Feeling in the dark

User

Posted 29 Mar 2022 at 01:24

Hi all

My father has been having prostate problems for well over a year now (up 7/8 times a night and unable to sleep with frequent urination, dribbling etc) but with covid and clinic cancellations he only had his first urology apt at the start of Feb this year. His first two PSA results I’ve just learned today were 11.5 & 12.7. The consultant said he could feel something that was worrying and red flagged him for an mri which he had done a few days later. He’s only just just had the results which say that there’s something on one side and they’ve referred him for biopsy. His PSA is now 26.7 and the pain he’s in seems to be more frequent and he says it’s almost like sciatica but not. The wait time for biopsy even though he’s red flagged, is 10-12 weeks where we live and private Apts don’t seem to be much quicker right now for some reason. We are all quite frustrated over the lack of communication and details, not being told the PSA results until today and only then when I pushed and pushed, they are still very reluctant to send us the mri report.

I don’t know if I can wait another 3 months + in the dark I’m so worried.

Thank you 🙏🏼

User

Posted 30 Mar 2022 at 01:06

Because they are unlikely to be able to remove it all surgically. With external beam radiotherapy or combined brachytherapy/ external beam RT, they can target the area immediately outside the gland at the same time

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Mar 2022 at 19:55

Originally Posted by: Online Community Member

Yes, that's exactly the treatment I had myself, and my urologist said to me "I wouldn't have surgery if I were in your position". When a scalpel-wielding urologist advises against surgery it's as well to listen, I thought!

Cheers,

Chris

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User

Posted 29 Mar 2022 at 06:54

It's worth noting that prostate cancer is not usually associated with pain; that's generally caused by an infection of some sort. Prostate cancer most commonly has no symptoms at all. An elevated PSA is certainly a flag that investigation is required, though.

How old is your father?

Best wishes,

Chris

User

Posted 29 Mar 2022 at 07:13

Yes I had read that which is reassuring. I was worried it had spread to his spine or bones but it may be as you say an infection. My father is 80, however a very young, active and fit 80. Thank you for your quick reply it’s much appreciated.

User

Posted 29 Mar 2022 at 07:26

Almost every 80 year old man has prostate cancer - it's essentially a matter of being a man and living long enough, so in that sense it's unsurprising that a potential tumour showed up on the MRI. That doesn't mean that any treatment is required, though; the majority of men with prostate cancer never know that they have it and will die with it not from it.

If cancer has spread to the bones, one would expect a PSA in the hundreds or even thousands, so I wouldn't be too concerned about that. If the biopsy does show cancer (and at his age it probably will) they're likely to do a bone scan, but it's a purely routine part of the diagnostic process, so don't worry about it.

Best wishes,

Chris

User

Posted 29 Mar 2022 at 18:34

I'm surprised he's having to wait so long for his biopsy. Health Authorities have time related targets which they are expected to meet. I'm under Buckinghamshire HA and targets seem to be 2 weeks from referal and appointment and to-date they've met them even if some have been telephone appointments. Certainly I had my biopsy in under 2 weeks from referal. Does your dad have a specialist nurse? It may be worth contacting them about your concerns! If not then I would contact the local Prostate UK branch. They should know if delay is common in your area.

Good luck I do hope your dad gets the screening & treatment he needs.

User

Posted 29 Mar 2022 at 18:50

I’m in N. Ireland and everything has a shockingly long wait list at the minute here. We spoke to his GP this morning and even she was shocked at the waiting list. We have actually been calling private clinics in England today so awaiting a few getting back to us. We also got his full MRI report today too:

Likert 5 signal lesion within both sides of the posterior peripheral zone of the apex to mid gland with a broad capsular contact, likely reflecting extracapsular disease. Changes on diffusion at the base of the gland are not suspicious but there is asymmetrical reduced T2 signal change which suggests early extracapsular disease adjacent to the right seminal vesicle, particularly if biopsies at the right gland base show significant tumour.
rT3a (possibly T3b) N0.

User

Posted 29 Mar 2022 at 19:44

Given that scan result it definitely does need radical treatment. I suspect that they’ll probably recommend radiotherapy rather than surgery.

Chris

User

Posted 30 Mar 2022 at 00:37

Originally Posted by: Online Community Member

Given that scan result it definitely does need radical treatment. I suspect that they’ll probably recommend radiotherapy rather than surgery.

Chris

Hi Chris

why do you think radiotherapy instead of surgery? Sorry I’m still trying to figure this all out. What do you make of the report?

Thank you for your help.

User

Posted 30 Mar 2022 at 01:06

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Mar 2022 at 19:55

Originally Posted by: Online Community Member

Cheers,

Chris

User

Posted 01 Apr 2022 at 20:01

I’ve been trying to start my own conversation but it keeps saying access denied. Do I have to comment on existing threads first?

User

Posted 01 Apr 2022 at 22:34

Originally Posted by: Online Community Member

I’ve been trying to start my own conversation but it keeps saying access denied. Do I have to comment on existing threads first?

Make sure you confirm the topic and pick a title. Also make sure you are not in the "from moderator" section.

Also worth copying and pasting the text into another app, I use Gmail. Nothing worse than doing a long post that gets access denied and lost. New conversations can take minutes or hours to get moderated.

Thanks Chris

User

Posted 02 Apr 2022 at 00:31

Originally Posted by: Online Community Member

I’ve been trying to start my own conversation but it keeps saying access denied. Do I have to comment on existing threads first?

Often, it is about the title you choose for your new thread - it can't be called the same thing that someone else has previously used.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Apr 2022 at 00:09

Thanks for all the replies, really appreciate it. I still feel I don’t understand these results fully though, could you break them down to me?

Thanks again

User

Posted 04 Apr 2022 at 12:23

KTR2, have you tried ringing the number at the top of the page, a conversation can sometimes be easier than to and fro posts.

You could also join the zoom meeting at 8.00 PM on Wednesday, new comers to the meeting get the first go at asking questions and it is a friendly bunch of people that includes consultants.

Look for a recent post from Andy62 for zoom details.

Thanks Chris

User

Posted 05 Apr 2022 at 16:49

Hi,

js there a zoom meeting every Wednesday? I would like to find out more as would be good to chat with others who are in the same situation.

User

Posted 05 Apr 2022 at 16:53

Sophie, no not weekly, Andy has been hosting the zoom meetings on a monthly basis. There is one tomorrow night.

Thanks Chris

Edited by member 05 Apr 2022 at 17:35 | Reason: Not specified

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