Results dad

User

Posted 23 Sep 2024 at 14:10

Hi everybody,

I am ready this forum for quite some time already.

I am from the Netherlands and can't find an active forum over here so I'd like to join yours :).

My dad was diagnosed with prostate cancer 2 years ago, after TURP.
His PSA level was stable at 6.5 over the last 1,5 year and doctor was happy with that.
Last July he had back problems (low back, radiating to leg(s)) and went to docter. Doctor did blood test and xray, just to be sure the problem was not because of mets in his back (which my dad said "impossible because I am under active surveillance at Urologist". ). Results of blood: PSA 6.4 ('normal'), all other things totally fine. Results of xray: totally fine! Doc said "you might skip the appointment for blood test next month as everything is fine".
My dad didn't skip and one month later he had his 3 month blood test for Urologist: PSA 8.5 and still having low back pain.

Now he's had a PET CT scan (while under active surveillance). My dad saw his report and was shocked because there is "a lot" in it but also said he did not know what it meant. That shocked me, but he doesn't want to show me the report untill he's had his appointment.
I understand and respect that of course! The only questions I have:

1. Did everybody else have PET CT while under AS? What was the outcome?

2. If there is "a lot" in the report, does that mean all bad findings? I never had any scan in my life so I don't know what a report of a scan looks like.

When I am thinking rationally I think that it will be fine because of:

- One PSA 'jump' of 2 (from 6.4 to 8.5) in one month doesn't say anything, does it?
- He has Gleason 3+4, which is obviously bad but could be a lot worse
- Blood test at doctor was OK
- Xray was all clear
- Low back pain runs in his family

Do you have anything similar or any other thoughts?
Untill he has the appointment I am going from one place (all ok) to the other (OMG, it's as bad as it can get).

Thank you so much from the Netherlands!

User

Posted 23 Sep 2024 at 14:52

Hello Netherlands. UK calling.

Welcome to the forum. It's lovely that you care enough about your dad to join us.

How old is he?

I just had an MRI scan before going on active surveillance. Unfortunately, I was one of the unlucky ones who got disease progression. It was only after a follow up MRI showing things had worsened, that I had a CT scan.

Your dad's PSA is relatively low and so is his Gleason score. I'm not medically trained but I doubt whether his back pains are related to his PCa.

There is a lot of information on a CT scan.

If you can, and your dad is in agreement, post your queries on here and we'll try and help you and him understand them. You could also ask your dad to clarify the findings with his clinician.

Best of luck to both of you.

User

Posted 23 Sep 2024 at 15:04

Hello Adrian!

Thank you so much for your quick reply!

My dad is 72.

I am so sorry to hear your story.

If I understand correctly, you have not been on AS? How much time was there between the thought of going on active surveillance and the follow up MRI?

My dad, he doesn't like sharing his details untill he knows everything himself, as he is afraid it will worry us (myself and brother). It's doing the opposite to me, I start to worry and Googling everything. Do you know the term "hypochondriac"? Well, that is me but not for me but for others. Maybe it's an anxiety or not having control.. whatever it is; not very nice to have ;).

I was hoping somebody would say that not all mentioned findings in a PET CT report are cancerous, but that it can be something else (benigne such as a herniated disc or sciatica/inflammation/ etc..).

User

Posted 23 Sep 2024 at 15:28

Originally Posted by: Online Community Member

If I understand correctly, you have not been on AS? How much time was there between the thought of going on active surveillance and the follow up MRI?

Hi again.

Following a MRI scan and biopsy that showed low grade Gleason 6 (3+3) low volume cancer. I decided to go on AS. The consultant recommended a 6 month follow up MRI but forgot to book it. It was 20 months before I eventually had a follow up scan which showed significant disease progression, which lead to a CT and whole body bone scan, plus another biopsy.

I believe NICE advises those on AS to have follow up MRIs between a year and 18 months.

My CT scan and bone scan revealed, although the cancer had gone to Gleason 8 (4+4) and breached the prostate, there were no signs of metastatic disease.

Edited by member 23 Sep 2024 at 17:33 | Reason: Typo

User

Posted 23 Sep 2024 at 18:30

Oh wow, that must have been a real suprise about the change in GG. From relatively safe to agressieve in a short period of time :(. I can imagine the shock. Did you have any symptoms when you found out about GG 8? What was your PSA level? Are you ok now?

Do you know if back issues are seen on a PET CT? Of are they just focussing on cancer and mets?

User

Posted 23 Sep 2024 at 20:38

It was a shock that the disease appeared to progress so quickly. Post op histology upped it even higher to Gleason 9 (4+5). During diagnosis and AS, my PSA remained relatively stable between 5 and 7. It now appears that my first biopsy missed some of the more aggressive cancer cells rather than it being a speedy disease progression.

I'm fine now thanks. My op was 18 months ago and my PSA is not detectable.

My CT scan showed lytic areas on my pelvis bones, hips and legs, that initially caused concern. Fortunatey the bone scan revealed that they were not cancer related, but arthritis.

Edited by member 23 Sep 2024 at 20:53 | Reason: Additional text

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