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Leo Robot spares some nerves

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User
Posted 24 Aug 2018 at 18:13

In which case I'll rephrase things:

0.04 isn't quite as good as a never ending series of <0.03s

They always used to tell me that conjugal activity would raise one's PSA for a while!

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 24 Aug 2018 at 18:44
0.04 is simply fantastic, as is your jiggy jiggy news !!

;-))

If life gives you lemons , then make lemonade

User
Posted 24 Aug 2018 at 22:46
It is interesting how every hospital in the UK seems to have a different value for undetectable. I would love to know why yours picks less than 0.03?? .

Mine used to use less than 0.008 then they changed it to 0.1 but strangely could still tell you sup sensitive value if pressed!

I have moved to another test now so it goes to 0.001 as I think the rate of increase over time is a critical treatment factor.

Anyway the point of this ramble is to say when mine climbed to 0.03 I had a series of second opinions and one of the guys was named the top urologist by the daily telegraph (or was it the mail? ) he reassured me that he had found that guys who regain natural erecting often have a detectable PSA and that I shouldn't rush into treatment.

But with your N1 pathology I think I would be pressing for a second opinion and maybe PSMA imaging - check out ulsterman thread..

User
Posted 25 Aug 2018 at 08:39

Thanks for your good wishes Chris!

When it comes to Great British euphemisms we prefer "humpy rumpy" in our household.

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Aug 2018 at 08:50

Thanks very much for those tips Jonathan. I'll go track down that thread.

And you learn something new every day. I had no idea that there might be a germ of truth in my "conjugal activity" joke!

Actually I know somebody who works in an NHS lab. I'll ask him your "undetectable" question to see if there's any rhyme or reason to it.

Jim

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Aug 2018 at 13:08

A bit late for me of course, and I can assure you that this isn't my usual reading matter.

However I nonetheless just stumbled across this article:

www.dailymail.co.uk/news/article-6080191/Breakthrough-five-minute-steaming-treatment-cures-embarrassing-prostate-condition-without-surgery.html

A radical new steam treatment could offer hope to millions of middle-aged men who suffer with an enlarged prostate.

The five-minute procedure to shrink the gland cuts the need for surgery and comes with minimal side effects.

Health watchdogs are expected to give it the green light for routine NHS use tomorrow.

Is  Rezum being discussed elsewhere on here?

Jim

 

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Aug 2018 at 13:49
The steam treatment is for enlarged benign prostate I believe so no use for cancer?
User
Posted 25 Aug 2018 at 15:15

That's my assumption also.

Hence my "a bit late for me" remark.

Interesting news nonetheless.

 

Edited by member 13 Dec 2018 at 21:15  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 25 Aug 2018 at 16:47
The Daily Mail? Don’t shoot the messenger!

Yes, I think the procedure is to treat benign hyperplasia only. My 69 year old friend recently had his BPH treated by something called “green laser”, involving a urethral invasion 😩

He was in hospital overnight but reports his continence is fine, erectile function back to normal and best of all flow like a torrent.

This steam innovation will still involve pissing razor blades for some time post-op, I am sure!

User
Posted 25 Aug 2018 at 20:40
The PSMA scan is good at showing cancer where there is low PSA but I believe it is asking a lot to expect it to identify it as low as 0.04
Barry
User
Posted 13 Dec 2018 at 21:14

My latest PSA reading is down to 0.033.

I've also just taken my 6 monthly trip to visit my urologist. He reckons the apparent rise last time might be due to the fact that Cornwall had started using a new test with greater resolution.

No action indicated at this time, apart from continuing with quarterly PSA tests. If the readings rise (significantly?) twice in succession radiotherapy will be on the cards.

 

Edited by member 21 Sep 2019 at 06:54  | Reason: Reformatted

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 20 Sep 2019 at 21:02

A slightly belated 6 monthly update. My PSA reading has risen to 0.06. Almost doubling in 6 months led my urologist to conclude that I was probably in need of salvage RT. He wrote to my GP:

I have discussed with [soulsurfer] that his rising PSA trend would imply local recurrence of his disease. Originally histology from his prostatectomy was high risk.

I will refer him across to the Oncologists and I have arranged a bone scan and CT to re-stage him.

As anticipated, the scans revealed nothing out of the ordinary. As luck would have it the Royal Cornwall has recently appointed a new oncologist, who's moved down from London and is a PC specialist. I saw her for the first time a few weeks ago, and her opinion was rather different. Verbally at least her view was that zapping the prostate bed when you've no idea where to aim was not a good way forwards. Apparently she has often seen PSA levels decline again from these levels.

Next progress report after my next 3 monthly PSA, which is due in mid October.

 

 

Edited by member 21 Sep 2019 at 06:55  | Reason: Reformatted

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 20 Sep 2019 at 23:54
Looks like you might be in need of a Gallium 68 PET-PSMA scan in due course, only recently available on the NHS, even if you have to travel some distance to get one.

Best of luck.

Cheers, John.

User
Posted 21 Sep 2019 at 06:37
Seems a perfect plan to me. Especially at such a low figure.

If life gives you lemons , then make lemonade

User
Posted 21 Sep 2019 at 06:52

Thanks John (and Chris),

The consultant did tell me that "a PSMA scan" was now available at the hospital she had recently left in London, but that I didn't satisfy the necessary criteria.

No specific mention was made of Gallium however. Is that theoretically available on the NHS wherever in the country you reside? If so I'd wager it's a long drive from North Cornwall!

I was also informed in writing that I "will be put through the MDT, to see if they would also want to consider an MRI or PET scan", but I assumed that would be the choline one I (eventually!) had in Poole the first time around.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 21 Sep 2019 at 15:17

Doing my due diligence I came across this article:

https://www.bjuinternational.com/bjui-blog/psma-at-the-cutting-edge-of-prostate-cancer-treatment-report-from-a-psma-symposium-convened-at-the-university-of-oxford/

Amongst other interesting information it states that:

It is very disappointing that NHS England saw fit to withdraw funding for the gallium tracer required for PSMA-PET scanning in August 2018. This does seem rather short-sighted given the clear evidence favouring the utility of PSMA-PET over other modalities such as FDG or Choline-PET, both of which are still funded.

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 21 Sep 2019 at 15:55
I’ve had both Choline and Gallium68 PET’s on the NHS , both with substantial PSA readings. My PSA is now 190 and they aren’t offering another PET. I have both a full body CT and full body Bone scan 30th Oct. I realise these scans can be life changing regarding treatment , but I feel their fail rate outnumbers their detection rate. Also the reliability of the tracer being available at the right time is bordering on tragic. It took me 6 attempts and 6 journeys to achieve just two scans. I guess it’s too expensive for the NHS until it is streamlined

If life gives you lemons , then make lemonade

User
Posted 21 Sep 2019 at 16:39

Thanks for the info Chris,

 

When did you have your Gallium PET scan? After the date I quoted above? PET is still available but not PSMA? Or are they actually the same thing? Does John's comment indicate Gallium PET/PSMA is now back on the NHS menu?

It seems I was lucky with my one choline PET/CT scan so far? It only took me two trips from North Cornwall to Poole!

 

Forgive me, but I've not been active on here for a while. I seem to recall you're not too keen on "interventions"? You're currently not endeavouring to get your PSA down?

 

Jim

 

 

Edited by member 21 Sep 2019 at 16:42  | Reason: Formatting

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 21 Sep 2019 at 17:09
Hi , the Gallium 68 and PSMA PET are the same thing. Yes mine was pre Aug 2018. I had a Choline too. I’m nearly 4 1/2 yrs post op. I have bipolar issues. They could barely get me into theatre. I was in 15 nights post op due to mental state. Post op results were rubbish at psa 1.5 and doubling 12 weekly. Been offered RT many times but always told due to multiple lymph node involvement that it was unlikely to be curative. So I didn’t want more random damage down there !!! I’ve had so many scans it seems I’ll die of them before PCA !! No scans have shown any cancer anywhere in my body so far , but the psa doesn’t lie. The doubling time has reduced but the figure is high. I’m not in a rush to die but have enjoyed total recovery from surgery to the full , and many holidays and plenty of family time. Seems I’ll have to have palliative HT soon and / or Chemo but I’m not in a rush to end this good life.

If life gives you lemons , then make lemonade

User
Posted 21 Sep 2019 at 20:17

Thanks very much Chris,

Well I'm certainly not keen on being zapped at random either, or growing moobs for that matter.

 

We're both medical men of mystery it seems? My PSA started at 130ish then halved by the time I had my op. After the biopsy I wanted to let Leo loose PDQ, but the MDT wanted yet another scan to find the mets they were sure were there somewhere. They still haven't found 'em. PSA undetectable doesn't lie!

 

It may not lie, but it obviously doesn't always behave the way the medics expect it to.

 

Keep on trucking!

 

My very best wishes,

 

Jim

 

 

 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
 
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