Prostate Cancer at 39

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  • DougW
    DougW Member Posts: 12
    #22
    hopeful and optimistic said:

    Hi
    I'm sorry to hear of your diagnosis. I wonder, what are your scores? Gleason, PSA, how many cores involved, percent involvement, when was the diagnosis? A month sounds pretty fast to me.

    Wish you the best.

    Ira

    Thanks Ira,
    I didn't know
    Thanks Ira,

    I didn't know what questions to ask when he told me, so don't know too much. They took 12 samples during the biopsy, and I think he said only one contained cancer cells. My PSA prior to the biopsy was 7.7. The biopsy was done June 3, I just found out yesterday. He said that he didn't believe it had spread outside of the prostate, and believes that removing the prostate will get rid of the cancer. I didn't ask about a Gleason score, and he didn't tell me. He said he won't be able to do the surgery as quickly as he thinks it should be done, because he will be out of town. He referred me to the head of Urology at the University of Pittsburgh Medical Center.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #23
    DougW said:

    Thanks Ira,
    I didn't know
    Thanks Ira,

    I didn't know what questions to ask when he told me, so don't know too much. They took 12 samples during the biopsy, and I think he said only one contained cancer cells. My PSA prior to the biopsy was 7.7. The biopsy was done June 3, I just found out yesterday. He said that he didn't believe it had spread outside of the prostate, and believes that removing the prostate will get rid of the cancer. I didn't ask about a Gleason score, and he didn't tell me. He said he won't be able to do the surgery as quickly as he thinks it should be done, because he will be out of town. He referred me to the head of Urology at the University of Pittsburgh Medical Center.

    Doug,
    I know that you are probably in shock, like all of us have been-, but you need to be empowered, you need to be your own avocate.

    First, get a copy of the pathology report, and any other medical information from your doc. Keep it in a book, and take it with you as you go from place to place to find out information...you need to have this.

    Get back to us with the information.


    You may have read one of the other threads, that I recently posted on. It very important to get a second opinion of the the pathology of your biopsy by an expert. An expert in your area that I used for my second opinion is J. Epstein, Johns Hopkins. Have your doc,or simply contact his office and have them send the parrafin block to Johns Hopkins for analysis. Second opinions are generally covered.

    Now you had your biopsy 6/2. I think that they cannot operate for a couple of months, because of the current prostate condition.

    There are support groups run by Us too, and other organizations....there must be a few in your area.......go to them all, read books, etc, etc.

    One of twelve cores doesn't sound so bad to me, now I had 2 of 12 cores with less than 5 percent involvement in each which is low, my psa was 2.2. I am on active surveillance. One of the docs that I saw said that I had five weeks to make a decision( I though that I wouldn't make it out of his office)that was three months ago. I'm not saying that you should be on active surveillance, probably you should not be, but I'm saying that you want to have enough information so you feel comfortable with what ever you do.

    Ira
  • DougW
    DougW Member Posts: 12
    #24
    My slides from the biopsy
    My slides from the biopsy are on the way to Johns Hopkins - in fact they may already be there. My doc, Frank Costa, suggested sending them as soon as he told me I had cancer. Gleason score is 3+3=6. I'm not sure why the doc seems to be in a rush for me to have surgery. He does a lot of these and from what I have learned is well respected. I'm going back to the office on Tuesday and will get a copy of the report then.
  • kevin mcpadden
    kevin mcpadden Member Posts: 7
    #25
    see my stories and good luck
    Dr. Tewari is all you have to know..!!
  • lewvino
    lewvino Member Posts: 1,010
    #26
    DougW said:

    My slides from the biopsy
    My slides from the biopsy are on the way to Johns Hopkins - in fact they may already be there. My doc, Frank Costa, suggested sending them as soon as he told me I had cancer. Gleason score is 3+3=6. I'm not sure why the doc seems to be in a rush for me to have surgery. He does a lot of these and from what I have learned is well respected. I'm going back to the office on Tuesday and will get a copy of the report then.

    If you only had one core
    If you only had one core coming back with cancer cells and a score of 6 I don't think you need to rush. I had 5 of 12 cores come back as positive with them all grading as 7. My surgery is set for August 12th. Take your time and do your homework and research.

    Larry
  • shubbysr
    shubbysr Member Posts: 87
    #27
    DougW said:

    Resurrecting an old thread. I'm 39 and was just diagnosed with prostate cancer. Doctor said that he thinks I should have surgery within a month to remove the prostate. My insurance is changing July 1, and I don't know anything about the new provider/plan. It is through my wife. She is gonna look into this tomorrow. I do suspect that it is a crappy insurance though. I have no idea what options are out there, and no idea what this will mean for me. Any thoughts would be appreciated. Any ideas on how I can contact wade?

    Surgery within a Month?
    Hey DougW,
    I believe that the urgency may be due to other reasons unrelated to your diagnosis.
    Anyway, I am 55 years old and I had an elevated PSA from 3.8 to 4.4 in December 2008. Biopsy in January 2009 2 of 12 samples had cancer, Gleason 3+3. No other symptoms. Samples went to John Hopkins for 2nd opinion.
    on May 1 surgery - Radical Robotic Prostatectomy (sp) at John Hopkins. (the urologist does @150 prostate surgeries per year with a 85-87% success rate). I am slowly recovering. Back to work at 5 weeks post surgery. Continue with no urinary control and maybe a trickle of sexual arousal. I realize recovery is slow, inspite of nerve being intact. After you review all your options and assuming no other cancer involvement, surgery is the best option as you are young and healthy otherwise!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #28
    DougW said:

    My slides from the biopsy
    My slides from the biopsy are on the way to Johns Hopkins - in fact they may already be there. My doc, Frank Costa, suggested sending them as soon as he told me I had cancer. Gleason score is 3+3=6. I'm not sure why the doc seems to be in a rush for me to have surgery. He does a lot of these and from what I have learned is well respected. I'm going back to the office on Tuesday and will get a copy of the report then.

    Doug,
    You say that this doc does a lot of surgeries, how many is a lot? Remember that you have only one operation. There are no do overs, so find the best that you can even it it means leaving your area.

    analogy: When I was a boy we collected baseball cards and knew the averages of the players. Now that we are in this situation, we check these surgeons out........some are like Babe Ruth...others are minor leaguers (sp).

    ON the core that you a 3+3 gleason, what was the involvement?

    In my case, one of the docs that I visited told me that I had 5 weeks, (just the time that my prostate was healed and ready for a procedure, radiation in that case)now wasn't that a coincidence, just like in your case.

    Ira
  • DougW
    DougW Member Posts: 12
    #29
    On the 3+3 core the
    On the 3+3 core the involvement was 5%. (doesn't sound like much to me, but what do I know). The doc I am seeing now has done several thousand of these surgeries. The one I am going to see next has done many more than that.
  • DougW
    DougW Member Posts: 12
    #30
    shubbysr said:

    Surgery within a Month?
    Hey DougW,
    I believe that the urgency may be due to other reasons unrelated to your diagnosis.
    Anyway, I am 55 years old and I had an elevated PSA from 3.8 to 4.4 in December 2008. Biopsy in January 2009 2 of 12 samples had cancer, Gleason 3+3. No other symptoms. Samples went to John Hopkins for 2nd opinion.
    on May 1 surgery - Radical Robotic Prostatectomy (sp) at John Hopkins. (the urologist does @150 prostate surgeries per year with a 85-87% success rate). I am slowly recovering. Back to work at 5 weeks post surgery. Continue with no urinary control and maybe a trickle of sexual arousal. I realize recovery is slow, inspite of nerve being intact. After you review all your options and assuming no other cancer involvement, surgery is the best option as you are young and healthy otherwise!

    I would have thought that
    I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.
  • DougW
    DougW Member Posts: 12
    #31
    shubbysr said:

    Surgery within a Month?
    Hey DougW,
    I believe that the urgency may be due to other reasons unrelated to your diagnosis.
    Anyway, I am 55 years old and I had an elevated PSA from 3.8 to 4.4 in December 2008. Biopsy in January 2009 2 of 12 samples had cancer, Gleason 3+3. No other symptoms. Samples went to John Hopkins for 2nd opinion.
    on May 1 surgery - Radical Robotic Prostatectomy (sp) at John Hopkins. (the urologist does @150 prostate surgeries per year with a 85-87% success rate). I am slowly recovering. Back to work at 5 weeks post surgery. Continue with no urinary control and maybe a trickle of sexual arousal. I realize recovery is slow, inspite of nerve being intact. After you review all your options and assuming no other cancer involvement, surgery is the best option as you are young and healthy otherwise!

    I would have thought that
    I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.
  • DougW
    DougW Member Posts: 12
    #32
    shubbysr said:

    Surgery within a Month?
    Hey DougW,
    I believe that the urgency may be due to other reasons unrelated to your diagnosis.
    Anyway, I am 55 years old and I had an elevated PSA from 3.8 to 4.4 in December 2008. Biopsy in January 2009 2 of 12 samples had cancer, Gleason 3+3. No other symptoms. Samples went to John Hopkins for 2nd opinion.
    on May 1 surgery - Radical Robotic Prostatectomy (sp) at John Hopkins. (the urologist does @150 prostate surgeries per year with a 85-87% success rate). I am slowly recovering. Back to work at 5 weeks post surgery. Continue with no urinary control and maybe a trickle of sexual arousal. I realize recovery is slow, inspite of nerve being intact. After you review all your options and assuming no other cancer involvement, surgery is the best option as you are young and healthy otherwise!

    I would have thought that
    I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.
  • DougW
    DougW Member Posts: 12
    #33
    DougW said:

    On the 3+3 core the
    On the 3+3 core the involvement was 5%. (doesn't sound like much to me, but what do I know). The doc I am seeing now has done several thousand of these surgeries. The one I am going to see next has done many more than that.

    I just read the exerpt from
    I just read the exerpt from a medical study that showed no negative consequences of performing the surgery shortly after the biopsy. Is there a reason to wait, other than taking time to do research?
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #34
    DougW said:

    I just read the exerpt from
    I just read the exerpt from a medical study that showed no negative consequences of performing the surgery shortly after the biopsy. Is there a reason to wait, other than taking time to do research?

    Hi Doug,
    I wonder can you provide the site for this study.......thanks.......Research is very important...youhave to live with the results for a long time.......also, your quality of life is generally better while you are waiting.

    My numbers are very similar to yours, but I am 66. The doc told me that my cancer is probably indolent, not likely to spread. I am doing active surveillance. I've spoken to a couple of docs about taking the drug , avodart and got mixed answers.

    there is a test that you might consider that I took it's an MRI with a transrectal combined with a spectocopy test. the spectroscopy test is considered investigation and is not covered by insurance. It cost me 900.00. The test shows whether or not there is nodule involvement(outside the prostate), how much cancer in the protate, where in the prostate. I had it done at ucla. Some major hospitals offer this test.
  • DougW
    DougW Member Posts: 12
    #35
    Here is a link to the
    Here is a link to the abstract from the study:
    http://linkinghub.elsevier.com/retrieve/pii/S009042950700163X
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #36
    DougW said:

    Here is a link to the
    Here is a link to the abstract from the study:
    http://linkinghub.elsevier.com/retrieve/pii/S009042950700163X

    Thanks Doug,
    I learned something today.

    Ira
  • Winchef
    Winchef Member Posts: 13
    #37
    pamk said:

    Hello, I am reading this because at 58 my significant other has been diagnosed with prostate cancer just today I am wondering if anyone here has heard of or knows anyone whom has tried the HIFU in Canada ? After spending all day on the internet that is an option we are considering although the surgery and/or the radiation pellets are being considered any words from anyone here will be very much appreciated unfortunatley now in this club from Seattle

    HIFU in Canada
    My nextdoor neighbor had HIFU and a year later his PSA was back with a vengence. He also tried cryogenic treatment and again the cancer reared it's ugly head. He finally ended up having a RP and wanted everything removed because his brother who went through the same thing ended up with lung and bone cancer later on. Hope this helps. Good luck. Will keep you in my prayers.
  • lewvino
    lewvino Member Posts: 1,010
    #38
    Winchef said:

    HIFU in Canada
    My nextdoor neighbor had HIFU and a year later his PSA was back with a vengence. He also tried cryogenic treatment and again the cancer reared it's ugly head. He finally ended up having a RP and wanted everything removed because his brother who went through the same thing ended up with lung and bone cancer later on. Hope this helps. Good luck. Will keep you in my prayers.

    Thanks for the input on
    Thanks for the input on HIFU. I had been researching it some while I wait for my robotic surgery on August 12th. It sounded interesting, talked to a Dr. that does it offshore from the States in either mexico or the bahamas but I decided it wasn't for me since there was not a track record to really look at for success.

    Larry
  • DougW
    DougW Member Posts: 12
    #39
    I'm going to see Dr.
    I'm going to see Dr. Hrebinko on July 7. The results of the biopsy are:

    Prostatic Adenocarcinoma, Gleason score 3+3-6, involving one of two cores (5% of core, linear extent 1.5MM, no perineural invasion).

    This was reviewed by the University of Michigan, and they added:

    The focus of adenocarcinoms is present at the end of one of the two cores and consists of a crowded to infiltrative group of small round glands with cytologid atypia (nuckear enlargement, variabley prominent nucleoli) and frequent blue mucin. Due to unusally young age of the patient for this diagnosos, we perfomed a cocktail of immunohistochemical stains (p63, cytokeratin K903, AMACR) to suppor the diagnisis. These stains demonstrate strong AMACR reactivity with lack of basil cell expression in atypical glands, supporting the diagnosos.


    Any thoughts on all of this?
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #40
    DougW said:

    I'm going to see Dr.
    I'm going to see Dr. Hrebinko on July 7. The results of the biopsy are:

    Prostatic Adenocarcinoma, Gleason score 3+3-6, involving one of two cores (5% of core, linear extent 1.5MM, no perineural invasion).

    This was reviewed by the University of Michigan, and they added:

    The focus of adenocarcinoms is present at the end of one of the two cores and consists of a crowded to infiltrative group of small round glands with cytologid atypia (nuckear enlargement, variabley prominent nucleoli) and frequent blue mucin. Due to unusally young age of the patient for this diagnosos, we perfomed a cocktail of immunohistochemical stains (p63, cytokeratin K903, AMACR) to suppor the diagnisis. These stains demonstrate strong AMACR reactivity with lack of basil cell expression in atypical glands, supporting the diagnosos.


    Any thoughts on all of this?

    Hi doug,
    Tell us about the doctor that you are seeing? where is the doctor located, how many surgeries,what type surgery? etc.

    So as I understand you have 1 core with 5 percent involvement and a 3+3 =6 gleason. I'm not a doc. but it sounds like you are in an early stage, and that you have time to make the right decision for you.

    Ira
  • DougW
    DougW Member Posts: 12
    #41
    Here is a link to his
    Here is a link to his CV:
    http://www.upmc.com/Services/Urology/Experts/PhysiciansStaff/Documents/Hrebinko_CV.pdf

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