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Dad just diagnosed. Need advice

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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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