My Story PSA gone from 3.1 to 7.5 in a year

User

Posted 02 Jul 2016 at 05:03

Hi everyone, Have Posted this story here before, but posted it as 2 posts, another member has suggested I post it as one post as it is less confusing.....Just trying to get some help or input from you guys who may have been there before....Many thanks in advance

I'm 58 year old , medium height and weight, reasonably fit. No known health probs (until now)
Story begins 10 years ago when I was 48, went to docs with the usual waterworks probs, needing the loo more often, getting up in the night etc. PSA test 1.2 DRE "nothing unusual" got used to it over time.
Fast forward 8 years go to the docs as problem now a tad worse....looking for loos when out, getting up twice a night etc. Doc does DRE and then sends me for blood test following day (yeah I now know that was wrong) PSA now comes back 3.3 and doc suggests referring me to urologist. Being a bloke I freak a bit ( big mistake) do some research find out that DRE should be done after blood, plus had been out on bike the day before....doc agrees to new test, this time PSA 3.1 just over the threshold.....Doc senses my reticence to go to the hospital (plenty of time to regret that now) agree to 6 monthly checks in case my baseline is higher than some.....Next 2 readings both come in at 3.1.....Get complacent and leave it 14 months before next test, and then only go because of chronic nagging back ache which I've had for a couple of months.....give blood on Thursday,, told ring for results Monday....Come home Friday to an answerphone msg to call the surgery...Cue Klaxons and red lights flashing).
Surgery closed over weekend so have to sweat it out until Monday..needless to say obsessional Internet research all weekend...On the phone first thing Monday...Docs appointment for the afternoon....Go into surgery almost shaking wondering what my fate is going to be......PSA is 7.5 .....I had been imagining double or treble figures so almost breathed a sigh of relief . Doc could see I had been a bit freaked, was very professional and matter of fact, did a DRE and said gland felt enlarged but nothing untoward...asked some questions, said he would probably refer me to a urologist, but in the meantime provide a urine sample and more blood to check kidney function......Came out whistling.....all that worry for nothing.
Following morning peeing into bottle and just held tip of penis to prevent overspill and noticed drop of blood on tip. Great, I thought it is an infection......Go see practice nurse, have blood taken, give her bottle and explain about blood. Oh, she says we can check that straight away......puts stick in urine says no, no infection, all pleased like that was good......I wanted there to have been an infection....if not infection then why the blood? Came away feeling very worried Again!
Consoled myself with the fact that maybe the lab had more sensitive equipment and also the blood had yet to be checked.....
So the following day, mobile phone pings with message "Test Results....no action needed" well this isn't what I want to hear at all....plus remember, there was blood in my urine so how can that be "no action needed" ....ring doctors told I'll need to ring in two days time (no way I'll be a basket case by then), play the "potential cancer" card and get a late appointment.....See a different doc....very on the ball....explain my concerns she understands....ask how my test came back "no action" when there was blood in the urine? She checks and says that it was on the report......Huh?
Explain my concerns about my psa rise with no obvious infection, plus the backache.....checks and pushes and prods my back, is non- committal but says that metastasis is unlikely ( doesn't stop me thinking it though)... Plus I tell her I have in the last day or two developed sciatica type pains in both legs....more in the left one.....she puts it down to the existing backache..
So this doc sees I'm concerned, gives me a referral to either Maidstone or Tonbrige Urology dept in the next 2 weeks (fast-track)
So now I go home do some more research (maybe too much knowledge is dangerous) read about aggressive cancers being associated with rapid rises in PSA......plus sciatica like symptoms are one of the first things to show up along with hip and back pain in advanced PCa. So now you can Imagine I AM a basket case......keep having panic attacks which is only upsetting my poor wife, who is trying to be strong and positive for me......but I'm doing neither of us any favours (never thought I would be like this but who knows how anyone responds to this kind of stuff....)?
So I'm obsessively scouring the prostate cancer forums and googling everything in sight, which I know probably isn't a good idea but it's the only "control" I have over something I can't control....
So my symptoms are nagging back pain which comes and goes, and can wake me up....Sciatica type symptoms in mainly left leg and slight tingling in toes.
Nagging pain in groin which comes and goes and feels as though I've been kicked in the testicles. Plus the PSA rise over the 14 months as mentioned in previous post. Plus 1 time slight blood in urine
Just wondering if any of you guys out there have had anything similar or could shed some light on what's happening?
I of course want it to be BPH or Chronic prostatitis that's caused the raise, but would BPH cause these symptoms? I know prostatitis can have these symptoms but it's the backache and leg tingling that's freaking me out......Plus anyone out there had that kind of spike in PSA and what caused it? any ideas or suggestions will be amazingly welcome.

Thank you for reading this small novel...

User

Posted 02 Jul 2016 at 22:02

Tony,

flexible cystoscopy is not as bad as you may fear, I have had several, last one May this year. My worst was the first, not knowing what to expect, the unknown.

As for how do others cope with diagnosis? I wept. Simple. Eventually I got to "acceptance" of my situation, and now I am calmer. That did take a while, and the sooner anyone gets there the better.

No matter, we are all older than 52 as Caroline Ahern, poor kid.

Oh and after 3 years and 2 months post robotic surgery I am still getting PSA results of < 0.1, so all good. There is always hope.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 02 Jul 2016 at 23:05

Cystoscopy can be used... but a more common method if they suspect anything wrong prostate wise is a transrectal ultrasound (TRUS) (an ultrasound technique that is used to view a man's prostate and surrounding tissues).

The doc can measure the size of the prostate and also look at the prostate and surrounds on screen.

The same piece of kit is also used to take biopsies.

Cystoscopy is more commonly used to look at the bladder and urethra and again biopsies can be taken if felt necessary.

KRO...

User

Posted 03 Jul 2016 at 08:19

After many years of back pain,at around your age I had severe back ache for many months, not every day but several days a week. I had to stand slowly walk a few steps with a stoop and eventually manage to stand up straight and walk in moderate discomfort. After a quite a few days of struggling to pass urine I was stood at the toilet struggling to pass urine again when suddenly there was a ping as a kidney stone hit the bowl. The back ache disappeared within hours.

Conversely I had no pain in the lower regions prior to being diagnosed with PCa. With a PSA of 7.7. I am again suffering with intermittent back and hip problems and I have been prescribed naproxen which is very effective. A few years ago I was diagnosed with early onset of osteoarthritis an x-ray a few weeks ago reaffirmed the osteoarthritis. I also have CKD3 and following some abnormal results again a recent kidney scan showed nothing of concern. My consultant tells me that metastatic complications are "unlikely" with a PSA below 20, and mine is now 0.13.

What I am saying is things are not always what they appear to be, you do seem to be over thinking things, a former work mate had a fluctuating PSA sometimes well above the 20/30 mark and following several scans and template biopsies has been given the all clear. As already mentioned Dr Google can throw up all sorts of anxiety.

In the right hands the cystoscopy will be totally pain less and in the wrong hands slightly uncomfortable, I only had cystoscopies post prostate removal to look at scar tissue.

Hope you get to the bottom of your results soon and stop worrying about what ifs, being diagnosed with cancer is a challenge but staying positive does help.

Thanks Chris

User

Posted 04 Jul 2016 at 06:55

Further thoughts on low and high PSA numbers

It is true that John had a score of 3.1 and it had spread to his bladder; Si had 3.6 and it was already all over his skeleton. But these are rare exceptions, sometimes down to a particular kind of cancer that doesn't produce PSA. It is possible to have PSA around the 100 mark and have all tests repeatedly come back clear.

There is simply no way of guessing from the results you have so far, so you are building yourself into a frenzy for nothing. What you don't understand yet is that even if you get the all clear from these tests, you will now always have regular PSA tests, that for the rest of your life you will think 'cancer' every time you get a backache, that this never ends because you can't unknow what you know. So best to learn to manage that now rather than let it eat away at you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Jul 2016 at 16:57

Originally Posted by: Online Community Member

Hi Lyn
Is that genuinely advised about massage ?? I've been getting a weekly massage at Wessex Cancer foundation , even though I have lymph involvement and suspected Mets!! She said it would be fine as it's more relaxing than deep therapeutic. X

Hi Chris, massage delivered by a cancer specialist, hospice day centre, Macmillan / Maggie's volunteer is fine ... it is massage or manipulation by someone that doesn't know about cancer and mets that we need to stay away from.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Jul 2016 at 17:53

I am not bothered about me, its reading a load of Boll**ks that annoys me

Don't deny the diagnosis; try to defy the verdict

User

Posted 05 Jul 2016 at 06:22

I was once told that at the hospital when you go to see the consultant there should be another door with the title paranoia on it. We have all been tempted to walk through that door on occasion.
When you suddenly face something like this you naturally start thinking every ache and pain is associated with cancer. The stress exaggerates it and in some cases causes the aches.

I have walked your path as has everyone on here, its not easy but it does get easier.

I had an aching back and hips....was it stress or was it due to a tumour in my prostate...i dont really know.

Why dont you give the nuses at PCUK a ring...they may be able to offer you some reassurance.

Bri

User

Posted 05 Jul 2016 at 08:24

People get scared when a diagnosis is in the offing but it does not help to think and project only worst case scenarios, in fact better not to speculate at all as it is clearly leading you into a horrid place. Remember your wife may be supporting you but might need some reassurance too.

As others have said your PSA and your slow rise would normally indicate a reasonable outcome. Si's result and mine too (7.5 with bone mets) means it's not certain but recently I talked to someone with PSA in the 100s, no spread, Gleeson 7. It's no certainty either way so get tested!

So calm down, take a deep breath and think positive thoughts!

Show Most Thanked Posts

User

Posted 02 Jul 2016 at 09:55

That's easier to manage -best all in one place. I can't see anywhere in your post what you mean by a spike in your PSA though, so I have perhaps missed something? The rise over 14 months is steady and could be more indicative of BPH or prostatitis than of cancer but no doubt the consultant will have a feel and offer you a biopsy or in some areas, a scan followed by biopsy.

If your blood tests came back clear, that is good news. Tiniest amounts of blood that cannot be seen by the eye will always show up in the blood test so whatever you saw, there was none in the sample you gave. On the other hand, some UTIs (which can cause the nagging pack pain and other symptoms you describe) are notoriously difficult to diagnose and often come back clear in the first round of tests.

As hard as it is to do, best to stop googling or guessing and just wait for your referral.

Edited by member 02 Jul 2016 at 16:22 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jul 2016 at 16:09

Hi Lyn, thanks for replying...the trouble with writing a small novel is that some of the info gets lost in all the verbiage.....My PSA went up from 3.1 to 7.5 in 14 months....hence my concern...I have read on all the various sites what a sudden spike of that magnitude can mean and it is really freaking me out. My GP ordered a urine test for infection and a blood test, both came back negative.....from what I read BPH wouldn't give a 4.4 point raise in that 14 month window (unless you know different) It could be prostatitis as I do have the symptoms....but the bad back and sciatic pains are really bothering me as they can mean something very sinister.

Came home today to a letter from my hospital I am booked into the urology unit on 12th July for a flexible cystoscopy....I've looked it up....looks like a bundle of laughs http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Still at least things are happening I suppose.....

Any other insights you may have are always welcome

Thanks again Tony

User

Posted 02 Jul 2016 at 16:21

Ah okay, I thought there must have been another result apart from the 7 . I don't think you can call that a spike - a doubling time of 14 months is not sudden. A doubling time of 6 weeks would be sudden!

I note from your previous posts that the sciatic type pain in your legs has only started since you saw the blood on the tip of your penis - the mind can play great tricks, once you think there is something wrong with you, every twinge and creak becomes sinister and terrifying. You might simply be not sleeping as soundly as usual or it could be psychosomatic. Try to stay calm.

Edited by member 02 Jul 2016 at 16:24 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jul 2016 at 16:53

Hi Lyn, Actually your maths are a bit out 3.1 to 7.5 is an 11 month doubling time (there are PSA velocity calculators on the web...who knew?) anything under 3 years is considered sinister.....(See what I mean about researching too much?) I looked at your profile, pleased to see your husband is doing well....I know it's not your fault and I know that there are no "rules" as far as prostate cancer is concerned but your husband was 3.1 (which was my reading for 2 years and I considered "Safe" because it fell just on the line of my age group)....turns out there is no "Safe" wish I'd known then what I know now....My doc offered me a referral 2 years ago at 3.1 and I said that I would agree to a 6 months retest every six months....then got blase and waited for 14 months.....what an idiot.

I know there are guys out there who have had readings far higher and have had grade 6 and T1 and small %of prostate.....but needless to say I'm in the worst case scenario state of mind......I'm normally a very pragmatic kind of guy but this has thrown me for a real loop....I'm a basket case, and I haven't had a biopsy yet......My wife is now being the strong one, as I am a hunk of blubbering jelly.....Not fair on her, But "for richer or poorer" eh? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

can I ask how the diagnosis affected you guys?.....I'm hoping that I'm gonna settle down at some stage....Don't want to live my life like this....

User

Posted 02 Jul 2016 at 19:31

Yes my maths is fine thanks - to use the calculators properly you would need to input your PSA from 8 years ago, the 3.3 and both 3.1s as well as the 7. Assuming your 3.3 and 3.1s were three monthly it brings your doubling time to about 15 months.

My point was that it can't really be described as a spike. Don't know where you picked up the idea that a doubling time of less than 3 years is sinister? As I said, Google is not your friend and you are going to drive yourself mad before you even know whether there is a problem.

Edited by member 02 Jul 2016 at 19:37 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jul 2016 at 19:49

Dr DRE...

You really need to calm down and stop using google or other search engines as diagnostic machines.

My advice to you is to wait for your tests, scans and anything else that the experts have advised you to have and then they will advise you further on your condition... whatever that is.

No amount of questioning on here will get you the answer any quicker... none of us are expert enough for that. If we were we would probably have white coats and a stethoscope.

Once you have the full diagnosis there are many on here that can provide support and (laymen's) advice as you go through your treatment... and Lyn is one of the most knowledgeable in that respect.

KRO...

User

Posted 02 Jul 2016 at 21:27

Hi Lyn, I didnt mean to insult your maths expertise, perhaps i was inputting the data incorrectly......the 3 yesr doubling has been postulated by a respected American Urologist called Partin......the Partin tables are apparently the benchmark for PSA velocity. (In the USA anyway)

Too late I've already driven myself mad.....Cant put that genie back in the bottle. I wouldn't be so freaked if it wasn't for the back and hip pain.....I do appreciate your feedback.

KRO thanks for your input . I wasn't asking for a diagnosis online ....just outlining my experience and wondering if anyone else here had experienced similar...and what the end result had been, thereby maybe giving me an idea of what to expect.

my first test is in 10 days time a flexible cystoscopy which sounds like a barrel of laughs

Regards Tony

User

Posted 02 Jul 2016 at 22:01

Originally Posted by: Online Community Member

my first test is in 10 days time a flexible cystoscopy which sounds like a barrel of laughs

Regards Tony

Hi again,

I had a cystoscopy a week before my op to check the bladder for anything untoward.

You can feel it but with the local anaesthetic (a gel) there was no pain and, if you are up for it, you can see your inside on the screen!

This procedure is really nothing to worry about.

KRO...

Edited by member 02 Jul 2016 at 22:03 | Reason: Not specified

User

Posted 02 Jul 2016 at 22:02

Tony,

flexible cystoscopy is not as bad as you may fear, I have had several, last one May this year. My worst was the first, not knowing what to expect, the unknown.

As for how do others cope with diagnosis? I wept. Simple. Eventually I got to "acceptance" of my situation, and now I am calmer. That did take a while, and the sooner anyone gets there the better.

No matter, we are all older than 52 as Caroline Ahern, poor kid.

Oh and after 3 years and 2 months post robotic surgery I am still getting PSA results of < 0.1, so all good. There is always hope.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 02 Jul 2016 at 22:09

Hi guys, thanks for your posts.....Is a cystoscopy a standard procefure for looking at the prostate? I woulld have expected some marvellous piece of equipment coming at me from the rear.....Unless they are trying to eliminate some bladder prob first.....as for Caroline Ahearn....absolutely...Cancer is such a ghastly disease

User

Posted 02 Jul 2016 at 23:05

The doc can measure the size of the prostate and also look at the prostate and surrounds on screen.

The same piece of kit is also used to take biopsies.

Cystoscopy is more commonly used to look at the bladder and urethra and again biopsies can be taken if felt necessary.

KRO...

User

Posted 03 Jul 2016 at 00:07

No, cystoscopy isn't a routine response to concerns about the prostate. Maybe your GP suspects a bladder problem more than anything else - possibly due to the frequency of weeing and the sharp pains ... John had this and was diagnosed at age 35 with a problem that was stopping his bladder sphincter from working properly. He took Xatral for 15 years to relax the muscles.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jul 2016 at 00:16

PS in terms of outcome/options nomograms, Memorial Sloan Kettering and the other American ones have to be adjusted for British men, as we tend to do worse here than over there (British men tend to be diagnosed later than Americans) and then adjusted again for the area you live in.

So we live in Leeds; when J was diagnosed they put all his stats into the Sloan Kettering nomogram and then added an extra calculation because statistically, Leeds men do worse than those in Birmingham or wherever. I don't think all uros do this in sight of the patient (it is rarely mentioned on here) but Mr P went through it with us at J's first appointment and then included it in the diagnosis / treatment plan letter.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jul 2016 at 03:10

KRO thanks for the insight. It's probably not how I'd choose to spend a Saturday night, but ultimately its the results rather than the test thats bothering me.

Lyn, Thank you for your knowledge, another question though (if you don't mind)

Does a bladder problem (other than an infection) raise the PSA levels.....? A urine infection has been ruled out with recent urine test. Also had blood taken at time (cant remember if that was for kidney or liver function) but the results were "No further action"

Lyn, I was reading back through the thread and you say that blood didn't show up in my urine test, it did. It was only because I noticed it when filling the bottle that I mentioned it to the practice nurse. She then dipped it there and then and said that there was a slight trace of blood but "no infection" . It put a crimp in my day, because I wanted it to be an infection rather than anything else. When I went to the Docs the following day after the "No further action" text message I queried it with the doctor (different doc to the day before) she said that blood had shown up in urine, which Is why I couldn't understand the "No further action" msg.....Surely blood in urine warrants action, even if the lab isnt aware of what the tests are being carried out for? Had I not insisted on seeing the Doc would I be sitting here with everone assuming all was well?

I haven't actually seen any blood since, but thats not to say its there as a trace.....Sorry for waffling....I appreciate you're only a "volunteer" here and have found yourself with the unenviable task of counselling a seeming neurotic, but if you do have the time your insight would be appreciated

Thank you

User

Posted 03 Jul 2016 at 08:19

In the right hands the cystoscopy will be totally pain less and in the wrong hands slightly uncomfortable, I only had cystoscopies post prostate removal to look at scar tissue.

Hope you get to the bottom of your results soon and stop worrying about what ifs, being diagnosed with cancer is a challenge but staying positive does help.

Thanks Chris

User

Posted 03 Jul 2016 at 11:06

There are some awkward UTIs that do not show up in normal tests and are only diagnosed after more specialist testing. Other members have had the all clear from tests done at the GP practice but then been diagnosed with an infection at the hospital.

Sorry - when you said the tests were clear, I assumed there was no blood. Odd of them to see blood and then decide nfa!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jul 2016 at 17:18

Hi Chris, thanks for taking the time to reply....I would love to think that my prob was a kidney stone, but I think that the pain is too far down...plus the hip aches......I realise that I could be convincing myself that the pain is more "painy" than it is (Hysterical pain if you will)..I know that I am currently very tense with all this going on, and awaiting tests etc.

My father and mother both succumbed to the big C and I remember the battery of tests and the hospital appointments....truly a terrible time, times 2.....But I imagine that the Cancer word terrifies everybody....

I know that mestastases are unlikely at under 20 PSA, but I also know that it's not impossible This "knowledge" that I have gleaned can not now be forgotten

Thank you for the reply and the reassurance....I'll keep my fingers crossed....

Good luck in your recovery Tony

Lyn, Thanks again for your patience ..I shall hang on to the possible infection lifeline

I too was surprised about the "NFA" ...had the nurse not dipped the urine at the time and confirmed presence of blood, that may have been overlooked and I may have been sitting indoors none the wiser (some chance) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

User

Posted 04 Jul 2016 at 06:55

Further thoughts on low and high PSA numbers

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Jul 2016 at 07:33

Hi Lyn, It helps greatly "talking" to someone, and you seem to have a lot of "Hard won" knowledge, I don't know if you have a medical background or whether it is just stuff you have learnt to help you and your husband, but you are obviously a pragmatic Yorkshire lass and I do take solace in your postings.......There is a forum in the USA which I have been posting to and lots of good people there, also telling me that advanced PCa with my reading is amazingly rare, but the fact that it can happen is enough to send me into a spin.....You don't know me of course and I paint a picture of myself as a raving neurotic....Up until now I promise you I never have been....Always been very practical....never any hypochondria....Go to the doctors hardly ever...tried not even to take an aspirin unless I had a real banging headache, but this raised PSA test has sent me into a downward spiral.....It's obviously a psychological thing...My dad died of a brain tumour at 65 (when I was 30) and I remember how ghastly that was....and my mum who smoked all her life and refused to give up (always said "when your numbers up it's up") she was diagnosed with multiple myeloma at 70.....she lost the plot as well, she was dead within 3 months...the chemo sent her into a coma (not unheard of apparently, but I think in her mind she just gave up).....Having those 2 things happen has probably left me with a marked sensitivity to the "C" word (but lets be fair who hasn't?)

I am going to look for an osteopath today, so hopefully get my back problem diagnosed one way or another.....It wont hurt to iron me out anyway....I'm as tense as it's possible to be at the moment and still function

and thank you again for taking the time to reply

Tony

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