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

Hi Rory [@Jellies]‍ and Simon [@SDC8]‍,

It's good to hear from you Simon and thanks again Rory for your input and best wishes.

Rory and I are very similar in terms of PSA and initial DRE findings...see above. I think your post review biopsy appointment is rather slow, my first consultation was today and I am booked for tomorrow morning first thing. That said, my second DRE today shows significant advanced cancer.

So unfortuntely, I think that's where our outcomes may change Rory. Today at the Prostate Unit at our hospital I had a consultation and a second DRE as I said. The previous first DRE conducted by our lovely GP suggested that, in his view, the prostate was essentially fine but with a suspicious firmness on the top left hand side of the gland. The specialist today reported that the majority of the prostate is hard, noduled - both sides, top to bottom. Very matter of factly I was told that the best I could hope for is Stage 3 but it is more likely with a PSA of 61 and the DRE findings, at stage 4. He also said that it is almost certainly inoperable becuase they do not remove porstates if your PSA is over 20 anyway. 

Naturally this came as asignificant blow, my wife and children are distraught. I am more worried for their sakes than my own.

Tomorrow I will have biopsies and later in the week CT bone scans. I have had inexplicable pelvic pains in recent weeks (not months) which is a cause for concern too. The only positive indicators relate to the fact that my original PSA blood results tow weeks ago suggest all my other functions and markers are normal, which "might" suggest the cancer is not quite setting up shop everywhere. We shall see.

So chaps - at this moment, I would say you're in good shape both of you. Simon, you have treatment options due to a lower but still troublesome PSA, and Rory, your MRI and DRE haven't yet yielded any definitive cancer evidence or spread. I realise we all have more of a journey ahead of us, and I wish you both all the very best. This will inevitably be a stressful and worrying time.

So, that's me. Up at the crack of dawn and back to the hospital.

Stay in touch, keep fighting and hoping.

Matthew

Sorry to hear about your diagnosis Matthew. Thinking of you and your family tonight.  

Will you also have an MRI scan?  I was told that this was the main scan with CT as an extra scan.  Maybe they are interchangeable.  Hopefully the rest of your scans are clear and you will have a solid treatment plan that you are happy with.  

Thanks for the information about the biopsy.  I will call my hospital tomorrow to see if there is any chance to bring it forward as well as to get the results of my CT scan.

Rory

Thanks Rory.

The staff said that they'd immediately run with an emergency biopsy appointment and miss out the MRI element that usually precedes the biopsy option. I understand the upcoming MRI and/or CT bone scan will try to find any spread, these test results will determine whether it's stage 3 or 4 they explained. Not sure how exactly this will play out but I will ask the question tomorrow and feedback if that's helpful.

Wishing you (and everyone reading this) the best possible outcomes.

What a fortnight this has been! 

Matthew

Matthew,

I hope your biopsy etc goes as well as can be hoped. I'm now in for radical prostatectomy tommorrow as it appears, though low grade, i can get the contained cancer removed. Still alarming to have to go through it and all the consequential effects but at least it's treatable. 

I wish you and others here all the best and good luck

Simon

Best wishes for tomorrow

Hoping the surgery goes very well Simon.

My biopsy apppintment happened yesterday and I recieved amazing service. Remarkable people. It wasn't as painful or undignified as I feared. If it helps, I can share more about the details [@Jellies]‍ - let me know.

Today I am shoehorned into a "nuclear" bone scan appointemnt, just preparing to leave for the hospital now. 

I believe that will be it for me until 8 March at 9am for the big reveal. Just hoping and praying for stage 3 diagnosis (or better) and a managable Gleason score. The PSA 61 is already comparatively rotten and the DRE findings worryingly abnormal, so bracing myself and my family for the worst and hoping for the best.

Hope you're able to bring your biopsy appointment forward Rory?

It's odd isnt it, we havent ever met, but somehow I find myself thinking about your sitiuations and hoping you are being looked after.

Thanks for staying in touch.

Take care,

Matthew

Thanks Matthew

That is good to hear about the biopsy. I will take your paragraph and run with it.  I'm told it's all over in 10-15 mins.

Good luck with the bone scan.  Have my fingers crossed for you on this one.  I was half expecting to get super powers after my radio isotope injection but nothing so far.  Watching too many Marvel movies I guess.  

I spoke to the nurse in the oncology department yesterday which was very helpful because I found it to be a more of an informal chat.  The MRI report says I have two PIRADS 4 lesions one on either lobe.  They will target these in the biopsy as well as taking other tissue.  She said that the consultant was pleasantly surprised by my scans so far but at the same time it looks like "there is something there".  

The results of my CT scan will take up to 10 working days and biospy still scheduled for the 8th.  She said that was quick given backlogs in the system.  I'm not too concerned about it because they need to get all my scan results first anyway and 1-2 weeks won't make any real difference.  Given all the above and my PSA levels I'd be gobsmacked if they don't find cancer but just need to go through the process. 

Best to Simon today also.

Take care

Rory

Hi [@Jellies]‍ Rory,

We are in safe hands it seems...hope they don't find anything too dramatic but I agree with you, it wouldn't be a massive shock were they to find something that shouldn’t be there sadly.

My bone scan was rather more involved than I expected yesterday. After the first 20 min scan on it seems the more standard 2D machine, the technician said "Slight change of plan..." and went to to explain that the doctors are asking I get more detailed images of my chest and pelvis. I had noted during the first scan that the only time I heard frantic typing was when they hit both of those areas. 

Into a diffrent scanning room with the latest 3D CT machine I go, they explain what they wanted to do but not why, so I asked if this was being driven by earlier findings or was it procedural and the poor technician did his best to dodge that impossilbe question. So, staff kept coming out of their protective two-way mirrorred office to guide the process.

I would love for you (and Simon) to keep sharing your experiences.

Wishing sincerely you much luck and fortitude!

Matthew

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

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

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 [@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