prostate cancer

MIKEOSH
MIKEOSH Member Posts: 16
edited March 2014 in Prostate Cancer #1
i have been diagnosed with prostate cancer. brief history : i'm 64 years old and living in a suburb of phila pa. after coming out of the servive in 1967 i have made it a point every yr to get a complete physical. 42 yrs of good health i am really upset that how this year in june i had my blood study done and told my family dr. while looking at the results that my prostate reading was 4.0 he told me that it was fine still within limits, well i told him to look at last yrs which was 2.9. well that started the ball rolling, first a ultrasound that showed an enlarged prostate, which led my dr to have me see a urologist which scheduled a biopsy for aug 7th. i had called his office on the 14th this past friday to find out the results. well it took me two calls and finally at 5pm the sect in his office calls me to tell the dr. is busy. and she proceeded to tell me that of the 12 cores takes 3 showed cancer on one side and that the other side was clean. i was told to come to the office yesterday and get a script to schedule a cat scan and mri full body bone scan. this will be done thursday. i am really ticked off that the medical profession and the drs within it are so out of tune with the word anxiety. why couldn't he take the time to call me on friday to explain all of two minutes. to top this off he's on vacation this week. how do you like that for communications from a highly paid physician.
i would appreciate any feed back from any of you guys out there who are going thru most of the same thing. i have to go off line for about 2 hrs but will be back to see your comments thanks in advance and god bless you all mike
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Comments

  • NM
    NM Member Posts: 214
    same thing here
    Hi Mike I live in NE pa. and have switched hospitals and doctors because an inexperienced doctor insisted on doing my surgery as I was his patient. I am 52 Psa 7 cancer throughout the prostate. I dont even qualify for nerve sparing radial prosectomy ,due to my cancer throughout the prostate. I finally landed in Danville (thank god) with an experienced doctor. Now in the next month or so surgery is to be scheduled. Scared yes,worried hell yes but I can only say it is what it is. By the way welcome to the crappiest club you get pushed into .....Nick
  • lewvino
    lewvino Member Posts: 1,010
    I would suggest finding a
    I would suggest finding a new doctor. At least though you were on top of things and got the Check up the Dr. Didn't want to do. Find out your Gleason score on the samples with Cancer. That will be a made up of two numbers which are important. These numbers for example will be something like 3+3(6) or 3+4 (7). If you can post those numbers it is helpful for others that have been done the road before you.

    I'm 6 days post robotic surgery.

    Larry
  • novaguy
    novaguy Member Posts: 76
    Hey Mike, sorry you got the
    Hey Mike, sorry you got the news the way you did. When my PSA first got about 4, my doctor didn't even look at me, just handed me a printout of all my blood tests, and I was the one who read the PSA numbers and a little table that said I had a 33% chance of prostate cancer. I asked the doc if I was reading it right, they take a look and say, yes, that's right.

    Long story short, that was probably my worst experience for anxiety. After I got over the shock, I settled in my mind that this was a possibility and was ready for the worst. The biopsy also caused me a lot of anxiety, but my uro sat down with me when he told me I had 8 of 12 cores positive and a gleason 7.

    I'm on the other side now, having had robotic prostatectomy, looks like they got all the cancer out, my catherer is out, and I'm dry. I guess I had been so pessimistic that I never expected these good results. So the only thing I can tell you is, you're probably going through the max in anxiety right now, and it gets a lot better. Also, from just having 3 cores out of 12 positive and a pretty low PSA, you're probably at a very early stage where it's highly curable. As someone else said, you need to know your gleason score.

    Good luck buddy.
  • MIKEOSH
    MIKEOSH Member Posts: 16
    novaguy said:

    Hey Mike, sorry you got the
    Hey Mike, sorry you got the news the way you did. When my PSA first got about 4, my doctor didn't even look at me, just handed me a printout of all my blood tests, and I was the one who read the PSA numbers and a little table that said I had a 33% chance of prostate cancer. I asked the doc if I was reading it right, they take a look and say, yes, that's right.

    Long story short, that was probably my worst experience for anxiety. After I got over the shock, I settled in my mind that this was a possibility and was ready for the worst. The biopsy also caused me a lot of anxiety, but my uro sat down with me when he told me I had 8 of 12 cores positive and a gleason 7.

    I'm on the other side now, having had robotic prostatectomy, looks like they got all the cancer out, my catherer is out, and I'm dry. I guess I had been so pessimistic that I never expected these good results. So the only thing I can tell you is, you're probably going through the max in anxiety right now, and it gets a lot better. Also, from just having 3 cores out of 12 positive and a pretty low PSA, you're probably at a very early stage where it's highly curable. As someone else said, you need to know your gleason score.

    Good luck buddy.

    prostate
    thanks fore your reply. in all likely hood i'll elect to do the robotic thing. i have another long week to go before i see the dr. thanks mike
  • MIKEOSH
    MIKEOSH Member Posts: 16
    NM said:

    same thing here
    Hi Mike I live in NE pa. and have switched hospitals and doctors because an inexperienced doctor insisted on doing my surgery as I was his patient. I am 52 Psa 7 cancer throughout the prostate. I dont even qualify for nerve sparing radial prosectomy ,due to my cancer throughout the prostate. I finally landed in Danville (thank god) with an experienced doctor. Now in the next month or so surgery is to be scheduled. Scared yes,worried hell yes but I can only say it is what it is. By the way welcome to the crappiest club you get pushed into .....Nick

    prostae
    thanks for your reply, my wife was born in danville, beautiful area, great hosp geissner just outside of town. i have alot of questions for this dr hope i'll get some results. will get a 2nd opinion also. thanks mike
  • MIKEOSH
    MIKEOSH Member Posts: 16
    lewvino said:

    I would suggest finding a
    I would suggest finding a new doctor. At least though you were on top of things and got the Check up the Dr. Didn't want to do. Find out your Gleason score on the samples with Cancer. That will be a made up of two numbers which are important. These numbers for example will be something like 3+3(6) or 3+4 (7). If you can post those numbers it is helpful for others that have been done the road before you.

    I'm 6 days post robotic surgery.

    Larry

    prostate
    thanks for your reply, i've just started to pull up info on the gleason scores, kinda hard for me to know them i get to see the dr next week. i will be very well prepared when i meet with him. thanks and take care mike
  • saoco
    saoco Member Posts: 43
    Hi MIKEOSH relax my friend
    Hi MIKEOSH relax my friend everything will be ok.
    1-you do not need the test that they say you need, the result of those test will come back
    negative.but doctors want to be sure. so you do the test but do not be worrie.
    2-you do not say what was the gleason score but I bet is it 3+3.
    3-the statistic is showing that is it a litlle beter surgury than any other treament.
    but theare many treament to chose from it depend howm you talk about it.
    if you want you can call me and i will be glad to walk with you every step of the way.
  • MIKEOSH
    MIKEOSH Member Posts: 16
    saoco said:

    Hi MIKEOSH relax my friend
    Hi MIKEOSH relax my friend everything will be ok.
    1-you do not need the test that they say you need, the result of those test will come back
    negative.but doctors want to be sure. so you do the test but do not be worrie.
    2-you do not say what was the gleason score but I bet is it 3+3.
    3-the statistic is showing that is it a litlle beter surgury than any other treament.
    but theare many treament to chose from it depend howm you talk about it.
    if you want you can call me and i will be glad to walk with you every step of the way.

    prostate
    thank you for your words of encouragement. i don't have a gleason score yet, probably get that after the cat and mri and i meet with him next week. anxiety at 64 is not my best trait, went thru alot in the late 70's and all of the 80's with a sick wife who died of ms at the age of 42 in 1990 and three teenage boys to raise. so this is not good to go thru at my age or any age. talking to guys on the internet like you is better therapy than i thought.
    i will give you a shout in the am tomorrow and give you my tele number. i'll be on about 10am. thanks for the good words of encouragement. mike
  • tpelle
    tpelle Member Posts: 184
    MIKEOSH said:

    prostate
    thank you for your words of encouragement. i don't have a gleason score yet, probably get that after the cat and mri and i meet with him next week. anxiety at 64 is not my best trait, went thru alot in the late 70's and all of the 80's with a sick wife who died of ms at the age of 42 in 1990 and three teenage boys to raise. so this is not good to go thru at my age or any age. talking to guys on the internet like you is better therapy than i thought.
    i will give you a shout in the am tomorrow and give you my tele number. i'll be on about 10am. thanks for the good words of encouragement. mike

    Gleason Score
    Mikeosh: If you want your Gleason score now, tell your doctor's secretary that you want to see your file NOW including the lab report on your biopsy. How dare they leave you in a state of anxiety until the doctor returns from vacation. Most likely Gleason is good; why keep you worrying. Either way, I'd want to know.
  • novaguy
    novaguy Member Posts: 76
    tpelle said:

    Gleason Score
    Mikeosh: If you want your Gleason score now, tell your doctor's secretary that you want to see your file NOW including the lab report on your biopsy. How dare they leave you in a state of anxiety until the doctor returns from vacation. Most likely Gleason is good; why keep you worrying. Either way, I'd want to know.

    tpelle, I agree with you, no
    tpelle, I agree with you, no need to wait for these other (unncecessary in my opinion) tests before they give Mike the gleason grade. That should be done at the same time as the biopsy results are given out. However, in my case, the gleason was not part of the biopsy report, my urologist went over the biopsy report, told me what my gleason score was, and wrote it on the biopsy report. So I think the gleason grade is left up to the urologist, at least in some cases. On the other hand, my post-surgery pathology report did include the gleason grade, so I guess it depends. One thing for sure, Mike's urologist sucks in the patient relations department.
  • MIKEOSH
    MIKEOSH Member Posts: 16
    tpelle said:

    Gleason Score
    Mikeosh: If you want your Gleason score now, tell your doctor's secretary that you want to see your file NOW including the lab report on your biopsy. How dare they leave you in a state of anxiety until the doctor returns from vacation. Most likely Gleason is good; why keep you worrying. Either way, I'd want to know.

    gleason score
    i agree with you, but i have these two other tests to worry about so i'll wait till i see him tuesday and tell him how good of a F$@#%& job he's doing in the communications dept. these surgeons all they worry about is the bottom line money wise, they have to satisfy that emer room rent there plosh cars etc and don't give a rats [email protected]* about us guys. thanks for your comments mike
  • MIKEOSH
    MIKEOSH Member Posts: 16
    novaguy said:

    tpelle, I agree with you, no
    tpelle, I agree with you, no need to wait for these other (unncecessary in my opinion) tests before they give Mike the gleason grade. That should be done at the same time as the biopsy results are given out. However, in my case, the gleason was not part of the biopsy report, my urologist went over the biopsy report, told me what my gleason score was, and wrote it on the biopsy report. So I think the gleason grade is left up to the urologist, at least in some cases. On the other hand, my post-surgery pathology report did include the gleason grade, so I guess it depends. One thing for sure, Mike's urologist sucks in the patient relations department.

    urologist
    one thing we surely agree on is the dr. sucks in patient relations. i have two tests tomorrow so i'll wait to see him tuesday, don't want to call the office and be told she can't give it to me because she needs his permission, i can somehow understand that but there are other dr's there in the office who are covering, you would think someone would pick up the ball.

    on another note when i was reading comments yesterday someone was saying the va is giving disability to vietnam vets who get prostate cancer. i was in nam in 65 and 66, any comments or direction from any of you guys would be appreciated.
    in the meantime i'll check the va web site thanks mike
  • gator880
    gator880 Member Posts: 21
    You're definitely going
    You're definitely going though a lot. My husband bonded with and highly regards a doctor who has since moved to Philadelphia area. He spent time with both of us, and treated us both as real people with real concerns, not just someone in a waiting room. Dr. Akhil Das is a urologist who joined Thomas Jefferson University Hospital last November. (We had seen him in New Mexico, but he moved back to the big city.) Hope this helps. Can give you more detailed info if you need it.
  • MIKEOSH
    MIKEOSH Member Posts: 16
    gator880 said:

    You're definitely going
    You're definitely going though a lot. My husband bonded with and highly regards a doctor who has since moved to Philadelphia area. He spent time with both of us, and treated us both as real people with real concerns, not just someone in a waiting room. Dr. Akhil Das is a urologist who joined Thomas Jefferson University Hospital last November. (We had seen him in New Mexico, but he moved back to the big city.) Hope this helps. Can give you more detailed info if you need it.

    thank you
    thank you for the dr info. i will look him up, would you suggest he be my 2nd opinion, i'm new to this and don't know who should be looking at my results. thanks mike
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Mike
    The american urological association guideline does not recommend a bone scan for gleasons under 8. Also I there are more appropriate tests for prostate cancer than a catscan.
    YOU NEED TO GET YOUR GLEASON SCORE NOW, AND ALSO THE INVOLVEMENT OF EACH CORE Get a copy of your biopsy test. Also , you want to have a second opinion of your biopsy to make sure that you are not over or under treated. DR. Epstein at Johns Hopkins is an expert in the field. The analysis of the biopsy is very complicated, and you really want to see an expert.

    YOu may be a candidate for Active Surveillance however you need to know your gleason and involvement in each core.

    Age 66, 3+3=6, 2 of 12 cores positive,less than 5 percent involvement in each; diagnosed march- active surveillance.

    We are with you
  • MIKEOSH
    MIKEOSH Member Posts: 16

    Mike
    The american urological association guideline does not recommend a bone scan for gleasons under 8. Also I there are more appropriate tests for prostate cancer than a catscan.
    YOU NEED TO GET YOUR GLEASON SCORE NOW, AND ALSO THE INVOLVEMENT OF EACH CORE Get a copy of your biopsy test. Also , you want to have a second opinion of your biopsy to make sure that you are not over or under treated. DR. Epstein at Johns Hopkins is an expert in the field. The analysis of the biopsy is very complicated, and you really want to see an expert.

    YOu may be a candidate for Active Surveillance however you need to know your gleason and involvement in each core.

    Age 66, 3+3=6, 2 of 12 cores positive,less than 5 percent involvement in each; diagnosed march- active surveillance.

    We are with you

    thank you
    thank you for your info. i just had the cat and bone scan done so i'll just sit and wait till i see the dr on tuesday, he is on vacation till monday. i have a lot of written questions for him at this point. i will be getting a second opinion regardless of what he tells me. with 3 cores located in one section showing cancer and the other being fine and a psa of 4.0 before the tests maybe there is hope here. i do get checked every year so maybe that helped that i was on top of things. looking for a little hope and a whole lot of luck here. throw in a few prayers and we'll see. thanks again. mike
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    MIKEOSH said:

    thank you
    thank you for your info. i just had the cat and bone scan done so i'll just sit and wait till i see the dr on tuesday, he is on vacation till monday. i have a lot of written questions for him at this point. i will be getting a second opinion regardless of what he tells me. with 3 cores located in one section showing cancer and the other being fine and a psa of 4.0 before the tests maybe there is hope here. i do get checked every year so maybe that helped that i was on top of things. looking for a little hope and a whole lot of luck here. throw in a few prayers and we'll see. thanks again. mike

    mike
    It's going to work out...........by the way get a copy of every thing that is done for your personal records........either you or your insurance company paid for this.........you will need this as you interview doctors at various specialties.............remember, generally one is in no rush to jump into anything........take your time to make the right decision that you are comfortable with.....wishing you the best

    Ira
  • MIKEOSH
    MIKEOSH Member Posts: 16

    mike
    It's going to work out...........by the way get a copy of every thing that is done for your personal records........either you or your insurance company paid for this.........you will need this as you interview doctors at various specialties.............remember, generally one is in no rush to jump into anything........take your time to make the right decision that you are comfortable with.....wishing you the best

    Ira

    thank you
    ira when and how did you go thru this experience mike
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    MIKEOSH said:

    thank you
    thank you for your info. i just had the cat and bone scan done so i'll just sit and wait till i see the dr on tuesday, he is on vacation till monday. i have a lot of written questions for him at this point. i will be getting a second opinion regardless of what he tells me. with 3 cores located in one section showing cancer and the other being fine and a psa of 4.0 before the tests maybe there is hope here. i do get checked every year so maybe that helped that i was on top of things. looking for a little hope and a whole lot of luck here. throw in a few prayers and we'll see. thanks again. mike

    biopsy
    hi mike, I not sure if I was clear about this..............You don't have to see the pathologist.......simply have the lab that did the pathology send the parraffin blocks to dr. Epstein at Johns Hopkins for a second opinion...........this is generally covered

    Ira
  • MIKEOSH
    MIKEOSH Member Posts: 16

    biopsy
    hi mike, I not sure if I was clear about this..............You don't have to see the pathologist.......simply have the lab that did the pathology send the parraffin blocks to dr. Epstein at Johns Hopkins for a second opinion...........this is generally covered

    Ira

    tuesday
    i wihll ask that question also on tuesday. when were you first diagnosed with prostate cancer. how old etc mike