Dad doesn't know what procedure is best

13

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Gleason of 8 was a false number
    Thanks so much Trew...the Gleason of 8 was fortunately misinformation. In relaying info my Dad confused the Gleason with the PSA...terrified me...

    Old Gleason was 6...new one is 4...I am due in next week to the states and we will go to get a second opinion...hoping all will be good...

    I heard that the hormone shots were truly terrible...so I hope it doesn't come to that either...

    thank you Trew... I will continue to keep updating...I appreciate everyones support and knowledge...

    Hi Sandy
    As you can see pretty much the same people are here to help.

    Well.....I can be wrong but there is not a 2+2=4 gleason....I believe that 6 or maybe 5 is the lowest that is currently reported...but if it is only one core of a 2+2=4 or even a 3+3+6 your father can happily go on with his life, doing active surveillance....and he probably has what is indolent cancer, not likely to spread.

    Please answer these questions for me.

    How many cores were taken?

    How many were positive?

    Wjat is the gleason of each?

    What is the involvement of each, that is what is the percent positive in each core?

    Did you get a second opinion of the pathology from a different institution, if not you need to?

    Ira
  • BRONX52
    BRONX52 Member Posts: 156

    Hi Sandy
    As you can see pretty much the same people are here to help.

    Well.....I can be wrong but there is not a 2+2=4 gleason....I believe that 6 or maybe 5 is the lowest that is currently reported...but if it is only one core of a 2+2=4 or even a 3+3+6 your father can happily go on with his life, doing active surveillance....and he probably has what is indolent cancer, not likely to spread.

    Please answer these questions for me.

    How many cores were taken?

    How many were positive?

    Wjat is the gleason of each?

    What is the involvement of each, that is what is the percent positive in each core?

    Did you get a second opinion of the pathology from a different institution, if not you need to?

    Ira

    SANDY
    I AGREE WITH IRA. I NEVER HEARD OF A GLEASON 4. I GUESS IT'S POSSIBLE BUT I NEVER HEARD OF IT NOR DID ANY OF MY DOCTORS EVER MENTION IT. BUT IF IT IS A 4 OR 6 I THINK YOUR DAD IS IN A GOOD POSITION AS FAR AS TREATMENT IS CONCERNED. GOOD LUCK IN WHATEVER COURSE YOU CHOOSE--

    DAN
  • Trew
    Trew Member Posts: 932 Member
    BRONX52 said:

    SANDY
    I AGREE WITH IRA. I NEVER HEARD OF A GLEASON 4. I GUESS IT'S POSSIBLE BUT I NEVER HEARD OF IT NOR DID ANY OF MY DOCTORS EVER MENTION IT. BUT IF IT IS A 4 OR 6 I THINK YOUR DAD IS IN A GOOD POSITION AS FAR AS TREATMENT IS CONCERNED. GOOD LUCK IN WHATEVER COURSE YOU CHOOSE--

    DAN

    Gleason of 4
    Technically, a 4 is possible from the chart I saw on the wall of my U of MI doc that had all the Gleason grades clearly illustrated and rated. Time to just wait about more clarification.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Update on latest Biopsy
    Dad opted to have the second biopsy as planned.

    This time he said they did it in a different manner...the first time he was placed in stirups ...with this measurement he got 3+3=6, this time he lay on his left side and got 2+2= 4. Naturally we realise this doesn't mean that it is going away, but that was taken at a different area.

    I will be home next week and will go to the cancer hospital with Dad for a second opinion when I am home. We will then take it from there...

    I will continue to keep you all up to date and wish you all continued good health...your information and support is making all this much easier to deal with...I sincerely that each and everyone of you...

    Good News
    That is very good news. Looks like there are many options.
  • 142
    142 Member Posts: 169

    Hi Sandy
    As you can see pretty much the same people are here to help.

    Well.....I can be wrong but there is not a 2+2=4 gleason....I believe that 6 or maybe 5 is the lowest that is currently reported...but if it is only one core of a 2+2=4 or even a 3+3+6 your father can happily go on with his life, doing active surveillance....and he probably has what is indolent cancer, not likely to spread.

    Please answer these questions for me.

    How many cores were taken?

    How many were positive?

    Wjat is the gleason of each?

    What is the involvement of each, that is what is the percent positive in each core?

    Did you get a second opinion of the pathology from a different institution, if not you need to?

    Ira

    Gleason
    The Gleason scale goes from 1 to 5, but I was told by my uro that Bostwick reports only 3 or higher. However, in this case, being a second reading, their lab may have reported a 2 to be clear (i.e. not benign, but not off the charts either).
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    142 said:

    Gleason
    The Gleason scale goes from 1 to 5, but I was told by my uro that Bostwick reports only 3 or higher. However, in this case, being a second reading, their lab may have reported a 2 to be clear (i.e. not benign, but not off the charts either).

    Gleason
    This is my take as well....there are lower gleason scores, but 3+3=6 is the lowest reported, ...it's probably a good idea that a 2+2=4 is reported instead of a 3+3=6, however this is not typical... my understanding is that this is a new biopsy, and a first reading.

    Ira
  • 142
    142 Member Posts: 169
    142 said:

    Gleason
    The Gleason scale goes from 1 to 5, but I was told by my uro that Bostwick reports only 3 or higher. However, in this case, being a second reading, their lab may have reported a 2 to be clear (i.e. not benign, but not off the charts either).

    second biopsy
    I saw that there was a second biopsy, and presume that there was indication to the lab that there had been a prior one (this was a clear paragraph of my report - noting that there had been no previous tests/reports).
    Thus my thought that they might have tried to be more precise.
    "second reading" meaning of the case, not a "second opinion" of a single biopsy.
  • daughter27
    daughter27 Member Posts: 38

    Hi Sandy
    As you can see pretty much the same people are here to help.

    Well.....I can be wrong but there is not a 2+2=4 gleason....I believe that 6 or maybe 5 is the lowest that is currently reported...but if it is only one core of a 2+2=4 or even a 3+3+6 your father can happily go on with his life, doing active surveillance....and he probably has what is indolent cancer, not likely to spread.

    Please answer these questions for me.

    How many cores were taken?

    How many were positive?

    Wjat is the gleason of each?

    What is the involvement of each, that is what is the percent positive in each core?

    Did you get a second opinion of the pathology from a different institution, if not you need to?

    Ira

    coming home
    Flying home tomorrow so will be heading for second opinion etc. with Dad.

    A Urologist friend here says that if PSA is rising its time to do something...she suggests radiation since it is a proven method....lets see what happens...

    I am hoping for the best.

    thanks as always and I hope that you continue to be well Ira,

    Sandy
  • daughter27
    daughter27 Member Posts: 38
    Kongo said:

    Good News
    That is very good news. Looks like there are many options.

    :)
    Hope so Kongo...trying to keep positive and be open. :)
  • daughter27
    daughter27 Member Posts: 38
    142 said:

    second biopsy
    I saw that there was a second biopsy, and presume that there was indication to the lab that there had been a prior one (this was a clear paragraph of my report - noting that there had been no previous tests/reports).
    Thus my thought that they might have tried to be more precise.
    "second reading" meaning of the case, not a "second opinion" of a single biopsy.

    142
    He indeed had a second biopsy since his PSA had risen to 8....

    the second reading was lower 2 + 2 = 4 but the Dr. basically said it means nothing since the earlier Gleason was 3+3=6...basically it sounds to me like the dr. just wanted to be sure it wasn't a higher number.

    We will get a second opinion hopefully next week ...
  • daughter27
    daughter27 Member Posts: 38
    BRONX52 said:

    SANDY
    I AGREE WITH IRA. I NEVER HEARD OF A GLEASON 4. I GUESS IT'S POSSIBLE BUT I NEVER HEARD OF IT NOR DID ANY OF MY DOCTORS EVER MENTION IT. BUT IF IT IS A 4 OR 6 I THINK YOUR DAD IS IN A GOOD POSITION AS FAR AS TREATMENT IS CONCERNED. GOOD LUCK IN WHATEVER COURSE YOU CHOOSE--

    DAN

    bronx
    The dr. says he will continue to go with the earlier reading...I think its only an indication that where he checked this time the number was low.

    I think he was making sure that the gleason hadnt risen since the psa had...

    thank you Dan.. ;)
  • daughter27
    daughter27 Member Posts: 38
    Trew said:

    Gleason of 4
    Technically, a 4 is possible from the chart I saw on the wall of my U of MI doc that had all the Gleason grades clearly illustrated and rated. Time to just wait about more clarification.

    wating
    Yes I am hoping it will all be clearer when I get in. ;)
  • Kongo
    Kongo Member Posts: 1,166 Member

    coming home
    Flying home tomorrow so will be heading for second opinion etc. with Dad.

    A Urologist friend here says that if PSA is rising its time to do something...she suggests radiation since it is a proven method....lets see what happens...

    I am hoping for the best.

    thanks as always and I hope that you continue to be well Ira,

    Sandy

    Next Steps
    Sandy,

    Hope you have safe travels back from Europe. Your urologist friend is probably right that with a rising PSA your father ought to be considering options, but first be sure that the PSA rise is not caused by something like prostatitus, BPH, or even a lot of sex, all of which are benign causes for a PSA increase and the prostitus and BPH are fairly common for a man your father's age. If your doctors rule out those, then make sure you get enough second opinions to really know what the potential side effects of all the choices your father has will be on his lifestyle.

    Surgery, brachytherapy, conventional readiation, IMRT, Cyberknife, proton, cyrosurgery, HDR brachytherapy, all have excellent effects for early stage PCa but each has very different potential side effects.

    Keep us posted and good luck. Your father is lucky to have you for support.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    coming home
    Flying home tomorrow so will be heading for second opinion etc. with Dad.

    A Urologist friend here says that if PSA is rising its time to do something...she suggests radiation since it is a proven method....lets see what happens...

    I am hoping for the best.

    thanks as always and I hope that you continue to be well Ira,

    Sandy

    Have a good trip.....relax a little...but do research....
    Remember that your father has lots of options for treatment since his gleason number is low.....active surveillance may or may not be one of the treatments that is available. You mentioned that you father has various health conditions. If they would impact your fathers life expectency this will be part of the decision.

    There is a National Comprehensive Cancer Network Guideline in Oncology for Prostate Cancer www.nccn.org which gives guidelines for different stages of prostate cancer diagnosis with different expected life expectancies....you may wish to access this.

    Although his PSA is under 10,the rising PSA is troublsome, however it is an indicator only....the biopsy is the critical information.

    There is a test, it's an MRI, that will more closely show whats happening with your father...I had this test, double click my name to access this and other pertinent information. Only cetain institutions are equiped to give this test.

    MRI

    There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

    The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

    The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

    The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.

    Wishing you and your father the best.

    Ira
  • pcolin71
    pcolin71 Member Posts: 10
    what I did
    71 yo, gleason 6,
    I had seed implant on May 17, go for results of psa on sept 28.
    Only problem is burning when urinate.
    Very happy with Rex Hosp. in Raleigh,nc with Dr Bennett.
    Be happy to talk with. 919-365-5976
  • Bizman
    Bizman Member Posts: 4
    pcolin71 said:

    what I did
    71 yo, gleason 6,
    I had seed implant on May 17, go for results of psa on sept 28.
    Only problem is burning when urinate.
    Very happy with Rex Hosp. in Raleigh,nc with Dr Bennett.
    Be happy to talk with. 919-365-5976

    Another Idea
    I was 60 when I had a robotic prostatectomy. In retrospect, I shouldn't have done it.

    If I were 71, I would rather live another 10 years as a normal man rather than another 15 wearing pads and not having erections. I do not like what has happened to my quality of live since the surgery.

    Prostate cancer has become a high interest item in the last few years and the number of prostatectomies has soared. It's a big selling surgery. My first urologist did a biopsy with the lab work done by a pathologist within the same doctor's medical group. My cancer was rated as 4+3=7 and told it was borderline agressive. They suggested immediate surgery (the old "open" technique). My wife was extremely concerned so I looked for another opinion settling on a urologist who had done hundreds of the robotic surgery. Long story short, the lab report after my prostate was removed was graded as 3+4=7 and was only 5% of my prostate, by mass. Not nearly as bad as initially suggested. I suspect, maybe wrongly, that prostate surgery was a real money maker for the first urologist and wanted to sell it to me.

    I am not ready to accept the end of my sexual life or overall quality of live just to add a few years. Wearing pads, smelling of urine, having a 12-year old's penis and worrying about shooting pee during sex isn't my idea of a fun way to the rest of my life. If I were a bit older, I would have never done it.

    But, that's me.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Bizman said:

    Another Idea
    I was 60 when I had a robotic prostatectomy. In retrospect, I shouldn't have done it.

    If I were 71, I would rather live another 10 years as a normal man rather than another 15 wearing pads and not having erections. I do not like what has happened to my quality of live since the surgery.

    Prostate cancer has become a high interest item in the last few years and the number of prostatectomies has soared. It's a big selling surgery. My first urologist did a biopsy with the lab work done by a pathologist within the same doctor's medical group. My cancer was rated as 4+3=7 and told it was borderline agressive. They suggested immediate surgery (the old "open" technique). My wife was extremely concerned so I looked for another opinion settling on a urologist who had done hundreds of the robotic surgery. Long story short, the lab report after my prostate was removed was graded as 3+4=7 and was only 5% of my prostate, by mass. Not nearly as bad as initially suggested. I suspect, maybe wrongly, that prostate surgery was a real money maker for the first urologist and wanted to sell it to me.

    I am not ready to accept the end of my sexual life or overall quality of live just to add a few years. Wearing pads, smelling of urine, having a 12-year old's penis and worrying about shooting pee during sex isn't my idea of a fun way to the rest of my life. If I were a bit older, I would have never done it.

    But, that's me.

    No second guessing allowed
    One thing at a time. Have you considered an artificial urinary sphincter? I was 100% incontinent and had the same feelings as you. The AUS turned things around. I DID NOT want any "contraption" implanted in me, and I fought my urologist on it for months. But the pads, smell of urine, peeing during sex, restrictions on my life -- it all was too much to bear. Three years ago I had the AUS implanted -- brutal surgery -- but I have my life back now.

    Tom
  • Kongo
    Kongo Member Posts: 1,166 Member
    Bizman said:

    Another Idea
    I was 60 when I had a robotic prostatectomy. In retrospect, I shouldn't have done it.

    If I were 71, I would rather live another 10 years as a normal man rather than another 15 wearing pads and not having erections. I do not like what has happened to my quality of live since the surgery.

    Prostate cancer has become a high interest item in the last few years and the number of prostatectomies has soared. It's a big selling surgery. My first urologist did a biopsy with the lab work done by a pathologist within the same doctor's medical group. My cancer was rated as 4+3=7 and told it was borderline agressive. They suggested immediate surgery (the old "open" technique). My wife was extremely concerned so I looked for another opinion settling on a urologist who had done hundreds of the robotic surgery. Long story short, the lab report after my prostate was removed was graded as 3+4=7 and was only 5% of my prostate, by mass. Not nearly as bad as initially suggested. I suspect, maybe wrongly, that prostate surgery was a real money maker for the first urologist and wanted to sell it to me.

    I am not ready to accept the end of my sexual life or overall quality of live just to add a few years. Wearing pads, smelling of urine, having a 12-year old's penis and worrying about shooting pee during sex isn't my idea of a fun way to the rest of my life. If I were a bit older, I would have never done it.

    But, that's me.

    Understand Your Regrets
    Bizman,

    I think your post really underscores the dilemma most men face when they receive their diagnosis of prostate cancer. In my own situation, I did a lot of studying and determined that I wasn't going to risk the side effects of surgery at all and chose another path that I am very happy with so far. Men (and their spouses) need to really understand the implications and potential side effects of any course of action they choose and frankly, I don't think many men do a good job in researching their options.

    I think Skid Row echos your regrets and I wonder, Skid, knowing what you know now...would you have gone the same route or chose a different path? I don't recall your stats but many of us learn a lot more about our treatment AFTER we have it than before. I'm glad the AUS is working for you.

    Many men have had few ill effects of surgery and for them it worked well. Others have had disastrous effects on their quality of life. The unfortunuate thing is that even today with all we know and the new techniques that are emerging, we can't predict with any degree of success how any one individual will respond to treatment.

    I've learned to not trust anyone but myself in these decisions, ask lots and lots of questions, do my homework, and even then have second thoughts. For me, the deciding factor was quality of life rather than quantity of life. I know many men express that they're just happy to be alive and the rest isn't as important...I just don't see it that way.

    I share your distaste for the money-making aspects of this disease.

    I think its natural to second guess your decisions. I second guess mine almost every day and I haven't any side effects.

    Thanks for your post.

    =========================
    Age at Dx: 59. PSA 4.3 which dropped to 2.8 at Tx after eliminating dairy.
    Gleason 3+3=6, 1 of 12 cores positive with 15% involvement. DRE normal. Stage: T1c
    Treatment: CyberKnife radiation in June 2010. Side effects: None.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Bizman said:

    Another Idea
    I was 60 when I had a robotic prostatectomy. In retrospect, I shouldn't have done it.

    If I were 71, I would rather live another 10 years as a normal man rather than another 15 wearing pads and not having erections. I do not like what has happened to my quality of live since the surgery.

    Prostate cancer has become a high interest item in the last few years and the number of prostatectomies has soared. It's a big selling surgery. My first urologist did a biopsy with the lab work done by a pathologist within the same doctor's medical group. My cancer was rated as 4+3=7 and told it was borderline agressive. They suggested immediate surgery (the old "open" technique). My wife was extremely concerned so I looked for another opinion settling on a urologist who had done hundreds of the robotic surgery. Long story short, the lab report after my prostate was removed was graded as 3+4=7 and was only 5% of my prostate, by mass. Not nearly as bad as initially suggested. I suspect, maybe wrongly, that prostate surgery was a real money maker for the first urologist and wanted to sell it to me.

    I am not ready to accept the end of my sexual life or overall quality of live just to add a few years. Wearing pads, smelling of urine, having a 12-year old's penis and worrying about shooting pee during sex isn't my idea of a fun way to the rest of my life. If I were a bit older, I would have never done it.

    But, that's me.

    choosing treatment
    I also second guess the treatment that I have choosen, and think about what treatment I would need if active surveillance fails........in my opinion there are pros and cons for each treatment option......a lot of the information is gray, since we are all different from one another, and it's hard to know exactly what's going on.....i've been looking at this for a year and half, have narrowed my choices , but still do not have a concrete treatment that would be my choice.

    I agree that there are lots of docs who are biased because of money , or because of the specialty that they have choosen, or who are incompetent.

    Just thinking out loud now, ...that it would be beneficially to have a center that simply helps you choose a treatment type....these centers would not do any treatment, simply help you decide............I agree with Kongo that many men do not do enough research,...for various reasons........a quick decision is sometimes needed........emotional stress....do not have strong research or decision making skills, etc.

    Ira
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    Kongo said:

    Understand Your Regrets
    Bizman,

    I think your post really underscores the dilemma most men face when they receive their diagnosis of prostate cancer. In my own situation, I did a lot of studying and determined that I wasn't going to risk the side effects of surgery at all and chose another path that I am very happy with so far. Men (and their spouses) need to really understand the implications and potential side effects of any course of action they choose and frankly, I don't think many men do a good job in researching their options.

    I think Skid Row echos your regrets and I wonder, Skid, knowing what you know now...would you have gone the same route or chose a different path? I don't recall your stats but many of us learn a lot more about our treatment AFTER we have it than before. I'm glad the AUS is working for you.

    Many men have had few ill effects of surgery and for them it worked well. Others have had disastrous effects on their quality of life. The unfortunuate thing is that even today with all we know and the new techniques that are emerging, we can't predict with any degree of success how any one individual will respond to treatment.

    I've learned to not trust anyone but myself in these decisions, ask lots and lots of questions, do my homework, and even then have second thoughts. For me, the deciding factor was quality of life rather than quantity of life. I know many men express that they're just happy to be alive and the rest isn't as important...I just don't see it that way.

    I share your distaste for the money-making aspects of this disease.

    I think its natural to second guess your decisions. I second guess mine almost every day and I haven't any side effects.

    Thanks for your post.

    =========================
    Age at Dx: 59. PSA 4.3 which dropped to 2.8 at Tx after eliminating dairy.
    Gleason 3+3=6, 1 of 12 cores positive with 15% involvement. DRE normal. Stage: T1c
    Treatment: CyberKnife radiation in June 2010. Side effects: None.

    No second guessing ll
    When I was diagnosed, I was a healthy 60 years old. I'm a non-smoker who never gets sick (missed one day of work in the last 19 years -- kidney stone), and nobody in my family has had any form of cancer. To me, the stats didn't matter much. Prostate cancer is slow growing, but it's not going away. I decided that the cancer must go. I wanted it out. I knew the possible consequences of surgery. However, I did my research (took four months between biopsy and surgery), decided on "the best" -- Johns Hopkins -- researched my doctor's background, and things looked like they were in my favor. I could stop urine in mid-stream and had absolutely no problems with ED. The doctor saved both nerve bundles and the margins were good. The weeks after surgery, I was recovering faster than the doctor anticipated. Then came the scar tissue which interfered with my urine stream. I feel the doctor (my JH surgeon) was overly aggressive in dilating me. Since that procedure, I have been totally incontinent. I don't feel I was given any guidance with ED other than a prescription for Cialis with the instructions "Take one before sex". Levitra gets things "mushy-firm", but incapable of insertion. The AUS has resolved about 95% of the incontinence issue.

    Once you've been diagnosed, the road in front of you suddenly becomes more complex with many off ramps leading to dark alleys. I have chosen not to venture down the dark alleys. I've got to work with the hand I've been dealt and can't relive the past. The bottom line is, I no longer have cancer and it shows no signs of recurring. That was my goal and I achieved it. My decision was made in 2006. It's now 2010. There is better technology now, more options, and doctors with more experience with robotic surgery. I would still go with radical prostatectomy. However, I might be more inclined to choose robotic surgery.

    The bottom line is, if you read a number of the posts on the CSN, treatment for prostate cancer is a real crap shoot. There are successes and failures with every type of treatment. You can't predict. There was every indication with me, that everything would return to "normal" within six months following surgery. But, at every phase, I kept reading statistics that said, "Only 3% of patients experience....". It seems like I was a "three per center" more often than not. Like my current urologist likes to say, "If you're in the 3%, you're in the 100%".

    I envy all of you without problems. I should be one of you. But I'm not. The battle with cancer has left me badly injured. But I won.