Post RP results ...

User

Posted 02 Oct 2023 at 12:17

Originally Posted by: Online Community Member

Hi Elaine- that’s a great idea about the app- I would much rather check that than ring . We are just checking at this v moment whether he’s got the app and if the results are on it.

No it wasn’t a less than 0.04 … but people seem to still consider this a good result, me i’m half glass full person so I’m not convinced! Good luck for next weeks test- you’ll let us know the result? 🍀

Hope you managed to find it on the app.

Alot only test to less than 0.1 so it would be undetectable at those hospitals, that’s why it will still be a good result. You’re doing the right thing keeping a close eye on it too. Atleast having an actual number, if it starts to rise you will be able to seems trend between tests.

And thank you. Yes I will update everything when we get the results. We have a telephone appointment regarding his planning scan too so got ‘ALL’ 🤦🏻‍♀️😂 my questions ready! x

User

Posted 03 Jan 2024 at 21:58

Just got the second post RP PSA. Doubled to 0.08 from 0.04. Presume this isn’t great news but the next test result in March will confirm if this is a definite trend upwards?

User

Posted 03 Jan 2024 at 22:27

That probably isn't very good news. With these small numbers it isn't wise to get hung up on phrases like 3 month doubling time. At the moment it is just two small numbers one a bit more than the other. Yes in three months it will probably be above 0.1 and though that is still not defined as a recurrence it is in the slightly worrying territory.

It is generally accepted that a slow rise from a low number is probably cancer left in the prostate bed, and usually SRT is very effective. Of course an onco will have to decide this when it is appropriate to get them involved.

I think you will just have to wait and see, but others might suggest switching to one month tests.

Dave

User

Posted 03 Jan 2024 at 22:51

Thanks Dave appreciate your very helpful thoughts. If the PSA rises again in March above 0.1 what’s likely to be the next plan of action given his OH’s not great pathology?
BW

kate

User

Posted 03 Jan 2024 at 23:37

Sorry to hear about this rise.

As I said before when robs first went above undetectable 0.029 for us, I got him tested every 6 weeks so I could try to gauge how quickly it was rising. I also started to put in place appointments with urology and pushed to see oncology just in case there were long waiting times. We were good to go with RT straightaway then.

It’s been a tricky few months but hopeful we will get the results we want eventually.

Best of luck x

User

Posted 04 Jan 2024 at 00:03

Kate, not the best start to the year. At 0.1, I was was officially brought back under the umbrella of urology,in reality I had not been outside the urology care. I was monitored every three months and at 0.27 I started salvage RT. At some point you need to be seeing an oncologist, that may be triggered by a particular level at your hospital.

My histology was quite poor and I have had three more goes post RARP at eradicating the cancer, just waiting for another PSA test. I was diagnosed just over ten years ago and not planning on going anywhere just yet.

Plenty of options open for you are techniques are better now.

Thanks Chris

Edited by member 04 Jan 2024 at 00:04 | Reason: Not specified

User

Posted 04 Jan 2024 at 00:18

Hi Kate,

I had RARP in Feb this year, following pathology, on the removed prostate, my Gleason was upgraded from 8(4+4) pre op to 9(4+5) and from T2c pre op to T3a.

Since the op, I've had 3 x 3 monthly PSA checks. 0.02, 0.05, 0.02. The slight rise was put down to that test being done at a different hospital. I've got another test at the end of this month.

All my PSA checks thus far, as far as I'm aware, are classed as undetectable. I've been informed that if they reach 0.2 then further treatment maybe considered.

I really find it difficult to compute such miniscule numbers, but like most dread recurrence. It's like sitting beneath the sword of Damocles.

Best of luck and I hope the slight rise can be put down to some innocent blip.

Adrian.

Edited by member 04 Jan 2024 at 00:21 | Reason: Spelling

User

Posted 04 Jan 2024 at 17:27

Kate - sounds like we are following the same path :(

First post op PSA was 0.01 in July but December one was 0.12 so I have a consultation tomorrow (preplanned) and I think she is going to say retest in March. I don't think they will do anything until it gets > 0.2

Oh what fun - NOT!!

User

Posted 04 Jan 2024 at 19:07

Thank you so much everyone for your thoughtful and supportive comments. Elaine, how did you manage to get six weekly PSA tests? Did you strong arm your GP?

Chris, we very much hope to follow your route by zapping individual spots of cancer without resorting to hormone therapy, but if we need to, I guess there won’t be much choice.

Steve how did you get on today??
Adrian as much as I’d like to think this is a blip I doubt it v much- my rational head says odds were stacked against him and the results are tested at the same lab so unlikely to be an error due to a different machine, but then you never know!
Good luck everyone as we march on x

User

Posted 05 Jan 2024 at 02:42

Originally Posted by: Online Community Member

Thank you so much everyone for your thoughtful and supportive comments. Elaine, how did you manage to get six weekly PSA tests? Did you strong arm your GP?

Hi Kate,

We have a seperate bloods line in our area so I ring them to book him in, then closer to the appointment I ring the GP surgery to tell them what blood bags I need.

I think it did get questioned once but I explained how important it was for us to be able to closely monitor the rises so we could act quickly and also see how big a problem it might be. I recall even at 0.029 the GP acknowledged this rise and I assume he was happy enough for to let ne just get on with it x

User

Posted 05 Jan 2024 at 08:05

Thank you Elaine- that’s very helpful. Paul has just emailed the cancer nurse at the hospital for advice and depending on what they say we’ll make a decision about earlier testing.
sorry to read that you and OH are having a challenging time - guess you’re not sleeping well given the time of your message ? Take care of yourself Kate x

User

Posted 05 Jan 2024 at 10:18

That’s good then hopefully they will get back to you soon. More regular testing isn’t for everyone but really helped me, I knew it was rising and what it would eventually mean so PSA anxiety was there all the time rather than just close to tests. With Robs G9 we felt better to act quickly even though this scan was negative.

Yes hopefully we will have his ultrasound results back soon and fingers crossed it will be ok. My dad is actually in hospital so that was me just getting back last night when I messaged. Quite unbelievable seeing what a UTI can do to someone 🤦🏻‍♀️

Take care and keep us updated x

User

Posted 05 Jan 2024 at 13:36

Originally Posted by: Online Community Member

Steve how did you get on today??

It was actually today (5th) and it went OK, Consultant said it wasn't as good as she hoped but from the histology report it didn't surprise her. Scheduled another PSA test in March but she explained that she cannot do anything (due to procedures) until the PSA reaches 0.2 - this is basically what I expected.

We did discuss erections (I'm NNS) and she was more than happy to give me a prescription for EDEX (basically the same as Caverject I believe) which is approved in the French medical system - Invicorp is not.
So now another appointment at the end of January to see the nurse who will show me how to inject my penis and to ensure that I have the right dosage.

She has also scheduled me in for Perineal Physiotherapy that is aimed to help incontinence - I think this is to get me ready for SRT as you need to be able to hold a full bladder during treatment - from what I can gather it uses a probe in the rectum, similar to a TENS machine, that stimulates and thus strengthens the muscles.

So all pretty positive so far :)

User

Posted 05 Jan 2024 at 22:36

Glad that it went as well as poss Steve. We’re still waiting to receive a copy of the letter sent to the gp re not quite sure what the technical term is but the pellet you insert in the top of the penis. So your threshold is 0.2- be interesting to see what our hospital says.
however OH now being investigated for lymphodema as left leg swelling- cancer nurse speaking to consultant so expecting a call back next week. Poor man is also due an op on 18/1 for a rotator cuff repair so feels like suddenly his body is letting him down. Never damn well ends! Where are you in France Steve? Have a v dear French friend from school exchange days who lives near Rouen so v fond of France :)

User

Posted 05 Jan 2024 at 22:46

Thanks Elaine- it’s early days here so we may wait for another 3 months at this stage. Now battling possible post-op lymphodema so something else to add to the list! UTIs can be vicious particularly in the elderly so hope your father is on the mend.
x

User

Posted 20 Feb 2024 at 11:43

Latest news. Mild Lymohodema confirmed by surgeon and OH now referred to lymphodema clinic.
however he was v focused on OHs Dec PSA of 0.08 (doubled from 0.04 post op). Next PSA due in in mid-march and if any increase at all from 0.08 RT will be offered due to ‘the extent of the disease and the positive lymph node’. No scans, no point waiting for 0.2 as they like to err on the side of caution he said. I knew this was on the cards but thought we might have a bit of breather before RT. My instincts tell me there will be a rise given his pathology.

Was told it would be RT to the prostate bed in order to mop up any microscopic disease. Does that sound about right?

User

Posted 20 Feb 2024 at 13:21

I had the same lymphodema (at least I think that is the same as a lymphocele) post RP. I was back in for it to be drained inside the CT scanner with a local anaesthetic and it was fine. No pain or discomfort.
I'm due my next PSA on 8th March as my post op PSA was <0.01 but December was 0.12 so am expecting to join the RT club shortly. Like you, the prostate bed will be the target.

I'm just outside of Chauvigny in Vienne (Dept 86) in answer to your previous question LOL

Edited by member 20 Feb 2024 at 13:23 | Reason: Not specified

User

Posted 20 Feb 2024 at 13:42

Hi Steve

looks like you and my OH are following a similar path. Happy times! I’m guessing that we’re not waiting for the 0.2 threshold to be breached due to the positive lymph node. Wonder how long it will be before you and him start treatment. Trying to plan holidays! Any ideas how long treatment may last?

good luck!

User

Posted 20 Feb 2024 at 13:53

Originally Posted by: Online Community Member

Was told it would be RT to the prostate bed in order to mop up any microscopic disease. Does that sound about right?

TBH I think you’re as well getting it over and done with now if it’s got to be done. Hopefully OH can avoid a lengthy time on HT and he’ll be all done and dusted within a year of his RP and get your lives back😊 I know I would have been happy to follow this route given he choice, rather than 3 years of HT😟

User

Posted 20 Feb 2024 at 17:47

I totally agree - get it done as soon as possible. From my understanding, Salvage RT is only a few sessions - maybe 5 or 6 - so not the extended process that non RP patients have to go through. Will be interesting to compare the NHS experience to the French health care experience.

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