Re: PSA & percentages

[Guest guest]

,

I am not

saying that there is no value in using PSA results in the diagnostic process.

There surely is, as your case demonstrates only too clearly. I was trying to

draw attention to the fact that there are sever limitations in using PSA

results SOLELY for diagnosis. As we have said so often on Lists, sites etc, it

is the series of PSA tests that is the important thing in most cases, not the

isolated individual reading that may be marginally above the line drawn in the

sand.

But even

then we have to take into account the anomalies of the PSA results themselves.

Take the question of free PSA in my case. Normally if the fPSA count is greater

than 25% there is only a small chance of the tPSA count being   due to PCa. The higher the fPSA, the less

the chance is that cancer is involved. Yet my fPSA has been well over 30% for

some years now – and is over 40% now. But I have prostate cancer – my TURP

(Transurethral Resection of the Prostate) in June demonstrated that beyond

doubt. I believe it is the dormant form that does not require immediate

treatment because there have not been what I would regard as significant changes

in my PSA since diagnosis – my overall estimated doubling time is over 12

years. But in saying that I am fully aware that the only rule about PCa is that

there are no rules.

As you

say, you were fortunate that your medical advisors followed up and persisted

even though your two initial biopsy results were negative. Again, biopsy is a

hit and miss affair. The way that PCa tumours grow in their early stages make

it difficult to ‘hit’ what is a pretty small target.

All the best

Terry Herbert

in sunny Kalk

Bay, South Africa

Diagnosed ‘96:

Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Sep

'04 PSA 7.45 fPSA 42%

My site is at

www.prostatecancerwatchfulwaiting.co.za

It is a tragedy of the world that no one knows what he

doesn’t know, and the less a man knows, the more sure he is that he knows

everything.   Joyce Carey

-----Original

Message-----

From: ROGER SHAW

Sent: 14 November 2004 09:16

To:

ProstateCancerSupport

Subject:

PSA & percentages

I found

your figures interesting Terry. However, there can be yet another aspect &

this is the number of men with raised PSAs whose biopsies are negative in spite

of the fact that they have ca. In my case I was found to have a PSA of 74, no

symptoms except for a slightly reduced urine flow. GP got me seen within a few

days. Urologist undertook blind biopsy. " Clear of Ca " . Six months

later & PSA was 125. Urologist did a TURP " so as to have more

tissue for examination, probably an infection " . Once again " clear of

ca " . Six months later & with PSA still rising I had an ultrasound

guided biopsy (which I now know I should have had in the first place!). Two

tumours 2mm & 11mm with local spread beyond the prostate. As if my case

isn't bad enough, I know of two other men who were told, following biopsy, that

they had nothing to worry about. One is now dead & the other very ill.

Neither were followed up & both presented later with mets., at least I had

regular PSAs - thanks to my GP. It makes me wonder if this small sample of

three, me & the two others, is unique or unusual or if a great number of

prostate cancers are missed by urologists not following the guidelines.

The

other issue arising from this is the fact that so many men know so little about

prostate cancer until they are diagnosed & start to read up etc. The

regular posts on this group helping men & their carers to find out &

consider options is I believe very valuable, but sometimes it is still too late

if the diagnosis is wrong. I have an aggressive tumour & I lost a year of

possible treatment. However, three years on & I am still alive &

kicking.

[Guest guest]

Terry,

I take what you say. My only concern is that malignancy may be missed by biopsies if not guided by ultrasound. Today, by chance, I heard of another case. That makes four that I know of & all with different surgeons. My PSA is now close to 200 but bone & CT scans last week showed no mets.

Best wishes to you & the group,

RE: PSA & percentages

,

I am not saying that there is no value in using PSA results in the diagnostic process. There surely is, as your case demonstrates only too clearly. I was trying to draw attention to the fact that there are sever limitations in using PSA results SOLELY for diagnosis. As we have said so often on Lists, sites etc, it is the series of PSA tests that is the important thing in most cases, not the isolated individual reading that may be marginally above the line drawn in the sand.

But even then we have to take into account the anomalies of the PSA results themselves. Take the question of free PSA in my case. Normally if the fPSA count is greater than 25% there is only a small chance of the tPSA count being due to PCa. The higher the fPSA, the less the chance is that cancer is involved. Yet my fPSA has been well over 30% for some years now – and is over 40% now. But I have prostate cancer – my TURP (Transurethral Resection of the Prostate) in June demonstrated that beyond doubt. I believe it is the dormant form that does not require immediate treatment because there have not been what I would regard as significant changes in my PSA since diagnosis – my overall estimated doubling time is over 12 years. But in saying that I am fully aware that the only rule about PCa is that there are no rules.

As you say, you were fortunate that your medical advisors followed up and persisted even though your two initial biopsy results were negative. Again, biopsy is a hit and miss affair. The way that PCa tumours grow in their early stages make it difficult to ‘hit’ what is a pretty small target.

All the best

Terry Herbert

in sunny Kalk Bay, South Africa

Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Sep '04 PSA 7.45 fPSA 42%

My site is at www.prostatecancerwatchfulwaiting.co.za

It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey

-----Original Message-----From: ROGER SHAW Sent: 14 November 2004 09:16To: ProstateCancerSupport Subject: PSA & percentages

I found your figures interesting Terry. However, there can be yet another aspect & this is the number of men with raised PSAs whose biopsies are negative in spite of the fact that they have ca. In my case I was found to have a PSA of 74, no symptoms except for a slightly reduced urine flow. GP got me seen within a few days. Urologist undertook blind biopsy. "Clear of Ca". Six months later & PSA was 125. Urologist did a TURP "so as to have more tissue for examination, probably an infection". Once again "clear of ca". Six months later & with PSA still rising I had an ultrasound guided biopsy (which I now know I should have had in the first place!). Two tumours 2mm & 11mm with local spread beyond the prostate. As if my case isn't bad enough, I know of two other men who were told, following biopsy, that they had nothing to worry about. One is now dead & the other very ill. Neither were followed up & both presented later with mets., at least I had regular PSAs - thanks to my GP. It makes me wonder if this small sample of three, me & the two others, is unique or unusual or if a great number of prostate cancers are missed by urologists not following the guidelines.

The other issue arising from this is the fact that so many men know so little about prostate cancer until they are diagnosed & start to read up etc. The regular posts on this group helping men & their carers to find out & consider options is I believe very valuable, but sometimes it is still too late if the diagnosis is wrong. I have an aggressive tumour & I lost a year of possible treatment. However, three years on & I am still alive & kicking.

[Guest guest]

Thanks & good luck. Thinking of you.

Re: PSA & percentages

Thanks

My ureter stent went much better than expected and I don't know it is there.

At present I have 3 docs trying to sort out where I can get radiotherapy. I'm still hoping to have IMRT, I know they have it at the Royal Marsden but I don't know if they have it at Cookridge. If I get the OK from London York may want to know who is paying the ferryman!

My next appointment at St 's is in the new year!

Best wishes

[Guest guest]

Thank you Bradley, your message was just the kind of support I was seeking when I joined this group. I'll be thinking of you during your radiotherapy period and hope its not great a drag for you. God bless you.bradley elmore wrote:

, hang in there buddy. I too had some problems with the scarring and incontinence issues, I wear a pad now, just in case, and self catheterise myself every third day to keep the "hole" open and train it as you would an ear ring hole. It is simple. No pain. I just found that my cancer is still hanging around. .4, so starting radiation on Nov 22. six weeks five days a week. I know that it will be fine, and I will be free of cancer upon completion of the treatment period. Impotence...who cares, I agree with you. I would rather wake up cancer free than worry about getting an erection. Some guys can't get past that I guess. Too bad. Best Wishes to you, Brad

> >Reply-To: ProstateCancerSupport >To: ProstateCancerSupport >Subject: Re: PSA & percentages >Date: Tue, 16 Nov 2004 21:17:04 +0000 (GMT) > >Two or three regular contributors to the website have what seems to me an aggressive tone which I've found offputting and therefore been put off from adding messages. I suspect I'm not alone in this. The "handholding" aspect is why I joined, yet there has sometimes been an edge of contempt for this which simply frightens me off. > >However, here's an update. 30/7. RRP, with rapid initial recovery. Catheter removed after 18 days. Emergency readmission 3 days later with retention. Catheter reinserted for 5 hours only, then discharged. 7 days later second emergency readmission (in great distress) with retention. As catheter insertion failed had retropubic catheter put in. An awful experience, as was the subsequent month with daily dressing changes etc. Then had operation to remove scar tissue. By this time my physical condition was poor. Now, 6 weeks on from that, am almost back to normal physically. Incontinence however remains, my guesstimate is around 25% of intake leaks. I use, as suggested, a sheath and leg bag during day. This has given me confidence, and today, after an absence of three and

a half months I returned, part-time, to work. I am also impotent, but that for me is not a problem. Was I warned of the risks? Yes. Am I complaining or whingeing? No. Do I > regret having had the surgery? No. Two men I know, aged 66 and 62, have died of this disease in the past year, and I know another (also 62) presently dying. > >Have courage, make your decision and go with it, give thanks that you are alive. > > Metcalf wrote: > > >v\:* { BEHAVIOR: url(#default#VML)}o\:* { BEHAVIOR: url(#default#VML)}w\:* { BEHAVIOR: url(#default#VML)}.shape { BEHAVIOR: url(#default#VML)} > >Good news that you have no mets - is your PSA on the rise still and what are they hoping to control it with? > > > > > PSA & percentages > > > >I found your figures interesting Terry. However, there can be yet another aspect & this is the number of men with raised PSAs whose biopsies are negative in spite of the fact that they have ca. In my case I was found to have a PSA of 74, no symptoms except for a slightly reduced urine flow. GP got me seen within a few days. Urologist undertook blind biopsy. "Clear of Ca". Six months later & PSA was 125. Urologist did a TURP "so as to have more tissue for examination, probably an infection". Once again "clear of ca". Six months later & with PSA still rising I had an ultrasound guided biopsy (which I now know I should have had in the first place!). Two tumours 2mm & 11mm with local spread beyond the prostate. As if my case isn't bad enough, I know of two other men who were told, following biopsy, that they had nothing to worry about. One is now dead & the other very ill. Neither were followed up & both presented later with mets., at

least I had regular PSAs - thanks to my GP. It makes > me wonder if this small sample of three, me & the two others, is unique or unusual or if a great number of prostate cancers are missed by urologists not following the guidelines. > >The other issue arising from this is the fact that so many men know so little about prostate cancer until they are diagnosed & start to read up etc. The regular posts on this group helping men & their carers to find out & consider options is I believe very valuable, but sometimes it is still too late if the diagnosis is wrong. I have an aggressive tumour & I lost a year of possible treatment. However, three years on & I am still alive & kicking. > > > > > > > > >