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Posted 3/13/2015 11:47 PM (GMT 0)
Zeddy, so sorry to hear this is disturbing you. And understandable given your family history. But I feel like you're flailing around and waiting for someone to post that says "I agree with you. This is disturbing." Maybe someone will, but I'm not that guy.

You had just about the lowest level of detectable low-risk cancer imaginable. I'd bet that 50% of guys over 60 walking around every day have more PC than that in their bodies whether they know it or not.

Your PSA is still very, very low. Sorry it's going up, but that's why you have tests to keep an eye on it. Really, I think that's all you have to do.

If you ran a list of everything that could kill you in the next 10 years and how likely they are, I'd bet you that PC would not make the top 30. Please don't let this run your life!
Posted 3/14/2015 3:36 AM (GMT 0)
Zeddy,

The article you link does not say that >.03 is recurrence. It says that >.03 is detectable and that recurrence remains at >0.2. By these standards, you are still undetectable and far from recurrence. I don't want to argue with you, but you cannot say with certainty that your readings have no fluctuations due to margins of error. But even without that, you are still undetectable and not near BCR. Again, I understand your concerns about what may happen, but until it does, stay calm. Hopefully, you will not need to do anything else.
Posted 3/14/2015 7:31 AM (GMT 0)

ChrisR said...
Zeddy,

You were G6 Organ Confined and 1/10 of 1% cancer. Your have about a 0% chance of dying from prostate cancer. Start looking for something else to worry about dying from and don't stop funding your retirement account.

If your PSA is coming back I would wager it is from benign tissue left behind from the surgeon and not cancerous tissue.

You need to really start researching the outcomes of OCG6 prostate cancer patients. You will have a very..very..very hard time finding any study that has someone dying from what you had. In fact, Patrick Walsh put out a study 2 years ago that showed none of his patients that had OCG6 died in 30 years of treatment.......

Your looking for bears in closets and you won't find any. I did the same thing as you when first dx. Stop getting the ultra sensitive test and move on with life. You are fine....


Hi Chris, and thank you for your support, but just let me remind you how you were thinking, and feeling some years ago, when you posted this:

ChrisR said...
I am 42 years old...

Psa 2.4 11/03
Psa 2.57 8/06
Psa 2.75 7/07
PSa 2.75 2/3

4 out of 52 or 56 cores depending on who you ask.
All cores "small focus" or 2% to 5% from original pathologist.
Gleason 6 from Epstien and local pathologist.

I had my slides read at Ohio State University and they said they were in conclusive. They had to send them to Johns Hopkins.

I was told from Dr. Partin that Gleason 6 was a default score and they don't go any lower then that.

Dr. Partin said "small focus" meant there was one cell in each slide.

I don't know how they can see or find one cell and how they can then grade it.

Anyway, none of this means anything because nobody can predict this cancer with any degree of accuracy.....I am just pissing in the wind with all of this. I will get it removed and hold my breath every day for as long as I have left until recurrence happens....

You had your treatment in top USA hospital, and you had the benefit of the very best medical people to treat you. Here in England, we are behind every other countries in Europe. Our hospitals are old and out of date. In 2015, robotic RP is very new in England and we employ French surgeons to show us how to do it?

Our National health system didn't treat my father for his PC, otherwise he would've lived to be 100. I was also refused MRI, biopsy, and the operation. I had to finance everything from my own pocket. That is why I have worries ... My surgeon was more interested in money than treating his patients properly. For him, the number is more important than the quality of treatment.

Posted 3/14/2015 7:52 AM (GMT 0)

Michael_T said...
Zeddy, so sorry to hear this is disturbing you. And understandable given your family history. But I feel like you're flailing around and waiting for someone to post that says "I agree with you. This is disturbing." Maybe someone will, but I'm not that guy.

You had just about the lowest level of detectable low-risk cancer imaginable. I'd bet that 50% of guys over 60 walking around every day have more PC than that in their bodies whether they know it or not.

Your PSA is still very, very low. Sorry it's going up, but that's why you have tests to keep an eye on it. Really, I think that's all you have to do.

If you ran a list of everything that could kill you in the next 10 years and how likely they are, I'd bet you that PC would not make the top 30. Please don't let this run your life!

Thanks Michael. You are right.
I live in north of England. Our National Health System is a "post code lottery". I had to pay for every part of my treatment from my own pocket to go to London for treatment, because in 2013, robotic RP didn't exist in most part of England. I almost died as the result of septicaemia because the surgeon who preformed my biopsy forgot to give me antibiotics for the procedure. That is why I have fears and worries. I don't have fear of dying, but I am very fearful of becoming disabled for the rest of my life, due to the bad medical practice in my part of the world. If I need more treatment in the future, only God knows what will happen ???
Posted 3/14/2015 9:41 AM (GMT 0)

FrackMe said...
Zeddy,

The article you link does not say that >.03 is recurrence. It says that >.03 is detectable and that recurrence remains at >0.2. By these standards, you are still undetectable and far from recurrence. I don't want to argue with you, but you cannot say with certainty that your readings have no fluctuations due to margins of error. But even without that, you are still undetectable and not near BCR. Again, I understand your concerns about what may happen, but until it does, stay calm. Hopefully, you will not need to do anything else.


Thanks a lot FrackMe. I am sorry if I sounded argumentative. This was not my intention. Have a nice weekend.
Posted 3/14/2015 10:00 AM (GMT 0)
Zeddy, welcome to this PC format. From what I have read you should stop worrying start living!! With such a small psa that goes up by such a small amount. They should be able to tell you from the biopsey are those cells in fact the kind of cells that are aggressive. Every man on earth is going to worry as soon as cancer comes into the conversation but for you so much of the results you posted are negative. If it were to ever get to a place that needed treatments they would probably start you with HT but the numbers are far from being there . Daves cancer is aggressive his psa yesterday was 2,295 down from the months before of 2,582. We did a happy dance!! But I know for you it is still a increase. You are doing everything you can for yourself and really don't let your life be about fear. Live for the day the moment ! You can Dave can't . Read what I have posted on what has happened to Dave since 2013 and I hope you will see what a better place you are with your diagnosis.
Posted 3/14/2015 2:13 PM (GMT 0)
Zeddy,

You are right about where I was 6 years ago. Since then I have busted my tail researching stats. from G6 people. In searching the web over and over I could not find one case of someone dying who had OCG6. I'm sure someone somewhere has. But things have changed since then. G6 15 years ago was classified differently then it is today. Epstein at J.H. was confused by why a very small percent of G6 people progressed and so many did not. That led him to research and produce the 2005 ISUP revision to Gleason grading system. Which you and I are classified by. At least I know they used it on my pathology. After reading Walsh 30year study that had no patients with OCG6 move on to die or even develop metastatic disease I let this go. Not to mention I can't find any other studies from any place where OCG6 people died or even developed advanced disease either. I've even got a 40 year study from some other guys as well. There are cases of OCG6 developing low detectable PSA Walsh has seen, but none of them progressed. This is why I went to J.H. I figured that if none of the people "they" classified as OCG6 died of prostate cancer then I wanted to be classified by their system if I was an OCG6.

I understand your fear after watching so many family members pass from this. Every man in my family has had PCa except my older brother. None have died of Pca.

There was nothing anyone could have told me years ago to convince me that having cancer at 42 was not eventually going to kill me. I thought everyone was full of BS....It's cancer.....but again after 4-5 years of fear and anxiety searching the web as I mentioned, I could not find 1 study where anyone who had OCG6 died of PCa......If anyone has one I'd love to see it.....Not saying I've read everything. I even complied my own stats. from G6 men here and on yana.net Again no deaths and body has progressed yet.

Also, benign tissue can take sometime to stabilize.

I understand that only a PSA that levels off and time will help you. Keep testing your PSA every 3 months to see what happens. Even if it comes back I challenge you to find me a case/study where someone with your stats died.....

Reach out to me when you want...PM me if you need. I will send you a copy of Walsh's 30 year study on RRP if you want to show you the stats. for your Gleason grade. Which by the way the Gleason system is still the only proven long term predictor of outcome. Simply because it has been in use for such a long time. I have emailed Walsh as well and he assured me that in his opinion I would not die or even develop metastatic disease in 30 years of this. I believe him more than anyone in the world. who else are going to ask besides a higher power.....

If you want to feel better send your post op slides to Epstein and ask him to read them. He is hands down the best and you will know exactly where you stand. If you stay an OCG6 according to J.H. you can put this behind you regardless of what your PSA is doing.

Post Edited (ChrisR) : 3/14/2015 8:22:27 AM (GMT-6)

Posted 3/14/2015 2:22 PM (GMT 0)
This whole thread underscores my concerns about the ultrasensitive testing. Basically, if the guidance is that "we don't worry about anything less than 0.2 psa", then why should we worry about fluctuations down in the 0.02 range?

Testing methods are imperfect, and there are meaningless differences out in the 3rd decimal column that are natural variances within statistical quality control boundaries.

IMO, all the ultrasensitive test does is create anxiety where it's not required. To sort of quote a paper I read years ago on a related subject that was titled "Zero, the unreachable goal", just because we think we can measure a super low value of something, doesn't mean that it's useful or valid.
Posted 3/15/2015 12:46 AM (GMT 0)

island time said...


(Wait a minute...i found a guy on another forum who claimed to be a G6 post op path and was experiencing a recurrence.)

You're so funny !!
Posted 3/15/2015 1:08 AM (GMT 0)

sue saddened wife said...
Zeddy, welcome to this PC format. From what I have read you should stop worrying start living!! With such a small psa that goes up by such a small amount. They should be able to tell you from the biopsey are those cells in fact the kind of cells that are aggressive. Every man on earth is going to worry as soon as cancer comes into the conversation but for you so much of the results you posted are negative. If it were to ever get to a place that needed treatments they would probably start you with HT but the numbers are far from being there . Daves cancer is aggressive his psa yesterday was 2,295 down from the months before of 2,582. We did a happy dance!! But I know for you it is still a increase. You are doing everything you can for yourself and really don't let your life be about fear. Live for the day the moment ! You can Dave can't . Read what I have posted on what has happened to Dave since 2013 and I hope you will see what a better place you are with your diagnosis.

Thank you Sue for your kind words and your support. I read your previous posts. Your story is very sad. I am terribly sorry that you and Dave have to go through this in life.

My dad died with PSA of 15 ! They didn't treat him, because of his age. People in their old age, only receive palliative care in England. My father was a very fit and healthy man who spent most of his life serving his country, and died as a retired army general. He suffered an undignified and painful death.

I didn't receive any treatment under our National Health System which I have been paying for with my taxes for so many years. I had to initiate my own investigation and treatments, and that is where my worry have begun.

Thank you for spending your valuable time writing to me. Please pass my regards and best wishes to Dave.
Posted 3/15/2015 2:01 AM (GMT 0)

ChrisR said...
Zeddy,

You are right about where I was 6 years ago. Since then I have busted my tail researching stats. from G6 people. In searching the web over and over I could not find one case of someone dying who had OCG6. I'm sure someone somewhere has. But things have changed since then. G6 15 years ago was classified differently then it is today. Epstein at J.H. was confused by why a very small percent of G6 people progressed and so many did not. That led him to research and produce the 2005 ISUP revision to Gleason grading system. Which you and I are classified by. At least I know they used it on my pathology. After reading Walsh 30year study that had no patients with OCG6 move on to die or even develop metastatic disease I let this go. Not to mention I can't find any other studies from any place where OCG6 people died or even developed advanced disease either. I've even got a 40 year study from some other guys as well. There are cases of OCG6 developing low detectable PSA Walsh has seen, but none of them progressed. This is why I went to J.H. I figured that if none of the people "they" classified as OCG6 died of prostate cancer then I wanted to be classified by their system if I was an OCG6.

I understand your fear after watching so many family members pass from this. Every man in my family has had PCa except my older brother. None have died of Pca.

There was nothing anyone could have told me years ago to convince me that having cancer at 42 was not eventually going to kill me. I thought everyone was full of BS....It's cancer.....but again after 4-5 years of fear and anxiety searching the web as I mentioned, I could not find 1 study where anyone who had OCG6 died of PCa......If anyone has one I'd love to see it.....Not saying I've read everything. I even complied my own stats. from G6 men here and on yana.net Again no deaths and body has progressed yet.

Also, benign tissue can take sometime to stabilize.

I understand that only a PSA that levels off and time will help you. Keep testing your PSA every 3 months to see what happens. Even if it comes back I challenge you to find me a case/study where someone with your stats died.....

Reach out to me when you want...PM me if you need. I will send you a copy of Walsh's 30 year study on RRP if you want to show you the stats. for your Gleason grade. Which by the way the Gleason system is still the only proven long term predictor of outcome. Simply because it has been in use for such a long time. I have emailed Walsh as well and he assured me that in his opinion I would not die or even develop metastatic disease in 30 years of this. I believe him more than anyone in the world. who else are going to ask besides a higher power.....

If you want to feel better send your post op slides to Epstein and ask him to read them. He is hands down the best and you will know exactly where you stand. If you stay an OCG6 according to J.H. you can put this behind you regardless of what your PSA is doing.


Thank you Chris for your post. It really made me feel better. I am so grateful that you took the time to write and explain.

My worries and fears are not all about dying. We all have to die sometimes. I have grate concerns over further treatment (radiation) in our National Health hospitals in England. My oncologist, who is the director of oncology in a regional university hospital, told me that he will start radiation treatment when my PSA reaches 0.02 !!! I have no confidence or trust in our medical profession.

I've been reading this site since 2008, when my father was diagnosed, but I was not a member. I remember many of your earlier posts, and I admire your support and help.

It is not so easy to send my post op slides to the USA. We don't have as much freedom in the UK. I asked for second opinion on my slides. Bostwick labs, sent my slides with their report to another pathologist, and he agreed with Bostwick report. I complained that this was not an independent second opinion if the second pathologist had seen Bostwick's report. They replied that this is the normal procedure in our National Health !! I have to work on this ...

You mentioned that benign tissue can take sometime to stabilise. Do you have any links or reports about this that I can read? I know nerve-sparing radical prostatectomy leaves some tissue behind which makes PSA detectable, but how far PSA rises before it stabilises?

Thank you again Chris. I appreciate it very much.

Frederick
Posted 3/15/2015 2:19 AM (GMT 0)

halbert said...
This whole thread underscores my concerns about the ultrasensitive testing. Basically, if the guidance is that "we don't worry about anything less than 0.2 psa", then why should we worry about fluctuations down in the 0.02 range?

Testing methods are imperfect, and there are meaningless differences out in the 3rd decimal column that are natural variances within statistical quality control boundaries.

IMO, all the ultrasensitive test does is create anxiety where it's not required. To sort of quote a paper I read years ago on a related subject that was titled "Zero, the unreachable goal", just because we think we can measure a super low value of something, doesn't mean that it's useful or valid.



Hi halbert,

The reason for super sensitive PSA (sPSA) is to detect bio chemical recurrence a few months, or even years earlier than the old assay. There are evidence that earlier treatment has better outcome; rather than waiting until PSA reaches 0.1 or 0.2, or even higher.

I was told by The Royal Marsden Hospital in London (specialising in cancer treatment) that they initiate treatment when PSA reaches 0.05, and it is confirmed by two consecutive rises.

Yes, I agree with you that super sensitive /ultra sensitive test, creates serious anxiety. I am one of the sufferers of "PSA anxiety" ..
Posted 3/15/2015 6:57 PM (GMT 0)
Zeddy: the bottom line is you have family history and that is to your advantage to have knowledge of it You know you are at greater risk and I only hope with I the next couple of years they is a far better way of detecting PC . I know they have better versions of the test basic and advanced. In our battle it wasn't that we were even given the options to find Daves cancer at stage 2 Had the screening been done in 2009 it probably would have showed a psa of 40 for Dave as there is scientific evidence that show previous to diagnosis the 3 year mark would equal half of that psa value .I am not saying that Dave never would have developed PC but I am certain of the fact that in 2010 at the start of ED problems that were put off as being problems as you age....NOT... when there was no previous problems. One thing they tell you is that if ejaculations sre painful but that was not true for Dave .It felt diffrent restricted .Pay attention to what is normal .Make sure you have a Dr you can talk to to not one who tells you all men have problems because they don't. I think in part Dave never should have had her because I think for a man you can talk and say things that you never would to a woman . I can say this and talk about it because even though I am a woman I live with a man who has been through it. What gets me is who is in charge of education of prostate health for men? We are supposed to be a educated society ...BUT WHY ARE WE FAILING PROSTATE.? Yesterday we spent the day at the hospital as Dave needed a blood transfusion. I ended up talking with a English gentleman whose wife was in emergency. When I told him that Dave has stage 4 metastic PC he told me his brother has that as well. I said you must be more vigilant about your own prostate health to which he replied oh no my brother has PC because of his lifestyle, drinking, partying and the likes.When I told him the hereditary factor he was shocked. I am sure he will find his way to his Drs office this week. BUT WHY? When this started with Dave its what was missed that angers me the most Age 57, only child, mother had breast cancer when she passed , father no history so based on those facts alone why was he not screened. I called I booked a COMPLETE physical for my husband I even was specific and requested those tests. Why would any one I the medical feild tell my husband to not have those tests? It is the stage of discovery that offers the best outcome . I am 100% positive that Dave was stage 2 in 2010. In Canada we pay as well for testing unless you get cancer then they pay for all psa tests. WOW how generous! I will solier on I have no other choice but to be here and watch as Dave gets more and more symtoms .I reseach to find evey available possible treatment that will keep him here with me  .The last 2 years saw 3 % increases each year in this the deadly type of prostate cancer Dave has But honestly lets find some way of universally talking about this educating more men about this . Some of you have said men don't die with stage 4 , I will be sure to let Dave know that! Actually you are probably right it will be a heart attack or the cancer will invade his soft organs next, liver, bowels, ect.
Posted 3/15/2015 10:58 PM (GMT 0)
Wow, this is a very interesting thread!

Frederick/Zeddy, I understand your anxiety considering your family history and the health care system you are in. May I ask, if you know/remember, what Gleasons were your family members who died, and at what stage were they diagnosed?

Sonny3, what a story you have! Reminds me of my neighbor across the street- in his 80s, widowed since his wife died of Alzheimer's some years ago. Positive Bx and PSA in his 20s and high for a few years now, although it did dip a few points recently. He does various natural approaches, but other than that he is obviously just saying " eff it". No treatment whatsoever, just works in the yard, walks the neighborhood, travels a lot. No symptoms so far, I don't think they have identified any mets yet. He has obviously decided to enter that race to see what will kill him first, PC or something else. In the meantime, he has none of my SEs. Doesn't seem to worry about it as much as I do either. Although I probably worry more about SEs than I do my possible future demise from PC even though I am one of those nasty G9s!

Zeddy, doesn't sound like you have a ton of faith in the people who will be treating you, and I can't blame you. I do wonder what is happening over there if you have 3 family members who died of PC? I am sort of surprised that if they would not treat you for your PC and you had to pay for it yourself, that they will be willing to give you RT if you hit either .02 or .05(did I see both in your post?) Will you have to pay for that?

Honestly, if it wasn't for that sad family history of yours, I think you would have been better off with no treatment at all(just one man's opinion of course, and I could be totally wrong) especially as it sounds like they tried to kill you with Septicemia. And even with that family history of yours, I am wondering if they were much worse Gleason or stages than you had at diagnosis. But, even so, I can see where that would worry you.

But what about this: presuming you are confident that you were really only a very small volume G6, then statistically you really had a very small chance of ever dieing from that even if you did nothing, right? If you really were a G6, very low risk. Then you had surgery to remove hopefully all, but certainly the great bulk of, whatever amount of G6 you had. So if any got left behind, it should be much less of the already very small amount of G6 you had, reducing your risk even further. So considering there are patients and docs who never would risk treatment and almost always bothersome and sometimes deadly SEs to treat a low volume G6 to start with, now that you have had hopefully most of that rascal removed, what if you just ignore all of this crap for a while? Until there is clearer evidence that there is an aggressive killer beast in there rapidly advancing? Right now you have- assuming these miniscule measurements can be trusted- a doubling time of about a year, is that right? So if nothing worsens in about another year your .015 becomes .03, and then in another year it becomes .06, etc? That's if it doesn't turn around and head in the other direction for a while, back down to .010 or something, as they sometimes do?

I know, I know, easy for me to say and easier said than done. Especially with that family history and maybe not a ton of trust with your system. You are probably thinking something like the same rascals that almost killed you with septicemia botched your Gleason readings and you are really a G8? Have you had second opinions on those Gleason reports?

I don't know what to tell you, who knows? All medical treatments have serious risks, plus it sounds like in your case a lot of $ costs. All that has to be balanced against the risk of a G6 really being only a G6 and if it is G6 the very small(non-existent?) chance of ever killing you. But if it really only was a low volume G6, I'd think carefully before giving them another chance to do me some harm. Sorry, I know I am not much help to you, maybe someone else can or has been. Good luck on figuring it all out. I mean that, that is not sarcasm.
Bill in MS
Posted 3/16/2015 5:50 PM (GMT 0)

sue saddened wife said...
.

Thank you Sue. I agree with everything that you said. Please take care ..
Posted 3/16/2015 6:57 PM (GMT 0)
Zeddy,

It is your cancer, your life to worry about. Do what you have to do.

I and many others wish we had your numbers but that is meaningless to you.

To Thine Own Self Be True!

Bill from Florida USA cool
Posted 3/17/2015 12:16 AM (GMT 0)

BillyBob@388 said...
Wow, this is a very interesting thread!

Frederick/Zeddy, I understand your anxiety considering your family history and the health care system you are in. May I ask, if you know/remember, what Gleasons were your family members who died, and at what stage were they diagnosed?

Bill in MS


Hi Billy Bob,

Thank you for your interest, and your understanding.

I don't remember much about my granddad and my uncle, but I can tell you a little bit about my father's story.

He had an operation (TURP) for enlarged prostate. As you know they cut some tissue, to open up the urethra. After the operation, his surgeon said that the removed tissue looked suspicious. Two weeks later my father had a letter saying that they found cancer in those tissue, which was G6.

Later that month, he had a meeting with his doctor. The doctor told him that he had G6 very early cancer, and it will not cause any trouble for him in the next 10 years.

I called his doctor and asked for biopsy, as they didn't know if there was cancer in any other part of his prostate, but my request was turned down.

He deteriorated. He couldn't pass urine, so they fitted him with permanent catheter. A few months later he developed a severe back ache. His GP, reluctantly sent him for an X-ray. The X-ray showed metastases in his pelvis, and spine. At this point they started him on hormone but it was too late. He lost control over his bowel and later lost the use of his legs. They just treated him with morphine! Eventually he became so weak that he developed an infection, and that killed him. He suffered so much pain ...

No, I don't have faith in our medical profession in spite of the fact that my wife has worked in the system for decades. Our NHS is run and owned by government. and they are too powerful to be criticised or sued. England has the lowest number of prostatectomies in Europe. 5000 operations in England compared with 18000 in France, and more in Germany.

My oncologist didn't even know the level of PSA at which the SRT should be started, that is why he said that he would commence at 0.02 !! :)) and not 0.2 ! Of course they will offer me radiation treatment, but I am sure in their hands, I will suffer sever side effects and disabilities. The only chance would be to have the treatment in London and privately.

As regard to my operation, I have to admit that my quality of life has improves after my operation. I was continent as soon as the catheter came out, and suffered no ED. I was running two weeks after the operation, and before my PSA started to rise, I was very happy. Prior to my operation, I suffered 8 years of agony with prostatitis, as the result of damage to my prostate. I had a minor operation on my knee, and the doctor who inserted the catheter in my bladder, had opened the balloon in my prostate.

I accept your theory Billy, but I think that I am mentally and emotionally scared with this disease. I've become supersensitive about it.

By the way, doubling time, in super sensitive PSA is not accurate and accepted. I try to find a link to a document about it.

I had asked about second opinion on my histology, but it was carried out according to our NHS rules. The first lab, sent my slides to the second lab together with their report, and the second lab rubber stamped it as accurate. :) I complained that it was not an independent and fair way of doing it, but they just ignored me. I have to admit that my original histology was carried out by Isabelle Meiers at Bostwick lab in London.

You've been great help Billy. Thank you for taking time writing to me. I appreciate it very much.

Post Edited (Zeddy) : 3/16/2015 6:25:32 PM (GMT-6)

Posted 3/17/2015 12:21 AM (GMT 0)
Billy, this is about Super sensitive PSA:

http://www.yananow.org/UltraPSA.shtml

Post Edited (Zeddy) : 3/16/2015 6:29:22 PM (GMT-6)

Posted 3/17/2015 12:39 AM (GMT 0)

Big Mac said...
Zeddy,

It is your cancer, your life to worry about. Do what you have to do.

I and many others wish we had your numbers but that is meaningless to you.

To Thine Own Self Be True!

Bill from Florida USA cool

Thank you Bill. I'll try, but it is easier said than done. Yes I know I have been fortunate in some ways ..

(mention of subject not allowed on forum) if the cancer returns ...

Post Edited By Moderator (142) : 3/20/2015 9:34:36 PM (GMT-6)

Posted 3/17/2015 12:41 AM (GMT 0)
Zeddy, I've read that article before. Which is why I have a hard time with the use of ultrasensitive PSA. What, exactly does it mean, and is it really valid?

I understand what you're going through. My whole family is full of PC as well, and my father was diagnosed in his mid-60's shortly after PSA came around. He did have 10 good years after initial treatment, and then had a combination of HT, radiation, etc. And finally died of spinal mets.

I'm inclined, myself, to not even ask for ultrasensitive PSA, and go with the conventional test and understanding of it's validity.

It's a shame that the British situation is what it is. It sure sounds like there is a lot of unnecessary pain and suffering going on. Unfortunately, that's what happens when the system is geared towards treatment vs prevention, and ignores the idea that early screening and early treatment when indicated is probably cheaper in the long run than late treatment and long term palliative care.
Posted 3/17/2015 1:53 AM (GMT 0)
I seemed to have missed this thread. And it looks like you've gotten some great advice. All I can do is repeat - there are tiny extraprostatic sources of PSA, and coupling that with the standard error of the test, you're still within those limits. It's also possible that your prophylactic prostatectomy seeded some G3s that don't require any action. If it goes above 0.03 ng/ml, we can talk some more.

- Allen
Posted 3/17/2015 3:49 AM (GMT 0)
Zeddy,

I've been through radiation. Mine was adjuvant, not salvage, but the experience is pretty much the same. It wasn't a big deal for me. It isn't one for most guys. Not something it makes any sense to go around dreading. Some of the studies we've been talking about here suggest that radiation works better if you do it early. A PSA of 0.03 is early. Really, really early. A PSA of half that is just nuts to worry about. Could it be that this time next year you'll need to start thinking about radiation? Maybe. If your PSA keeps creeping up. But, like I said, the radiation is not that big a deal and may not be needed anyway.

Your dad's doctors took their eyes off the ball. It sounds like you are not going to let that happen to you. You should certainly keep on top of things, but at the same time, the main risk that PCa poses to you right now is that it will make you worry yourself to death.
Posted 3/17/2015 5:17 AM (GMT 0)
Zeddy,
I just got back from my checkup with Dr Myers. I was concerned about my psa creeping up too. My numbers are small but way higher than yours. Doubling time is all that matters at this point. You should plot yours using a semi-log chart with the vertical axis being logarithmic and base 2. This way every line is double the one below. I did this with your numbers and it looks like yours will double (to 0.025) in a few years. Detectible might be in 10 years or so. Myers would tell you to relax and just have PSA testing done to make sure it stays slow. You won't die of this.

Post Edited (Rigby) : 3/17/2015 9:59:20 AM (GMT-6)

Posted 3/18/2015 2:41 AM (GMT 0)

Tall Allen said...
I seemed to have missed this thread. And it looks like you've gotten some great advice. All I can do is repeat - there are tiny extraprostatic sources of PSA, and coupling that with the standard error of the test, you're still within those limits. It's also possible that your prophylactic prostatectomy seeded some G3s that don't require any action. If it goes above 0.03 ng/ml, we can talk some more.

- Allen


Hello Allen. I am sorry that I am boring you with my worries again. I still remember your advice and encouragement from my first post. Now I have become super sensitive to PSA. Even thinking about it, makes me depressed. I am not a coward person, but the lack of trust to our health system, is a big part of my problem.

You mentioned that my operation could've seeded some G3s. Don't you think if this was the case, it would've been evident in my histology? Thank you Allen.

Frederick.
Posted 3/18/2015 2:53 AM (GMT 0)

halbert said...
Zeddy, I've read that article before. Which is why I have a hard time with the use of ultrasensitive PSA. What, exactly does it mean, and is it really valid?

I understand what you're going through. My whole family is full of PC as well, and my father was diagnosed in his mid-60's shortly after PSA came around. He did have 10 good years after initial treatment, and then had a combination of HT, radiation, etc. And finally died of spinal mets.

I'm inclined, myself, to not even ask for ultrasensitive PSA, and go with the conventional test and understanding of it's validity.

It's a shame that the British situation is what it is. It sure sounds like there is a lot of unnecessary pain and suffering going on. Unfortunately, that's what happens when the system is geared towards treatment vs prevention, and ignores the idea that early screening and early treatment when indicated is probably cheaper in the long run than late treatment and long term palliative care.


halbert,

I read your story. I'm very touched by it. You've been through a lot. I am so sorry that you had to endure so much. Your dad's story reminds me of my father, but my dad only got a couple of years after he was diagnosed.

I really love your words about the system being geared towards treatment vs prevention. Our government spend so much for the cosmetics and advertising of our hospitals, but they don't spend anything towards equipments and research. Most of our research is founded by the charities. We have two huge regional university hospitals in the north of UK, but they don't have the ability to do super sensitive PSA.
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