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 [@Jellies]‍ Rory,

I've been searching for somone who best matches my profile and experience (with little success other than [@woodworm]‍ within this thread) so it is really comforting to hear from you. Thank you so much for reaching out.

Our story is incredibily similar so far although you have been seen by your Consultant more quickly than I (2 days versus 13 - I am being seen tomorrow). After my DRE my GP said he felt hardness on the leff upper side of my prostate, again very similar to your inital findings. Those findings combined with PSA 61 prompted my GP to cautiously prepare me for the, and I quote, "very real prospect of prostate cancer and potentially aggressive intervention and treatment". That was a big surprise given I merely asked for a PSA test because I felt it was about time at my age, absolutely no medical reason whatsoever. I suspect for both of us, the biggest thing to get our heads around is the really high PSA number given anything above 4 is considered dangerous. Our scores are many times more which leads you to naturally conclude, with basic arithmetic, this could be deadly serious.

I hope the fatigue that initiated your first GP appointment turns out in the end to be just one of those things, and that your next scans and biopsies are clear. The great news for you is that there is no evidence of cancer and at the very least, no evidence of any spread. Wonderful. I'd settle for that.

As for me, I am a few steps behind you. My second DRE and bone/MRI scans will happen tomorrow (21 FEB) so I am hoping our similarities don't end there...I will likely have a second PSA test beforehand. Perhaps we could share our progress via this thread going forward? 

Your story and progress so far was and is a real tonic and just goes to underscore that unusually high PSA scores like ours do not necessarily equate to an advanced cancer diagnosis. [@woodworm]‍ Brian in this thread had a PSA 70 found when was 67 years of age but the prostate cancer was contained in the prostate and very successfully treated. Of course, my experience may be different to yours and his but at least I feel more hopeful.

I hope your third PSA test results tomorrow show a decline...no doubt your consultant will want to keep investigating until you know why it is so high.

Looking forward to sharing, as you rightly say, one step at a time...steady as she goes!

All the best, 

Matthew

Have my fingers crossed for the results of your scans.  It was nerve wracking waiting for the bone scan result but the consultant told the nurse to call me straight away when it was good or at least not bad news.  It is a very stressful time and I am rooting for you!

Happy to compare notes.  I know my consultant was a bit frustrated that the biopsy appointment had to wait for the MDT review at the hospital because at our PSA level we are probably going to need a biopsy.  Do you have a biopsy appointment or will that wait until after they review your scans like it did for me?  He also said it would be an urgent case and it took three weeks to schedule post-review.  I've no idea if that is fast, slow or the normal waiting time for a biopsy.

 As I understand it you can have the PSA tests until your biopsy.  After that the results will be meaningless so I might even have one more on the 7th to see if there is any trend.  In general though I am focusing on the test results because they seem to dictate the next steps.

Take care

Rory

Hi Matthew

, just found this post and here's my numbers for comparison..

I went for routine tests at age 53 in 2017  as i felt i was peeing more often. First  PSa then 3.4 put on active surveillance. in late 2019 MRI showed some swelling of prostate. so biopsy in dec 2019 (transperennial) gave gleason 3+3 leading to template biopsy in feb 2021. this gave gleason 3+4. 

another MRI in april 2021 and review by team gave T2a diagnosis so offered Brachytherapy. This was August 2021 but Brachy failed due high calcium levels in prostate blocking ultrasound.

I'm now on very short wait for protatectomy. last PSA was 4.3 in December (it varies between 3.2 and 4.8 over last three years). So T2a and PSA 4.3. Consultant puts me 'right on the cusp between active surveillance and surgery). The choice is very difficult..one day i'm thinking i'll wait to avoid the potential and certain side effects and the next i'm just thinking..'get it out!'

I hope you are as lucky as can be in your journey and any comments on the above also welcome,

Simon

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

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

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

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