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Posted 2/24/2011 12:10 PM (GMT 0)

My PSA goes up and down. Last year 5.4 and yesterday 02/23/2011 it came back @ 6. A year or so ago the uroligist also orders a PCA-3 test which came back at 35.4 and cut off is 35. Anything above 35 they recomend biopsy. I saved the money and then the Dr. told me to wait and if it PSA went over 6 then he would do one. I must note I have had 2 previous biopsys done. One in his office ..ouch...about 10 core samples and one at a surgery center with 16 core samples. All were negitive showing prostitis. He says my prostate is 4 time normal size. Now I'm hoping I didn't wait too long. Anyone had a experience like this???

Posted 2/24/2011 1:46 PM (GMT 0)
Hi Confused1,

With your history of prostitis and two negative biopsy, I suspect that this is what is going on. Of course another biopsy is the only way to know for sure.

You said that your prostate is 4 times the size of a normal prostate? If a normal prostate is about 25 cc, then that would put yours at around 100 cc. The standard amount of PSA is .066 per cc of normal prostate tissue. That would mean your PSA could very well be 6.6 and in the normal range for that size of gland.

Stay vigilant with this and follow what your urologists recommendations will be. But I don't think you waited too long. Sounds like you are doing the right thing and at the right time.
Posted 2/24/2011 2:07 PM (GMT 0)
Hi Confused1 and welcome to the forum.

My PSA went up eevry year for 4 years. Started at .75 now at 5.75. I had the initial in office biopsy couple years ago with nothing found. I did 3 years of antibiotic and each year the PSA came down until 2010. Dr suggested extensive biopsy as an outpatient and about 40 cores were taken. Cancer was found in one core, but very isolated and non aggressive type. So for now it is just to wait.

Have you taken antibiotic to see if that is what is causing problem? I was also surprised that he did not do more cores when you had it in the biopsy done in the hospital.

Hope my information helps you with talking to your Dr.
Posted 2/24/2011 2:51 PM (GMT 0)
Thank you guys. I don't know why only 16 samples but that is what he did and he said he "Saturated the Prostate". I don't know why he is not considering prostate size as to PSA level but I will Ask...thank you. Everytime I go in he just says "Biopsy" and as you know this is not cheap. I was going to do another but when I went back he said "Let's just wait until it goes over 6" when before it was  "I don't want to miss a window"??? Then he wanted to do a cystoscopy to see "What is going on" and maybe start medications. He did offer medications after the last biopsy but I chose not to take them. I don't get up at night to urinate unless I drink alot of liquids before bed. I have done antibiotics on many occaisions. PSA does go down a little? I'll make another appointment but these Drs. always want to say "Biopsy". He told me he has a patient that PSA is over 10...done about 10 biopsys and all neg.
Posted 2/24/2011 3:46 PM (GMT 0)
What is your preference confused1?

While biopsy is the only way to be certain if there is cancer or not...it can also miss finding cancer. This has happened more than what you might think. Several men might post their experience on this subject that has happened to them.

If your doctor feels that there is cancer, then he will advise you accordingly. But if it is due to prostitis, that can be very difficult to clear up and can be cronic requiring several different medications until one finally works.

I am not in favor of biopsy unless it is after all other tests indicate there is the need for one. But if you do need one, then I would ask about doing a saturated biopsy that normally will have 40+ samples taken in a hospital setting. And be certain to take the anitbotics after the biopsy...your statement that you didn't take them after the last biopsy was scary.
Posted 2/24/2011 11:25 PM (GMT 0)
Sorry! He would give one pill of an antibiotic after the biopsy and yes I took it. My primary Dr. put me on antibotics for 60 days once and the uroligist about 30 days. He doesn't belive in taking them longer than 30-60 days as he told me to look up "some codition" (don't remember) from taking them too much. however My primary said some people are on them with prostitis for a year at a time?? I'm going to make an appointment and see what he says this time. What bothers me the most is...there really is no other test and needle biopsy isn't that accurate, but I guess better than nothing. I could of had the two biopsys and it was missed both times. But if that is all there is that is all there is. Thanks as you guys are at least giving me some better questions to ask....however he seems to not like to be questioned. Everyone says he is the best around but maybe I should go to a different Doctor.
Posted 2/25/2011 12:17 AM (GMT 0)
Confused,

You asked if anyone had an experience like yours. I had a somewhat similar situatuion.  I had a large prostate (70 gram) that got me up a lot at night. 

Then, my PSA went from 2.8 to 7.6 in a year.  After making sure it wasn't an infection, etc. we did a biopsy (12 cores).  Biopsy came back "atypia" (cells that aren't quite cancer).  Watched it for a while and did second  biopsy (10 cores in a different areas then the first biopsy).  Second biopsy had 2 cores positive.  Diagnosed as G 3 + 3; T1c.  After the operation the pathology was upgraded to G 3 + 3; pT2c (both lobes had cancer).

I am still wondering why my PSA went up so quickly if my Gleason was 6.  Your PSA doesn't appear to be rising; that would seem to me to be a good sign. 

Hope this helps.  Good luck and best wishes.

 

Posted 2/25/2011 3:43 AM (GMT 0)
Thanks..RCS....That was a big jump. Hope all is well for you. This stuff is depreesing for men like women having to worry about breast cancer. Even with my prostate 4 times normal I still don't get up at night with very few exceptions. I remember when I did my first uroflow test the Dr says..."Did you have a job or something that wouldn't let you go to the restroom"? He told me my bladder held twice what his did. But drinking cofee all morning I go about every hour when I'm up. I'm going to make another appointment and see what happens. I think this is a good site as everyone is so helpful and knowing others stories helps alot. I'll post updates as to how this plays out. You guys are great!!!
Posted 2/25/2011 2:22 PM (GMT 0)
Confused1,
I know it can be depressing, it was to me to. Hang in their and ask plenty of questions with your Dr about what you are reading. I have started a list of things to ask my Dr in April about waiting (knowing I do have a very small cancer spot) and looking at the pathology report. I tend to write things down as I get in there and forget when he starts talking. I feel like I have a good doctor and listen to what he has to say.
Posted 2/25/2011 3:10 PM (GMT 0)
JoKo

Thanks! I will write all this down but sometimes he tells me "Don't believe everything you read"? So I'll just refrase as to a question instead. Not all but some Doctors think they are like God but God being just older. He doesn't have much of a bedside manner and it is like I'm being rushed. I'm like asking questions as he is walking me out. I know they're busy but I'm paying for the appointment. Even when my pathology after the biopsy cam back he had made the appointment 2 week out from the procedure. I knew they had the results after a week and I called and wanted the result. They tried to put me off but I got real assertive and tolf them "Look! I'm stressed and I'm a big boy so just give me the results or have the Dr. call me...I'm not waiting...it is MY health"! She gave it to me. Just like when you have lab work done they say we will only call if something is wrong but I tell them..'NO..I want a call...so they do and trust me it forces them to look at the lab reports again. Once a month after my wife had her lab done I was in the office. I asked about hers and when they looked it was "How did the Dr. miss that?" Her thyroid was way off so I don't trust that we will call you if something is wrong crap. It is your lab and you should get it all. AND they miss stuff. Like evrything I read on a saturation biopsy says 30-40 samples but he did 16 ind I was at a surgery center? But how was I supposed to know at the time? I could go on and on about stories these Dr. tell and find out later there was a problem...medicated stent put in my heart and was told I was lucky they had those. I looked it up when I got home and there were many FDA warnings sent. "I questiond the Dr and he replied..."Don't believe everything you read" but NOW I have to take Plavix the rest of my life because of it....and had it not of been it was for one year??? I don't mean to complain so much but It is sad the patient has to double check the Dr and I'm sure they hate the internet. Thanks for all the support. I like this site.

Posted 2/26/2011 2:36 AM (GMT 0)
Confused,
After two negative biopsies I would get a Color Doppler Ultrasound. If it doesn't show anything then you can relax. I went through what you are going through for 10 years and 13 negative biopsies. I would never get another biopsy without a color doppler. There are many places that a transrectal biopsy just can't reach.
JT
Posted 2/26/2011 3:20 AM (GMT 0)
Thanks john, I'm writing all this down. My last biopsy was in 2007 so it has been 4 years. I made an appointment today so I'll see what the dr has to say on March 24. But thanks for all the info. I guess this is just a hard one for science to pin down. You'd think if they can reach and touch something it wouldn't be that hard???
Posted 3/4/2011 11:48 PM (GMT 0)
Due to a cancelation my uroligist appointment was today. I don't think this Dr likes me...told me I was difficult. I probably ask too many questions. I asked what people here mentioned. Prostate size in relation to my PSA. He said it will only rise a fraction. The only thing that will cause PSA to jump is cancer. however on my last visit he told me he thought my prostate was getting larger and this time he said no??? Anyway he ordered a PCA3 plus again. Antibotics for 30 days, repeat PSA in 5 weeks and then a consult. He says after 3 negitive biopsy they are pointless however once before he had told me he had done about 10 on another patient...I have only had 2 biopsys. I'll just have to wait and see? maybe I should find another dr? he is supposed to be one of the best? I don't know?
Posted 3/4/2011 11:56 PM (GMT 0)
Confused

Based on the face value of your last post above, I would simply find a new urologist, its obvious he's not real in tune to what you thinking and feeling. I would not be comfortable in your situation with that kind of attitude.

David in SC
Posted 3/5/2011 12:03 AM (GMT 0)
Thanks! I just get irritated as I'm just the stupid patient. i realize he does this every day but we don't. I asked if I was a 'typical patient" and he said 'No, you are difficult'! One visit I need a biopsy, the next it is a cystoscopy, i just don't know. One visit he is concerned about the PSA and the next he isn't? I told him I had to cancel the Cysto because of financial constrants...maybe he doesn't like that...who knows....it's like your wasting their time.
Posted 3/5/2011 3:22 PM (GMT 0)
I agree with David. Without blaming you or the doctor, it is evident that you do not trust his advice. Not all doctors make you feel like your wasting their time. There are too many other good ones out there. Go find one of them.
Posted 3/5/2011 3:37 PM (GMT 0)
Thanks everyone! I'm going to do the antibiotics..tests etc...see what he says and go from there. I've always been a firm beliver that you should be able to ask questions. After all it is my health...my money etc. I've had good Drs that listen to concerns and help. I don't think these doctors realize how stressful this is for the patient. I always ask with respect and maintain a good sense of humor. But...you are right. If not comfortable with him there are many others and second opinions are always welcome.
Posted 3/6/2011 7:16 AM (GMT 0)
Hi Confused,

I would agree with John,

In cases where you have had multiple biopsies without finding any cancer it may be sensible to find a place that does Colour Doppler. This way you can do your standard template biopsy but they can also target additional spots that seem suspicious.

From all that I understand on this issue, it seems that there are only a handful of doctors that do this procedure well. Dr Fred Lee is one of then I believe. And there is another doctor in California that also is very well versed with the procedure. If you google "color doppler prostate" you may get some more details. I think you need to be specific about what you want and find an expert to do this procedure. Ask on this site and someone will help you.

I think you need to get away from any medical professional who doesn't respect you or your right to ask questions. Doctors are human and simply do not put in 100% for patients they do not like. This is my conclusion from a book I read called "What doctors think" - doctors themselves change their own doctor or specialist if they do not "click" with them. They know the importance of finding someone sympathetic to their cause.

An
Posted 3/6/2011 2:28 PM (GMT 0)
Hey Confused, I have had drs that wanted to rush things too. Mine is very good, but busy. I tell him ahead that I have questions when he is done with what he has to do. He did encourage me to do research and call him if I did have any questions on my positive biopsy. I see him in April and keep my question list right here at my computer to write things down to take. He does explain a lot before I even ask.

I won't tell you to go find another dr, but I do believe that you need to trust him and he needs to feel that he should answer all your questions. My Dr did say dont believe everything you read and we discussed what websites are good.

Hang in there!
Posted 3/6/2011 3:58 PM (GMT 0)
I agree. I asked him if I could ask a question about PSA since there is so much disagreement in the medical community. He said "I know more than anyone about PSA! It is the best test there is"! (exactly what he said)! I asked about PSA in relation to gland size and he says..."Only thing that will caue PSA to rise is cancer"! We all know that is not true and I didn't question him. Then he did a DRE. I'm telling you...three days later and I still hurt. He felt it then asked if it hurt and it didn't and then he kept pushing hard as hell until I thought I was going to urinate and told him so. He and others have done many DRE and NOTHING that painful.

He then ordered antibiotics, wanted a urine spec for a PCA3/plus test which by the way contridicts everything he just told me about PSA???? However the lab he uses for that test is the only lab that uses 11 as a cut off. All others use 35. The last one I had was 35.4. But I dare not queston him as he says I'm "Difficult"! I do know Drs tell you not to believe everything you read and I don't. But it does help fomulate questions. In 2003 I had a "NEW" state of the art medicated stent put in my heart. Dr told me how lucky I was that they had them. I looked it up and found the FDA had issed 2 warnings about them. He told me "Don't belive everything you read"! Six months later he tells me I will now have to stay on Plavix the rest of my life because of problems with the "NEW" medicated stents. If you pay for his service then he should be willing to answer questions. Hell, they won't even give you test results or biopsy results until your next visit. BUT...I call and insist...They are MY tests and I don't want to wait fo weeks.

Posted 3/6/2011 4:52 PM (GMT 0)
Interesting discussion of your relationship, or lack thereof, with your urologist.

I would look for another one to compare with. I don't say that very often here.

My key concern is that all of the books I've read follow Walsh's opinion -

You can have a very high PSA and not have Prostate Cancer, and you can have Prostate Cancer with a very low PSA. It is just one of the indicators. If your uro "knows everything" about PSA, he should be the most skeptical of it out of context.

 

Posted 3/6/2011 6:09 PM (GMT 0)
Sorry, but this reply is going to be the first time I've posted anything that suggests that someone should think of getting a different doctor to treat them. So perhaps that is an indication of questions being raised in my head about this one.
"Only cancer causes PSA to rise" is simply wrong.
PSA goes up as men get older for a start.
DRE, infections, biopsies, DRE's, sex, cycling etc before a test etc will all cause PSA to go up and while the prostate may only take a few days to calm down again after a rise due to sex, but it may take several months to calm down after an infection.
To prove the point I was in fact given a PSA test quite soon after a biopsy and my PSA thus jumped from 8.6 to something like 13.5 in about three weeks. (The uro I was referred to totally ignored the 13.5 - the first uro had bascially forgotten how recently I'd had the biopsy when he ticked the box for a PSA test as he was actually sending me to the lab for a test for infections.)

I have had three DRE's and all those doing them were very careful and considerate about the associate discomfort, and did not in fact cause any physical discomfort.

Alf
Posted 3/6/2011 6:48 PM (GMT 0)
Thanks English and 142. You know I have NEVER been told by any Dr. not to have sex prior to 72 hours of PSA test. However I knew that from John Hopkins news letter I get among other factors...BPH..prostitus etc. It took me back when he said that. He flip flops when I ask questions because when I mentioned there can be cancer with normal PSA he agreed...so I just shook my head as he had just at the same sitting said two different opposing things. AND I have had many DRE exams and several my him but this time this man hurt me. Especially when he started jabbing the glad toward the end I was half way accross the table saing 'You are killing me". He said i wanted to produce seminal fluid for the other test but he didn't do that before. I telling you after 3 days may ass is hurting like it is brused or something. I never either had that much pain...
Posted 3/6/2011 6:52 PM (GMT 0)
Confused,with each of your posts, you seem to already know what the source of the problelm is, and how to solve it. Most would never put up with that kind of doctor-patient relationship
Posted 3/6/2011 7:36 PM (GMT 0)
Purgatory....I think I'm now into just venting and it is not productive for anyone. You are right and I feel I was probably looking for some sort of valadation. I keep trying to blame myself...then I worry maybe I'm mis-reading the Dr, but even my wife tells me.."The last time he sais this...this time it is this and before that it was something else"! I reminded him last year that my PCA3 was 35.4 and he says "YEP...I had one guy with a score of 4" and I said.."Dr. 4 would be good"! He got frustrated and says.."OH...I keep getting confused with that one...lower is better"! Anyone can make a mistake but I think he was embarrassed when I corrected him....and I did it in a nice way.
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