Very worried about referral for high PSA

Well, this is a bit of a bummer.

Firstly, you won't be surprised to hear that I do have prostate cancer. Could be worse: Gleason 3+3, 8% of positive cores on one side, 16% on the other. Not too stressed about that - I suppose if you have to have PC, that's probably about as good as it gets. Probably be offered either RP or RT for that.

Secondly, the CT scan has showed a 4.5cm tumour on one of my kidneys, which is almost undoubtedly malignant. This appears to be entirely unrelated to the PC - it's just been caught purely by chance by the CT scan. A good thing too, because it appears (fingers crossed) to be entirely contained within the kidney, so hopefully removing the kidney will sort it out. Had it been left undetected for another few years it would have been lights out. One can manage perfectly well with one kidney, which is in fact what my urologist reckoned my body is pretty much doing at the moment. 

Finally, the scan seems to show that one of the major blood vessels to my spleen is on the verge of rupturing, so I need to see a vascular surgeon about that.

So, next will be a referral to the MDT at the nearest major oncology centre, who will take care of the PC and the kidney, with a separate referral for the vascular thing. 

All in all, not entirely the news I was hoping for, and I'm feeling a tad down about it. 

Oh well,

Chris

Edited by member 24 May 2018 at 17:48  | Reason: Not specified

Scared shitless. Total despair. Nobody to talk to.

Chris

I should be grateful for the PC - it may well have saved my life. My urologist said that if the kidney tumour had been left another few years it would have spread, and stage 4 kidney cancer only has 5-year survival rate of 8%. It's pure luck that the prostate MRI happened to catch one portion of it and I had a sharp-eyed radiographer.

Chris

In your case, there was nothing to prepare you for anything more than a PCa diagnosis and although it is human nature for people to imagine a worst case scenario and then rehearse how they will react, what will be said, etc etc that was all taken away from you by the actual result being so unexpected.

Hopeful that you will soon have a plan in place and can get on with dealing with it all. My assumption is that they will want to deal with the vascular issue first?

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 23:28  | 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

Firstly, this lunchtime I had a more detailed CT scan of the splenic artery, where the aneurysm is, to see if it'll need anything doing before they can go ahead with the kidney surgery. The last CT scan I had, for the kidney, I was fine with, but apparently when they scan a blood vessel they need to pump in a much more intense dose of the iodine "marker" that goes in through a cannula in the arm, and that's had me throwing up all afternoon. Not nice at all. Seeing the vascular surgeon on Thursday morning to get the results.

This evening (still feeling somewhat queasy!) I've seen the oncologist who attended the regional MDT. He said basically what I was expecting, which is that the Gleason 3+3 from the TRUS isn't consistent with a PSA of 31, so they want to do a template biopsy to see if more active cancer is lurking around the front of the prostate. He's referring me to yet another consultant (number five!) for that, and it'll probably be done next week. That'll be under general anaesthetic (thank God!).

One thing he did say is that with a PSA of 30+ they're very unlikely to offer surgery, because that level of PSA probably means active cancer cells that could be missed by the surgery, so the offered treatment will most likely be HT followed by RT.

So things move on, but unfortunately no treatment plan as yet.

Cheers,

Chris

Not too concerned about the template biopsy. Peed blood for a week and a half after the TRUS, so hoping this time I'll avoid that!

Cheers,

Chris

I had the iodine marker on two MRI scans as I had suspect areas that were not clear.  I had no adverse reactions I think you were just unlucky 

 I think the strangest thing was going for the bone scan and following the signs for nuclear medicine and going down in a lift as it was in the basement 

 Then watching the technician get the injection out of a shielded metal box nearly freaked me out 

Edited by member 11 Jun 2018 at 21:48  | Reason: Not specified

They move quickly, anyway. Just got a phone call from the hospital to arrange an appointment for Saturday morning with the chap who’ll be doing the template biopsy. He will be the 5th different consultant I’ll have seen in the last month! This isn’t an appointment for the procedure itself, just for a consultation. I’m hoping the procedure will follow soon after that. I believe that since this will be done under a general anaesthetic there’ll be a “pre-op” examination (ECG, etc).

Starting to worry a bit about tomorrow’s appointment to get the results of the aneurysm scan, in case they say that it’ll make the kidney surgery too risky. The vascular surgeon did say that there was a very small chance they’d need to remove my spleen and tie off the splenic artery, but that would only be done if it were a case of saving my life, but I need the kidney surgery to save my life. Eek! Must try not to over-analyse these things, but still worrying about it. Oh well, I’ll know tomorrow. I really want to get the kidney surgery over with so at least the renal cancer is sorted out.

Chris

Edited by member 13 Jun 2018 at 09:53  | Reason: Not specified

I'm not worrying about the template biopsy particularly, more about what it might show. The oncologist whom I saw on Monday said that in his experience a PSA level as high as mine is more consistent with locally advanced PCa than localised PCa, and that obviously has implications for the chance of a long-term cure. Unfortunately I've always been a worrier - can't help it!

I'm hopeful that this will be the last test I need to have. They seem to have been going on for an eternity, although I'm well aware that I've been fortunate in getting all this done a lot more quickly than many people do, and that it's actually only been 41 days since I got the results of my initial PSA test.

Once the results of the template biopsy come back they should give me a definite staging for my PCa and then a treatment plan can be put in place.

Chris

Cheers,

Chris

I suppose the good news is that these appointments don’t have weeks in between Chris. Keep your chin up pal.

Chris

I started my journey on 26th January and started treatment 8th April, so I think that’s 41 days, just about 6 weeks?

i had 5 scans in total, Bone, MRI and CT were routine to eliminate possible mets, then 2 more detailed area MRI scans where the radiographer was unsure about results, 1 was a spot on my spine that thankfully turned out to be nothing and 1 on my pelvis, that has turned out to be Paget’s disease,  a bone growth abnormality, something that is nearly always discovered by scans looking for something else.  Once I am through the cancer treatment I will look into what can be done about the Pagets disease

My detailed timeline;

PSA blood test 26th January

result of 38 PSA 30th January 

DRE with consultant 8th February 

MRI Scan 9th February (got last minute cancellation as I live 2 miles from hospital)

Trans perineal biopsy day case 1st March

Oncologist review of biopsies 15th March

Gleason 4:5 = 9 in 11 cores on left, greatest core was 100% total cores 60%

Gleason 4:4 = 8 in 5 of 12 cores on the right, greatest core was 80% total cores 20%

So as I had 32 biopsies, 9 were clear.

Bone scan 23rd March mets

CT scan 26th March mets 

Consultant review 29th March 

Detailed spinal MRI scan 3rd April mets

start Bicalutamide 8th April

Decapeptyl hormone injection 23rd April 

End  Bicalutamide 6th May

MRI scan 11th May mets

Blood test PSA Testosterone check 15th June

Full Oncologist review and RT planning 21st June 

 The last two are Imminent 

 I have put this whole list as it might be of use to other members of the website to give them an idea of what occurs 

Edited by member 14 Jun 2018 at 14:16  | Reason: Add information

Consultant appointment at 10 o'clock in the morning. Perhaps he'll be able to give me a little reassurance. Hope so. Worst day emotionally that I've had in a couple of weeks today.

Chris