Sorry you had quite the ordeal yesterday.  I am rigorously trying to not pre-empt the results of the various tests because it is a bit of a head wreck.  So I still have fingers crossed for you when you get your results and a treatment plan.  

Your scanning story is a bit different to mine.

For the RNI bone scan I had a nuclear injection.  Then I went away for 2 hours and came back for the scan which took about 30 mins.  This was a full body scan.

For the CT scan I had to drink a litre of fluid (dye) and then had another injection before the scan.  The scan itself took about 5 mins.  This was focused on chest and pelvis.

So I'm curious what your second scan was.  Maybe it was a PET/CT scan which seems to be a new one.  

All my interactions with the various radiographers were just chit chat.  Also they were implementing the scan requested by the consultant so I don't think they would be able to change it on the day.

Wishing you all the best.

Rory

Gents,

I hope your various scans yield the best news possible. Mathew, - you make a good point about wives - mine has been supportive and pragmatic. I had prostate removed by laparoscopic robot method on wednesday morning- was out for nearly 6 hours but am back home feeling very sore but relieved. Surgeon told me the cancer was contained as far as they could see but biopsy will confirm that.

I'm hoping for a quick return of bladder control and sexual function but realise it could take some months.I think i've been lucky as in theory i'm now free of it. 

Hopefully you have the same options ahead but whatever happens i wish you both well. Any questions please ask,

Simon

Good news Simon.  Well done.  Wishing you a speedy and successful recovery

Thanks for sharing Rory [@Jellies]‍ 

For a moment there I was wandering down the old futile rabbit hole, you're right to avoid second second guessing outcomes. It is unhealthy and stressful...

The bisopsy process isn't that bad at all. My recovery was complete pretty much within 24 hours. Blood in the urine is expected likewise some discomfort and bleeding in the backside but this cleared quickly. Pretty impressive process thinking about it.

I think our full body bone scans were exaclty the same but my second 3D CT scanning experience was probably aiming to do the same as your second scan but using diffrent equipment. It does go so show that patients in our situation will have full body scans and CT scans focusing on the pelvis and chest. So, that's reassuring to know. 

How are you feeling, still fatigued? Do you mind me asking if you had noticed any other symptoms before or since seeing your GP? Did your other blood markers from the PSA test raise any concerns? My bloods were bang on the money in all other respects other than the PSA reading of 61.

Following your fine exmple, I plan to keep strict control of my innate desire to anticipate everything :) - thanks again sincerely for sharing your experience and best wishes! 

Wishing you and yours all the very best,

Matthew

PS: [@SDC8]‍ hope you're okay?

That's fabolous news Simon, well done you! I am sure you will get back to your normal life and make a full recovery.

All the best, 

Matthew

Matthew,

Thanks for the good wishes.I'll keep a look out on here to see how your tests go Rory. Best of luck

Hi Matthew [@Matthew2022]‍ 

Yes, I am still really fatigued.  Normally I am very fit and active with running, cycling etc.  Right now I go to bed by 9 , sleep like a log and when I wake up still feel tired.  If I try to over exert myself I crash and end up at square one.  So trying to build my energy back up and limiting my activity to walking the dog.

From what I gather, fatigue is typically not one of the main symptoms of prostate cancer so I have no idea if this is due to my prostate/PSA or if it is a coincidence that I went to the doctor with fatigue and they found my high PSA level.

Other than the rest of my bloods were fine like yours.  And with other symptoms maybe some marginal increased frequency of going to the loo (in hindsight) but nothing I'd have gone to the doctor with.  

Good to hear about the biopsy.  I just want to get it over with at this stage.  My extra check of PSA came back at 71 so no change there.

Rory

Evening Rory [@Jellies]‍ 

Always good to hear from you. Sorry to hear the fatigue isn't subsiding yet. Give it time. You're right to be sensible and build yourself up gradually. I wonder what the cause is. Your second PSA remains high but it has dropped slightly which has to be a good thing.

Like you, I can look back and try and associate maybe a slight change in my weeing pressure/strength rather than frequecy but yeah, it would never have occured to me to use that as a reason to visit my GP. I was just being cautious and following the advice to get screened. I would have gone two years ago at your age were it not for the pandemic. 

When do you get your full set of results - if your bipsies are on 8th then I'm guessing 2 weeks after that? My big reveal, I think I shared before, is at 9am on Tuesday 8th March. D day for both of us in one way or another. I will be sure to share the results here - good, bad or indifferent. I'm hoping that both of us can at least scrape through and avoid anything too dramatic. It seems to me from my reading and enquiries, stage 3 even with higher Gleason scores, are very survivable. Even stage 4 stages can be treated remarkably effectively for many years and there are loads of new innovations coming online all the time. There is much to be grateful for.

Oh and before I forget, have you been told anything about being barred from surgery if you have a PSA above 20? I was told that on Monday. If I were given the option, I would have taken the radical prosectomy route...

I know this is an uncertain and worrying time for both of us but I for one feel fortunate we can at least compare notes and support one another along the way.

Take it easy, I'm with you in close formation!

Very best, 

Matthew

Good morning Rory [@Jellies]‍ ,

The waiting game is excruciating isn't it. I have to work hard to keep from researching my evenings and nights away, looking for scraps of knowledge...It seems to me you're managing to stay so balanced and patient in the circumstances.

It seems we have been reading the same readers digest sources. I have read and watched a shed load of artciles, papers and content. I would be far less worried were it not for the PSA numbers that we both share - I understand higher PSA levels like ours are normally attributed to the presence of cancer but they aren't so reliable as markers for metastatic spread. The spread is the worry not so much the cancer diagnosis itself. 

I think the intial Oncology Nurse who shared his opinion about the strong likelihood of stage 3 or 4 advancing disease, I think too readily and prematurely, hasn't helped matters. He at the same time said I've sailed past the surgical harbour...thanks for your note on that and for looking into that yourself when you can.

I'm guessing we will be back in touch in about a week or so as that's the date for your biopsies and my results, but do reach out inbetween times anytime.

Rooting for you.

Matthew