Very worried about referral for high PSA

User

Posted 29 Jul 2018 at 12:27

Thanks - I really appreciate the good wishes. I know I'm being silly about this, but nonetheless I can't help worrying. I've always had a bit of a phobia about hospitals. It needs doing, though, and fingers crossed by the end of tomorrow there'll be one less things wrong with me.

Chris

User

Posted 29 Jul 2018 at 15:33

Originally Posted by: Online Community Member

I fully understand Chris and know where you are coming from. Update us all on here once you are home please

Alan

User

Posted 30 Jul 2018 at 19:47

All done. I can't honestly say that a 3+ hour operation during which one is completely conscious has a great deal to recommend it, but there was relatively little discomfort, and the surgeon was very happy with the outcome. I've had lots and lots of long strands of platinum inserted in the aneurysm, and when he'd finished it looked in the X-Ray image just like a ball of wool, with all the strands tangled up and intertwined. The blood will clot around this structure and should completely seal off the aneurysm. From now on, though, I'll probably be setting off airport metal detectors!

I'm now back on the ward having my vital signs measured every 30 minutes, but so far, so good. If all continues OK I should be back home tomorrow.

Chris

User

Posted 30 Jul 2018 at 21:05

Very happy to see you posting - which indicates that you have survived step 1

Stay well x

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

User

Posted 30 Jul 2018 at 22:02

Great News Chris, now onto the next task!

Chin up, as I said before

Alan

User

Posted 31 Jul 2018 at 20:47

Home again. Feeling rather as if the insides of my abdomen have been beaten with a rubber hose, but the doctor said that's to be expected after 3h with all manner of tubes and wires inside me.

Haven't really had any sleep for two nights - Sunday because I was worrying about the operation and last night because I was being woken up every hour to have my stats measured, so I'm hoping that after a good night's sleep tonight I'll be feeling a lot better tomorrow.

Chris

User

Posted 06 Aug 2018 at 07:45

Big day tomorrow - I get the results of my template biopsy. I’m hoping it’s found more active cancer than the Gleason 3+3 that the TRUS showed up, because I really need something to be found to explain my PSA of 32.

A question for our experts: I’ve had an MRI skeletal scan to look for bone mets, which came back negative, but is it possible that my high PSA could be due to mets that are too small to show up on a scan still? I’m a little worried, because although all the scans I’ve had have shown no sign of cancer outside the prostate - no spread to the lymph nodes and no bone mets - what’s been found so far really doesn’t fit with my PSA score. I’m praying that I really do “only” have localised PCa and not something more advanced.

I don’t know what will happen after tomorrow - I guess I’m likely to be referred back to the oncologist to discuss treatment options? It’s been more than three months since my initial PSA test - would be nice to hear someone talking about treatment!

Chris

User

Posted 06 Aug 2018 at 08:42

No if I was you I would still be hoping they find nothing!! A G6 can be a big tumour never mind all the other possibilities ( infection etc).

User

Posted 06 Aug 2018 at 11:54

My psa was a rapid climb before surgery but it took them ages to find anything. I think the template found my G9 eventually. I was kind of forced into surgery but it was too late with bilateral lymph spread sadly. Post op psa was 1.5 and doubling every 3 months. I did a year HT and it dropped the psa. We then decided to look for the cancer rather than do nothing so I stopped HT. I’ve steadfastly refused RT as they sure I have mets everywhere. However here I am 3+ years after surgery with ZERO treatment and a psa racing towards 100. All recent scans have shown nothing anywhere in my body. So I’m riding the gauntlet and enjoying every drop of total recovery whilst I can !!

User

Posted 06 Aug 2018 at 13:23

In my case, Chris, two MRI scans and an abdominal CT scan have shown no evidence whatsoever of spread outside the prostate, so I think that, even though my PSA is quite high, I have reasonable cause for optimism that my PCa is localised.

Chris

User

Posted 06 Aug 2018 at 14:09

I had an MRI and bone scan pre surgery. I also had a CT. I’d had 2 TRUS biopsies and eventually a template biopsy. But it was too late for surgery I guess. But if I had 5 out of 18 lymph nodes cancerous why was nothing spotted. I love our NHS but at the end of the day a scan is only as good as the radiologist who interprets it ?? And some surgeons are far better than others I guess ....

User

Posted 26 Aug 2018 at 08:48

Chris, from all the research I did the message came out loud and clear not to use a PSA score as an accurate indicator of the level of cancer one might have. Indeed the first Urologist I consulted said all men are different and levels can vary enormously from one to another who might have similar conditions. 32 is significant but not that high in comparison to some men who can register in the hundreds.

Take heart that your mets and bone scans are coming out clear. If you start to distrust those then you're heading down a road of obsession that will not help your general outlook. As you've said, it looks good for you so go with that and once you're ready make your choice between the Sword or the Ray.

If you choose the latter feel free to PM me and I'll be happy to chat about my own experience in the North West.

Good Luck.

User

Posted 26 Aug 2018 at 08:57

Sorry, I should have added a link to the new thread I started when I made my choice. The urologist and the MDT all recommended against surgery, so I've gone down the HT+RT road. I started on 150mg daily bicalutamide + 20mg weekly tamoxifen on 17th Aug with the aim of staying on that for two years with RT after 6 months.

My new treatment thread is:

https://community.prostatecanceruk.org/posts/t16423-Cheshire-Chris-s-Treatment-Thread

so best to carry on any discussion there.

Cheers,

Chris

Edited by member 26 Aug 2018 at 08:59 | Reason: Not specified

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