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Dad just diagnosed. Need advice

User
Posted 21 Feb 2023 at 12:55

Just a question. Dad had PSA done on 13th Feb. Oncology appointment was for 14th March. He is away in between. We just received a letter to say Oncology appointment has been changed to 18th April. That is nearly 2 months after PSA test. Does dad need to have another PSA test done before April's appointment? I doubt a lot will change in that time but i guess you never know... Any advice?

Thank you!

User
Posted 23 Feb 2023 at 11:15

Originally Posted by: Online Community Member

Just a question. Dad had PSA done on 13th Feb. Oncology appointment was for 14th March. He is away in between. We just received a letter to say Oncology appointment has been changed to 18th April. That is nearly 2 months after PSA test. Does dad need to have another PSA test done before April's appointment? I doubt a lot will change in that time but i guess you never know... Any advice?

Thank you!


I would contact Onco or secretary & ask - I usually get my blood test done a week or two before the appointment.
Now I don't actually have an appointment, just a letter to say All OK a few days later. But I have the option to contact them at any time if I have concerns.

User
Posted 23 Feb 2023 at 23:42

Thanks Bob,

Spoke to Oncology today. They said he doesn't need another PSA done for April as his PSA has been stable. They will try and bring the appointment forward if they can. Hope all is well with you!

User
Posted 27 Mar 2023 at 21:10

Not sure what is going on with Macmillan. They pushed dads appointment to mid April then Friday we received a letter that its now been pushed back to end of April. I spoke to one of the nurses who said he still wont need to retake PSA, February one will be sufficient. My concern is that the next PSA test should be 6 months from his original appointment, which was February, so that takes us to August. Now they have pushed it back to April which means next 6 monthly will be October. So its 2 months out of sync. Is this a big deal, or not really?

I am hoping April appointment does go ahead. Its all very frustrating, especially as it will be a 2 min call just to check in. But we need to do this to get the next 6 monthly appointment!

I know some are on yearly PSA so am a bit unsure if being a few months out of the 6 months range matters.

Any advice will be appreciated. Thank you!

User
Posted 27 Mar 2023 at 22:56

Hi Sr12, I am lucky my GP surgery just gives me PSA tests whenever I ask for them, and indeed I went in for something unrelated and the nurse just said "may as well do a PSA test whilst here, it's the same blood phial".

I have found when dealing with bureaucracies you should never ask permission for anything, you just tell them what you expect them to do. Of course you might get knocked back, but you are no worse off than you were before.

So if you want a PSA test prior to April appointment tell them that's what the consultant wants (I presume at some point in the distant past that is what he said). If you want a PSA test in August tell them consultant expects six monthly tests last one was in February so one is due in August.

It isn't a nice trait, but I have observed the people who get what they want from life do so by taking it, not by waiting for it. So if you ever find yourself in a room with me, and someone is giving away free cake, don't hang back - grab it whilst you can, because if you don't grab it, I will have scoffed the lot.

 

 

Dave

User
Posted 28 Mar 2023 at 08:02

Good to hear from you Dave! Hope you are keeping well. Oh yeh, totally agree...if you don't ask, you dont get! The GP is actually OK. Happy to give dad PSA whenever we ask. I was thinking of just booking the next PSA in August, when it is due, but was wondering what happens if it did rise and if nxt Ongo appointment wasn't until 2 months later? Would they bring it forward, as they do get the results electronically. 

It is all very frustrating. We get an appointment so we rearrange the day to make sure we are both available and then they go and change it again! It has happened 3 times now. 

I am grabbing all the cakes now! 

User
Posted 28 Mar 2023 at 09:09

Hi, I imagine they're short staffed or strikes are putting them back.  I noticed my 3m appointments became 4.5m until a new nurse started, now they're 12wks apart.

 The appointments should be based on your original appointment and blood test date.  If he is stable then April should be fine although my Macmillan Nurse will give me the result if I ask and I have her mobile.  Your next appointment should be August although if he is stable at a low level I wouldn't be over concerned about a few weeks.

I was intrigued by Dave's nurse saying it was the same phial.  I had thought some blood tests go into a different regime as I asked for a random psa test and got a random result which was concerningly detectable for the first time, although at a different hospital.   I didn't know if it was the change in assay or if the random test went into a higher threshold as someone once wrote on here. GPs don't use the < sign. Anyway I went to my own hospital a week later and it was undetectable at a lower threshold.  Although my next test 10m later was detectable so perhaps there was something going on.. That was a bit long. All the best, Peter

User
Posted 28 Mar 2023 at 09:14

Yes I'm doing fine last PSA test (a few weeks ago randomly instigated by nurse) was 0.1 . They have been either 0.1 or 0.2 since treatment. 

All of my follow up meetings with onco were a non event, I had no symptoms to report, the PSAs were low, the outcome was "see you in six month". So if you have no symptoms to report, don't worry about when these random meetings happen (I can see if you make plans and have to rearrange them it is annoying).

I would get PSA tests every six months, so August for you, if an alarming rise, or if you get any weird new symptoms or side effects call and demand a consultation, otherwise just accept the random follow up meetings as and when they come.

Dave

User
Posted 28 Mar 2023 at 09:28

Originally Posted by: Online Community Member

I was intrigued by Dave's nurse saying it was the same phial.  I had thought some blood tests go into a different regime...

I have had a few blood tests for various things, and there seems to be about three different phials identified by a different colour cap. I assume they contain different preservatives, and some would interfere with one set of tests and some with another set of tests. So if your blood sample is going in a "blue" phial for a cholesterol test and PSA tests are also "blue" then she just ticks both boxes (above are just examples I have no idea what the colours are or what tests go in the same phial). On one occasion I had about 20 tests and she used three phials with different coloured tops.

Dave

User
Posted 28 Mar 2023 at 10:44

Thank you Peter and Dave. I spoke to the GP surgery after reading this and they said its fine for dad to have 6 monthly PSA regardless of when Ongo appointment is. They said the same, if a rise or anything alarming then we can let Ongo team know and they would, apparently, fit us in. I am hoping end of April appointment goes ahead. Have to rearrange my day, yet again! Will keep you posted.

Much appreciated. Thank you so much.

User
Posted 29 Mar 2023 at 23:40

Originally Posted by: Online Community Member

Yes I'm doing fine last PSA test (a few weeks ago randomly instigated by nurse) was 0.1 . They have been either 0.1 or 0.2 since treatment. 

All of my follow up meetings with onco were a non event, I had no symptoms to report, the PSAs were low, the outcome was "see you in six month". So if you have no symptoms to report, don't worry about when these random meetings happen (I can see if you make plans and have to rearrange them it is annoying).

I would get PSA tests every six months, so August for you, if an alarming rise, or if you get any weird new symptoms or side effects call and demand a consultation, otherwise just accept the random follow up meetings as and when they come.

I missed your latest amazing PSA results when i read the post initially. Amazing results! Non eventful is the way to be!

 

 

 

 

User
Posted 04 Jul 2023 at 11:27
Latest result of PSA 0.48 no concerns they say - but I've had a kidney stone problem, sorted but the anti-biotics gave me the runs, which caused bowel problems, not the least - piles, looks like I've got a hospital visit following a positive FIT test.

Hopefully Piles blood.

User
Posted 04 Jul 2023 at 18:44

Great PSA Bob. Ah, my dad had some blood a while ago and it was piles. Yours is bound to be the same due to piles. Keep us posted. Hope you are well otherwise! Dad has his PSA in August. Will post results on here.

User
Posted 05 Jul 2023 at 17:23

Originally Posted by: Online Community Member

Great PSA Bob. Ah, my dad had some blood a while ago and it was piles. Yours is bound to be the same due to piles. Keep us posted. Hope you are well otherwise! Dad has his PSA in August. Will post results on here.


Thanks for your reply & thoughts - (I wish I knew your name BTW) 
It's given me a lot of discomfort, far more than I ever had with the Prostate treatment in fact. For about 3 weeks now.
About the only time it's better, is on my side in bed. The pile in question, is on the dentate line, where the nerves start & comes out, though it has shrivlled somewhat after strong supositorys from the GP.
Epimax cream, seems my only friend for it. Told by GP not to use wet wipes - probably right!

User
Posted 06 Jul 2023 at 09:27

Gosh that sounds very painful. Not the best place to have it. My dad was told that piles can be common after RT. Hopefully you will recover soon. Lots of Epimax! Lol! Ah yes, name is Stevie but actually people just call me SR! 

User
Posted 07 Jul 2023 at 22:12
Stevie I'm giving Germaloids a try - they seem the best according to reviews. Our local Boots Chemist has huge gaps on their shelves - but I managed to get some from Sainsburys Boots seem to be in a poor state.

Appointment at Colerectal on Tues with consultant.

User
Posted 14 Jul 2023 at 11:11

Sorry just seen this msg Bob. Hope it goes well. Keep us posted.

Dad had PSA included in his routine blood test this week. The PSA result is 0.03. In February this year (5 months ago) it was 0.02. Is this rise something to be concerned about?

The onco appointment isnt until September so we will ensure he gets another PSA test done just before. 

Not sure how much of an increase is worrying?

Thanks in advance.

User
Posted 14 Jul 2023 at 14:32
No, the rise from 0.02 to 0.03 is "in the noise" - variations daily can be within those tolerances. If they rise to 0.2 then the Oncologist will take an interest. Just keep him getting regular tests - most will be on 6 monthly but I pester my GP to get them 3 monthly.

User
Posted 14 Jul 2023 at 14:57

Thank you so much Steve. This is very reassuring. We will get it repeated in a few weeks just before onco appointment. Just hope there isnt another increase. They have always said 6 monthly checks. Time goes quickly though! Hope all is well with you. 

User
Posted 15 Jul 2023 at 01:45

Steve is right that 0.02 to 0.03 is just noise. He is wrong to say oncologist will be interested at 0.2. Your dad had RT and still has a prostate. That prostate can produce healthy PSA, oncologist won't be worried whilst PSA is below 2.0. so your dad's PSA can increase 100 fold before oncologist will be saying there is a problem. Keep posting on here because we like good news stories.

Dave

User
Posted 15 Jul 2023 at 10:42

Thank you Dave! Good to hear from you. Feel reassured after reading the replies. Will definitely post next PSA result just before September. Your own story is the best good news! 

User
Posted 15 Sep 2023 at 15:36

Hello! Update, dad had PSA test. Result 0.03. Stayed the same as last time. Good news, for now! Hope everyone is keeping well. 

User
Posted 15 Sep 2023 at 20:59
Well done Dad !

User
Posted 15 Sep 2023 at 23:48

Another great result.

Dave

User
Posted 16 Sep 2023 at 16:00

Thank you! Got onco apt in 2 weeks. Hopefully they will keep him on 6 months monitoring. Hope you both are keeping well!

User
Posted 16 Sep 2023 at 18:49

Originally Posted by: Online Community Member

Thank you! Got onco apt in 2 weeks. Hopefully they will keep him on 6 months monitoring. Hope you both are keeping well!

 

I think the 6 month thing, is the norm until you roll up.

User
Posted 16 Sep 2023 at 20:44

Lol! Brill! Hope you are keeping well?

User
Posted 17 Sep 2023 at 21:43

I think the expression, regarding my rear end, is "Getting there" .
Urology consultant, seems happy to leave one remaining kidney stone in place.
Have a ct scan in a years time to see if it's still there & if it has got larger.

User
Posted 18 Sep 2023 at 02:00

Hi SR12, yes I'm doing fine.

I wouldn't be too concerned about 6 monthly monitoring. Definitely 6 monthly PSA tests, but if they said to you at the next meeting they were going to leave it up to you to contact them if you were worried I think you would cope fine. It would save them messing you around with cancelling appointments. I guess you would have to ask what threshold they would consider worrying and the answer would probably be 2.03 (which sounds a bit high) at current rates it would take about 20 years before he gets there.

Dave

User
Posted 19 Sep 2023 at 10:06

Glad to hear you are well Dave. Thank you for the reassurance. The GP said the same, to keep having 6 monthly PSA regardless of oncology appointments. OK, i will ask what their threshold is. 20 years! He will be 100! Lol!

Bob, glad it is getting there! A years time is ages. Hope it disappears!

User
Posted 28 Sep 2023 at 20:20
Had the oncologist telephone appointment today which literally lasted 2mins, if that! Said everything is fine and next appointment in 6 months. I did ask what the threshold is where they would consider it worrying, he said around 4.5. Which to me seems high??! Fingers crossed for 6 months time!
User
Posted 28 Sep 2023 at 21:17

It does seem high in some respects. Just towards the end of my appointments I asked the CNS what threshold might be appropriate, she looked at my notes and said 'your consultant is John xxxxx, he doesn't usually start treatment again until it gets to 10'. Now that is a high threshold, but in reality I would be contacting them again at 2.1 and in truth, I would probably contact them a lot earlier than that if there was a clear pattern of exponential increase in PSA.

However, your dad is 80, so how old will he be if it does get to 4.5 and if he has no symptoms would it be worth decreasing his quality of life for a marginal increase in length of life.

With his current PSA I doubt he will ever have trouble from prostate cancer again, but whatever happens keep posting here once ever six months. The people who post on here a decade after treatment give the more accurate picture of the disease.

Dave

User
Posted 28 Sep 2023 at 21:35

Wow 10 is high! I think I would panic at 1! Lol! I agree, it depends on how quickly the PSA increase is. He also looked at dads notes and previous PSA and said 4.5 I hope it remains low but we just never know. He has already made it clear that he wouldn't accept any further treatment, which is fair enough at his age. 

I will definitely keep on posting and checking on here. We couldn't have got through this if it wasn't for the group. I learnt so much from reading other people's post and from all of you. I hope my post gives people hope. It does all seem very scary in the beginning, this support group is invaluable and definitely calmed me down and gave me some hope.

Hope all is well with you Dave.

User
Posted 02 Dec 2023 at 18:58

Have a good Xmas. My PSA may have peaked, 3 years after RT & HT - Today, 0.42, last time, it was 0.48 Previous, it was a slow rise.
+ £250 won, on the Ernie bonds today. Freezing cold though, here in Suffolk.

Edited by member 02 Dec 2023 at 19:27  | Reason: Not specified

User
Posted 03 Dec 2023 at 09:25

For those curious, these are my PSA results to date - inc the first diagnosis one of 27 ! The RT happened, oct-Nov 2019, (20 episodes)

0.42 ug/L
Date:02 Dec 2023 08:35 GMT
0.48 ug/L
Date:27 May 2023 08:33 BST
0.37 ug/L
Date:24 Nov 2022 13:00 GMT
0.33 ug/L
Date:25 May 2022 00:00 BST
0.25 ug/L
Date:02 Dec 2021 00:00 GMT
0.16 ug/L
Date:28 May 2021 10:20 BST
0.05 ug/L
Date:07 Dec 2020 09:32 GMT
0.02 ug/L
Date:04 Jun 2020 00:00 BST
0.04 ug/L
Date:18 Feb 2020 00:00 GMT
0.06 ug/L
Date:06 Dec 2019 09:27 GMT
1.37 ug/L
Date:04 Sep 2019 09:21 BST
23.70 ug/L
Date:07 Nov 2018 00:00 GMT
27.70 ug/L
Date:02 Aug 2018 10:40 BST

Edited by member 03 Dec 2023 at 09:31  | Reason: Not specified

User
Posted 03 Dec 2023 at 16:43

Hi Bob,

Good to hear from you! I think your PSA is at a good level? Dads onco team said they wouldn't worry until it got to 4. Which i think is too high. 

Great news about the win! Its cold here too. Have a lovely xmas! 

User
Posted 05 Dec 2023 at 08:33
a PSA of 4, following RT & HT I would think a bit high - but then, I'm no expert.

I cannot understand why men are not offered a PSA test over a certain age &/or if there is a family history of PC.

Provided the man, keeps away from being "Naughty" for 7 days before the test, I think it's pretty accurate.

For any chaps reading this, provided there is a choice between removal or HT/RT - I would go for the latter, every time - less invasive & you are still a bit more "Intact".

All the very best.

User
Posted 05 Dec 2023 at 12:21

My dads PSA was picked up during a routine blood test many years ago. It kept going up and down for a few years but by low amounts. Then the GP just said its best to check it out. Im guessing they include it if regular bloods are being done for other issues but i don't think they call men in just for PSA, could be wrong. 

User
Posted 06 Dec 2023 at 10:46

PSA tests, are not done in the way Cancer tests for a women are done. It seems more luck than judgement.

In my case, I was being tested for another condition - I mentioned to the Doc that my father had died from PC, so he included it. 
I have an annual health MOT which includes a blood test for Kidney Sugar & other things, but NOT for PSA as part of it. (I'm on the usual blood pressure & Statin tablets, so they do it for that)
From the NHS POV, I would have thought they should do more to catch PC early, it must be easier to treat then, than wait until it may have spread & chemotherapy is the only help to extend the patient's life.
I expect, the reasoning why the NHS does not test for PC as other tests are done, is more about money than anything else.

User
Posted 08 Dec 2023 at 10:10

Yes, that is true. Its definitely not a standard monitoring they do like say for example, a smear test. Hopefully this can change in the future. Can be treated well if caught early.

 
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