about it rising. That said, my oncologist did say previously that he would get the ball rolling on ADT whenever I insisted. I think I've been pretty brave so far by holding off until now.

If I were to simply extrapolate my latest and previous test result, with my PSA hypothetically increasing another 19% like it did this time but every two months, my PSA would reach 0.96 in August which means it would have doubled in only 8 months. All supposition of course, but I would much rather deal with it well before then, regardless of a potentially negative scan in a couple of weeks.

I actually started researching ADT and the possible impact of its side effects a couple of years ago, sometimes far too much for my own good, and although I'm not happy with some aspects of it, I do have my head around it. I feel ready.

On_A_Journey

Thanks VG, most appreciated.

Yes, my oncologist is still looking for something to zap. I'm fully aware that the odds of the scan detecting anything are less now than what they would be if I had a higher PSA, but I'm keen to actually do something about my exponentially rising results if the scan is negative. In his words, there is no right or wrong answer regarding the correct trigger point for ADT and I could have already insisted to start it if I had wanted to. It is a very nuanced decision. I actually started researching ADT and its nasty side effects a couple of years ago, too much for my own good at times, and although I'm certainly not looking forward to some of the side effects if they were to hit me hard, I do have my head around it.

Analyzing my results from mid last year, shows a 5% rise in PSA in the three months from Jun to Sep (PSA 0.41 => 0.43), a 12% rise in PSA in the three months from Sep to Dec (PSA 0.43 => 0.48) and a 19% rise in PSA in the two months from Dec to Feb (PSA 0.48 => 0.57). A simple extrapolation of my latest and previous test results, consisting of another 19% rise like this time but every two months, would see my PSA reach 0.96 in August, which is a perfect doubling in just 8 months. This, without further % increases in velocity. All supposition of course, but I want to do something about it well before then.

Clevelandguy

Hi,

Got to agree with Vasco on this one. I know if my cancer returns I think I will wait until something shows up on a PET scan rather than risk the very probability of nasty ADT side effects. ADT will not kill your cancer but only weaken it. I would much rather deal with the side effects of radiation therapy than ADT. In my humble non medical opinion you got to find it to kill it……..

Dave 3+4

Josephg

I agree with Vasco and Cleveland. Wait until your PSA rises enough so that the existing active PCa cluster(s) can be located and potentially destroyed. Otherwise, you could potentially be on ADT for the rest of your life.

On_A_Journey

Thanks guys, I appreciate your opinions. Assuming that my PET scan will be negative, I won't be making a definitive decision about ADT until consulting with both my radio oncologist and future medical oncologist. I'm fully aware that ADT is not a curative thing. Best case is the scan will show something and we won't have to go down the ADT path, but I won't risk the horse bolting.

I have no idea why my previous post doubled up. I made the first post, edited it for clarity, saved it but it then disappeared. I wrote the second one from memory, logged in now and saw both versions here!

centralPA

You wrote "Unless I understand PSA wrongly, even if my reading stabilized at 0.57 forever and a day, the cancer is still growing at the same rate. If my PSA goes up, it is growing faster again."

I don't think this is true. If it is not rising, it is not growing (roughly).

On_A_Journey

You could be right, and I'm happy to stand corrected if that's the case.

I had just assumed that since my PSA should be somewhere near zero, any reading = growth, regardless of whether it is higher or lower than the previous test. Also, by your analogy, if the reading goes down then the cancer is shrinking. So, why doesn't that mean that for someone on hormone therapy whose PSA drops to undetectable levels, they're cured for good?

Again, I'm happy to stand corrected.

On_A_Journey

So, I had my latest PET scan on Tuesday and saw my oncologist for the follow-up today.

Once again, all clear. At least though, we now have a plan. I will get another blood test in April and assuming that my PSA is still rising significantly in % terms, I will be referred to a medical oncologist and in all likelihood, start ADT shortly after. But if my PSA only rises marginally I will rinse/repeat the quarterly blood tests until there is a need to alter course.

I would be happy enough if there are small, linear increases in my PSA in the future until it reaches such a point that another PET scan is warranted and something finally shows up. What worries me is the exponential increase in my PSA since mid last year that might or might not continue. Complicating my case is that history shows that PET scans slow my PSA for a while. Maybe they should be considered as a treatment rather than as a diagnostic? lol

VascodaGama

Lol,

Yes, you may be right. PET scans using PSMA isotopes (radiotracers) may deliver a blow to cancerous cells. The common isotope in PCa PET scans uses Gallium 68 or the various 18-F (NaF, FDG, etc).

This is the same principle of the Lu-177 PSMA treatment using a radioactive “stealth missile” delivered directly to the bandit where it hides.

I think that you should consider cancer activity in your judgments on the PSA variations, instead of the growing of the cancer.

When on ADT, the bandit slows down its activity producing lesser amounts of PSA serum. It is a dormant status.

In other words, one should aim treating the cancer instead of “treating” the PSA. Radiation kills the bandit. ADT showers its activity in progress.

Best wishes and luck in this journey. 

VGama 

On_A_Journey

Thanks for your ongoing concern VG.

Best scenario that I can imagine is very slow and linear increases for a while, in which case I will be happy to wait until my PSA is around 1-ish until I get another PET scan which will then have a much better chance of uncovering the little buggers. But, if my PSA spikes or continues its exponential increases, I am NOT happy to wait. I'd rather take 9 months of ADT now while I'm still young, strong and fit compared to taking it with an already weakened body due to cancer that has already wreaked havoc. After that, let it grow slowly again, and again, if it is small linear rises, I'll be happy to wait until PSA is above 1.0 for a tell-all PET scan then.

jrindlaub

I was just told to get a newer type of PET scan called a PSMA Pet Scan. I guess it's more accurate than the traditional ones. I have a Gleason 7 (4+3) and this is just a precautionary measure to see if/where it may have spread, prior to treatment. You may know all about his, but just passing along in case it's helpful

On_A_Journey

Thanks, jrindlaub. PSMA PET scans are the ones that I get.

Time flies. I just had my latest follow-up with my radio-oncologist. It was a good result, my PSA has fallen from 0.57 to 0.51 with the interval between these two blood tests being 11 weeks, not 3 months, due to circumstances. This, with a stable testosterone level too.

Once again I have experienced a slight drop or a relatively stable PSA reading following a PET scan.

Summary since this time last year:

Apr 2022 – PSMA PET Scan, all clear.

Jun 2022 – PSA = 0.41, Testosterone 14.1 nmol/l (407 ng/dL equiv.)

Sep 2022 – PSA = 0.43

Dec 2022 – PSA = 0.48, T 17.9 nmol/l (516 ng/dL equiv.)

Feb 2023 – PSA = 0.57, T 18.6 nmol/l (537 ng/dL equiv.)

Feb 2023 – PSMA PET Scan, all clear

Apr 2023 – PSA = 0.51, T 18.3 nmol/l (528 ng/dL equiv.)

I'll go the full three months now until my next blood test and follow-up. I expect my PSA to return to a gradual rise in the future but hopefully it doesn't start exponentially increasing again.

On_A_Journey

I just plugged those last five results into a PSA Doubling Time nomogram and came up with 24.6 months. I'm far more relaxed about my situation now than at any time since the beginning of last year when I hit Biochemical Recurrence, despite my PSA still being at a level that I would have considered absolutely scary back then.

On_A_Journey

Another 3 months has flicked by.

My latest PSA result is 0.57, the same as it was 6 months ago. This is slow growth and my calculated doubling time based on my five most recent results is now out to 28.4 months. My testosterone has dropped too, down from 18.3 nmol/l (528 ng/dL equiv.) to 15.0 nmol/l (433 ng/dL equiv.), again re-confirming the relationship between androgen and the bandit.

I am still on 3 monthly follow-ups, so mid-October is my next one.

Old Salt

Good news, overall.

Testosterone varies during the day and the change in your data may not be meaningful.