Looking for Answers in Virginia
Comments
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PSA Rangeerisian said:Don't Rush
That's the first thing. Most of the treatment options cause irreversible changes.
What is your PSA history?
2.2 is well within the normal range, so why did you get a biopsy?
Completely understand...this was my first test. I went in because I was experiencing some slight pressure urinating. It was the strangest thing...only to my knowledge occurring in that morning whiz! Upon thinking it was kind of strange, I went into my family physician for a check-up which resulted in me being sent to a urologist for further diagnosis. He noted that the prostate was slightly enlarged and prescribed antibiotics as a first show of defense for prostatitis. Went back in three weeks...apparently, the inflammation went away...free to PSA was 10.3. As a precaution, he elected that I get the biopsy. Still don't know how many biopsy needles were positive. I believe the driving factor was the low free to PSA. I'm going in tomorrow to see my urologist for the first time after the biopsy.0 -
Overdiagnosed?07SHNNAC7081522 said:PSA Range
Completely understand...this was my first test. I went in because I was experiencing some slight pressure urinating. It was the strangest thing...only to my knowledge occurring in that morning whiz! Upon thinking it was kind of strange, I went into my family physician for a check-up which resulted in me being sent to a urologist for further diagnosis. He noted that the prostate was slightly enlarged and prescribed antibiotics as a first show of defense for prostatitis. Went back in three weeks...apparently, the inflammation went away...free to PSA was 10.3. As a precaution, he elected that I get the biopsy. Still don't know how many biopsy needles were positive. I believe the driving factor was the low free to PSA. I'm going in tomorrow to see my urologist for the first time after the biopsy.
It doesn't sound like it with a Gleason 7, but it fits the model of one PSA and a biopsy. Given your young age, it is more likely to be an aggressive cancer, but there is insufficient information at this point. The PSA number is low, and since you have only had one PSA test, there is no way to tell whether or not it is rising, and if so, how fast. The PSA doubling time is a more important indicator of aggressiveness than the PSA number itself, and you don't have that information yet.
So on that basis, I would say that you should consider getting another PSA in 2 or 3 months, and waiting until after that to make any treatment decisions. Then, even if the second PSA is up, you might want to get another one after that to confirm the trend. There are factors that can affect individual PSA tests, as my oncologist reminds me periodically, so it is unwise to make any important treatment decisions based on a single test. When I've been on chemo, it would only be discontinued after a rise in three consecutive tests, for example, and I have had it bounce along for months at a time with a test every three weeks and no clear trend in any direction.
The overdiagnosis problem is real, apparently, just to make things more confusing for men in your situation. See: http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php
On the other hand, that is just one more reason not to rush into a treatment decision.0 -
Hi
Sorry that you have joined this club......generally during the first couple of months, most if not all of us go thru shock, depression and all the negative feelings associated with this.
It is a good idea to get a copy of your biopsy report, and all medical data so you can have it available to go to various doctors, support groups, etc.
YOu also want to have the parrifin blocks of your biopsy sent for a second opinion, determining the gleason score is a complicated process and you want to have an expert review this............Dr. Epstein, Johns Hopkins is a great choice.....simply contact your docs office and have then send the blocks.
My opinion is a little different than the above poster.......although psa's are basic indicators of trend, the biopsy is the more concrete information
There is a test called an endorectol MRI with a spectroscopy that will stage your disease, and indicate nodule involements if any, and where they are located.......the mri is covered by insurance however the spectroscopy is consided investigational and is not covered.
Anyway, get back to us, let us know how many cores were taken, how many positive, the amount of involvement and gleason score of each.
Also take a deep breath
We are all with you
Ira0 -
Where It's Headedhopeful and optimistic said:Hi
Sorry that you have joined this club......generally during the first couple of months, most if not all of us go thru shock, depression and all the negative feelings associated with this.
It is a good idea to get a copy of your biopsy report, and all medical data so you can have it available to go to various doctors, support groups, etc.
YOu also want to have the parrifin blocks of your biopsy sent for a second opinion, determining the gleason score is a complicated process and you want to have an expert review this............Dr. Epstein, Johns Hopkins is a great choice.....simply contact your docs office and have then send the blocks.
My opinion is a little different than the above poster.......although psa's are basic indicators of trend, the biopsy is the more concrete information
There is a test called an endorectol MRI with a spectroscopy that will stage your disease, and indicate nodule involements if any, and where they are located.......the mri is covered by insurance however the spectroscopy is consided investigational and is not covered.
Anyway, get back to us, let us know how many cores were taken, how many positive, the amount of involvement and gleason score of each.
Also take a deep breath
We are all with you
Ira
I agree that the biopsy is certainly a more concrete indicator than the PSA of where it's at, especially since his PSA is only 2.2, but neither says where it's headed. That should be known before any decision is made.0 -
Wellerisian said:Where It's Headed
I agree that the biopsy is certainly a more concrete indicator than the PSA of where it's at, especially since his PSA is only 2.2, but neither says where it's headed. That should be known before any decision is made.
I'm thinking that if the biopsy shows that the cancer is more advanced, the time that it takes to measure a trend based on the psa would be to a disadvantage. Medical treatment might be needed soomer than later.
By the way , there is a molecular test put out by Aureon that gives some indication of the aggressiveness of the cancer.
There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-72840 -
Good Infohopeful and optimistic said:Well
I'm thinking that if the biopsy shows that the cancer is more advanced, the time that it takes to measure a trend based on the psa would be to a disadvantage. Medical treatment might be needed soomer than later.
By the way , there is a molecular test put out by Aureon that gives some indication of the aggressiveness of the cancer.
There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
Thanks for the feedback guys...I'm under the impression as in the result of a positive biopsy that the PSA test conducted has instrumental value, but not as concrete as the biopsy, i.e., "seeing is believing." With the evidence directly in front of me, I'm trying to rationalize with waiting to see of the PSA goes up, getting a second opinion, ...etc. I know its there, so my estimation is to resolve the issue by eliminating the problem. I'm struggling with did I detect it soon enough?...why didn't my physician start screening me at age 40?, what's the best alternative for mid-40 year olds? Its almost ridiculous...I can't say that I'm in the best shape of my life, but clearly I'm not far from it. I go to the Doc today at 4:00 pm...armed with (it seems...) limitless information. Any recommendation for posed questions?0 -
Good Question!07SHNNAC7081522 said:Good Info
Thanks for the feedback guys...I'm under the impression as in the result of a positive biopsy that the PSA test conducted has instrumental value, but not as concrete as the biopsy, i.e., "seeing is believing." With the evidence directly in front of me, I'm trying to rationalize with waiting to see of the PSA goes up, getting a second opinion, ...etc. I know its there, so my estimation is to resolve the issue by eliminating the problem. I'm struggling with did I detect it soon enough?...why didn't my physician start screening me at age 40?, what's the best alternative for mid-40 year olds? Its almost ridiculous...I can't say that I'm in the best shape of my life, but clearly I'm not far from it. I go to the Doc today at 4:00 pm...armed with (it seems...) limitless information. Any recommendation for posed questions?
How many cores were positive?
Out of how many cores?
Should we send them out for a second-opinion staging workup?
Have you seen the Dartmouth overdiagnosis study, and if so, what is your opinion of it?
Is this an aggressive cancer, or not, and what is that opinion based on?
Do I need to act fast, or is it safe to take some time to decide?
Should we do one or two more PSA tests to establish a trend and get a PSADT?
Do you think that "Active Surveillance" might be a sensible approach?
Would you recommend a molecular test?
What percentage of prostate cancer patients are my age or younger?
Do you know of any local prostate cancer support groups?
And the all-time winner:
If you were in my position, what would *you* do, and why?
If you aren't satisfied with an answer, then keep asking questions until you are.
I certainly understand the desire to "just get it out". It's the natural reaction to a cancer diagnosis, but it may or may not be the wisest course of action. And remember whenever you are talking with doctors that when all you have is a hammer, everything looks like a nail. So a surgeon will probably recommend surgery, a radiation oncologist will probably recommend radiation, etc...
Your doctor didn't start screening at 40 because the guidelines say start at 50, unless there is a family history, then 45. So you are very young to have this. That, by itself, points to two likely possibilities -- either it is an aggressive cancer, or it has been detected at a very early stage, or both.
Best wishes for an informative meeting and a good prognosis!0 -
Very Informative Meetingerisian said:Good Question!
How many cores were positive?
Out of how many cores?
Should we send them out for a second-opinion staging workup?
Have you seen the Dartmouth overdiagnosis study, and if so, what is your opinion of it?
Is this an aggressive cancer, or not, and what is that opinion based on?
Do I need to act fast, or is it safe to take some time to decide?
Should we do one or two more PSA tests to establish a trend and get a PSADT?
Do you think that "Active Surveillance" might be a sensible approach?
Would you recommend a molecular test?
What percentage of prostate cancer patients are my age or younger?
Do you know of any local prostate cancer support groups?
And the all-time winner:
If you were in my position, what would *you* do, and why?
If you aren't satisfied with an answer, then keep asking questions until you are.
I certainly understand the desire to "just get it out". It's the natural reaction to a cancer diagnosis, but it may or may not be the wisest course of action. And remember whenever you are talking with doctors that when all you have is a hammer, everything looks like a nail. So a surgeon will probably recommend surgery, a radiation oncologist will probably recommend radiation, etc...
Your doctor didn't start screening at 40 because the guidelines say start at 50, unless there is a family history, then 45. So you are very young to have this. That, by itself, points to two likely possibilities -- either it is an aggressive cancer, or it has been detected at a very early stage, or both.
Best wishes for an informative meeting and a good prognosis!
Good Morning Gentlemen! Just off my initial meeting with my doctor. 5 needles of 12 were positive. Looks like the majority of the PC is 3+3 (in two areas; 4 of the 5 needles) and one area was 3+4 (have to look at my notes...) All questions answered...my research proved to be very beneficial. He laid out all the stops...radiation, cryo, da vinci...I threw out there proton therapy. I didn't realize proton therapy was so expensive...I mean I knew it was somewhat expensive...but apparently it's significantly higher. All good treatment therapy, but considering the fact that its most likely localized, the fact of non-palpability and being good candidate for nerve sparing (...especially with the 3+4 in there), I believe its best to remove the gland for a better survivability rate for the future. The biopsy has been reviewed twice by two different pathologists...I don't think by way of the diagnosis that a second opinion is viable...the PC is definitely there. I don't know of the percentages of men my age who have PC in general...in this area, my doc noted on one hand the people that he's treated bringing to my attention that the percentage is significantly lower than the norm which means that the risk is higher regarding my vulnerability of a more aggressive type of PC (my interpretation). I think it's best that I move forward for the preservation of life...and that is to remove...most likely via Da Vinci.0 -
VA BEACH AS WELL07SHNNAC7081522 said:Very Informative Meeting
Good Morning Gentlemen! Just off my initial meeting with my doctor. 5 needles of 12 were positive. Looks like the majority of the PC is 3+3 (in two areas; 4 of the 5 needles) and one area was 3+4 (have to look at my notes...) All questions answered...my research proved to be very beneficial. He laid out all the stops...radiation, cryo, da vinci...I threw out there proton therapy. I didn't realize proton therapy was so expensive...I mean I knew it was somewhat expensive...but apparently it's significantly higher. All good treatment therapy, but considering the fact that its most likely localized, the fact of non-palpability and being good candidate for nerve sparing (...especially with the 3+4 in there), I believe its best to remove the gland for a better survivability rate for the future. The biopsy has been reviewed twice by two different pathologists...I don't think by way of the diagnosis that a second opinion is viable...the PC is definitely there. I don't know of the percentages of men my age who have PC in general...in this area, my doc noted on one hand the people that he's treated bringing to my attention that the percentage is significantly lower than the norm which means that the risk is higher regarding my vulnerability of a more aggressive type of PC (my interpretation). I think it's best that I move forward for the preservation of life...and that is to remove...most likely via Da Vinci.
Are the doctors that you have mentioned at Sentara really good?
I have decided on surgery, open or Da Vinci. Just looking for
who's got the most experience in their field. Good luck.0 -
You have probably all ready07SHNNAC7081522 said:Very Informative Meeting
Good Morning Gentlemen! Just off my initial meeting with my doctor. 5 needles of 12 were positive. Looks like the majority of the PC is 3+3 (in two areas; 4 of the 5 needles) and one area was 3+4 (have to look at my notes...) All questions answered...my research proved to be very beneficial. He laid out all the stops...radiation, cryo, da vinci...I threw out there proton therapy. I didn't realize proton therapy was so expensive...I mean I knew it was somewhat expensive...but apparently it's significantly higher. All good treatment therapy, but considering the fact that its most likely localized, the fact of non-palpability and being good candidate for nerve sparing (...especially with the 3+4 in there), I believe its best to remove the gland for a better survivability rate for the future. The biopsy has been reviewed twice by two different pathologists...I don't think by way of the diagnosis that a second opinion is viable...the PC is definitely there. I don't know of the percentages of men my age who have PC in general...in this area, my doc noted on one hand the people that he's treated bringing to my attention that the percentage is significantly lower than the norm which means that the risk is higher regarding my vulnerability of a more aggressive type of PC (my interpretation). I think it's best that I move forward for the preservation of life...and that is to remove...most likely via Da Vinci.
You have probably all ready heard it mentioned but if you go with DaVinci look for a surgeon with ton's of experience. Not 100's....Look for someone in the 1000 + range.
It has a high learning curve and the ones with the most skill will do the best when it comes to nerve sparing. Very delicate portion of the surgery.
Larry Age 55 (7 months post davinci)0 -
Stress Less
I had a very aggressive cancer with psa of 24 and gleason 9 at age 52. It had already spread and I was given one shot of lupron to shrink the tumor and then radiation treatments. You do not need hormones but you might want to think about avoiding surgery and just take radiation. It killed ALL the cancer in my totally cancerous prostate. I have no side effects from the radiation and am still working and playing 7 years later after being given 2 years to live if lucky. Mostly, just do not stress about this. You will be fine and once you make the decision to do something just be sure you were the only one who made it.0 -
Brachytherapy?2ndBase said:Stress Less
I had a very aggressive cancer with psa of 24 and gleason 9 at age 52. It had already spread and I was given one shot of lupron to shrink the tumor and then radiation treatments. You do not need hormones but you might want to think about avoiding surgery and just take radiation. It killed ALL the cancer in my totally cancerous prostate. I have no side effects from the radiation and am still working and playing 7 years later after being given 2 years to live if lucky. Mostly, just do not stress about this. You will be fine and once you make the decision to do something just be sure you were the only one who made it.
You didn't mention that one. Just wondering if you discussed that, or if it's not a viable option in your case. It might preserve your fertility, which any of the removal options will not.0 -
I wonder what was the involvement of each positive core?, what07SHNNAC7081522 said:Good Info
Thanks for the feedback guys...I'm under the impression as in the result of a positive biopsy that the PSA test conducted has instrumental value, but not as concrete as the biopsy, i.e., "seeing is believing." With the evidence directly in front of me, I'm trying to rationalize with waiting to see of the PSA goes up, getting a second opinion, ...etc. I know its there, so my estimation is to resolve the issue by eliminating the problem. I'm struggling with did I detect it soon enough?...why didn't my physician start screening me at age 40?, what's the best alternative for mid-40 year olds? Its almost ridiculous...I can't say that I'm in the best shape of my life, but clearly I'm not far from it. I go to the Doc today at 4:00 pm...armed with (it seems...) limitless information. Any recommendation for posed questions?
percent involvement? you gave the gleason, but not the involvement.
As far as surgery, you get only one operation...ONE....one chance to do it right...no do overs....so even if you need to travel to timbucktoo...get the best.........John Hopkins might be a good choice for you......YOU WANT A SUPERSTAR
Ira0 -
You only get to do this07SHNNAC7081522 said:PSA Range
Completely understand...this was my first test. I went in because I was experiencing some slight pressure urinating. It was the strangest thing...only to my knowledge occurring in that morning whiz! Upon thinking it was kind of strange, I went into my family physician for a check-up which resulted in me being sent to a urologist for further diagnosis. He noted that the prostate was slightly enlarged and prescribed antibiotics as a first show of defense for prostatitis. Went back in three weeks...apparently, the inflammation went away...free to PSA was 10.3. As a precaution, he elected that I get the biopsy. Still don't know how many biopsy needles were positive. I believe the driving factor was the low free to PSA. I'm going in tomorrow to see my urologist for the first time after the biopsy.
You only get to do this right once...so my advise is to select your poison based on experience and successful stats of the doc doing the treatment...If you need to travel, travel...I flew back to Atlanta from Chicago 2 1/2 days after surgery (I had the Open RRP not robotics)...
Best of luck and God bless you in this journey0 -
Sentara General Doc'sFeb2010 said:VA BEACH AS WELL
Are the doctors that you have mentioned at Sentara really good?
I have decided on surgery, open or Da Vinci. Just looking for
who's got the most experience in their field. Good luck.
These guys are really good...downside...you can't get in there to get the ball rolling. Interesting today I received the call to get my initial consultation for the surgeon of my choice...they told me I could get in there on the 26th...I was like "that's quick..." That's when the receptionist stated...26th of April. That's nearly a month from now; not to mention the potential two month wait to get the surgery done. I definitely didn't like that at all..0 -
Brachtherapyerisian said:Brachytherapy?
You didn't mention that one. Just wondering if you discussed that, or if it's not a viable option in your case. It might preserve your fertility, which any of the removal options will not.
Erisian - the seeds were an option of consideration. I'm just more in concert with total removal at this point...0 -
Good Questionhopeful and optimistic said:I wonder what was the involvement of each positive core?, what
percent involvement? you gave the gleason, but not the involvement.
As far as surgery, you get only one operation...ONE....one chance to do it right...no do overs....so even if you need to travel to timbucktoo...get the best.........John Hopkins might be a good choice for you......YOU WANT A SUPERSTAR
Ira
I need to further expand on that question with my doctor...that's the one question I did not ask. As far as travelling to timbucktoo, how would arrangements like that work? John Hopkins was in fact my first choice of preference, but the logistics of it all...I'm open to flying up there, (it's no more than a skip and a jump from Norfolk) but I would think that there would be some challenges with flying back or for that matter, would I be allowed to fly back. Where would I stay...as I said, that is what I really wanted to do in the first place...any thoughts?0 -
Hi again07SHNNAC7081522 said:Good Question
I need to further expand on that question with my doctor...that's the one question I did not ask. As far as travelling to timbucktoo, how would arrangements like that work? John Hopkins was in fact my first choice of preference, but the logistics of it all...I'm open to flying up there, (it's no more than a skip and a jump from Norfolk) but I would think that there would be some challenges with flying back or for that matter, would I be allowed to fly back. Where would I stay...as I said, that is what I really wanted to do in the first place...any thoughts?
You need to have a copy of all your medical records, so you can go from doc to doc....get a copy of the biopsy report, psa report and any other information from your doc...simply call the office.....
Make the appt with johns hopkins.....there are hospital social workers that will help with arrangements, apartments , hotels, support personnel or whatever is needed....
the surgeon will know , or will direct you. ....arrangements at the hospital are only details.
Ira0 -
Hello Hopefulhopeful and optimistic said:Hi again
You need to have a copy of all your medical records, so you can go from doc to doc....get a copy of the biopsy report, psa report and any other information from your doc...simply call the office.....
Make the appt with johns hopkins.....there are hospital social workers that will help with arrangements, apartments , hotels, support personnel or whatever is needed....
the surgeon will know , or will direct you. ....arrangements at the hospital are only details.
Ira
Called up to Johns Hopkins today...consultation could not take place with Dr Allaf until the end of April...still looking at two months minimum before I could get the work done...is that pretty typical these days? My buddy who had this procedure done three years ago...within two weeks of the diagnosis, he was in the batter's box. Have things changed that much?0
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