I have Had to Join Yet Another Forum

Hi D

Just a couple of initial questions

PSA 2018 1.4

PSA of 13.1   when was that reading.

sorry, without knowing info  correctly difficult to comment. prob me reading wrong though

best wishes

Steve

Hi Steve

Thanks for your reply.

That psa of 13.1 was July 2023.

D

Thanks D

U need some more tests before deciding anything.

PSA 13 not particularly high.

I presume they r going to do a MRI scan at some stage, this would show size and exact location of any tumour.

Biopsy possibly to follow that.

With a psa of 13 ,I would imagine well contained .

If all stats low u could try and push for RT only but too early to say really.

If u have urinary issues then surgery may not be the best option and u would need to ask them if RT would not aggravate it.

Come back when u know more and  hope all goes well.

Regards

Steve 

Thanks again Steve

Yes, it is early days, but I like to know as much as I can, to be prepared ahead of things.

You saying that a psa of 13.1 (July 23) should be well-contained has given me a boost.  I will have a repeat psa result on Monday.

The oncologist said that if PCa was confirmed, I would not be offered surgery because of my age.  It would be RT with HT.  

I think the next stage is mpMRI.  I am not keen on the biopsies just in case I decide on Active Surveillance.  I wouldn't want to give PCa a chance to escape the prostate capsule through seeding.

Do you know if you can have TURP or HOLEP after RT?  I was told at the cystoscopies that my prostate had regrown and I am not urinating as well as I would like.

D

Ok , so wait for the PSA result and push for a decent scan and do let us know.

Don't think about biopsy at this stage, wait for the scan.

The main reason for having a biopsy is to look at aggressiveness because if a Gleeson 9 active surveillance perhaps not such a good idea  unless tumour size was low. IE less than about 10mm.

Sorry can't help with turp , have picked up a lot of knowledge about PC in the past 10 years but that's about it.

Hopefully someone will post with some advice on that point.

Do let us know when u have more news, u never know perhaps your PSA will be lower

Good luck

Steve 

Thanks again Steve.

D

Hello Dedalus - Welcome to our "little" section of the club.

Well you have been through the mill and am so sorry to find you here.

I agree with everyone else here, with a PSA of 13.1 it's almost a positive that the little critters haven't had chance to go walkabout and everything is still contained within the gland.

You are doing the right thing by keeping fit and that's half the battle with PC whatever treatment path you go down.

As regarding the TURP operation, that's a question I asked my urologist as they wouldn't give me my Radiotherapy with a catheter and I was waiting for a TURP operation. He agreed it was possible to have the TURP after RT (at least 8 weeks after) but the option they used was to perform it before RT. I understand many men require a second TURP after 10 year or so and so in my case (if I get there!!) it would be after RT.

You can read my personal journey by clicking on the icon of the beach.

I hope this helps - any questions - feel free to post - I will do my best to answer them.

Best wishes - Brian.

Good morning Brian

Many thanks for taking the time to address my questions.

I read your journey, and you too have been through the mill!

Your reassurance of containment, combined with that of Steve's, has really cheered me.

It is early days, but as I said, I like to be prepared, so that I make the correct choices, if and when the time comes.

The details of your TURP were interesting and gave me food for further thought.  If you had the choice again, would you opt for TURP before or after your treatment?  Alternatively, would it have been better to opt for a prostatectomy and deal with both problems at once?

Given that you had RT + HT, what would be your choice if you could go back in time?  Is there any treatment(s) you would consider as a possibly better alternative?

I have another question that is unrelated to my situation.  My brother has just gone through the same experience as you did with urinary retention due to an enlarged prostate.  Due to the waiting list, he has been catheterised and told it could be for at least 12 weeks.  His EGFR was 10.  Have your kidneys returned to an EGFR >60.  How long did it take them to normalise?

BW

D

Hello D

You are quite right to be prepared!

* No If I had a Tardis and went back in time - no I wouldn't have gone for surgery, not because of the ED but because of the possibility of "leakage". I know most people recover - but no - personal choice - just no.

* RT/HT - I am lucky - everything is under control - no more hot flushes, boobs have stopped growing, I still cry for England, itching has stopped - but going down this route you have to accept fatigue and dare I say it - old age catches up if you don't keep exercising (I have never been in a gym!!).

* The TURP operation - piece of cake and I am glad I had it. I would have liked it earlier and had to bump myself up the list with the help of my Urology nurse! ( I didn't get the choice of surgery).

* Your brother is lucky if he gets a TURP in 12 weeks. It took me 10 months and I had to jump the waiting list. My eGFR was 8 in 12/21 - it rose to 38 in 04/22 and at the time of the TURP 11/22 it was 58. It's not been tested since. I will have it done next time I go in for some bloods. (as they all end in 8 68  or 78 would be fine!!).

* I have a friend who has undergone Brachytherapy. Less invasive, less side effects - worth looking at but not available everywhere.

I hope this helps - anything else, just ask.

Best wishes - Brian.

Hello Dedalus.

Can I pick up on the question of EGfr for your brother. The initial question is whether the urine retention was chronic ( more than 3 months) or acute (less than 3 months) with any kidney damage. If acute then there is a good chance that kidney function will return fairly quickly and I am sure Brian can give you the benefit of his experience as to timescale and numbers. If it was chronic with kidney damage then it can take longer, in my husband's case it was about 6 months with a pigtail between the kidney and bladder for 12 weeks, and he has stabilized with an eGfr of about 50. We were advised to adopt a kidney friendly diet, restricted dairy, limiting fluid intake ..... It is more likely to have been acute but needs qualifying. I presume from what you say that your brother is going to have treatment for the enlarged prostate but in the meantime he is going to have to be careful of UTI's. You can still live well with lower eGfr's.

All the best to both of you.