Very worried about referral for high PSA

I've been reading about robot-assisted kidney removal (which is what I'll probably be having) and it doesn't sound too bad at all. Probably 2-3 days in hospital and another two weeks of "no heavy lifting". Far shorter recovery time than open surgery. Really keen now to get it out of the way! I'm hoping to get some sort of referral in the next week.

I'm due to go on a week's walking holiday next Friday. When I got my diagnosis I immediately thought "There's no way I'll be going on holiday after this news!" but now I'm quite keen to go. A last week of enjoyment before the unpleasant stuff starts. Seeing my urologist again on Thursday so I'll ask him if there's any reason I shouldn't go.

Actually feeling quite cheerful today, which is a real surprise. Hope it lasts - fed up with the drastic mood swings I've been going through for the last few days.

Don't really know why I'm telling anyone this stuff - I'm sure it's not of the slightest interest to anyone! - but I'm finding it quite therapeutic to get it off my chest, so I hope you'll forgive me rambling on.

Chris

Chris

OK Chris, I’ve sent you a PM. I have been through the complete diagnosis and constant waiting for results rollercoaster 5 times. I can relate the journey I have done so far. I am not a professional advisor by any means and there are nurses available on here who helped me twice when I was in a dark place. They are vastly experienced. I would urge you please to call them as well, you won’t regret it, I found them invaluabl. 

Alan

I've made another appointment with my urologist for Thursday (I'm private, so I can make appointments rather than needing the hospital to do so) because when I saw him last Thursday for the results he opened the conversation with "I've got some very bad news for you", which kind of made me switch off and miss 90% of what he subsequently said. (I'm sure he's an excellent urological surgeon, but his bedside manner needs some work!) This time I'm going prepared with a written list of questions so I can find out properly exactly what the tests showed and what's going to happen next.

Hi Chris, 

I was like you in that after each appointment my diagnoses seemed to worsen, one visit I'm going home happy the next the wind gets knocked out of my sails.

I would not be overly worried about the template biopsy as it may also show a Gleeson 3+3 and no further cancer, not sure why your urologist is suggesting the Gleeson isn't consistant with the PSA as people with high PSA readings don't always have cancer and some with low readings do. Not sure whether the mpMRI shows deep enough in to the prostate to give an accurate assessment, that's probably why they still need us to have biopsies, perhaps your urologist is just being over cautious in requesting the template biopsy. Perhaps your oncologist will be better placed to answer some of the questions you have raised as they are far more experienced about cancer, in my opinion, then a urologist.

I know it's hard to stay positive but that is all you can do at the moment try not to dwell on the negative and stay strong.

Wishing all the best 

Ants

Have a great holiday Chris. Hope you get plenty of rest and relaxation.

The aneurysm that you mentioned my mother in law had the same thing and has been living with hers for the best part of twenty years your vascular surgeon sounds like a good person.

Have a good time 

Ants

Hi I am pretty in the same position, but I woke up one day and thought I am 51 and Black and those are 2 factors I have thought about, I am having a biopsy soon and i'm scared my family are too, I don't really have any of the signs but with a Biopsy I'm so afraid that I will get bad news! help me please!

Edited by member 04 Jun 2018 at 22:28  | Reason: Not specified

My case has been to MDT now, and I had a long (nearly an hour!) meeting with the MDT urologist (privately) last night. He's the one who's going to sort out my kidney tumour, and he gave me a very detailed look at (and explanation of) the pictures from the CT scan. He is very confident that he'll be able to remove just the tumour and leave me with at least half of my kidney, which is far better news than I was expecting, so I'm happy about that!

On Monday evening I'm seeing the oncologist to talk about the prostate cancer. The news is apparently good: Gleason 3+3 with 8% of cancerous cores on one side, and 16% on the other, with the mpMRI showing no sign of cancer spreading to the lymph nodes or bones, so all those factors put me very much in the "low risk" category, but the "elephant in the room" is the PSA of 31, which is inconsistent with the findings. The concern appears to be that there might be more active cancer in the front of the prostate which the TRUS can't sample, so the urologist suggested that they're likely to recommend doing a template biopsy to see if the TRUS missed something more active. He reckons that they're unlikely to simply put me on AS with a PSA as high as mine is.

I mentioned that the CT also showed an aneurysm in the splenic artery (the artery leading to the spleen). Although the vascular consultant said that the vast majority of these are benign, he's asked for a more detailed CT scan of the artery in order to have a closer look. The concern is that the splenic artery runs very close to the left kidney (where they'll operate), and when the clamp off the blood supply to the kidney during the operation that will increase the blood pressure in the splenic artery, so they don't want it to burst when they do that! So I should have that additional CT scan early next week, and a follow-up with the vascular surgeon to hear his opinion on the findings on Thursday.

So things are happening, but probably a few tests and scans still to do before I actually start treatment.

Feeling happier about things now, though. Everything is being investigated, and it all looks "fixable".

Cheers,

Chris

Hi Chris,  glad you’ve got some good news on your journey.  The reason that I had the template biopsy was because TRUS  can easily miss areas of the prostate And my consultant wanted to be sure, I’m so glad he did.  The one thing I knew after my template biopsy was exactly what cancer I had without any doubt.  It was an easy day case procedure for me, in at 8 AM I’m out at 2 PM general anaesthetic no pain after-care was minimal.

 Once you have had that, you will know exactly where you are.

 Good luck keep in touch 

Alan