Advice Please from a worried newbie

Hi, I hope that you knowledgeable guys can help out this extremely worried guy.....

A little about myself, Live in the UK and am 58 years of age no other health probs (as far as I know)

10 years ago when I was 48 went to the doctors because of frequent urination needing to find a toilet when I was out more often than usual etc. Doc did a DRE which she thought was normal and had the blood taken by the nurse.....May have been blood first then DRE cannot remember. Phoned for results and told results fine nothing to worry about (I have now found out that the PSA was 1.2.) Fast forward 8 years to 2014 when I go to the doctors again with similar problem as I was getting up maybe twice a night to go to the toilet. This time DRE (nothing unusual found) and a blood test the following day. Doc called me in a couple of days later and said that my PSA was 3.3 and because here in Britain the cutoff for my age group was 3 she recommended a trip to the hospital. I freaked a bit and said could I think a bit as I was only just over the line.....Went home and did some research and found that DRE first before the blood etc etc plus I had ridden my bike the day before. Went back to Doc to explain she agreed to another PSA, this time 3.1. She saw my reticence about going to the hospital (maybe big mistake) and agreed that it was possible that I had a higher than usual baseline, so we would do a PSA test every 6 months.
Two subsequent tests both stayed at 3.1 and I think (know) I got a bit complacent and waited 14 months before going back, and then because I was having a bit of lower back pain. Then last week 1 day before the arranged PSA test I woke up very early with a very painful lower abdomen pain which proceeded through the day to refer itself to the testicles (felt as though I'd just been kicked in the balls)....this lasted all day but was better the following day. Following day had the Blood test (No DRE) and walked out whistling. Got home Friday evening to an answerphone message to ring the doctors surgery. It was at this point that I started to get a bit panicky as the onus is nearly always on the patient to phone the surgery not vice versa, plus the test was only the previous day, so I had visions of alarm bells and klaxons going off at the lab. (never a good idea to be a pessimist). So I spent a terrible weekend (Docs closed all weekend) Plenty of Internet research (probably not a good idea...) fighting all kinds of imaginary monsters. Rang Monday and got a late afternoon appointment, Was pretty much expecting the worst when I walked in. Doctor said that my PSA had gone up to 7.5 (I was a tad relieved as I was imagining double or even treble figures). He did a DRE and said that the prostate felt slightly enlarged but felt "normal" arranged a urine test and some more blood for Kidney function etc. I walked out of there feeling a great weight had been lifted as I know that a UTI which I have the symptons of (Groin, lower abdomen and lower back pain) was also in the docs mind. This morning (Tuesday) was urinating into the little bottle and just held the end of my penis to cut off the flow and noticed a little drop of blood (great I thought this all points to an infection) went to see the nurse who took my blood, told her about the blood in the urine and she then put her little dipstick in and said that there was no sign of infection but there was some leucocyte activity.....I have now started worrying again because if it isn't an infection then all those symptoms could be advanced PCa. I know it could be prostatitis but I'm really worrying now....The lab results wont be back till Thursday/Friday....I know I'm jumping the gun and I do apologise up front for being a bit of a "cry-baby" (especially when I read about what some of you guys have gone through) but I just would like some advice.....With an infection/prostatitis where exactly is the back pain as I seem to feel it in the hip bones at the back, and do you think that a PSA reading of 7.5 could be advanced stage I know you guys don't have a crystal ball but from what I read you do seem to possess a lot of hard won knowledge.....Many thanks in advance and sorry for the long winded post
Tony

Post Edited (tonyqueue) : 6/28/2016 10:22:40 PM (GMT-6)

Hi Tony and welcome to HW. I hope you will just be passing by and that your PSA test comes back lower. You might end up at urologist for a biopsy, which will mean another agonizing wait for results. From what I've seen it would be rare to have mets with pain at a PSA of 7. But it is higher than it ought to be so it's good you're on top of it. Try not to worry too much. It's more likely not PCa at all, much less metastatic.
Beth

You seem to have done a lot of research. As you know, prostatitis often presents with urinary complications and pain whereas PCa usually doesn't. And a quickly rising PSA is a common trait of prostatitis. It is not at all unusual for no bacteria to get cultured when there is prostatitis. Sometimes it responds to antibiotics, sometimes it doesn't. It often causes an elevated neutrophil count. So you can talk to your urologist about trying a 10-day course of Cipro and retesting. It's not definitive, if the PSA does not go down, but it is diagnostic if the PSA does go down. Did anyone do an ultrasound to see how big your prostate is? And were you diagnosed for urinary retention, which can also cause elevated PSA?

There's also a blood test called Prostate Health Index (PHI), which is available in the UK. It's somewhat better than PSA alone (it includes PSA and % free PSA) because it is less affected by prostatitis.

If you decide to go ahead with a biopsy, be sure to ask for a nerve block (periprostatic or pelvic plexus) and take precautions against antibiotic-resistant infections if you've taken multiple doses of antibiotics before.

- Allen

Tony, just a quick note to welcome you to our club, and I hope that you're one of the pass-throughs, and this turns out to be a minimal issue for you.

That being said, yes, the next step is to see a Uro and get some more definitive testing. A standard TRUS biopsy is an unpleasant experience, but not the worst thing ever. (get used to having your backside violated). Once those results are in, you'll know what you're dealing with. I note you already understand that PSA is not a cancer test, it is more like the 'check engine' light on your car. It tells you that something is going on down there that needs further investigation.

Hello Tonyqueue,

Glad you found us here, from your home in the United Kingdom !

You're doing your research --- you're taking proactive, positive steps in terms of your health --- you've got your eyes wide open --- you are not "sticking your head in the sand like an ostrich" --- and you ARE facing forward.

With that being said, and to put your mind at ease --- yes, seeking the expertise of a urologist would be a wise step. You've got some questions and anxieties about your PSA --- and a urologist has the knowledge and background to assess where you are at in terms of possible infections or the possible need for a biopsy. Making an appointment with a urologist was truly my "first step" in assessing where I was at with my health, and what my situation truly involved ... in my case, an abnormal PSA test, followed by an abnormal prostate exam, led to the need for a biopsy ... we needed to get down to the heart of the matter, and all of this was done under the care of my original urologist.

Right now, I know exactly where you are at ... the "waiting and worrying" stage while waiting for test results and possible follow-up exams ... let me guess ... racing thoughts ... incessant anxiety and worry ... restless nights with interrupted sleep ? Yes, we've all lived that ... so we know right where you are at in this.

For right now, may I give you some brother-to-brother advice ? Keep your mind focused on your usual routines --- keep up with your work, hobbies, interests, and activities. Best advice I've got to give you ... there is NO substitute for going for a WALK or an exercise work-out session will help you deal with your anxieties and worries right now ... going for a walk will give you a chance to soul-search and work out some of your stress right now. Give it a try ... do whatever it takes right now to STAY ACTIVE and KEEP BUSY while waiting for test results or future medical appointments.

American rocker Tom Petty had a hit song some years ago with song lyrics that stated, "The waiting ... is the hardest part." True words !

Meanwhile, Tonyqueue --- you've found a loyal BAND OF BROTHERS here --- no matter what. We're here to help you, guide you, support you, advise you ... whether you simply have a case of prostate infection, prostate enlargement, or a possible diagnosis of prostate cancer.

No matter what --- we all look after each other here --- we've got loyal brothers here from every corner of the United States, with valued members from other countries and continents --- and we welcome you here, from your home located "across the pond" in the United Kingdom.

No matter your story, no matter your outcome --- we all consider ourselves BATTLE BROTHERS and we strive to leave no comrade behind on this battlefield ...

We understand the worrisome thoughts that you are experiencing right now ... the wondering, the worrying, the endless WAITING ...

Meanwhile, I just wanted to reach out with a message of SUPPORT and ENCOURAGEMENT to you --- we're right here --- keep us posted --- and rely on your doctors and their expertise, looking ahead.

A handshake from across the miles, from here in the Midwestern United States,
Iowa State University ~ CYCLONE FAN

Hey Tony,

All the internet research in the world won't tell you what you need to know, so take a deep breath and go see the urologist. Whatever you find out you'll probably be fine.

I'm not a doctor, but your symptoms sound a lot more like prostatitis than Pca. I've got a Gleason 7 cancer and never felt a thing (until the uro got hold of me). It's extremely unlikely that cancer is causing your symptoms. Even if it is Pca the chances are excellent that it will be very treatable.

See the doc. Deal with it, whatever it is. You're going to be fine.

Best,

Jonathan

Hi Jonathan, thanks for taking the time to reply. I realise that the research is just my way of "controlling" something that I have no control over. The thing is I was offered referral to a urologist 2 years ago and I chickened out.....thinking that 3.1 was fine.....when I look on this board and see some of the guys who are here with numbers far lower I shudder. If and when I come out the other side of this I am going to become an evangelist to every guy I know re early testing.
I was reading an article earlier on regarding psa doubling and prognosis and I Just burst into tears.....maybe it is time to stop researching .....my poor wife is having to be the strong one at the moment and it's not fair.....as I've written ad nauseum it's the back pain and lower abdomen pain that's freaking me out, guess I'm just going to have to "grow a pair"
I've now been referred to a urologist at one of two hospitals near me...was doing some research earlier and both hospitals share the same consultants.....one guy who does all the prostatectomies is from Ireland butwas 2 years at the Sloan Kettering.....He's my guy (if it gets that far which I pray God it doesn't)
I hope you are right about my prognosis and that I'm just catastrophising the situation
I sincerely hope your recovery is going well and thanks again for the support. Tony

Post Edited (tonyqueue) : 6/30/2016 11:23:09 AM (GMT-6)

tonyqueue said...
Hi Newton, Sadly a uti has already been ruled out and there was a kidney function test done too, which I guess would have found any stones.....I'm hoping for chronic prostatitis as that's my last resort....I suppose there may be other causes of a spike in PSA but I haven't been able to find them.....I don't think that BPH would give a reading of 7.5......
Thanks for taking the time to reply
Tony

Actually a PSA of 7.5 could be within a "range of normal" depending on the size of your prostate gland, which is probably why TA asked if any of your tests had measured the size of your prostate gland. There's a ratio involved here. BPH seems possible given you are waking a few times overnight to urinate, so let's try and stay positive until the results come back - difficult I know - easier said than done. As others have said, keep on living your daily life intentionally in the interim, and regardless of what the test results indicate, we are all here for you to help in every possible way. Cheers!

tonyqueue said...
Hitchhiker thanks for your reply, The GP who did my DRE this week said the prostate felt enlarged but "normal" but as I understand it only about 25% can be felt....plus although the GP that did it is a pretty senior Doc and graduated from Guys Hospital in 1976 (Guys hospital is a major london teaching hospital for you guys across the pond) I'm afraid that where my mind is at at the minute, even the worlds top urologist with the best reach wouldn't be circumventing my worries at the moment...Until I get to see the Uro (hopefully in the next 2 weeks) I'll be none the wiser....It's the rapid psa spike and the back pain that I may have mentioned before that's playing mind games with me.....Reading your "CV" and I am a newbie here to all the acronyms and code, do I gather that you still have your prostate?
I guess that's what the consensus would be here as its low grade, just don't think I could do it....
Good luck with your healing and thanks for your support
Tony

Tony, believe me we all understand the anxiety issues related to any possible PCa Dx. Yes, I still have my prostate, it has been completely irradiated is all - or as we affectionately say here sometimes - it's fully baked.