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Biopsy blank but URO says he is sure I have PC

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Posted 2/1/2010 10:44 PM (GMT 0)

I am a new member. Aged 68 PSA 7.5. My PSA score has doubled in the last 3 years. I have had 2 biopsies both blank. My URO says he is sure I have PC because my father died at 64 of PC and my PSA results. He now wants to do a TURP but I have no urine flow problems. I have been told that TURP is never used for diagnostic purposes and has bad potential after effects. I have refused the TURP but I need postive biopsy results to get treatment for PC. What do I do now?

Posted 2/1/2010 11:17 PM (GMT 0)
I think you need to research Color Doppler. Look up John T's post about this. He had multiple negative biopsies because of the location of his PC. There are several places in the US where you can get this.

I would also start looking for a different URO. Do you have any major cancer centers nearby that you can go to like Johns Hopkins, or Cleaveland Cinic ?

Sounds like yiu already have a better understanding than he does.

Good luck. You have definitely come to the right place.
Posted 2/1/2010 11:30 PM (GMT 0)
Thanks. I should have mentioned that I am in the UK.

I have asked my GP to refer me to another URO but he insists that I do this through my URO. My URO is being evasive because I have refused TURP.

I guess I will have make a direct approach to another URO

Trog

Posted 2/1/2010 11:32 PM (GMT 0)
Is color doppler in the UK ?
Posted 2/1/2010 11:47 PM (GMT 0)
Although your uro is being vigilent I wonder what causes him to be so convinced you have PCa. I am assuming he has felt nothing with the DRE. I hope he has eliminated, as well as he can, the possibility of an infection being the cause of doubling of PSA. What was the percentage of free PSA and perhaps the newer PCA3 test may be of help. As "goodflife" has suggested keep an eye out for "John T's" input. Transition zone tumours can be revealed by the "rebore" but I don't know about using it as a purely diagnostic tool.
Bill
Posted 2/2/2010 8:47 AM (GMT 0)
The only reasons the uro has given are family history and PSA. DRE shows slightly enlarged prostate which has become a bit nodular after the biopsies. Here they don't distinguish between free and bound PSA.

I am trying to get another uro

Trog

Posted 2/2/2010 8:51 AM (GMT 0)
I haven't heard of color doppler.

I will look into it -thanks

Trog

Posted 2/2/2010 11:12 AM (GMT 0)
Hello Trog,

I too live in the UK.  You can see my experience so far with PCa at the Yananow website - http://www.yananow.net/Experiences.html#hifu (HIFU / Jeremy Bacon).

I don't know whether colour doppler is available yet in the UK but you might consider a template guided biopsy, possibly preceded by a high quality MRI scan.  A template guided biopsy involves taking multiple cores using a grid system to try and ensure that as much as possible of the prostate tissue is sampled.  It won't give you a 100% guarantee that you have / don't have PCa, but it's way better better than the standard NHS TRUS biopsy. 

I had a scan, template guided biopsy, and HIFU treatmant with Mark Emberton at UCH, London (http://www.prostatemapping.com/), but template guided biopsy facilities are available elsewhere in the UK.

If you would like to communicate directly you can get in touch via the Yananow website.

Cheers,

Jeremy

 

Posted 2/2/2010 11:17 AM (GMT 0)
Trog,
If you see a new Uro I would push for a new PSA test that included the free PSA percentage...................if they can do a PSA then they can easily break the test down to bound and free. Free PSa above 25% is an indicator that an otherwise elevated PSA is likely due to benign prostate conditions while those with PCa will have free PSA below 15%. Get below 7% free PSA and PCa is the likely cause. A rough guide to PSA level due solely to a benign condition (BPH) can be estimated by multiplying the prostate volume by 0.066. Generally a prostate volume of 115cc would give 7.5ng/mL if due solely to benign causes. I don't know that I would bet that the nodules are solely a result of biopsy needles. Colour doplar (according to John T) in the right hands is a good indicator of exactly where to biopsy. There is a bit of reading here:
www.ncbi.nlm.nih.gov/pmc/articles/PMC1665315/
Bill
Posted 2/2/2010 3:10 PM (GMT 0)
Thanks Jeremy for your reply. You should recieve my email soon

Thanks Bill: colour Doppler is not available in the UK. I have been told by a local expert that it has been rejected because the vascularisation of prostate tumours is not so different from the surrounding tissues and this leads to too many false positives. I think the implication that false positives are not such a bad thing in a commercially driven health service (i.e. not so bad for the uros) I am not sure what the situation is in mainland Europe

Trog

Posted 2/2/2010 3:46 PM (GMT 0)
Trog,

It took 3 biopsies spread over 18 months to find my PC. It was on the 2nd one, that it came up blank, but the dr. saw some suspicious shadows on the scan. Could this be the case for your doctor too. Mine insisted on a 3rd biopsy only 6 weeks later, I faught the idea and told him lets wait another year and try again. He insisted to give him the chance, I consented. On the 3rd biopsy, he only took 7 cores, and they were all in the "shadows" he had seen previous. All 7 cores came up positive for PC, all gleason 7 (4+3) and most high in % of cancer. Could this be the case, that your dr. sees something that he didn't tell you?

If I had listend to myself and waited, my already agressive cancer would have been much worse a year later. I am glad I listened to my doctor and trusted his years of experience. Just an idea.

David in South Carolina
Posted 2/2/2010 3:47 PM (GMT 0)
Not sure how the system works over there, but a google search showed Centre for Medical Imaging, University College London, London, UK as doing color doppler. I would e-mail John T, whose e-mail you can find on his profile page and ask him about it.
Posted 2/2/2010 4:31 PM (GMT 0)
"Goodlife" my information is that they use doppler imaging for cardiology but not for prostate.

UCL (incidentally it is where I was born) uses Trans- perineal template guided prostate biopsy prior to HIFU. This is what I want done.

"David" I too was recommeded to have an immediate re-biopsy after my first (12 cores) was blank. I refused. My PSA when up by 50% in the next 6 months and I kicked myself for refusing. My second biopsy (16 cores) was also blank

I am currently awaiting to get on the list for mult-layed MRI scanning. This is alleged to have a 95% success rate for detecting tumours.

Armed with this information I hope to persuade the NHS to fund HIFU treatment

Trog

Posted 2/2/2010 5:12 PM (GMT 0)
Trog, my first two biopsies were both 12 core, and both blank, the 3rd as I mentioned was 7, and they all hit pay dirt. I hope you don't have PC, and hope you never need to do the HIFU treatment. As you probably know, that treatment method is still not approved for use in the US at this time.

Its funny and odd to me, medical standards and approvals. The new pain med my dr. put me on late yesterday, in the US, you have to have a prescription - and I take it at home of course, the same med, in your UK - can only be administered if I were in a hospital bed, and then I read, that anywhere in South and Latin America - same med is sold over the counter with no prescription needed. Just find that odd and confusing, who is right, who is wrong? I just do what my doctor tells me to do, lol.
Posted 2/2/2010 5:34 PM (GMT 0)
HIFU is not yet fully approved here. I am hoping to part of the NHS trials

It still seems like the best option for me

I have just had a phone call from the clinic as the first stage to book me in for the MRI scans (in Harley Street!!!) I hope I can afford it.

I am looking at it this way: if I don't have it done I won't be able to spend it anyway

Trog

Posted 2/2/2010 10:10 PM (GMT 0)
If color doppler is not available then I would look into MRIS with a 3 Telsa MRI or a transperinial 3 D mapping biopsy. A Turp is not a good idea as once you have a TURP it would exclude any form of radiation as a treatment option.
JT
Posted 2/2/2010 11:19 PM (GMT 0)
Thanks John T. Your extraordinary medical history knocks mine into a very minor league.

Yesterday I rang my URO to cancel the TURP. I am now awaiting confirmation of an appointment to have a multilevel MRI scan.

If Ca found I hope to procede with HIFU after template guided transperineal biopsy

I think that you have confirmed that I am on the right path

Thanks again

Trog

 

Posted 3/30/2010 10:30 AM (GMT 0)
I have no medical insurance so paid for a multilevel MRI scan in Harley St. They sent a report showing a probable cancer in the peripherl zone.
My local uro dismissed the MRI resultd as not relevant and again offered TURP as the only option. If MRI is correct TURP will be negative. I am not willing to risk the potential side effects of this procedure for yet another negative result.
I have managed to get on the NHS HIFU trial and will have the op late May. I will report back
Trog
Posted 3/30/2010 11:29 AM (GMT 0)
Trog,

I have never heard of getting treatment for PCa without having a definite confirmation of PCa, along with a definite location of the tumour. Without a confirmed biopsy, there is no Gleason rating. Seems to me like trying to shoot a monster in total darkness. With that, I'm surprised that you were accepted in the HIFU trial without getting another biopsy honed in on that "peripheal area." Nevertheless, I will say that treating PCa is not a perfect science and I wish you the best.

Posted 3/30/2010 12:57 PM (GMT 0)
JoeyG: you are right about not having treatment without confirmation of Ca.

My uro cannot offer a targetted biopsy and TURP is all he offers which is bound to be negative.

A transperineal template biopsy will be carried out prior to the HIFU treatment.

Of course there will be no HIFU without positive diagnosis of CA.

Trog

Posted 3/30/2010 1:31 PM (GMT 0)
Trog good call fire the current uro-doc it doesn't pass the smell test. John T got a similar journey that was rectified by seeing a real PCa doc, a leading PCa oncologist (Dr. Scholz I believe it was). He said similar I know you have PCa and lead to prove it to John, whereby the other so called expert uro-docs all got it wrong...this is more common than some people know of, John's is not a rare-rare case. Is their a really decent PCa type oncologist in UK, even if you have to go elsewhere and pay $100's of euro or dollars...to get it right is worth???????????? Go shopping asap(even if you leave the country), is my advice. Opinion(s) only work to your benefit, forget about the costs.
Posted 3/30/2010 1:40 PM (GMT 0)
Trog

Sorry your situation has bveen so unclear for you.
I've not heard of anyone being treated for any cancer on the basis that a consultant thinks a patient has got cancer , though can understand that he thinks that cancer might be the reason your PSA is raised.

Remember that having a biopsy will make your PSA shoot up as it really "annoys" your prostate to stick all those needles in it. Even a DRE, ejacualting and riding a bike/horse just before a blood test can make your PSA go up.
For instance my PSA was 8.6 before my biopsy and 13.6 just after it (Having been diagnosed at that point I then changed hospitals and uros and that second uro threw out that 13.6 that the first uro had done as being of no use for diagnosis purposes as had been taken so soon after a biopsy.)

Good luck with what you have arranged

Alfred
ps My sister trained at UCH so hope it will be that place that helps you (I'm a Brit that lives in Holland.)
Posted 3/30/2010 2:16 PM (GMT 0)
English Alf & zufus

All my PSAs are pre-biopsy.

In the UK we now have the right to chose where we get treatment. The problem is that it is difficult to find out the track record of the UROs. Hospitals are scored by their overall performance.

The 2 hospitals that offer HIFU have the best UROs. One of those is Mark Emberton at UCLH where I was born and where Alf's sister trained)

Trog

Posted 5/24/2010 4:31 PM (GMT 0)
Finally got my template biopsy on 21st May 2010.

I was up and walking normally a few hours after the op.

Urine still a bit bloody but that is normal

I now await the results - it will take 2 weeks

Trog

Posted 5/24/2010 7:35 PM (GMT 0)
Trog: goodluck on your biopsy results.
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