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Very Enlarged Prostrate But Now Getting Concerned

User
Posted 17 Jun 2019 at 09:07

Hi Guys,

Worried newbie here.

I'm 60 and have had enlarged prostrate for about 8 years. My PSA started at 4.7 but is now 9.8.

My prostrate has been scanned at 100cc last year.

Had negative biopsy & MRI last November with patchy p3 (not sure what that meant) but decision was to watch and wait.

May 2019 woke with terrible back pain. Since then, I have had pains all round the groin region. Back, pelvis, hips, thighs. Never had any pains previously.

I'm convinced something has happened to my prostrate and I have read these pains are the sign of advanced PC.

I've gone back to doctors and he's sent Urology a letter to be referred back to them, but that could take ages.

Looking for any experiences from other sufferers. Has anyone had these pains from enlarged prostrate or do you think it might be APC?

 

User
Posted 17 Jun 2019 at 10:35

Normal prostate size is 30cc, but many men's prostates start growing from age 25 and don't stop, so prostates can be up to 120cc, and that in itself is not a worrying issue (although it can cause difficulty peeing). If we correct your PSA for your large prostate volume, 9.8 becomes 9.8/100*30=2.94 which is just within the top end of normal, but a simple volumetric correction could be misleading (high reading could be due to an area of PCa (prostate cancer) in a prostate which normally produces low PSA), so whilst that reading could be OK, it also might not be OK. Also, you didn't cycle, or do strenuous exercise, or ejaculate, or have a digital rectal exam (DRE) in the couple of days before the PSA test, did you? That will increase the reading.

It's great that you have two PSA readings, but you missed out the crucial but of information - the dates of the readings so the doubling time can be estimated. The doubling time is much more important than the absolute values. If the PSA values are from last November and now, then that's a double time of 7 months, which absolutely should be investigated, and you should push to get that done in the 2 week cancer referral window. Unfortunately, most GP's know very little about prostates and prostate cancer.

The pain is also a flag, but there are many things that will cause such pain. Pain in the prostate is not localised and can feel like it's coming from the whole pelvis. Many people get back pain with age - mine which happened around the time I was diagnosed with PCa turned out to be due to a dehydrated disk, and nothing to do with PCa.

The only thing I can think about the MRI P3 is that it might mean PIRADs 3, which means they can see something on the images, but it's not obviously PCa. (A 4 would be probably PCa, and 5 would be almost certainly PCa, although an MRI alone can't tell for sure.)

Your symptoms would also match a prostate infection or urinary tract infection (UTI), some of which can be detected with a simple urine dip test - did the GP do that?

I presume you had a TRUS (transrectal) biopsy as an out patient procedure (done up the backside). A TRUS can't access the whole prostate, and this is even more the case with a large prostate. It might be that it could access the P3 area (if that's what they meant), but you should probably push the hospital for a transperineal biopsy, as that can access the whole prostate, and is more important for a large prostate, particularly where a TRUS failed to find anything before. A transperineal biopsy is also safer from side effects, but normally requires a general anaesthetic (longer waiting time for theatre slot, etc), although a hand full of hospitals are trialing a version which is done as an outpatient procedure like the TRUS.

So I think you should push your GP for a 2 week cancer referral. That doesn't mean I think it's PCa as other more common issues fitting your symptoms have not been ruled out, but there is a chance.

Also, it's useful for people answering questions if you create a bio in your profile, with dates of tests, results, etc. Then the advice is more accurately tailored to your specific situation.

User
Posted 17 Jun 2019 at 12:34

Hmm, thanks Andy for all your thoughts.

My PSA latest results dates were 8.6 Oct 18, 6.7 Feb 19, 9.8 May 19.

I don't believe the back, hip, pelvis and thigh pain could be unrelated to my prostrate. Not saying it is Advanced PC, but I'm worried obviously that it is. It's the way it flits from one area to another, one day back, then next day hip, then it's the pelvis. I mean can you get these pains from an enlarged prostrate alone. I don't generally have aches and pains at all, but these have been constant through 5 weeks.

MRI scan showed an area of concern and they said it was a Pirad3 as you suggest. What tells you that means it's not PC? I don't understand that part. Could it be that I have prostratitis and that area is the inflammation? I'm clutching a bit I know!

My GP didn't do a urine test this time, but did a few months ago and it was clear.

I will sort out the bio as you suggest.

Thank You

User
Posted 17 Jun 2019 at 14:43

Interesting that your PSA went down between first and second readings. I don't think that raised PSA due to PCa will ever go down (unless you are being treated for it). That implies that at least some of the PSA in the first reading is not due to PCa and there's another cause, but it doesn't mean none of the PSA is due to PCa. However, the increase between the last two is a doubling time of about 6 months in a relatively high reading, and that at least needs investigation to rule out PCa.

I didn't say PIRADS 3 wasn't PCa, I meant that the MRI can't tell either way. Here are the scores from Wikipedia:

  • PI-RADS 1: very low (clinically significant cancer is highly unlikely to be present)
  • PI-RADS 2: low (clinically significant cancer is unlikely to be present)
  • PI-RADS 3: intermediate (the presence of clinically significant cancer is equivocal)
  • PI-RADS 4: high (clinically significant cancer is likely to be present)
  • PI-RADS 5: very high (clinically significant cancer is highly likely to be present)

You certainly could have prostatitis - that's one type of infection that could cause the symptoms.

I don't know what PCa pain feels like - someone who had it will need to comment, although it's another of those things that's different for different people. Even quite extensive bone mets can be completely pain free in some people (I was reading the late Andy Ripley's thread yesterday), and there are loads of causes of pain which are nothing to do with PCa. A collapsed disk trapping nerves would fit your symptoms as far as you've described them.

Whilst there are a number of non PCa explanations for your symptoms, nothing you've said rules out PCa either. With the PIRADS 3 in the past and rising PSA, in my view it merits a 2 week urgent referral from your GP to urology.

User
Posted 17 Jun 2019 at 16:38

Hmm, thanks again. I can't get to see doctor until next week, but I am going to ask for a 2 week referral considering my history.

Im not sure why he didn't anyway?

I will update when I get news.

 

User
Posted 19 Jun 2019 at 15:38

Originally Posted by: Online Community Member

  • PI-RADS 1: very low (clinically significant cancer is highly unlikely to be present)
  • PI-RADS 2: low (clinically significant cancer is unlikely to be present)
  • PI-RADS 3: intermediate (the presence of clinically significant cancer is equivocal)
  • PI-RADS 4: high (clinically significant cancer is likely to be present)
  • PI-RADS 5: very high (clinically significant cancer is highly likely to be present)

I learned something else about PI-RADS today from a radiologist. The number is also the radiologist's estimate of the highest gleason score they expect a biopsy to find, so if the biopsy doesn't find that, it's a hint the biopsy may have missed the highest scoring part of the cancer.

Also learned that the NHS is moving away from PI-RADS to another scale.

 

 
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