Thanks Lyn,
My apologies for my belated reply!
I too have no idea what the stats are on lymphoedema, or indeed whether in my case the swelling is a side effect of my op or not. It seems likely to me, but I have yet to discuss the problem with a specialist.
Whatever the cause it still seems to be confined to one leg only, and my new black stockings do at least seem to do a reasonable job at controlling the symptoms.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Oh it is definitely a known side effect of having lymph nodes removed during RP which is why not all surgeons remove them automatically. What I am not sure about is whether it is more likely with keyhole than open or whether it is the same whichever type of RP you have.
Hope it improves soon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
If anything it's getting worse! The skin on my right leg was getting rather sore, especially around the ankle.
Another trip to the GP resulted in a diagnosis of eczema. Apparently it's a common side effect of oedema.
I've been told not get any soap anywhere near the sore bits, not even my trusty hypoallergenic shower gel.
I've been prescribed a big pot of Zeroderm, which does seem to help.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I think I was recently told there is a 3% chance of lymphodoema following a prostatectomy including lymphadenectomy
Edited by member 07 Apr 2018 at 15:22
| Reason: Not specified
User
A straw poll on here would give us a much higher percentage than 3% I think
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Can you set up polls on this website?
It does seem very primitive and clunky compared to something like UBB.
Did PCUK design their own bulletin board. If so, why?
User
Bollinge, I think Lyn was writing figuratively. When lymph nodes are removed some degree of lymphodoema is likely, so forget the 3%!
AC
User
I've now had a telephone consultation with the surgeon who was at Leo's controls. I neglected to ask him Lyn's question, but I believe the answer is considerably more than 3%!
Apparently my oedema isn't necessarily a life sentence. It seem there are various pathways carrying lymph from the ankles to the abdomen, only one of which has been cut. With a bit of luck and continued exercise of my calf muscles things may improve of their own accord. That doesn't seem to have happened yet though!
I was due my latest PSA test last week, but the nurse couldn't extract any blood. I was too dehydrated apparently. She's going to try again next week.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Would you like the good news or the bad news first?
Let's start with the "good" shall we? Despite what has admittedly not been a vast amount of practice since the op my better half and I managed to get things together reasonably successfully the other night without any mechanical or chemical assistance. There is certainly some light at the end of the metaphorical tunnel!
On the other side of the coin I had my latest PSA test earlier in the week. The reading is not "undetectable" any more. It is currently all of 0.04 ug/L.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Well that looks like 2 bits of good news to me - 0.04 is okay
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
0.04 is simply fantastic, as is your jiggy jiggy news !!
;-))
If life gives you lemons , then make lemonade |
User
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
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
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
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
The steam treatment is for enlarged benign prostate I believe so no use for cancer?
User
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
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
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
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 07:54
| Reason: Reformatted
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
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 07:55
| Reason: Reformatted
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
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
Seems a perfect plan to me. Especially at such a low figure.
If life gives you lemons , then make lemonade |
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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
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
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
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 17:42
| Reason: Formatting
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
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 |
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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 |
User
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
My latest PSA reading is up to 0.09 ug/L
I saw Cornwall's new oncologist again yesterday. Apparently the threshold at which the NHS thinks a fancy scan might be able to detect something is 0.1, so it looks like I have another 3 months to wait.
I couldn't help but agree with her that zapping my prostate bed with RT pretty much at random at this juncture is not a particularly cunning plan.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Do you know what Cornwall's definition of "a fancy scan" might be?
I was reading a paper a couple of days ago. Patients requiring salvage treatment went through the normal diagnostic and treatment selection process up to, but just short of starting the treatment. The research then did a PSMA PET scan, and in over 60% of cases, the results from this scan changed the treatment selected.
User
Hi Andy,
Do you by any chance have a link to the paper you're referring to?
Last time around I eventually received a choline PET scan in Poole the second time I travelled up there. In view of the Grauniad article I linked to above I'm rather hoping for a PSMA next time. First of all it seems that I have to cross the 0.1 threshold though!
Jim
Edited by member 09 Oct 2019 at 19:26
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim:
Impact of 68GA-PSMA PET / CT on treatment of patients with recurrent / metastatic high risk prostate cancer - a multicenter study
(I should confess I didn't read it carefully. It popped up in searching for something else - the impact of taking hormone therapy on PSMA scan results.)
The NHS does Choline PET scans normally, although some areas will do PSMA in special circumstances. PSMA scans can be done privately for somewhere near £3000 (or less if you go abroad). I presume Choline PET scans are cheaper, but I've no idea the cost.
Both Choline and PSMA PET scans work most reliably (and almost identically, although PSMA fractionally ahead) for PSA >= 2.0
When you drop below 2.0, Choline PET scans drop in detection rate faster that PSMA, so PSMA is better.
Different centres have different lower cutoffs for PSMA - it depends how much they're happy to risk in cost of negative scans. Some are 0.5, but it can still find mets below this, particularly if they are not right next to the bladder or kidneys. (The bladder and kidneys tend to 'white out' because the tracer is excreted through kidneys, and it's difficult to see small mets right next to them.)
Edited by member 09 Oct 2019 at 22:58
| Reason: Not specified
User
Hi Andy,
Thanks very much for the link and additional info.
On reading your bio I'm rather glad to have had Leo give me a robotic RP at the outset despite my initial PSA of well over 100. I also cannot help but wonder if the MDT at Treliske hadn't bothered faffing around with choline scans looking for apparently non existent mets my PSA might still be undetectable.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Well that was unexpected!
I've received a phone call from UCLH and I'm now booked in there for a PSMA scan in the 2nd week of November.
I suppose 0.09 + my current 0.01 rise per month >= 0.1 by then.
Plus perhaps it helps that I am of course a medical man of mystery? Leo somehow got my PSA down from >70 to <0.03 with a few simple snips.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I got the results of my recent PSMA PET scan today.
Nothing out of the ordinary was found, and no further treatment suggested at this time. However my PSA schedule has been increased to 6 weekly, including one today.
I also discovered that my scan involved injecting me with 18F rather than 68Ga
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
18F has had fantastic results at very low levels of PSA and is sightly more stable than 68G - the main research was in Italy, look for reports on FACBC. This is what our onco says John will have if he reaches 0.2
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Sorry Jim, you are quite right ... FACBC is shortened to F18 and is different to 18F :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberHi Lyn,
The paperwork from UCLH states that I had an "18F-PSMA PET MR" examination, which I don't think is the same thing as FACBC?
It seems there are quite a few "18F-PSMA" abd tracers currently being evaluated. Here's an allegedly "2020" review paper:
https://www.researchgate.net/publication/336880969_18F-Labeled_PSMA-Targeted_Radiotracers_Leveraging_the_Advantages_of_Radiofluorination_for_Prostate_Cancer_Molecular_Imaging
"I still don't know which of those UCLH uses at the moment. They performed an extra scan at the end after asking me to empty my bladder, so maybe DCFPyL"
If you could establish and report the full name of the Scan you had it would be of interest, Actually, there are so many scans and variants now that it becomes confusing as to what was precisely used. I do know that the 18F DCFPyL scan developed by Marty Pomper and associates at John Hopkins was being trialed in the USA and Canada with Licence arrangement for Australia and New Zealand. It must have been a couple of years ago now and I contacted the co-ordinater in the USA to ascertain whether I met the trial criteria, I did but was told the trial was only open to indigenous men. It was indeed rated better than the 68 Gallium PSMA one, so you would have done well to get this at UCLH as we seem to be well behind others in taking up new technology. There is another variant termed 18F PSMA 1007 https://www.ncbi.nlm.nih.gov/pubmed/31253741
and possibly other variants too, I have not done much research on this recently.
Edited by member 20 Nov 2019 at 16:33
| Reason: Not specified
Barry |
User
I've just received the results of my latest PSA test - 0.1
I've also had my testosterone tested for the first time ever - 23.6!
Barry - I'm booked in to see my oncologist again tomorrow. If all goes to plan I'll try and remember to pose that question.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I'm just back from my trip to Treliske. Unfortunately my oncologist didn't know off the top of her head what flavour of 18F UCLH are currently using. However she did impart some interesting information.
It seems my current PSA of 0.1 would previously have been the threshold at which she would have considered RT. However the RADICALS-RT trial recently published results showing no better outcome from "early RT" as opposed to monitoring things for a while:
http://www.radicals-trial.org/news/
She will highly recommend RT in my case if and when the number rises to 0.4, but I am at liberty to ignore her advice!
Edited by member 04 Feb 2020 at 23:22
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
The study sounds interesting but I'd like to know a lot more before being happy with its bare summary. For example what does RT straight after surgery mean? Is a random selection appropriate? Was psa velocity not a factor in selection.
I guess for a true comparison it would be totally random but if it had been me given less treatment than needed I wouldn't be very pleased.
If I was high risk I definitely wouldn't want to be in a study and that could bias the results.
Thanks for the link, I'll dig some more.
User
Hi Peter,
I don't know if a more "academic" journal article concerning the study is available online.
When I have a spare 5 minutes I'll do some digging myself.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
The criteria for entry into the study was T3A as a minimum. I was offered the trial and was told the decision to radiate or not was entirely random.
So basically anyone who qualified for adjuvant RT under the old rules (T3A+ post op) and agreed to the trial was randomised into adjuvant RT or wait and see.
Interestingly I chose NOT to enter the trial because although I was T3A I was also G3+ 3 AND had PSA < 0.008 so I had a good shot at a durable remission despite the T3A. As my PSA has since crept up to 0.03 the "new" guidelines to wait until 0.4 are reassuring!
User
Thanks for that info Jonathan,
A good decision! I'm not sure that the 0.4 number is actually "a new guideline" for anyone other than yours truly. I made clear I was in no rush for my prostate bed to be zapped at random! Apparently some others are keen to throw everything at "the problem" at the earliest opportunity.
I have located this brief academic overview:
https://academic.oup.com/annonc/article/30/Supplement_5/mdz394.042/5578034
Adjuvant RT after RP increases risk of urinary morbidity. An observation policy with sRT for PSA failure should be the current standard after RP.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Interesting, Francij1, that it's T3a minimum as I'd have thought psa rise and velocity would come into it at least. Brave of anyone not to be treated by random selection. I still think it depends on your own condition and with a psa <0.008 I'd agree. I've read that the accuracy can be not so good at all at those levels and I'm happy with my hospitals <0.05.
I noticed you'd, Jim, written before you didn't want to rush to having your prostate bed/pelvix radiated blindly.
I recently had a random (false) psa result at a different hospital that led me to a weekend of serious thinking and the blind shot was top of my priorities. Although I thought I'd several months to go, and the velocity was so high I wasn't sure they'd let me have it, if it carried on. It's a careful balance about how long to wait and that study could be of interest.
Anyway a 2nd psa test at the usual place was undetectable but it made me realise what an edge I could be on. Thainks for the link I'll look at this.