any advice would help thanks

User

Posted 22 Sep 2020 at 10:44

Quick background. 56 years old living in Sweden. Got a PSA of 5.2 from a routine physical. Went for an ultrasound where my Dr. said it was slightly enlarged and will continue to monitor. Three months later it was down to 5 and 3 months later it was up to 6 which prompted an MRI. Dr. isn't really giving me a lot of information at this point (this is Swedish Medicine). After the MRI result, I was told I need a biopsy with no real discussion or further information. That is scheduled for tomorrow. In the meantime I had my GP call me to ask if this was normal and he said it was and I asked if he could see the PIRADS on the MRI and he said yes one was 2 and the other is 4. So now naturally I'm freaking out about that along with the 10-minute outpatient biopsy procedure tomorrow.

Any advice would be helpful. What should I ask the Urologist tomorrow if anything? What are my chances of bad news at this point, please anything would be helpful.

Thanks.

User

Posted 22 Sep 2020 at 18:13

Your urologist will not be able to tell you much more until the biopsy results are in. Pirads 4 is not great news, but you’ll have to wait it out, like we all did. An agonising wait, I know.

Best of luck.

Cheers, John.

Edited by member 23 Sep 2020 at 12:50 | Reason: Not specified

User

Posted 22 Sep 2020 at 19:53

It is a predictor rather than a certainty - we have had a couple of men on here recently who were given PIRADS 5 but subsequently got the all clear, and men who were given a 1 or 2 but the biopsy did find cancer.

No way of knowing what the outcome will be; if there is an opportunity to ask questions tomorrow (there may not be), ask how long it takes the hospital to get the biopsy results & have them discussed at the multi-disciplinary meeting and how the results / any recommendations will be communicated to you. It is usually 2-3 weeks.

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

User

Posted 22 Sep 2020 at 21:34

Originally Posted by: Online Community Member

Any advice would be helpful. What should I ask the Urologist tomorrow if anything? What are my chances of bad news at this point, please anything would be helpful.

I was told earlier this year by consultant urologist on telephone appointment that

"as a 50-year-old with a PSA of between 4 and 10, you have a 27% chance of prostate cancer"

I don't know how much difference your extra 6 years would make. I hadn't had an MRI at that point. That consult triggered an mpMRI and biopsy. It turned out that I was in the 27%. Hopefully you are not.

All the best for tomorrow. 😀

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 23 Sep 2020 at 08:14

Thanks all for the advice, appreciate it.

All the best

User

Posted 05 Oct 2020 at 09:38

Got diagnosed today with Gleason 3 + 3 Tc1. Thankful that it's not worse. Looks like active surveillance for now. The hardest part is deciding if I should tell me kids or not. Any advice there? I would be upset if my Dad didn't tell me if she had the same but on the other hand, I don't want to burden my kids with something that could potentially not become worse than it is.

Thanks for any tips and for your help and support.

Edited by member 05 Oct 2020 at 09:42 | Reason: Not specified

User

Posted 05 Oct 2020 at 11:45

As you say it could have been a lot worse.

Once I had a positive diagnosis (and mine was slightly worse than yours) I let the kids know. But only in the sense that it had been detected early, wasn't life threatening and for now they were just going to keep an eye on things. They were pleased I'd told them and tbh just accepted it and moved on. I'd keep them updated if they ever asked.

User

Posted 05 Oct 2020 at 11:45

I would tell them.

It sucks - I had to tell my son - but better than them finding out by accident.

You can big up the fact that it is low risk and you are on AS.

Hope it goes well.

User

Posted 05 Oct 2020 at 11:55

Tell them it’s difficult but our Girls were more upset that we kept it from them as soon as we knew x

User

Posted 05 Oct 2020 at 12:13

Thanks for all the great advice!

User

Posted 05 Oct 2020 at 18:45

How old are the children? And are any of them boys?

Edited by member 05 Oct 2020 at 18:46 | Reason: Not specified

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

User

Posted 06 Oct 2020 at 12:54

My two older kids are 27 and 25. I've told my son and he took it well. I will tell my older daughter today she will probably take it harder. I have no plans to tell my 5-year-old any time soon unless the course of the disease were to change quickly and radically.

User

Posted 07 Oct 2020 at 03:15

My mate is G3+4=7 and has been on AS for five years and is doing great. He has annual MRIs and consultations with his urologist. Make sure you do as well.

Did you know that if you had critical illness insurance with certain insurers, they wouldn’t pay out on a G3+3=6 diagnosis as they don’t class it as ‘life threatening’. There is a school of thought that G3+3=6 should not even be called ‘cancer’ at all, just ‘a little trouble down below’.

Best of luck.

Cheers, John.

User

Posted 07 Oct 2020 at 05:14

Thanks, John. Still waiting for the contact from the Multi-Discipline Conference but based on the notes I can see in my case they indicate I'm likely for AS. Appears I was referred for some additional MRI or such exam but haven't been contacted yet regarding it.

Is there some typical exam done after such a diagnosis?

Funny you mention the critical illness insurance. I have that here in Sweden. We'll see in the next week if it pays out or not.

Cheers,

Barry

User

Posted 17 Oct 2020 at 08:35

Met with the MDC and they also did a review of the 12 cores and found 1 additional core with .2mm. So I've gone from Gleason 3 +3 tc1 with 1.5mm in 1 of 12 cores to now 1.7mm in 2 of 12 cores. Going to go on active surveillance. Based on my conversations with the team and all the research I've read the progression of Gleason 3 + 3 is extremely rare if non-existent. So the 25% of men who get an upgraded score at some point while on AS is either due to an initial misdiagnosis of the initial 3+3 or the missing of a more aggressive grade during biopsy or both.

I've been reading a bunch of the posts here and it seems (anecdotally) there is quite a number of those on AS who progressed and I'm curious if anybody else has a sense of why the prevalence of this seems higher here or is it just those who have progressed are more likely to post because I guess while on AS there really isn't much to announce if things remain static.

User

Posted 17 Oct 2020 at 12:49

You are probably right in that people tend to use forums when they are having problems they need advice/ reassurance on. I'm a member of a few and no one ever comes on saying hi, I'm absolutely fine, bye. So forums do present a bit of a skewed view of the world.

There must be a lot of men that get diagnosed, treated and go on to live normal lives. They may use a forum in the early terrifying days but I imagine most of those men disappear and get on with their lives off line.

Shame really because those that are having problems need that hope that there can be significant life after PCa.

User

Posted 17 Oct 2020 at 13:29

Yes, Matron has said as much before, but I still participate here although I am perfectly well apart from a truncated limp dick, and happen to have some time on my hands, to try and help others.

I never comment on anything I know nothing about, but I do have an 86 year old friend afflicted, who’s on HT, so I’m learning more about that, which may benefit me eventually if I end up on it.

Cheers, John.

User

Posted 17 Oct 2020 at 16:57

The point of AS is that it isn't necessarily a permanent choice. The purpose of the 'active' surveillance is that it allows the doctors to spot whether anything seems to be changing. As noted above, men on AS for a very long time probably have few problems and no need of a forum.

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

User

Posted 29 Oct 2020 at 09:17

I was diagnosed with Gleason 3+3 15 years ago. On watchful waiting all this time and just been recently diagnosed with 4+3 T3 cancer. Having radical prostatectomy soon. Your cancer is probably not going to disappear. It might stay the same and never cause a problem or, like mine, need to be dealt with. Explain to your children. I’m sure they’ll understand.

User

Posted 29 Oct 2020 at 09:46

Hi Barry,

Just a word of comfort I hope. Even if they do find some cancer, bear in mind that your PSA is still a low score for prostate cancer (some men literally have it in the thousands). So you may well have a contained type.

Also, prostate cancer has SO many treatment options and many men go on with great life expectancies.

I know how worried you must be feeling, and the system in Sweden sounds a bit confusing, but hold on to hope as there really is a lot of it.

All the best x

'Sorrow looks back, worry looks around, but faith looks up'

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