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Old 01-15-2011, 09:35 PM   #1
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First PSA 15.2

This is a 'club' I never wanted to join. I'm only 49 and have prostate cancer. I had two positive sites in my biopsy for cancer on opposing sides. My first and second PSA scores (taken 5 days apart in October 2010) were 15.2 and 14.9. My Gleason score is 3+3=6. I had a bone scan done which appears to have come out negative for metastasis. I question that as I have had serious shoulder and wrist problems for the past 18 months that have gone un-diagnosed I will meet with a surgeon in three weeks to discuss the possibility of having a radical prostatectomy.
I have the John's Hopkins 2011 prostate cancer white pages and have read them several times and feel like I'm up to speed on my condition except...... I'm frustrated at not finding anyone else with such high PSA scores for a first time test at such a 'young' age. Is there anyone out there who is in my position?? I'm tired of hearing,"oh, My 80 year old grandpa has that". How can I possibly compare myself with that kind of situation?
Based on all the reading I have done on the subject, I feel the only viable treatment for me is the radical prostatectomy. Any feedback will be greatly appreciated. Thank you!!!:

 
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Old 01-15-2011, 10:11 PM   #2
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Re: First PSA 15.2

I'm sorry that you've had to join this club. It wouldn't be the type of club any of us would choose to be a part of. However, this is an amazing place to be if you are stuck with this.

My common-law partner, Irv was diagnosed with high-risk prostate cancer just before his 51st birthday. It was also his very first PSA test and came as a terrible shock.

His PSA was 32 and he had 10/10 cores positive with 60% on the right side and 20% on the left. His clinical staging was T1c and his Gleason score was 3+4 (7) with 20% being 4. His bone scan and CT scan came back negative so surgery was the best option, according to the doctor.

Irv had a radical prostactomy on November 9th and, unfortunately it failed. His cancer has moved out of the capsule and there was a positive margin, meaning that it was found on the edge of the area that was cut out. He also had seminal vesicle invasion. His Gleason score stayed the same but his staging is now T3b. His post-op PSA was 1.19.

Now we are waiting to find out what is the next step. There are different opinions about whether radiation would be a viable option at this point, as opposed to just jumping into hormone therapy. We are still dealing with that question.

We have felt your devastation and there is no doubt that this is a terrible emotional rollercoaster ride. We need to come to terms with the fact that life is different now. Will we ever get the chance to enjoy life again? I believe we will. It will just be different and, I guess love and attitude can conquer all. Let's hope that we can prove that that's true.

Based on your numbers, it sounds to me like you have a very hopeful situation as your cancer could very well be confined to your prostate still.

Take care and don't feel hopeless. You have a lot of years left to enjoy life.

Regards, Rhonda

Last edited by honda50; 01-15-2011 at 10:15 PM.

 
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Old 01-16-2011, 06:54 PM   #3
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Re: First PSA 15.2

Wow!! I almost left this site without registering and now I'm very glad I joined. Your reply is very much appreciated and also a great help. It is amazing how your state of mind and being can be changed over night by cancer.
I am lucky to have a wonderful wife, kids and close friends for support but they can't fill the gap in first hand experience from you and others. Again, thank you and I hope all works out for the best for all of us in "the club". Sincerely, threeXlucky

 
Old 01-17-2011, 01:21 PM   #4
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Re: First PSA 15.2

Welcome to the Board! (I'm curious about those three times, but maybe you will be able to add a fourth!)

I'll insert some comments in green.


Quote:
Originally Posted by luckyxthree View Post
This is a 'club' I never wanted to join. I'm only 49 and have prostate cancer.
As you have probably learned by now, a large majority of men are diagnosed when they are 65 or older, but there is a substantial portion of much younger new patients also.

Quote:
My Gleason score is 3+3=6.
You have probably also learned that a Gleason of 6 is by far the most common. It also arguably the key clue, among several, in assessing risk, and a score of 6, by itself without considering the other important clues, indicates low risk.

However, it's important to have an expert review the pathology who specializes in prostate cancer. Many general pathologists do not see enough of it to make totally reliable assessments, and the Gleason is very important. A very important book for you, "A Primer on Prostate Cancer -- The Empowered Patient's Guide," Dr. Stephen B. Strum, MD and Donna Pogliano, has a list of some leading pathologists, but you might be able to ascertain yourself whether yours was done by an expert. Getting second opinions on biopsies is very common in prostate cancer. (My original 3+4=7 was upgraded to 4+3=7, an important difference, in early 2000.)


Quote:
I had a bone scan done which appears to have come out negative for metastasis. I question that as I have had serious shoulder and wrist problems for the past 18 months that have gone un-diagnosed
Actually, bone and CT scans, formerly done routinely, so rarely indicate spread to the bone (or lymph nodes for CT scans) that leading medical organizations recently issued guidelines in the past two years urging that they not be done except in unusual circumstances, such as a high Gleason score and/or very elevated PSA levels (more than yours 15). I think it's likely the doctor would not have ordered the bone scan except for your physical symptoms. There are many other explanations for shoulder and wrist issues (neither a common site for first noticeable bone mets, I think). If you saw the scan or have a copy, does it show any bilateral dark spots - both wrists or both shoulders? That almost always indicates a cause by trauma, arthritis, or some other non-cancer cause. It is true that it takes about 10% of cancer in a bone site to be revealed as a dark spot, so you might still have a lurking cancer, but it seems quite unlikely in my now fairly savvy layman's opinion.

Quote:
I will meet with a surgeon in three weeks to discuss the possibility of having a radical prostatectomy.
I have the John's Hopkins 2011 prostate cancer white pages and have read them several times and feel like I'm up to speed on my condition
Not! Do you ever remind me of me! I was diagnosed in mid-December 1999 with a challenging case, and within a few weeks I thought I was sufficiently up to speed to make a decision. I chose surgery, basically basing my decision on the gross odds of each option, which would have almost certainly not cured me but likely left me with significant lasting side effects. Johns Hopkins rejected my request, rather bluntly, most fortunately, as I soon learned.

Among other invaluable resources, the Primer, which I mentioned above, has a set of the "Partin Tables" from Johns Hopkins (pages C3-C6 in my original edition of the Primer from 2002; the tables have been updated, but the differences are quite small). The tables lay out your chances of success with surgery in certain key areas: whether the disease would be "organ confined" (OC) after surgery, which is quite desirable; whether the prostate capsule - that thin rind-like membrane surrounding the prostate - is likely to have been penetrated (CP) - undesirable; whether the seminal vesicles are likely to have been infiltrated with cancer (SV) - not desirable of course; and finally whether the lymph nodes often sampled (expecially in past years, with current guidelines much less enthusiastic) as part of the surgery are likely to harbor cancer, which is not desirable of course. The odds for your case from those tables, with a PSA greater than 10, a Gleason of 5 to 6, and a stage of T1c if the prostate felt normal, but probably T2c if those cancers that were found could be felt by DRE, are as follows:

OC = 62% (T1c); 30% (T2c) - higher % is better
CP = 33% (T1c); 51% (T2c) - lower % is better
SV+ = 4% (T1c); 6% (T2c) - lower % is better
LN+ = 2% (T1c); 13% (T2c) - lower % is better

You can see quickly that you would have a little less than a two thirds shot at catching the cancer confined in the prostate by having surgery. While that's not terrible, the odds are not highly encouraging either. Surprisingly, failure to have a confined cancer does not always mean you face recurrence, though the odds go up considerably; nor does such failure mean you will die from the disease - many recurrences are quite mild. Still, capsular penetration or not being organ confined are considered indicators that the surgery was not successful.

On the good side, you can also see that it's extremely likely you caught it early enough so that it has not spread to either the seminal vesicles or the lymph nodes that are typically sampled by surgery.

The score that's driving the concern in your case is that PSA of 15. If there might be some infection involved, which would also likely boost PSA independent of cancer, that could alter the picture a lot. If you could get that PSA to drop to 10 or less, your odds would look like this:

OC = 90% (T1c); 73% (T2c) - higher % is better
CP = 9% (T1c); 24% (T2c) - lower % is better
SV+ = 0% (T1c); 1% (T2c) - lower % is better
LN+ = 0% (T1c); 1% (T2c) - lower % is better

You can see that those odds for surgical success are much higher.

Infections, which can wax and wane, can drive PSA to a much higher level that is mostly not due to cancer. A PSA that steadily rises in an "exponential" manner is likely cancer, the rise reflecting the division of cells from 1,000,000 to 2,000,000, then 2,000,000 to 4,000,000, and then 4,000,000 to 8,000,000, and so on each time the cells divide. There are other clues regarding whether there is an infection. The usual way of determining and defeating an infection is trial and error use of antibiotics, such as Cipro, to name just one. Did you have any of the typical symptoms for an infection?



Quote:
except...... I'm frustrated at not finding anyone else with such high PSA scores for a first time test at such a 'young' age. Is there anyone out there who is in my position?? I'm tired of hearing,"oh, My 80 year old grandpa has that". How can I possibly compare myself with that kind of situation?
I'm very glad that Rhonda has replied, giving you an example of a younger man with a higer risk case. I myself was only 56 when I was diagnosed back in late 1999. Thanks to widespread PSA testing in the US, a lot of us are having our cancers picked up at earlier ages. That usually gives us a great shot at a cure. My first ever PSA test at age 56 almost certainly gave me many more years of quality life and may have saved my life.

Quote:
Based on all the reading I have done on the subject, I feel the only viable treatment for me is the radical prostatectomy. Any feedback will be greatly appreciated. Thank you!!!:
I'm thinking your reading has focused on surgeons, and their attempts at being objective that too often involve presentation of obsolete information about other therapies, especially radiation therapy and hormonal blockade. Urologists are surgeons, and studies have proven they are typically extremely biased toward radiation; the same studies have proven that radiation oncologists are typically extremely biased toward radiation.

One of the best books on radiation is "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment that Can Save Your Life and Lifestyle," by Michael J. Dattoli, MD, Jennifer Cash, ARNP, MS, OCN and Don Kaltenbach, a prominent prostate cancer survivor. It too has elements of bias, but I feel it does a good job of coming close to objectivity.

Primary triple hormonal blockade in a one time course of a year to year and a half is also an option for you, though far from a typical option. The big knock against it is that it is not curative. However, it has some key advantages, including no incontinence, keeping your options open to switch to a curative therapy at a later date (by which time treatments almost certainly will have improved), and for virtually all, reversal of all side effects within months of going off the more potent drugs. I have a friend who has done that as sole therapy for his low-risk case, continuing Avodart since stopping the heavier duty drugs; he is now free from side effects, and his PSA has stabilized around 3.0. Intermittent triple blockade with finasteride maintenance as sole therapy has been my approach for my high risk case. I've been on full therapy three times, and I'm now in the ninth month of my third vacation period, free of all side effects and functioning as I was before being diagnosed (except for being eleven years older). This approach, as well as an outstanding look at other approaches, is well covered in the new book "Invasion of the Prostate Snatchers -- No More Unnecessary Biopsies, Radical Treatment, or Loss of Sexual Potency, [emphasis on unnecssary throughout, sometimes biopsies treatment and loss of potency are necessary, as addressed in the book]" by Ralph H. Blum (a survivor) and Mark Scholz, MD.

Take care, keep learning, and good luck,

Jim

 
Old 01-17-2011, 08:57 PM   #5
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Smile Re: First PSA 15.2

Thanks for all the valuable info and my screen name is very tongue-in-cheek as within a months time I had surgery on my foot, was diagnosed with carpal-tunnel syndrome and prostate cancer. My foot has since healed, my wrist is so bad I cannot pinch the clasp on my I.D. tag, and I'm obviously still in the starting gate of learning about PC. Thanks again and I will do much more research before moving forward.

 
Old 01-21-2011, 06:51 PM   #6
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Re: First PSA 15.2

Hi. I am new to this web site myself. In November I had a physical and they found that my PSA was 12.6 . I was sent to a Urologist and he recomended a biopsy due to the fact that he felt a hard spot during the DRE. Biopsy was done 1/4/11. Results were not good. positive for cancer in 9 of 12 needle biopsies. He ordered a bone scan and a CT. Will find out the results next week. My Gleason score is 4+4=8. I'm 54 years old. I do not know if any treatment option can be made untill results of bone scan and CT are known. It's not just "old guys" that get PC. Good Luck.

 
Old 09-04-2011, 11:59 AM   #7
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Re: First PSA 15.2

Quote:
Originally Posted by luckyxthree View Post
This is a 'club' I never wanted to join. I'm only 49 and have prostate cancer. I had two positive sites in my biopsy for cancer on opposing sides. My first and second PSA scores (taken 5 days apart in October 2010) were 15.2 and 14.9. My Gleason score is 3+3=6. I had a bone scan done which appears to have come out negative for metastasis. I question that as I have had serious shoulder and wrist problems for the past 18 months that have gone un-diagnosed I will meet with a surgeon in three weeks to discuss the possibility of having a radical prostatectomy.
I have the John's Hopkins 2011 prostate cancer white pages and have read them several times and feel like I'm up to speed on my condition except...... I'm frustrated at not finding anyone else with such high PSA scores for a first time test at such a 'young' age. Is there anyone out there who is in my position?? I'm tired of hearing,"oh, My 80 year old grandpa has that". How can I possibly compare myself with that kind of situation?
Based on all the reading I have done on the subject, I feel the only viable treatment for me is the radical prostatectomy. Any feedback will be greatly appreciated. Thank you!!!:
im 57 and have had prostat removed april 8th this year, prostat cancer can be found as young as 35 now.

 
Old 09-17-2011, 11:45 AM   #8
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Re: First PSA 15.2

Hello,

I am in the young club. (46) I was diagnosed in 2009- biopsy- surgery in Oct 2009. After the surgery the PSA was high- and I regretted the decision- lets get the darn thing out. I do have some spots on the bone, but prior to surgery, they were biopsied and this turned out negative. Well- the biopsy was wrong....lesson learned.

It is now Sept 2011, my PSA went down to less than .01-took a vacation from the drugs, but my latest climbed to 3.4 in a 3 month period of time. My oncologist gave me a Lupron shot- and some Zometa- but based on the rise- and based on the idea that the person I went to wasn't an expert- I moved to Loyola University, and the doctor is was even the President of the Society of Urological Oncology. I see him on Monday.

Things I have learned.

Trust your gut. If the doctor speaks loudly in the hall- "how long does it take for PSA to go down after RP to a colleague" I should have left. The second opinion was something I am doing 2 years too late.

Diet is a huge factor. When I was doing so well with things, my diet was great. During the jump (I know it cant be all diet) my diet was poor. I really need to be very diligent on diet.

I need to live and enjoy life to the fullest. My exercise is lower (shame on me), but I still can bike 25 miles- go on 4 mile hikes- and even enjoy a late night show at Caesars Palace in Las Vegas.

The information on Ask Dr. Myers is very helpful

I guess that's what is coming to mind. I am a lucky one with really no side effects to any of the treatments. But without the treatments- I guess the side effects are a moot point.... Life goes on and I know there are more things coming that can help me down the road....but the most important point which I don't do enough- I HAVE TO HELP MYSELF FIRST!!!

Good luck,

Tim

 
Old 10-09-2011, 02:10 AM   #9
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Re: First PSA 15.2

Welcome

If you have the time go to my RBK1111 thread or the RBK new thread to get my story.
Although older than you , now 69, and identifying an Gleason 6 a year ago, as has occurred with Jim, I became an "expert" in this area out of necessity. As I call it, our "uninvited guest" requires careful and considered evaluation, before any decision is made. As pointed out, presuming your cancer is contained within the capsule you may need to seriously consider radiation and/or a few months of monitoring (DRE's, PSA's Doppler monitoring, all supervised by a trusted prostate oncologist without bias toward a particular treatment. For example, after I "interviewed" a number of oncologists, determining that each had their own philosophy regardless of technical expertise, I chose one who sat down with me and layed out the likly results of every form of intervention. By this time I had read a number of books, went to original research, communicated with many in my position, visited this board and YANA, to name two, telephoned and spoke with those advocating everything from Cyberknife to HIFU, and began realizing that most were "guessing". Surgeons want to cut and radiologists radiate. At the end of the day, you have to determine your risk tolerance, priorities, inclouding your sex life and your own personal philosophy. For example, a good friend has a prostectomy and has been revisiting the issue for months because of what appear to be remnants of cancer in the prostate bed. I chose Active Surveillance because I have a very active sex life, read about too many surgeries that did not go the way one would hope, and the fact that most of us hearing the word "CANCER" need a change of underwear before we can think straight.

It is very important you read and listen before acting. When diagnosed I spent literally 24 hours a day at the computer for a week until I "got it". By contrast I have had a congential prolapsed valve which I monitored most of my life until it worried me enough to seek a remedy. The decision was easy. I chose Cleveland Clinic (17 years the top heart surgery center in the world), robotic throacotomy (do not have to spread sternum and was doing pushup within 2 weeks) and a surgeon who performed an average on one procedure a day (so he did not need to be looking at a manual while operating), that "repaired" the valve so it is like it was never a problem. This journey is much much different. There is not a straight line from diagnosis to treatment. There are simply too many unknowns and too many personable variables. On the other hand, this is a slow growing cancer most of the time allowing us to take a breath and be as certain as we can be of making the right decision for ourselves.

Best

 
Old 10-09-2011, 02:28 AM   #10
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Re: First PSA 15.2

It might be helpful to go to my RBK1111 thread or the RBK new thread to get my story.

Regardless of age , few want to die. In that respect we are all trying to figure out what makes the most sense.

When diagnosed a little over a year ago with a Gleason 6, I decided to become an "expert". I soon realized that every oncologist I spoke with was "guessing". It is very important you read and listen before acting. When diagnosed I spent literally 24 hours a day at the computer for an extended period of time until I "got it". I went to original research and better understood particular view points and why certain positions were held etc, etc.I visited sites like this, including YANA and learned from others.

When I found an oncologist I was comfortable with, now armed with enough information to "intelligently" discuss the matter, together we assessed every treatment option including Active Surveillance.

Given my active sex life and too many undesirable post surgical events, I elected AS.

Personally, I have had every test imaginable, beginning with biopsies (twice) to gather as much data as possible. After the first lab report I got another, after meeting with one oncologist I met with and spoke with several more. I had a bone scan, ct , mri, periodic dopplers, frequent psa's, and meetings with an oncologist I can relate with.

Again, this is a bit more challenging than other problems. For example, I required surgery for a congential heart problem and the decision was easy. I chose the Cleveland Clinic (17 years the top heart surgery center in the world), robotic thoracotomy (do not have to spread sternum and was doing pushups within 2 weeks) and a surgeon who performed an average of one procedure a day (so he did not need to be looking at a manual while operating), that "repaired" the valve, never to be worried about again.

This journey is not a straight line from diagnosis to treatment. There are simply too many unknowns and too many personal variables. On the other hand, this is a slow growing cancer most of the time . allowing us to take a breath and be as certain as we can be of making the right decision for ourselves.

Best

Last edited by RBK1111; 10-09-2011 at 02:44 AM.

 
Old 10-10-2011, 01:59 AM   #11
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Re: First PSA 15.2

luckyxthree,
Check out Proton Therapy at Loma Linda University Medical Center in California, proton support groups, and research other treatments also. I had a failed surgery in Canada and then proton salvage at Loma Linda.

Radical Prostatectomey is a major surgery and many men have side effects such as incontinence and impotence. The handful of people I met who had robotic surgery all suffered from these side effects. There are several radiation therapies you need to consider of which I chose Proton Beam Therapy for my salvage due to the high cure rate and low rate of side effects. Don't jump into surgery as there is at least one superior treatment based on my personal experience.
Bob

 
Old 10-22-2011, 04:51 AM   #12
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Re: First PSA 15.2

I am 56 yrs of age, was diagnosed with prostrate cancer in May of 2011. Biopsies came back with right and left sides positive. Gleason score of 8. Radical prostectetomy done Sept 26,2011.First day up and walking 3 -4 times without to much discomfort. I was in and out of hospital within 48 hrs. Cathiter out Oct 14,2011. big relief! Cathiter the worst discomfort of the whole surgery. The lack of bladder control was a bit of a shock the first few days, however 6 days later it is still not great.

 
Old 10-22-2011, 01:30 PM   #13
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Re: First PSA 15.2

Wayner Mack,
I had good control after my RP except stress incontinence. You know you step off a curb and squirt, you sit down, you twist to pick up something, etc. A couple of months after surgery I started hiking and as I live in a mountainous area there was lot's of uphill and downhill as well as crawling over or under logs etc. I remember coming off the mountain after my first hike with the front of my pants sopping wet and after that I wore a pad. I believe that this helped my incontinence as I used all my muscles, connective tissues, and just relaxed in private stomping through the bush. I think getting some exercise off the sidewalk and where you have to reach and twist in moderation helps your recovery.
Good luck,
Bob

 
Old 03-07-2012, 11:33 AM   #14
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Re: First PSA 15.2

Luckyxthree
I too am on the younger side of this club I was diagnosed in February 2011 at age 50. My first PSA came in at 18.2, gleason 4+3=7, biopsy showed 6 of 12 cores positive all at 100% 4 from 0ne side 2 from the other. I elected to do a cobination of HDR Brachytherapy and IMRT summer of 2011.

I tolerated the treatments quite well and had virtually no side effects other than fatigue and urgency to urinate. PSA testing post treatment has gone pretty good 6 weeks post treatment 0.14, 3 months 0.13 5 months, 0.19 and latest 7 months 0.42 an increase that may be of some concern but will test again in 2 months to see what is going on then.

 
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