Hi 61 can be said as high but can still be in the prostate (remember im not medically trained just a patient) .  A gent called [@woodworm]‍  had a PSA of 70 years ago. It was contained ,he had hormone therapy then radiotherapy .Don't know if he's still on forum but you are still read up on him, by going to search at top of page in thick blue line and insert his name .

Im a bit different PSA was 1581 when diagnosed , February 2016 , i had no side effects at all . i was 64, never knew about PSA test till diagnosed .

Keep sure .

Billy

Thanks for your reassuring message Billy.

My goodness, your inital PSA reading was so incredibly high at diagnosis. How on earth did you process that especailly when you saw others worry, understandbly, over single digit PSA markers? Very glad you're still here and doing some good. I certainly have found this forum very informative and supportive. And yes, I have read with interest [@woodworm]‍ uplifting story.

I had my DRE this morning and the prostate is enlarged but not massively so, it is fleshy and smooth (so far so good) but it has a small harder/firmer area on the top left of the gland, plus the usual dip located at the top is more rounded which suggests abnormality. Still, looking on the bright side, at least it's not bumpy, dense or hard which I am told can be tell-tale characteristics of some advanced cancerous prostates.

My MRI and biopsies are booked in for Monday 21 Feb. 

Like everyone in this forum knows only too well, the waiting game is often the most challenging aspect at this early stage of the game. Hoping for containment and no spread (with the increased treatment options available) but resigned to the likelihood of cancer.

Thanks for listening, appreciate the message of support.

Wishing you well,

Matthew

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

Yes I imagine I'll get the results a couple of weeks after the biopsy.  I'll be on holidays from the 19th so I hope they don't ruin it on me.  For treatment the nurse said that there are a number of options but she said for me they will be strongly recommending a certain course.  I took that to mean because of age, but could also be because of PSA level.  From what I have read even with high PSA surgery has good outcomes and should not be discounted provided there is no external spread (seminal vessels, lymph nodes etc.).  However, if there is local spread then I think other treatment options have equal or better outcome. That is my reader's digest level understanding.  But I'm not at the stage of treatment options yet, so if they mention anything about PSA threholds I'll let you know.

Thanks for keeping in touch and take care

Rory

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

Hi really glad you have people to talk to about things, its always better for you and others who are in similar positions .

Good luck to you all with treatment options and treatment itself and very little side effects .

But wishes for the future .

Billy

Thanks Billy for sharing your knowledge, experiences and support. Hope we can remain in touch.

Wishing you continued recovery and happiness.

Matthew

Hi [@Jellies]‍ [@woodworm]‍ [@Billygoatt]‍ [@SDC8]‍ and everyone,

Not sure what to make of this but I was called late afternoon today by the hospital asking that I meet with the oncology nurse tomorrow morning at 9am. The original meeting was scheduled for next Tuesday 8th March. It appears all my incredibly fast tests, scans and biopsies were processed and assessed just as quickly.

This could be nothing, could be something, who knows. My wife's and my own immediate natural response was "that's gotta be a bad sign" but thankfully that feeling has tempered since the call. It's amazing how single moments like tomorrow's conversation can have such lasting consequences. Such is life. At least I don't have to wait another worrisome week :happy:

I'll be sure to let you know what the scores on the doors are tomorrow!

Hope you're all bearing up.

Matthew

Hi [@Jellies]‍ [@woodworm]‍ [@Billygoatt]‍ [@SDC8]‍ and everyone,

Not sure what to make of this but I was called late afternoon today by the hospital asking that I meet with the oncology nurse tomorrow morning at 9am. The original meeting was scheduled for next Tuesday 8th March. It appears all my incredibly fast tests, scans and biopsies were processed and assessed just as quickly.

This could be nothing, could be something, who knows. My wife's and my own immediate natural response was "that's gotta be a bad sign" but thankfully that feeling has tempered since the call. It's amazing how single moments like tomorrow's conversation can have such lasting consequences. Such is life. At least I don't have to wait another worrisome week :happy:

I'll be sure to let you know what the scores on the doors are tomorrow!

Hope you're all bearing up.

Matthew

Mathew,

good luck for today.Whatever happens there's a huge amount of support out there,

Simpn

Hi everyone,

Well, our worst fears have just been realised in the last few hours. 

I am officially Stage 4 Gleason 9 with spread to the pelvis, pubic bone and spine T5 vertebra (at least). I will need a further full CT scan to make sure they've identified everything. The appointment was itself worryingly mishandled too, which wasn't helpful. Anyway, that doesn’t change my new reality.

It's surreal that in the space of 3 weeks or so, with still no symptoms aged just 52, from a random PSA test for prudence sake we now find ourselves in a life-limiting situation. Life isn't fair I know, and I shouldn’t complain too bitterly as there are so many less fortunate that me, but today of all days I think I'll give myself a little room for a grumble!

My poor wife and kids are distraught. I worry for them more than me.

Any advice for this next phase always welcome.

All my best to you all,

Matthew

Hi Mathew,so sorry about your results,. Remember there are still options as you know with me , can't remember if I put my main details (stage 4 T3B N1 M1B Gleason 8) Gleason varies alot depending which specialist is doing it, remember mine went to lung and lymph nodes .

Take care remember your family and keep positive and sure .

Billy