On_A_Journey's journey

On_A_Journey

https://csn.cancer.org/discussion/comment/1707202#Comment_1707202

Thanks, Old Salt.

Thinking about it more, what you said makes sense. The 'normal' testosterone range is a very broad thing, perhaps amongst other reasons to cater for potential intra-day variability. Perhaps I have been reading too much into my results.

I wonder if my PSA result would have been different if I got my blood test done a few hours earlier or later?

Old Salt

AFAIK, the PSA test is not subject to hourly variations. But one often reads not to engage in sexual activities or bike riding (basically activities that 'massage' the prostate) in the days prior to the test.

On_A_Journey

And in the blink of an eye, another three pages have been turned on the calendar. Where did all the time go?

Something weird has happened. My PSA only increased 0.01 since last time. My readings have stabilized, and I have no idea why! Calculated doubling time based on the five most recent results is now out to 50.1 months! Testosterone is still low-ish but within normal range.

Recap since late last year:

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.)

Jul 2023 – PSA = 0.57, T 15.0 nmol/l (433 ng/dL equiv.)

Oct 2023 – PSA = 0.58, T 15.5 nmol/l (447 ng/dL equiv.).

PSA nadir was 0.04 in May 2018.

Old Salt

I guess, we can conclude that even though we don't know where the cancer is hiding, it isn't 'multiplying' to a significant extent. A VERY good thing! I hope that that will remain the case for many more months.

On_A_Journey

Thank you, so do I!

I guess if nothing else I'm just kicking the can down the road so to speak, but I'll take it! 😉

On_A_Journey

This is getting ridiculous.

It is now some time since I passed by the biochemical recurrence checkpoint. After that, during 2022, my PSA went from 0.33 to 0.57, a significant but not a dangerously rapid overall result. My latest result shows a PSA reading of 0.59, which for all intents and purposes means negligible change over the last 12 months! And I still have no idea why! Maybe my last PSMA PET Scan is still having an effect, I don't know. I'm still on 3-monthly follow-ups for now, so as per usual, the next result will be important to provide guidance.

Testosterone was up a bit compared to last time, but still in the lower half of normal range, at 18.1 nmol/l (522 ng/dL equiv.).

This follow-up was also the first one with my new oncologist. My previous one, who I saw for almost 6 years, has left for greener pastures. I'm always interested in what comes next and my new guy seems to be in the camp of delayed rather than early treatment with ADT and mentioned that in the absence of confirmed evidence of metastasis down the track, he would wait until my PSA got to 10! I don't agree with that, but I do understand that it's something that I am unlikely to face for quite a while yet, either way. In fact, at the current rate, I'm probably a couple of years away from my next scan! He did agree with me that waiting until my PSA reached 1.0, as long as I didn't experience a sudden spike in PSA in the meantime, was a worthwhile trigger for one.

On_A_Journey

Strange goings on.

Had my 3-monthly follow-up today and it revealed a PSA reading of 0.54 which is a small decrease. In fact, my six most recent results have all been between 0.51 and 0.59 which is pretty stable.

I had no idea that cancerous cells can just sit there and not multiply.

Recap since this time last year:

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

Jul 2023 – PSA = 0.57, T 15.0 nmol/l (433 ng/dL equiv.)

Oct 2023 – PSA = 0.58, T 15.5 nmol/l (447 ng/dL equiv.)

Jan 2024 – PSA = 0.59, T 18.1 nmol/l (522 ng/dL equiv.)

Apr 2024 – PSA = 0.54, T 19.4 nmol/l (560 ng/dL equiv.)

Using those five most recent results, my calculated PSA doubling time according to a nomogram that I consistently use is a ridiculous 141.8 months!

PSA nadir after RP in June 2015 and SRT in Jan 2016 was 0.04 in May 2018.

I am no longer seeing the correlation between T and PSA that I noticed between mid-2022 and mid-2023, but I have noticed that there is a correlation between T and the seasons! It seems to be higher through our warmer months here (Australia), no doubt due to a higher amount of physical outdoors activity and the general level of fitness that goes with it. Even so, it is a relatively minor variation in readings, and the readings have always been within normal range for this 61yo.

Today, my oncologist offered 6-monthly follow-up consultations while still maintaining 3-monthly blood tests, but it's only a 10-minute drive for me and it costs me nothing to attend, so I will see him again in July.

On_A_Journey

I got my latest results today. The stability in my PSA readings that I have enjoyed over the past 18 months or so has now evaporated. I know that it is common for PSA to bobble around a bit, but what I learnt today was a bit of a surprise.

My reading went from 0.54 to 0.74, a 37% increase in three months. It is silly to extrapolate from just two results of course, so compared to the same time last year when my PSA was 0.57, it has increased by 30% in 12 months. Truth be known, if my readings hadn't flatlined over the last 15 months but maintained a small linear increase each time, I might very well have had the same PSA reading by now anyway.

The plan hasn't changed. Stay on quarterly blood tests and follow-ups and get another PSMA PET scan when my PSA reaches 1.0, whether that is next time around or at some other point in the future. If cancerous cells are detected, they will be dealt with. If cells are not detected, consider ADT.

Old Salt

I can't offer significant advice after your latest news, but I see that you are in Australia. In some ways Australia is ahead of the curve with respect to prostate cancer therapies. I hope that those advanced therapies will be available to you, if necessary. For the time being, stay the course, as you are planning.

Best wishes!

Marlon

This is a very informative thread so thanks for keeping it up. A question about PSA significance. Is the PSA number directly correlated to the quantity of prostate cells remaining, or is a measure of the activity of the cells remaining?

Old Salt

https://csn.cancer.org/discussion/comment/1716812#Comment_1716812

Now it gets complicated! Here is what I found on Wikipedia regarding this question:

PSA is produced in the epithelial cells of the prostate, and can be demonstrated in biopsy samples or other histological specimens using immunohistochemistry. Disruption of this epithelium, for example in inflammation or benign prostatic hyperplasia, may lead to some diffusion of the antigen into the tissue around the epithelium, and is the cause of elevated blood levels of PSA in these conditions.[26]

More significantly, PSA remains present in prostate cells after they become malignant. Prostate cancer cells generally have variable or weak staining for PSA, due to the disruption of their normal functioning. Thus, individual prostate cancer cells produce less PSA than healthy cells; the raised serum levels in prostate cancer patients is due to the greatly increased number of such cells, not their individual activity. In most cases of prostate cancer, though, the cells remain positive for the antigen, which can then be used to identify metastasis. Since some high-grade prostate cancers may be entirely negative for PSA, however, histological analysis to identify such cases usually uses PSA in combination with other antibodies, such as prostatic acid phosphatase and CD57.[26]

I have bolded the sentence that is most relevant to the question asked. The quoted paragraph does not explain how the PSA gets into the blood stream from the epithelium. 'Normal' shedding or from cells that have died?

On_A_Journey

Thanks for chiming in and answering that, @Old Salt. I learnt something too from your post. It is a question I have sometimes wondered about, whether for someone like me who has had a prostatectomy and experiences recurrence, if a raised but stable PSA indicates presence or growth. It is always a question that I forget to ask my oncologist though!

From now on I will take my PSA reading as an indicator of the amount of cancerous cells I have on board. If the reading increases, it indicates activity and multiplication since the last test, but if the reading is stable, it still means that the cells are there, but they are just having a nap. But by implication, if PSA decreases to negligible levels due to ADT, why isn't that considered to be a cure?

MJH320

@On_a_Journey - best wishes and thanks for your detailed posts. Just confirming, at this point you are not (and have not?) had any ADT? I am (ignorantly and gratefully) amazed by the relative stability of your condition over quite a long time (again, saying ignorantly).

On_A_Journey

That is correct, @MJH320. I have never had ADT. I have learnt here that it is commonly combined with radiation, but it wasn't even offered to me for my course of salvage radiation. It has been approximately two and a half years since it was suggested to me by my oncologist that ADT might be my next step to push back against my biochemical recurrence if scans don't reveal where the cells are. From that time, I began researching what ADT was all about, including its side effects. If and when the time comes where I need to begin ADT, I feel very confident in my ability to make a properly informed decision regarding the specific treatment to best suit my needs. I have my head around it and I am ready for it. I will not blindly accept what is commonly prescribed.

The recent (until now!) stability in my readings has amazed me too! Thank you for your good wishes.

VascodaGama

Hey mate,

I have been following your thread and the comments posted. Some how I see similarities in the way you want to follow your recurrence and the way I like to continue my treatment. We want to deal the matter based on knowledge. In other words, well informed and in partnership with our doctor.

A note on the "stability" of your readings (which I also experienced along my journey), I would think that our imune system is acting on any infection caused by those cells invading tissues where they supposedly do not belong, therefore, being the responsible for the "attack" on the bandit, killing many and providing a sense of stability in the PSA values.

I think you are doing well in waiting. ADT would work the same if you start it now at a PSA of 0.74 mg/ml or if it gone up above 1.0.

Best

VG

On_A_Journey

Thanks VG.

It's funny how my attitude has changed, even though it hasn't been due to fear of side effects. A couple of years ago I was prepared to launch straight into ADT when my PSA was much lower because of my false negative scans. Now, I'm comfortable waiting, knowing that there is more chance of detection with a higher PSA and little chance of the barn door being busted down soon. I realize that's what you were advising previously, but we all have to experience our own journeys, don't we.

That said, I am aware of some (albeit apparently rare) cases where distant metastasis has developed with low PSA. If my next scan comes back negative again, I will insist on seeing a medical oncologist to discuss my ADT options, especially if my trigger point is reached next visit, because this would indicate a doubling time that is rising exponentially.

VascodaGama

Well, I think you are on the right track.

Similarly to your thoughts, my uro-oncologist in 2010 (after SRT) recommend me to start ADT when the PSA reached 1.0 (from a nadir of 0.05).

There were no PSMA PET scans at the time so we did an MRI and bone scan which were negative albeit the bandit being there somewhere and alive. The low Gleason rate of 3+3 lead to a decision of a monotherapy with Eligard shots for a period of 18 months.

I recall that the concept of treating oligometastactic cancer with spot radiation in SRT failures, existed already in Sweden, at those times, and that there were some successful stories of imaginology exams using an agent known as ferumoxtran-10 (Combidex) in MRI scans that could identify/detect metastases in lymth nodes.

The intent was simply to have an additional answer in the fight against the bandit. ADT or Chemo were the traditional options after SRT but these are palliative.

I did two PSMA PET scans being the later (PSA = 9.46) considered positive identifying metastasis at the pubic bone. The first scan (PSA =1.8) was considered by the radiologist negative due to low SUV. The glare was at the prostate bed which is an area not recommended for added radiation on the top of previous radiated tissues.

We need luck in this journey. I absolutely agree with your decision.

Best

VG

Winnie155

https://csn.cancer.org/discussion/comment/1705274#Comment_1705274

hi, can you please posting the link for this test? I would like to calculate the doubling time on my own too.

On_A_Journey

No worries!

Prostate Cancer Nomograms: PSA Doubling Time | Memorial Sloan Kettering Cancer Center (mskcc.org)

It's pretty easy to use.

Winnie155

thanks. I believe this worsheet only works for PSA above 0.1.