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Old 07-26-2008, 07:16 AM   #1
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New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

I am new to this board. I am totally confused with the PSA and FREE PSA levels. I'm 49 & I have to go for a biopsy next week. My PSA was 4.7. Followed up with a Free Psa test and the free PSA 13.5%. I have read just about everything on the internet about the probablity of prostate cancer with these numbers. I read that PSA between 4 & 10 there is a 20% chance of testing positive. I also read that between 4 & 10 with a FREE PSA of of under 25% there is a 45% chance of prostate cancer. Yet I come on here and read the posts and I see men that have had been diagnosed with prosate cancer with PSA numbers similar to mine or even lower than that. Am I just reading the 20 to 45 % of the men that get cancer. Where are the posts from men with high PSA numbers and suspicious FREE PSA numbers that had negative biopsies. Should I conclude that those 20% who test positive for cancer in the 4 to 10 range are not correct or old information? From what I read, anything over 10 is cause for real concern. Even the lab tech said 4.7 wasn't a big deal. Now I am convinced I will test postive with my FREE PSA being 13.5 %. Please help me with some correct information.

 
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Old 07-26-2008, 08:46 AM   #2
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

John,

I am 67 and had my prostate removed in 01. I went to three different Docs. unassociated with each other and they all said the same thing. Because I am in good health I should have it removed. They gave me three opptions, kymo, radio active seed implants or surgery to remove. My psa went from 1.8 to 4 between annual testing. So that promted the biopsy, which came back positive. Given the opptoins and the results of the tests I elected to go with the surgery. The Doc keep me out of work for 4 weeks. I can tell you I have a couple of friends that have also had surgery within the last few months and they had a much shorter recovery time do to the progress made in the operating techniques(laser surgery). Keep doing what you are doing talk to everyone and anyone, research, ask every question that my come to mind.

Good luck

Joe41

 
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Old 07-26-2008, 09:18 AM   #3
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

Joe...you had your prostate removed alltogether? Was your DRE normal? What are the side effects you are experiencing? I am reading about the side effects of radiation and I they sound pretty bad. Thanks

Last edited by johnn66; 07-26-2008 at 09:25 AM.

 
Old 07-26-2008, 11:34 AM   #4
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

Quote:
Originally Posted by johnn66 View Post
...I am reading about the side effects of radiation and I they sound pretty bad.
It's always a good idea to read books, internet reports, speak with people and hear various opinions- and then you'll have to make up your own mind what's best for you.

Your first post seemed to be asking about what your biopsy result will be based on probability charts and a very limited group of responses from people posting here, which will give you some clues, but it's mostly anecdotal reporting, not a large-scale statistical sample. The probability charts you're looking at that take PSA, free PSA, your age, etc, help a doctor decide if it's the right timing for a biopsy-- not what the results will be. Chances are you don't have prostate cancer, but you'll know more when the test is over and results are in.

As to your specific comments on radiation's side effects, they do exist, as do side effects for surgery. There are different forms of radiation, and with most newer methods, the side effects are usually not too bad. I had proton therapy, a very targeted form of radiation that does less damage to healthy
tissue than other types.

I'd suggest you continue your reading so you'll know the questions to ask, but it does take a while to get fully informed on all this. Good luck with your biopsy.

 
Old 07-26-2008, 11:51 AM   #5
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

DAFF don't you have to be put on a waitning list for Proton Beam treatment? Also I read there is going to be something on TV about it this week. That will make the wait time longer. How long did you have to wait for treatment? Was it one treatment of a series of treatments?

 
Old 07-26-2008, 12:12 PM   #6
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

Quote:
Originally Posted by johnn66 View Post
DAFF don't you have to be put on a waitning list for Proton Beam treatment? ...something on TV.. this week. ... How long did you have to wait for treatment?
Until fairly recently there was only one major facility to do this- at Loma Linda, California, where over 7,000 patients have been treated since 1990. But now there are five, and that figure will soon be doubled with major facilities being opened in the next one to four years (next year at Univ of Pennsylvania).

It was strictly word of mouth until Robert Marckini, a patient at Loma Linda, wrote a book early last year (How to Beat Prostate Cancer). That's how I learned of this treatment (it wasn't from any of my doctors). So as the word spreads, the wait time has been increasing. I had my consultation in July last year, came back for the three-days of tests everyone goes through, and started treatment two weeks after that. Once treatment starts, it's about a two-month process. Daily (weekdays) treatments of approx two-minutes each (but maybe 30-45 minutes of total time at the facility. I was in a sublet condo with my dog, and the time went by quite fast.

I think the wait times for surgery can be a couple months, so I'm not sure
how different this is. For those that might be interested in proton treatment, I'd suggest getting on the list for a consultation as that's what gets things started. One doesn't have to make a commitment at that point.
I postponed/cancelled my robotic surgery when I became convinced this was something I needed to look at.

I agree that a report, still scheduled for this Wednesday as far as I know, on the Today Show, will likely cause a lot of people to pay more attention to this, and that could ultimately make it more difficult to schedule treatment. One action that the centers can take is too increase the utilization of the equipment by expanding hours. At the Univ of Florida Proton Therapy Institute in Jacksonville, treatment now goes until 10 pm each night, versus about 7 pm when I was there. They've hired more doctors and staff. At some point, maybe they'll run much longer.

 
Old 07-26-2008, 03:44 PM   #7
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

John,

I do not have side effects. Of course I was very sure to get a surgeon with a lot of experience and competent. This is the way it was explained to me. Think of the prostate as an orange when peeled it with have all those little white viens on it. They are the blood vessels that carry the blood to the penis for erection enablement. So the more of these the surgeon can save they better you will perform. I guess I did pretty good because I am not having problems performing. I still get PSA tested and it always comes back .005.
By the way one of my buddies had the robotics surgery and was back in the gym on the tread mill the following week. He went to Ochener in Louisiana.

I don't not know what DRE is. Good Luck

Joe41

 
Old 07-26-2008, 04:00 PM   #8
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

John,

sorry I forgot what DRE stood for. As I remember he said it was some what enlarged. However, when I was doing my reasrch I found that in some cases the DRE could be missleading. That's why I had the biospy done to be sure and am glad I did. I will say this, when I got back to work I told everyone I could to get a PSA. One of the guys that worked for me came back from his test with a score of 38, He looked fine felt fine, 6 months later he was gone.

Good Luck and keep asking questions, this is a quality of life issue.

Joe41

 
Old 07-26-2008, 05:35 PM   #9
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

THANKS JOE...maybe you can give me the name of the surgeon in case I need it.

 
Old 07-27-2008, 10:01 AM   #10
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

John,

The Doc. was H. Michael McSwain, great gut by the way.

Contact information

The Conrad Perason Clinic Urology center of the South. Tennessee

901 252 3400

One thing I have learned, you have time to do your research as this is mostly a slow form of cancer and your PSA is low. The biopsy will tell you much more.
Again good luck and speedy recovery what ever course of action you choose.

Joe41

 
Old 07-28-2008, 03:46 PM   #11
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

Quote:
Originally Posted by joe41 View Post
... when I got back to work I told everyone I could to get a PSA. One of the guys that worked for me came back from his test with a score of 38, He looked fine felt fine, 6 months later he was gone. ...
Joe, John and all of us,

Just wanted to chime in here that the guy with that PSA of 38 who lasted only a few months was very likely one of the very rare, extremely aggressive cases, and he might not have had ideal care. Those reading Joe's post with PSAs above 10 should not get too alarmed. Also, we should all realize that for almost all of us prostate cancer is a fairly slow moving disease, much slower moving than breast cancer and many other cancers. (And realize that we can apparently often slow it down further or stabilize it even without treatment!) All this said, as Joe urges, each of us needs to get our act together, to get those PSAs, and to follow-through if needed!

While I've had no enrolled medical education, I have learned from the School of Hard Knocks a lot about high PSAs and what they can and cannot tell you about the future for the patient. My first PSA ever, in December 1999 when I too - like Joe's employee - was looking and feeling fine, was 113.6. (My second, about three weeks later, was 125, but that's another story. I will say now that the team reading that result at first thought their machine had malfunctioned because such high scores are now (and then) quite unusual.) I'm still here and doing very well under treatment, as are many of us with similar situations. (Since then treatment has driven my PSA down to below 0.01 at the end of two full treatment periods. Yes, that decimal is in the correct place! )

Here's another reassuring example. I've gotten to know a fellow survivor whose PSA was in the thousands, and neither hormonal blockade therapy nor chemotherapy were still working for him. However, he had a great response to Leukine, and now he is doing great and is not on anything, I believe. (Dr. Charles Myers has several of these stories, including the one for this man, in his excellent and easy-to-understand book "Beating Prostate Cancer: Hormonal Therapy & Diet.")

When the first PSA tests were done back around the early'90s, almost all patients were diagnosed at a late stage of the disease, and PSAs over 200 were common. While most of these men did not last many years, few of them had anywhere near as short a time as Joe's employee.

There are some rare types of prostate cancer that often kill patients quickly - within months, but they account for well under 1% of all cases as I understand it. When I was diagnosed, I was in one division of a large organization, and a member of a nearby division had also been recently diagnosed. He had one of those highly aggressive cases, and he only lasted about a half year as I recall, during which time he urged his colleagues to get their PSA tests. That was one spooked organization after he passed on!

Dr. Charles Myers, an internationally known medical oncologist specializing in prostate cancer likes to explain the span of risk of death from prostate cancer by saying it runs from cases as mild as a case of dandruff to those as aggressive as pancreatic cancer, but that most of us are a lot closer to the dandruff end. The trick is to figure out where you are and respond wisely.

Fortunately, there are emerging therapies that probably will help some of even these men.

Jim

 
Old 07-28-2008, 04:20 PM   #12
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Re: New To The Health Board.. I'm Going For Biopsy & Totally Confused Please Help

Hi John,

I'm throwing in some comments in green on things that haven't been covered in other responses.


Quote:
Originally Posted by johnn66 View Post
I am new to this board. I am totally confused with the PSA and FREE PSA levels. I'm 49 & I have to go for a biopsy next week. My PSA was 4.7. Followed up with a Free Psa test and the free PSA 13.5%. I have read just about everything on the internet about the probablity of prostate cancer with these numbers. I read that PSA between 4 & 10 there is a 20% chance of testing positive. I also read that between 4 & 10 with a FREE PSA of of under 25% there is a 45% chance of prostate cancer.

Is infection or inflammation of the prostate unlikely? (I don't remember what you wrote in other threads; maybe you covered that.) That can increase PSAs and decrease the free PSA % even if there is no cancer.

Yet I come on here and read the posts and I see men that have had been diagnosed with prosate cancer with PSA numbers similar to mine or even lower than that. Am I just reading the 20 to 45 % of the men that get cancer. Where are the posts from men with high PSA numbers and suspicious FREE PSA numbers that had negative biopsies.

It is highly likely that most of those of us who participate on these boards are the ones who drew the short straws and got diagnosed with cancer, and then went on to learn about it. The lucky guys without cancer almost always go on with their lives and don't get involved in prostate cancer activities. It's the same way with support groups and organizations for prostate cancer that I know about; most of the participants, especially the leaders, have had to deal with prostate cancer, often with challenging cases. Like me, they have had to learn a lot about it and want to share that knowledge. The guys who appear to have been cured by their treatments most often stop attending the support groups unless they have continuing problems with side effects.

Should I conclude that those 20% who test positive for cancer in the 4 to 10 range are not correct or old information?

Heck, even 15% of men with PSA scores above 2.5 but below 4 will have prostate cancer, but only about 15% of their cases will prove to be fairly aggressive. (Since 15% with cancer X 15% fairly aggressive = only 2.25%, you tell me if all the extra biopsies are worth it. I have doubts.) It makes me think that you need to consider more than just the PSA level if you have a score in that range; think of other clues, like how the PSA is moving over time, how it responds to diet, how it responds to six months of finasteride or Avodart, etc.

From what I read, anything over 10 is cause for real concern.

Concern, yes; death sentence, no way!

Even the lab tech said 4.7 wasn't a big deal.

That's no doubt easier for him to say than for you to feel. It depends on how you define "big deal." It could be cancer, but chances are strong that, even if it is, it is in an early, highly treatable stage with many options, probably including active surveillance.

Now I am convinced I will test postive with my FREE PSA being 13.5 %...
With those numbers, I believe almost all of us would feel the way you do, but many of us will be delighted to learn we were wrong! I hope that you too are wrong!

Hang in there and keep your spirits up.

Jim

 
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