I managed a session in mid March, but then I contrived to tweak my back putting my jeans on at the start of April which meant I missed out on the subsequent extended period of onshore swell and offshore wind.
However I'm back cycling again now, so hopefully I'll be able test the water temperature of the North Atlantic again soon!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I had another PSA test last week. A registrar I've not previously spoken to called today to inform me that the result shows a drop to 0.26 ug/L.
Since the oscillations seem to be stable rather than increasing he suggested going to a 4 month interval between tests. I didn't quibble!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Really great news Jim. Just had a look through your profile, gives us all hope that a rising PSA doesn’t necessarily mean more treatment 👍
You’ve obviously been through a lot, hope you are also feeling well.
User
Hi Elaine,
My apologies for my tardy reply.
Actually I rather feel that there are plenty of people here who have been through a lot more than me! In my conversation with my oncology nurse a few months ago I was assured that in some cases PSA readings can oscillate in the same region as mine for years on end. Long may it continue in my case!
More recently I was also called by the surgeon who performed my operation. He explained to me that whilst I may well have microscopic secondaries "the cancer factory" has been removed. I have no idea what rhyme or reason there may be to some people's PSA going ballistic in such circumstances, and others doing what mine is currently doing.
In more general terms my GP is currently anxious for me to go back on some of my heart meds. I was hoping to avoid that, but apparently my iron levels are slightly low and my blood pressure and cholesterol readings are not to his liking.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
No problem Jim.
Definitely long may it continue 👍
It’s really interesting to hear what the doctors have said, how it can just remain that way for such a long time. I’m hoping it would stop me from panicking if robs PSA rises (although I’m sure it won’t ha)
Robs GP has been wanting him to go on beta blockers for sometime because of fast heartbeat. I often think that it has been the HT that caused it, and now his testosterone is increasing he’s not getting them much at all….without any medication. Whether it’s coincidence I don’t know.
Hope you get sorted out soon with your cholesterol and BP 👍
User
I unexpectedly had another PSA test today. I went for what I thought was going to be a BNP test. The nurse assembled three bottles, so I asked what they were all for. I only got an answer after all the bottles were full. At the first attempt, which is unusual for me!
"PSA, full blood count and BNP"
Whilst I await my unanticipated PSA results my GP's pharmacist has got me back on low doses of ramipril, bisoprolol and a new (to me) statin - Rosuvastatin. Hopefully my liver won't object to that one!
My resting heart rate is already in the target 55-60 BPM range, but apparently ramipril and bisoprolol both benefit the heart apart from their headline functions.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jonathan will no doubt be pleased to learn that I have recently managed a summer bodyboarding session.
I've also finally received the results of my last, albeit erroneous, PSA test. Up to a new peak of 0.39 ug/L. I'm told "it's nothing to worry about"!
I stuck with the statins until my most recent set of bloods, then I stopped taking them. They were turning me into a zombie. Over the last week two different people have assured me "You look well Jim". Obviously previously I didn't!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
This morning I received a call to book me in for another PSMA PET CT scan in Plymouth next Thursday. Which reminded me that I haven't been faithfully updating this diary!
My PSA had risen to 0.58 ug/L by the end of January. Post test I was called once again by a "GP interested in oncology". Once again I was assured that my current doubling time was nothing to worry about. "At this rate you're more likely to die with prostate cancer than of prostate cancer."
This time around I quibbled a bit. I was after all booked in for another scan in Autumn 2021 which never happened, and more recently the oncology nurse had told me that another scan was indicated if I had 2 consecutive increases in my PSA reading.
After some discussion with the oncologist in Truro I was informed that I'd been put on the waiting list for a scan.
To be continued....
Jim
Edited by member 03 Mar 2023 at 16:05
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi Jim,
I've just read your profile and some of your posts. It's quite a story and an interesting set of psa results. My psa is slowly rising and had a jump and a drop.
I wondered if you're on the NHS or if you paid for a PSMA test at psa 0,09. The hospital I'm with said it would be 0.5 before they sent me for one. I might arrange to pay for one at about 0.14 thinking it might be a bit higher when I actually get it, if it gets that high. Although I know it might be a bit early.
I also notice your psa was at 0.1 for a long time then went to 0.2 and 0.3. Were they not measuring to two decimal places for a period as it seems odd for it to freeze at 0.1 then go to 0.2 and 0.3. My psa went to 0.1 this month and I'm now thinking of contacting the nurse to find out if it's to one decimal place. Typical it's Friday at 5pm when I read that so will wait until Monday.
I'd have thought they'd have given you RT before 0.5. There was recently discussion about whether some cases aren't detected by psma. Yet there are people on here whose psma scan detected a lesion not in the prostate bed so it's not clear which route is best.
Are you hoping the scan finds something or happy to wait longer? I'm pretty sure I'd want to find it. It's good that you appear in bright form. All the best Peter
User
For info. I initially had brachytherapy in 2015 and was cancer 'free' until 2021 when my PSA started to rise again (6.87 Oct 2021).
In Dec 2021 I had a salvage RARP. Unfortunately 3 months afterwards PSA was 0.49 meaning that all the cancer hadn't been removed.
I've had 2 PSMA Scans since and my PSA in now 0.89 but they haven't been able to detect where the cancer is and they are waiting for it to rise to about 1.2 before giving me another PSA scan.
Initially they told me that they don't usually recommend a PSMA scan unless the PSA is at least 0.5 as below this they are often unable to detect where the cancer is.
User
Hi Peter,
I'm on the NHS. No choice!
My previous consultant had previously worked at UCLH, which may have helped get me an appointment there when none were unavailable here in the wild and woolly West Country. Immediately post-op my PSA was quoted at < 0.03. Then it was quoted to 3 DPs. Then suddenly it went back to just 1 DP. I've no idea why I'm afraid.
If you read back through the thread, I found myself on a conveyor belt to SRT a while ago. However I decided to jump off it. Quoting my slightly younger self, "At our face to face meeting I pointed out to my new(ish) consultant that I was not of a mind to simply 'throw everything at it'".
My first consultant certainly seemed to hold the view that it's important to detect the location of supposed secondaries if at all possible. If there's something there outside the prostate bed I would definitely like to find it before being "zapped at random"!
Bear in mind that I'm a medical man of mystery. My first ever PSA test revealed a level of 131 ug/L, but I lived to tell a tale of "undetectable" for quite a while. Apart of course from that pesky 1 and bit mm +ve margin. Perhaps what's left pumps out far more PSA than "average"?
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi Zumerset,
I'm sorry to hear about your post salvage "relapse".
See just above for a bit more of my history. Perhaps these "magic numbers" depend upon where you're located, and perhaps they change with time? I have to admit that I have sometimes wondered if the thresholds have generally increased due to the Covid-19 pressures on the NHS?
Certainly nothing much has been detected at < 0.5 ug/L in my particular case.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Alliance Medical Imaging just called, fortunately before I hit the road.
Production of the radioactive tracer "failed". I'm now booked in for next Wednesday afternoon instead.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim , better luck for next time, it's annoying but not alot we can do.
Thanks Chris
User
The second time did prove to be lucky Chris, apart from the abysmal weather yesterday afternoon here in soggy SW England.
My current consultant (or a member of his team) would like a chat in Truro at 9:20 on the 30th to discuss the results of my scan. Given the distance from here to there I think I'll try and arrange an alternative appointment.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Shortly after my previous post we received a "no fault" Section 21 eviction notice. Since then I have been engaged in lots of frantic activity, and hence not endured any further treatment.
After an exhaustive search we luckily managed to locate a suitable property on the other side of the River Tamar from our previous abode. Then we had to move "house", including 2 businesses, two "bi-directional" electric vehicle charging stations and an artist's studio to somewhere with room for all of the above. Plus a car park big enough to hold aforementioned EV chargers and several cars/vans.
I had a video conversation with my latest oncologist last week, who fortunately has a very nice "bedside manner". Barring any further unanticipated contingencies the plan is for another PET scan in the New Year. Assuming that reveals nothing beyond the by now familiar glow on the scan from a (presumed) lymph node in my left pelvic sidewall, SABR PDQ is the order of the day.
My latest PSA reading is 1.47 ug/L
Jim
Edited by member 15 Dec 2024 at 13:33
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Thanks for the update, good luck with your new place.. Good to hear SABR is becoming more routine in the UK
User
The conclusion of the report on my most recent PSMA PET/CT scan stated that:
"Left pelvic sidewall activity is favoured to relate to the ureter, with good positional correlation noted with previous imaging display ureter. Allowing for this no metastatic disease identified."
My current consultant views this as "good news", and is now suggesting a more traditional 20 day course of radiotherapy. I am left wondering about the location of whatever it is that is causing my rising PSA readings. I've just had another PSA test, and I will hopefully find out the result tomorrow.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim, did the scan show activity in the prostate bed or nothing at all.
Thanks Chris
User
Hi Chris,
None of my by now numerous scans have revealed anything untoward going on in my prostate bed.
My latest PSA reading has fallen from 1.77 last time to 1.09 ug/L
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim , a PSMA scan at 1.4 revealed nothing for me, six months later the PSA was 6.something and multiple sites were found.
I would be asking for 3 month tests if you can get them.
Thanks Chris
User
Thanks for the info Chris,
Actually I was offered 2 monthly PSA tests without having to ask. However the GPs here in North Devon recently decided to refuse to perform blood tests ordered by hospital consultants.
I was offered a last minute slot at a hastily arranged phlebotomy clinic at the local community hospital, and rushed over there this afternoon.
Now I have a hole in both arms and one in my left hand, including the remnants of a large "blood blister" inside my right elbow!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Time flies when you're enjoying yourself? Here's a somewhat tardy update from yours truly!
I had another PSMA PET/CT scan in March of this year. The report took us back to square one:
"No uptake within the region of the prostatic bed. Intensely avid focus abutting the left pelvic sidewall with SUV max of 51.4. This is presumed due to nodal activity within a tiny node adjacent to the left ureter. No pathological uptake within the skeleton."
I met with my oncologist once again on Thursday. I enquired about a variety of potential "focal" treatments to the aforementioned "tiny node", but the post consultation letter assures me that "all of which would not be indicated in his situation".
I will be booked in for another scan in the near future to "ensure his disease remains confined to the pelvis."
I expect the subsequent MDT meeting will once again recommend 2 years of Relugolix in conjunction with 20 sessions of sRT. However, as the letter also points out, I still have "some concerns about external beam radiotherapy to the prostate bed with hormones due to the potential for side effects"
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Nice to hear from you Soul surfer! Was he able to explain why focal treatment was not suitable?
User
Hi Jonathan,
Not in terms that made sense to me!
The argument seems to be that there must be microscopic mets hiding somewhere in my prostate bed or lymphatic system, even though numerous scans over 9 years have failed to find any of them. "Focal" treatment to one modest lymph node won't get all of them. The best chance of "curing" me is the aforementioned course of HT/sRT.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Hi, Jim.
Your journey interests me. I'm almost four years since RARP, my PSA has remained undetectable. However, I'm still at high risk of recurrence and I like to keep abreast of how others facing it, deal with the problem.
Like you, I also have heart issues. I suffered a heart attack three years ago and had a couple of stents fitted. It's highly likely that more treatment may be needed.
During the last 8 years, Your PSA has risen fairly steadily from undetectable to about 2. It seems to flucuate quite a bit, is there any comfort in knowing, that wherever the rogues cells are, they appear idolent.
I'm more afraid of my heart seeing me off that cancer problems. I know it's a bit of a random question, but do you feel the same? Has dealing with another serious coexisting health problem, affected how you deal with PCa?
I apologise for slightly drifting off topic.
Edited by member 11 Oct 2026 at 12:42
| Reason: Typo
User
Hi Adrian,
Long may your "undetectable" PSA continue!
In answer to your questions, yes & yes. My own PSA doubling time is a bit hard to determine given all the bouncing around of the numbers, but at least it doesn't seem to have gone "exponential" yet. It seems to me that zapping or surgically removing the only known cancer after 9 years would be a logical way forward, but the local MDT seem to disagree with my assessment.
I also raised the issue of my "comorbidity" with the oncologist last week. Not least because my most recent PCa scan also mentioned "Sternotomy and evidence of coronary artery bypass grafting with associated coronary artery calcification".
I cannot help but wonder whether my calcified coronary arteries or prostate cancer is likely to carry me off first? And whether the side effects of treatment for the latter might hasten the former?
The relevant probabilities are even harder to pin down than my PSA doubling time!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim, this is Lola, a worried woman in Spain. Can I ask you something?
During the period after your Leo's job, when your PSA was gradually rising, but with some bouncing, were you on ADT or any other treatment or just monitoring your PSA?
My husband had a Gleason score of 3+4 (7) and his cancer came back four years after surgery.At 0.34 PSA he then had ADT and RTH. His PSA remained undetectable for two years, but now it’s started rising again.
His oncologist wants to wait until his PSA gets to 1.0 before doing a PSMA PET and then decide what to do. He’s now 78.
I really hope things go better for you, my husband and everyone in this supportive place.
All the best,
Lola
User
Hello Lola,
Thanks for your good wishes, and I'm sorry to hear of your husband's recurrence. His path has been different to mine.
My first ever PSA test came back at 131 ug/L. Following the subsequent robotic prostatectomy I have had lots more PSA tests, several scans, but no additional "therapies" as yet. I had my first scan when my PSA had risen from "undetectable" to 0.1, but it revealed nothing. My PSA was well over 1 by the time a "a tiny node adjacent to the left ureter" was tentatively identified.
My current oncologist is keen to start me on ADT/sRT, but thus far I have resisted. I'm not very keen on the potential "side effects"!
Best wishes,
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Thanks a lot for your response, Jim. I can see you're fighting with no weapons other than your own power and courage, brave guy! May this continue to keep you strong.
Best,
Lola
User
I had an appointment for another PSMA PET/CT scan on Friday afternoon. Having driven 40 miles through wind and rain I received a phone call 15 minutes before the appointed time to inform me that they hadn't got my tracer. Possibly an adverse side effect of Storm Austen?
I now have a replacement appointment on Monday morning.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
That's not fair, sorry to read that. Hope next monday you can make it
Good luck and stay confident, I can see you are, but be cautious too.
Best wish,
Lola.
User
Tracer past it's sell by date
User
How disheartening, Jim. I can fully understand how disappointed you must be.
I had a very anxious two months wait for surgery. On the first scheduled date, I was admitted to hospital and cancelled due to a lack of beds? Me and my wife were devastated.
I had to wait another month for the rescheduled surgery date. I was again admitted to hospital. Consent forms were signed and I was all gowned and labelled up for surgery. Then, at the very last minute, they cancelled due to anaesthetist's concerns. Me and my wife, cried all the way home.
Another months wait, but third time lucky.
Hope all goes to plan on Monday, mate. Good luck.👍
Edited by member 27 Oct 2026 at 11:07
| Reason: Additional text
User
Thanks for all the good wishes.
Changing the subject slightly, and given my current MDT's desire to put me on 2 years worth of HT PDQ, I've just finished a PCUK webinar on the topic. For more info see:
https://prostatecanceruk.org/prostate-information-and-support/get-support/our-specialist-nurses/adt-the-lowdown
It was definitely a useful experience. Given my long experience with ED I found myself supporting the nurses' suggestion of employing vacuum pumps. I also managed to start an interesting discussion about genetics, prompted by my recent introduction to Prostate Progress:
https://community.prostatecanceruk.org/posts/m318447-Prostate-Progress
I also found myself wondering why "chemical castration" is favoured over non-steroidal anti androgens for initial "hormone therapy". I didn't have time to ask the nurses, so I asked Google instead. Gemini told me:
"Chemical castration (using LHRH agonists or antagonists) is favoured over non-steroidal anti-androgen (NSAA) monotherapy for the initial treatment of advanced or metastatic prostate cancer because it is significantly more effective at slowing disease progression and improving survival."
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Since I benefit from a paid subscription to ChatGPT for "work" I asked it the same question, which elicited a very long answer. This was the AI's conclusion:
"Medical castration has traditionally been preferred because it produces more consistent suppression of androgen signalling and, crucially, better survival outcomes in metastatic prostate cancer.
But this comes at a considerable physiological cost.
The question of whether sufficiently potent androgen-receptor blockade could achieve comparable cancer control while preserving the benefits of normal testosterone concentrations remains scientifically interesting, although the newer agents have their own adverse effects.
One question that would substantially alter the discussion is whether you are considering newly diagnosed localised, locally advanced, or metastatic prostate cancer. The relative merits of castration and anti-androgen monotherapy differ significantly between these settings."
Jim
Edited by member 27 Oct 2026 at 13:00
| Reason: Formatting
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Following our discussion about hormone therapy I asked ChatGPT:
"What treatment would you recommend, emphasising "quality of life" over longevity, for the specific case of a single ~1 cm secondary in a pelvic lymph node 9 years after a radical prostatectomy?"
That resulted in a long and continuing discussion! When discussing my assorted scan results I quickly learned one thing that I was previously unaware of:
"The central question is whether the intensely avid focus corresponds to a discrete anatomical lymph node that can be distinguished from the adjacent ureter.
An additional consideration is which PSMA radiotracer was used.
For example, gallium-68 PSMA-11 and fluorine-18 DCFPyL commonly produce substantial urinary activity. Fluorine-18 PSMA-1007 generally produces less, although urinary activity can still occur.
The choice of tracer therefore affects the likelihood of this particular imaging pitfall.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10027805/"
I have established that the tracer that will be used for my scan next will is PSMA-1007. I've yet to clarify which tracers were used in my previous PSMA PET/CT scans.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
My postponed F18-1007 PSMA PET/CT scan in Exeter was cancelled again yesterday. At least this time I was advised of the fact before I hit the road!
Third time lucky in Plymouth on Thursday 12th?
Jim
Edited by member 07 Nov 2026 at 09:27
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
User
Thanks Jonathan.
My fingers and other appendages are firmly crossed!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I Hope it's good news!
Lola
User
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
And it's not even Friday 13th yet!
Instead of now having radioactive tracer coursing through my veins at Derriford Hospital I've just had a hefty dose of caffeine back at home instead.
Since it's a nice sunny day, and Lisa the LEAF's traction battery isn't what it once was, we decided to take the shortest route to Plymouth, through the glorious Devon countryside. (N.B. Lisa is our ancient EV)
We're not entirely sure what happened, but my Galaxy smartphone lost signal at one point. It seems Google Maps decided to choose the "fastest" route when it reconnected. Kasia, who was navigating, failed to spot the change.
Hence we found ourselves stuck in a narrow Devon country lane behind an agitated cow and two pickup trucks, one of which sported a big trailer. 20 minutes later we finally emerged on to what counts as a main road in this neck of the woods.
By now it had become apparent that the Great God Google had taken us on a massive detour, both time and distance wise. Hence there was no longer enough juice in Lisa's battery pack to get us to Plymouth without stopping for a recharge.
Cutting the shaggy dog story short, by the time we spoke to somebody at Derriford, after leaving 3 voicemails, there wasn't enough radioactivity left in today's batch of tracer to fit me in at a later time.
The hospital just called. The 4th attempt at a scan is now booked for 15:45 this Saturday.
Jim
P.S. Beware of AI generated scams and spams! See "Richard's" post above, which will hopefully be removed forthwith
Edited by member 12 Nov 2026 at 12:55
| Reason: Formatting
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Oh my! That's unbelievable! It seems as though something somewhere was trying to sabotage you. Any new appointment at least?
Saying "be patient" is not appropriate in this case, I'm afraid.
Stay strong.
Lola.
User
It's autumn even the trees are dumping their old Leaf's
User
I missed the last paragraph in your post on that new appointment for a 4th attempt I was asking about. Sorry, when reading in English it often happens to me.
Fourth time's charm?
Lola