Prostate Problem, could this be sinister?
Posted , 8 users are following.
Hi all, I'm a newbie here and I'm hoping that you fellow prostate sufferers can give me some guidance....I'll try and keep it short but there's a bit of background so forgive me. I'm 58 and first got my PSA checked out in 2006 when I was 48 and having some urinary problems....always having to look for toilets when out etc. PSA was 1.2 and I was told that this was OK.....symptoms never really went away but I learned to live with them. Fast forward 8 years to 2014 (age 56) and I'm now getting up regularly in the night....Go to Docs again...this time PSA 3.1.....Doc wants to refer me to hospital and I freaked a bit (probably stupidly....typical man burying my head in the sand)....Cut off for my age is 3.0 so I ask doc if I can agree to get tested every 6 months....she agrees....Have 3 more tests every one is 3.1...get complacent and leave it for 14 months...start to get a bit of regular backache so freak a bit and so get tested in June this year....surgery rings up following day and leaves a message on answerphone...please contact them (Uh Oh)...Its a Friday and by the time I see the message the surgery is closed....Sweat it out over the weekend....Monday staright on the phone....PSA is 7.5 (S**T)....Doc does a blood and urine test to rule out infection....Tests come back neg.....Now fast tracked to hospital referral (I was hoping they'd do the test again in case of error)...Whilst waiting as a control freak and obsessive I read up as much as I can on PC and come across prostatitis too....Just to gain back some control I read about free PSA and ring round to get a test....Find a clinic near Harley St....They'll do it but I also have to have a consultation with a urologist....(whatever it takes as I'm worried sicke by now)....Go to the west end to get my blood taken and then another trip the following day to consult with a very well known (if you mix in those circles, prof of urology).....Get my results from the nurse and in the intervening 2 weeks my PSA has dropped from 7.5 to 4.3 (different lab but even so)....Free PSA is 23%...The urologist spends 30 minutes with me.....then on my side....DRE and is pleased to tell me that I have a large prostate...hence the raised PSA and that in his opinion completely benign. I asked are you sure? His reply "don't worry I've felt thousands of prostates there is NO cancer".....I skipped out of there.
Happy ending you'd think? Sadly it doesn't end there.....Get home to find I have 2 appointments with the hospital, one for a cystoscopy and one for a CT urogram (the paranoid mind takes over...what do they know)?....My wife makes me go ....Doctor doing the cystoscopy is rather brusque...try to explain about my PSA dropping he could care less....On the table trousers down....camera up the winkle.....5 minutes later he tell me "well you don't have bladder cancer"!!! WTF! I didn't think I did....fills out some paperwork says see the nurse and out the door.....The nurse reads the notes and says you need to go and book an MRI ! Jesus this is getting serious.....Go to book the MRI and when I go back to see the nurse she informs me that she has booked me for a biopsy...(I'm now really concerned)....Anyhow 2 weeks later I have had a cystoscopy (all tests clear) a CT Urogram (results go to consultant) I've had the MRI.....But after reading "Invasion of the prostate snatchers" a great book I'd recommend for anyone with PCa or suspected PCa the authors talk about the ability of the 3T tesla MRI to pick up any "important" cancer in the prostate....with that in mind I ring my consultants secretary (I haven't met my consultant yet by the way) and explain my position regarding the lower PSA reading and 23% free PSA and ask if I can cancel the biopsy and see what the MRI throws up.....She rings back yesterday and says he agrees.....Now I'm thinking have I done the right thing.....Suppose I go for my meeting with him in a few weeks and he says we've seen something but because you were needle shy we don't know what it is....So more waiting and sweating and my bum still gets the needles......I'm really hoping that the PSA was raised by prostatitis and thats whats causing my current symptoms: ie lower back pain that moves around a bit....sometimes some groin pain, sometimes this is referred to the testicles, and sometimes a griping pain in the lower tummy.....Does this sound like prostatitis? Anyone who can help me with the symptoms or answer any of my other concerns I'd be really obliged, as I'm really sweating now
Sorry I've written a small novel, so if you stuck with it Well Done!
0 likes, 35 replies
craig84609 tony96045
Posted
Well you have to take a deep breath and try to relax. I have pain down there and problems urinating and I refuse to have a PSA test due to it's terrible accuracy. It can only tell you that your prostate is enlarged, but hey we know that already as we are having trouble urinating. I wouldn't have a biopsy done unless they were so sure I had cancer that they were about 99.9% sure. Biopsies can be dangerous so I just wouldn't unless it was needed. I would get the 3T MRI and that should find it if you have it. I have CPPS and it mimics PC, so I have to be careful that I don't miss a warning sign, but I am not concerned. It is funny how a simple blood test can cause one so much stress. That is another reason I will not have a PSA. My doctor told me that I had to and I said since when is it a law that I have to have a PSA. He then back peddaled and said well you don't have to but you should. Ok, but I chose not to. An enlarged prostate will cause a high PSA with no cancer present. You have to do what you believe is the right thing to do for yourself. You don't have to do anything, but it is difficult when you have pain and trouble passing urine. One morning I got out of bed to urinate and to my surprise nothing came out for the longest time. I was really scared, but I did go. I started taking cranberry pills and that helped me a lot. I am 47 and have had these problems for about 5 years and I would be very surprised if I had PC. What you are going through is so common and there are meds they can give you to help. Try not to get upset as it makes things worse. You will see that you will be fine. I hope you feel better soon.
tony96045 craig84609
Posted
Hi Craig, You're a braver man than I, I know that the PSA test is not ideal but over time it can pinpoint a problem with the prostate, some doctors liken it to the "check engine" light on the dashboard.....you dont know what the problem is but you know there is some problem.....now I know about the PSA and PCa I just couldn't choose to not get it checked out.....My PSA has been constant for the last 2 years but this jump and now the battery of tests has got me freaking out...I've had a 3t MRI, which is why I swerved the biopsy that was pencilled in....Just hoping that when I go for the results everything is OK and I've dodged the bullet
Cranberry tablets/juice sounds like a good idea I'll give it a go.....Lots of luck for the future and thanks for taking the time to reply
Tony
barney34567 tony96045
Posted
The key is not the strength of the MRI magnet, but the experience of the radiologist interpreting the images. You want someone ideally who interpets prostate biopsies full time and not a general urological radiologist.
an experienced radiologist would conclude if the images are suspicious For PCa.
craig84609 tony96045
Posted
Are you waiting on the results for the MRI? This should show something if there is PC. That is what I would do. I choose not to have the PSA due to the stress it would cause me, because I know it will be high. I have trouble urinating a lot, but I also know that it is caused by Prostatitis or CPPS. PC doesn't run in my family, so I am low risk. If I noticed blood or other unusual things I would get it checked out. In fact I was a the urologist a few months ago getting it felt and she said nothing about feeling odd, so probably ok. Now BPH also is a problem for the men in my family so I could be getting that as well, but for now I have been able to keep it at bay with cranberry. I hope you get good news from the 3T, then you will be able to relax.
tony96045 barney34567
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Hi Barney, I've had the 3T MRI last week, which is why I cancelled the biopsy....Just got to hope that the guy/girl reading the results hasn't just started in the job
Thanks for the reply
tony96045 craig84609
Posted
Hi Craig, I've had the MRI and am now awaiting the results...You state that you are a prostatitis CPPS sufferer, I wonder if you could have a look at my symptoms in my original post and confirm if they tally with what you suffer.
Thanks again Tony
craig84609 tony96045
Posted
Yea, well barring the PSA test I have pain like what you have. I get rectal pain that is caused by a spasm and pain that travels through the groin. Also have pain in my back. Usually PC doesn't cause a lot of pain until it's advanced. If you have a lot of pain it can be prostatitis, even when there is no bacteria present in the semen. It can also be caused by fungus and they never test for it. I have had trouble for many years on and off so my Uro thinks that it is CPPS or Prostatitis that is caused by some unknown bacteria or fungus. I guess the main thing here is it doesn't have to be cancer when you experience pain down there. Hopefully the MRI won't show anything. If so you may have CPPS or prostatitis. As far a I know both of these can cause a raise in PSA.
tony96045 craig84609
Posted
Craig, Many thanks.....I have never suffered these symptoms before.....only came on one day before I had the original PSA test.....had it been the other way round my PSA may not have been raised, and I would have saved myself a lot of worrying.....Really hoping that it is CPPS/Prostatitis......also get a pain in the tummy that feels a bit like appendicitis (if you've ever had that....Thanks for replying
Tony
stewarta tony96045
Posted
I don't want to alarm you but I have had similar. I'll keep the story as brief as I can. PSA was 2.4 to 3.5 over 10 years of monitoring up to my current age of 69. Various DREs with GP and urologist gave the result of a mildly enlarged prostate, but no PCa indicated. In preparation for a PAE, I had a 3T MRI which showed a suspicious PCa region of the left lobe of prostate - T2 PI-RADS 4 A1-4 B4 C+ lesion.
The following tests resulted (results in brackets):
MRI guided biopsy (Gleason 8) >> Cystoscopy and lithoplaxy (removed bladder stone) >> Full body scan and pelvic CT scan (clear of cancer in bones).
Researched options separately with two urologists, and two radiologists:
* Radiology (Photon and Proton Beam Therapy), including Brachytherapy;
* Full open prostatectomy;
* Robot-assisted Laparoscopic Radical Prostatectomy
Chose robot-assisted prostatectomy. Operation on a Thursday evening, up walking in hospital on Friday; home midday Saturday. No meds needed. Lymph nodes sampled and tested which showed no metastasis, but Gleason sore on removed prostate was 9.
Experienced minimal incontinence, and now four months later virtually none (pelvic exercises helped). No pain at any stage. PSA now zero after first test. Hopefully stays this way on follow-up PSA tests.
Symptoms: LIFE
tony96045 stewarta
Posted
Tony
stewarta tony96045
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Tony: PSA is meaningless as there are too many false negatives and positives. You would have say that mine was a false negative given the Gleason score involved.
Good outcomes with yours.
The trend line can be indicative, but that's about it.
Stewart
barney34567 stewarta
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Good to hear you're doing well. May I ask when is the first PSA test post op? And how often should they be done post op?
How long did it take from getting home on the Saturday until you could go out independently?
stewarta barney34567
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No lifting of even a shopping bag for 6-8 weeks. Alcohol stimulates the bladder more than it used to, so in the main I drink red wine with meals in the day.
barney34567 stewarta
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barney34567 stewarta
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mark_fastco stewarta
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