Hello just diagnosed and very frightened

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Comments

  • Old-timer
    Old-timer Member Posts: 196
    I send renewed words of encouragement

    Steve,

    The responses you have generated are overwhelming. I have nothing new to add to what I said earlier. You have heard our voices, studied the issues, and made your decision. I again wish you good luck as you proceed on your prostate cancer journey.

    I think I told you that I chose prostectomy at the age of 65 in 1991. This has worked OK for me; nevertheless, I do not make recommendations to others. Everyone of us is different, and we make our individual choices. 

    Best wishes to you and to all of us.

    Happy New Year.

    Old-timer (Jerry) 

  • Steve1961
    Steve1961 Member Posts: 301
    Right on

    thanks old timer appreciate the boost 

  • Julielynn0501
    Julielynn0501 Member Posts: 12
    Here for support

    Hi Steve!  My husband was diagnosed about 8 months ago.  I can feel your fear and anger.  We found this group a couple of months ago and they've been great!  My husband is a "young 60" (so they say).  Surgeon told him to remove it, get it over with.  Radiation said remove it.  We actually had surgery scheduled for tomorrow, but through this board found out A LOT of information, including Cyberknife and now FLA.  So listen to all of these wonderful contrubutors and educate yourself.  The doctors only tell you what they want to do and its very frustrating.  

    Deep breath.

  • Steve1961
    Steve1961 Member Posts: 301
    edited January 2018 #85
    Thanks

    oh I do listen to all these wonderful people 

  • ASAdvocate
    ASAdvocate Member Posts: 182 Member
    Grinder said:

    One more thing

    ... Be sure to ask your doctor how CK will or will not affect severe BPH symptoms or chronic prostatitis. So far, I have not read in the archives anything about chronic prostatitis, BPH and CK treatments. I don't think, at first glance, that CK will help enlarged prostate symptoms at all, and the advocates of CK never mention having enlarged prostates to the point of health risk.

    Admittedly, 55cc is not terribly enlarged. But that isn't a constant you can rely on in the future. Family history? Did your father have serious BPH symptoms? What does your urologist say about your future potential for BPH? 

    If you get CK instead of RP, is daily Flomax in your future? A TURP procedure? I myself had all the options on the table and went with RP anyway.

    If you settle on CK or other RT, keep in mind that RP is then generally ruled out. You can follow Robotic Prostatectomy with radiation, but you generally cannot follow radiation with radical prostatectomy. Read into the archives for more info.

    If your doctor suggests you will not have severe BPH or chronic prostatitis in your future, then maybe CK is your best alternative. But don't let anyone scare you away from radical prostatectomy with an experienced Davinci Robotic surgeon, if there is danger of severe prostate enlargement and the accompanying urinary stricture and other health issues it creates.

    I could be wrong, but I am guessing the CK advocates here did not have to deal with severe prostate enlargement, which CK can not resolve, but could take prostatectomy off the table for future treatment alternatives.

    And Davinci Robotic nerve sparing prostatectomy is the way to go for any RP.

    And yes, you have plenty of time to decide on the best treatment for YOUR profile, not mine or anybody else's. Best to ignore the dire warnings and get every opinion possible.

    Surgery after Radiation? Why?

    Grinder wrote "If you settle on CK or other RT, keep in mind that RP is then generally ruled out. You can follow Robotic Prostatectomy with radiation, but you generally cannot follow radiation with radical prostatectomy. Read into the archives for more info."

    Yes, but, so what?

    Salvage treatments following a failed primary radiation include cryotherapy, HIFU, FLA, SBRT, and HDRBT.  So, why do pro-surgery advocates always bring up this talking point? It leaves the misleading impression that a man choosing a form of RT is out of luck if his PCa returns, and this simply is not the case.

     

     

  • Steve1961
    Steve1961 Member Posts: 301
    MRI delay

    I was supposed to have an MRI on the 15th  now got pushed back until the 22nd...tech did not feel comfortable until aafter 7 full weeks after biopsy..wow going to see 2 surgeons with having them  not seen the  MRi..which means another app with surgeons..hopefully i wont have to wait weeks and weeks for follow up app...thsi not knowing the facts about containment is getting to me..abd the wait might be 3 months after biopsy...also  should not have told anyone but family...everyone i talk to now say so when is surgury, whats,  the wait , you need to get that out, its frustrtaing as heck..thanks for listening

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    You will come across many

    You will come across many civilians who do not know what they are talking about. 

    Suggest that you attend a local support group, where you can discuss.

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    Focus on what is important to you

    Why getting stressed by what the others say?
    Disregard those comments and focus in what is important to you. Your post tells me that you are not yet totally comfortable with the situation and do not know yet the role you should take. You feel responsible.
    This is absolutely normal and occurs to us all as we are dealing with something new to us. Once you get educated and understand the subject, you become more confident and start feeling better. Decisions are easier to take and that frightening of erring dissipates.

    The postponement of the MRI is upsetting as the data will be necessary in the consultations. In your shoes I would call the doctor's office to inform on the postponement for them to change the appointment date. Cancer does not spread overnight and your present condition would not alter in two more months. How about preparing your self with a list of questions for the consultations? Here are some ideas for you to copy;

    http://csn.cancer.org/node/224280

    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

    Try doing things coordinately without rushing. This is the way to confront the problem, leading to a more concrete and successful outcome.

    Best,

    VG

  • Steve1961
    Steve1961 Member Posts: 301

    Focus on what is important to you

    Why getting stressed by what the others say?
    Disregard those comments and focus in what is important to you. Your post tells me that you are not yet totally comfortable with the situation and do not know yet the role you should take. You feel responsible.
    This is absolutely normal and occurs to us all as we are dealing with something new to us. Once you get educated and understand the subject, you become more confident and start feeling better. Decisions are easier to take and that frightening of erring dissipates.

    The postponement of the MRI is upsetting as the data will be necessary in the consultations. In your shoes I would call the doctor's office to inform on the postponement for them to change the appointment date. Cancer does not spread overnight and your present condition would not alter in two more months. How about preparing your self with a list of questions for the consultations? Here are some ideas for you to copy;

    http://csn.cancer.org/node/224280

    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

    Try doing things coordinately without rushing. This is the way to confront the problem, leading to a more concrete and successful outcome.

    Best,

    VG

    oh thanks

    wow i was hoping to find a sight thast would help me ask all the questions i nedd to ask thanks again

     

  • Steve1961
    Steve1961 Member Posts: 301
    edited January 2018 #91
    dr visits

    tyhese first time visits take much longer i hear..i am hoping after forst vivit i wont have to wait long for next visit  thanks

  • Scumcrode
    Scumcrode Member Posts: 15
    edited January 2018 #92
    Some more possible suggestions

    Steve sorry to hear. I'm 47 and was diagnosed last March. I don't have time to read the entire thread so maybe these were mentioned. My PSAs were all under 3, Gleason 3+3 and 1 / 12 biopsies +, FYI. Here's the short version: 1)OncoDX, 2)Get many opinions, 3)MRI, 4)Diet. I was told by 6/7 doctors to have the prostate removed, although I decided to do Active Surveillance. Fortunately the 7th dr I saw agreed with me to do AS. First, you can have OncoDX testing done to the positive specimens only, the cancerous portions. It is a new but regarded as a good other tool in the toolbox to predict the future aggressiveness of the tumor(s). It's probably not cheap, but the company (called OncoDX, its all they do) can evaluate you by phone to perform the test free. I make nearly 100k and qualified. It was a 2 or 3 question survey to qualify. My lone + biopsy came back as 88-93% likely to remain "very low" chance of changing into an aggressive type. It was nice to have this report on my side when choosing AS. Second, get many opinions. Like I said, it was the seventh and last doc I chose to see that finally agreed with my approach. I was doing AS regardless, but it wa such a weight lifted having a doc on my side so to speak. Before meeting him, I felt like I was pulling the weight of those 6 docs around. Third, get an MRI with endorectal coil. I'm getting one today because my PSA just went up to 4.4 after being in the high 2's for almost 2 years. Keep in mind that because I am pretty young numbers like this mean much more to me than someone 55. FYI my chosen AS doc, a very highly regarded doctor at Fox Chase Cancer Center in Philly - no slouch - isn't very concerned about my suddenly higher PSA, saying that it's not a very reliable predictor of what's going on. He is recommending the MRI with endorectal coil, to make sure there aren't multiple tumors. I know you have 2 + biopsies, but the needles can miss things. The MRI could reveal more tumors, or nothing, meaning your tumor or tumors are most likely very small. There is however a 15% chance the MRI could miss things. Again, another tool in the arsenal. I learned something new at all 7 consults, THERE IS NO SUCH THING AS TOO MUCH INFO HERE! Lastly, google "cancer diet." Yep, leafy greens, low fat, etc. and cut down on sugar and meats. People have knocked their PSAs down by 1/3 eating better. I always ate pretty well, or maybe my PSA would have been 4 when it was 2.5 at age 45. Good luck! 

  • Steve1961
    Steve1961 Member Posts: 301
    Scumcrode said:

    Some more possible suggestions

    Steve sorry to hear. I'm 47 and was diagnosed last March. I don't have time to read the entire thread so maybe these were mentioned. My PSAs were all under 3, Gleason 3+3 and 1 / 12 biopsies +, FYI. Here's the short version: 1)OncoDX, 2)Get many opinions, 3)MRI, 4)Diet. I was told by 6/7 doctors to have the prostate removed, although I decided to do Active Surveillance. Fortunately the 7th dr I saw agreed with me to do AS. First, you can have OncoDX testing done to the positive specimens only, the cancerous portions. It is a new but regarded as a good other tool in the toolbox to predict the future aggressiveness of the tumor(s). It's probably not cheap, but the company (called OncoDX, its all they do) can evaluate you by phone to perform the test free. I make nearly 100k and qualified. It was a 2 or 3 question survey to qualify. My lone + biopsy came back as 88-93% likely to remain "very low" chance of changing into an aggressive type. It was nice to have this report on my side when choosing AS. Second, get many opinions. Like I said, it was the seventh and last doc I chose to see that finally agreed with my approach. I was doing AS regardless, but it wa such a weight lifted having a doc on my side so to speak. Before meeting him, I felt like I was pulling the weight of those 6 docs around. Third, get an MRI with endorectal coil. I'm getting one today because my PSA just went up to 4.4 after being in the high 2's for almost 2 years. Keep in mind that because I am pretty young numbers like this mean much more to me than someone 55. FYI my chosen AS doc, a very highly regarded doctor at Fox Chase Cancer Center in Philly - no slouch - isn't very concerned about my suddenly higher PSA, saying that it's not a very reliable predictor of what's going on. He is recommending the MRI with endorectal coil, to make sure there aren't multiple tumors. I know you have 2 + biopsies, but the needles can miss things. The MRI could reveal more tumors, or nothing, meaning your tumor or tumors are most likely very small. There is however a 15% chance the MRI could miss things. Again, another tool in the arsenal. I learned something new at all 7 consults, THERE IS NO SUCH THING AS TOO MUCH INFO HERE! Lastly, google "cancer diet." Yep, leafy greens, low fat, etc. and cut down on sugar and meats. People have knocked their PSAs down by 1/3 eating better. I always ate pretty well, or maybe my PSA would have been 4 when it was 2.5 at age 45. Good luck! 

    Thanks

    I see having the onco dx test done if u choose to monitor it..makes greta sense absolutely do not want it turning aggressive while monitoring but I am going to have mine removed  for now so I don’t think I will we’d that but if things change and maybe do monitor it I will definitely get tested 

  • Scumcrode
    Scumcrode Member Posts: 15
    Steve1961 said:

    Thanks

    I see having the onco dx test done if u choose to monitor it..makes greta sense absolutely do not want it turning aggressive while monitoring but I am going to have mine removed  for now so I don’t think I will we’d that but if things change and maybe do monitor it I will definitely get tested 

    PC is very slow growing, take your time deciding

    The most important thing is that you are comfortable with your course of action. I recommend you take your time deciding. Luckily PC is very slow growing. Do not rush into any treatment. My first instinct was RP too, but even the 6 docs who recommended it confessed that there was a 70% chance I'd be removing the prostate for nothing, and that just didn't sit well with me, then doctors #7 and 8, along with the supporters here at this forum, told me to calm down and take my time in deciding what to do. I understand that you are stage 2 so your situation is different than mine. I'm only saying that there are many courses of action. For now I am still doing Active Surveillance, but if I do any kind of treatment it will most likely be HIFU. Have you looked into that? I'm not certain if you're a candidate, or if you can afford it as insurance is not yet paying for it, but there are rarely any side effects and it is virtually an identical cure. The doctors that do it can screen you by phone. The long term chance of it recurring is a tiny bit higher, like 1 or 2% more than RP. But you can always get RP or radiation later if and when that occurs. Why not have another 15, 20 or 30 years of normal erections and urination first before doing either of those drastic treatments? It is assumed HIFU will be covered within a few years too. For some men, RP is what they are most comfortable with and if that's your choice then good luck. Just don't feel rushed into deciding.  

  • ASAdvocate
    ASAdvocate Member Posts: 182 Member
    edited January 2018 #95
    Scumcrode said:

    Some more possible suggestions

    Steve sorry to hear. I'm 47 and was diagnosed last March. I don't have time to read the entire thread so maybe these were mentioned. My PSAs were all under 3, Gleason 3+3 and 1 / 12 biopsies +, FYI. Here's the short version: 1)OncoDX, 2)Get many opinions, 3)MRI, 4)Diet. I was told by 6/7 doctors to have the prostate removed, although I decided to do Active Surveillance. Fortunately the 7th dr I saw agreed with me to do AS. First, you can have OncoDX testing done to the positive specimens only, the cancerous portions. It is a new but regarded as a good other tool in the toolbox to predict the future aggressiveness of the tumor(s). It's probably not cheap, but the company (called OncoDX, its all they do) can evaluate you by phone to perform the test free. I make nearly 100k and qualified. It was a 2 or 3 question survey to qualify. My lone + biopsy came back as 88-93% likely to remain "very low" chance of changing into an aggressive type. It was nice to have this report on my side when choosing AS. Second, get many opinions. Like I said, it was the seventh and last doc I chose to see that finally agreed with my approach. I was doing AS regardless, but it wa such a weight lifted having a doc on my side so to speak. Before meeting him, I felt like I was pulling the weight of those 6 docs around. Third, get an MRI with endorectal coil. I'm getting one today because my PSA just went up to 4.4 after being in the high 2's for almost 2 years. Keep in mind that because I am pretty young numbers like this mean much more to me than someone 55. FYI my chosen AS doc, a very highly regarded doctor at Fox Chase Cancer Center in Philly - no slouch - isn't very concerned about my suddenly higher PSA, saying that it's not a very reliable predictor of what's going on. He is recommending the MRI with endorectal coil, to make sure there aren't multiple tumors. I know you have 2 + biopsies, but the needles can miss things. The MRI could reveal more tumors, or nothing, meaning your tumor or tumors are most likely very small. There is however a 15% chance the MRI could miss things. Again, another tool in the arsenal. I learned something new at all 7 consults, THERE IS NO SUCH THING AS TOO MUCH INFO HERE! Lastly, google "cancer diet." Yep, leafy greens, low fat, etc. and cut down on sugar and meats. People have knocked their PSAs down by 1/3 eating better. I always ate pretty well, or maybe my PSA would have been 4 when it was 2.5 at age 45. Good luck! 

    Avoid the ERC

    Great post, but, many institutions have stopped using the endo-rectal coil since they installed 3Telsa MRI's.  John Hopkins stopped using them years ago, and now use an apron coil. Way too much patient discomfort with the ERC's.  If you just had one, you know what I mean.

  • Steve1961
    Steve1961 Member Posts: 301
    Scumcrode said:

    PC is very slow growing, take your time deciding

    The most important thing is that you are comfortable with your course of action. I recommend you take your time deciding. Luckily PC is very slow growing. Do not rush into any treatment. My first instinct was RP too, but even the 6 docs who recommended it confessed that there was a 70% chance I'd be removing the prostate for nothing, and that just didn't sit well with me, then doctors #7 and 8, along with the supporters here at this forum, told me to calm down and take my time in deciding what to do. I understand that you are stage 2 so your situation is different than mine. I'm only saying that there are many courses of action. For now I am still doing Active Surveillance, but if I do any kind of treatment it will most likely be HIFU. Have you looked into that? I'm not certain if you're a candidate, or if you can afford it as insurance is not yet paying for it, but there are rarely any side effects and it is virtually an identical cure. The doctors that do it can screen you by phone. The long term chance of it recurring is a tiny bit higher, like 1 or 2% more than RP. But you can always get RP or radiation later if and when that occurs. Why not have another 15, 20 or 30 years of normal erections and urination first before doing either of those drastic treatments? It is assumed HIFU will be covered within a few years too. For some men, RP is what they are most comfortable with and if that's your choice then good luck. Just don't feel rushed into deciding.  

    okay the ball is fianlly rolling

    saw my first urologst/surgeon yesterday...WOW what aguy...first told me the Drs  i have neen seeing are the absolute worst drs around and he is surprised their licenses havent been revokes..he is right i am done with them....so this Dr 64 years old 34 years expierience with prostyrate cancer....expalined it all..showed  me all about gleason had 5 prostate figures showing whjat it may look like at each stage..spent over an hour with us ..he has done over 3000 open surguries   and he talked me out of surgury..he said at my stage which is t1 and the cancer being maybe only .5 ich long  glrason score PSA level  ....and so on and so forth why on earth would i want an invasive destrictive surgury  that most likely will leave me without any manhood..he said incontinanace is not an issue but he almopst guaranteed getting an erection would be all gone....he says brachytherapy is the best and most effective plan for me..just so happens my wifes uncle had this done 34 years ago and he is now 76 and going strong...so now next week...monday GP  tuesday  bone scan   wednesday Stanford  and i will,have alot of questions for this surgeon  and thursday meet the brachytherapy radiologist.....wow...at least i will be able to make a decision soon.....thanks agaon everyone for all the help...i will take my time..i thin k i am leaning brachytherapy  way  we shall see......it blows my mind to know the dr i was seeing for 6 years  and his partner are absolutely worthless  money hungry pricks...wow good to get 2 or 3 opinions thats for sure

  • fishinguy
    fishinguy Member Posts: 18
    Steve1961 said:

    okay the ball is fianlly rolling

    saw my first urologst/surgeon yesterday...WOW what aguy...first told me the Drs  i have neen seeing are the absolute worst drs around and he is surprised their licenses havent been revokes..he is right i am done with them....so this Dr 64 years old 34 years expierience with prostyrate cancer....expalined it all..showed  me all about gleason had 5 prostate figures showing whjat it may look like at each stage..spent over an hour with us ..he has done over 3000 open surguries   and he talked me out of surgury..he said at my stage which is t1 and the cancer being maybe only .5 ich long  glrason score PSA level  ....and so on and so forth why on earth would i want an invasive destrictive surgury  that most likely will leave me without any manhood..he said incontinanace is not an issue but he almopst guaranteed getting an erection would be all gone....he says brachytherapy is the best and most effective plan for me..just so happens my wifes uncle had this done 34 years ago and he is now 76 and going strong...so now next week...monday GP  tuesday  bone scan   wednesday Stanford  and i will,have alot of questions for this surgeon  and thursday meet the brachytherapy radiologist.....wow...at least i will be able to make a decision soon.....thanks agaon everyone for all the help...i will take my time..i thin k i am leaning brachytherapy  way  we shall see......it blows my mind to know the dr i was seeing for 6 years  and his partner are absolutely worthless  money hungry pricks...wow good to get 2 or 3 opinions thats for sure

    Good for you Steve.   Best

    Good for you Steve.   Best wishes moving forward towards your decision.   IMHO, you're on the right track and frame of mind now to make a good informed decision.

  • Tech70
    Tech70 Member Posts: 70 Member

    Avoid the ERC

    Great post, but, many institutions have stopped using the endo-rectal coil since they installed 3Telsa MRI's.  John Hopkins stopped using them years ago, and now use an apron coil. Way too much patient discomfort with the ERC's.  If you just had one, you know what I mean.

    ERC Avoided

    I had an MRI about 6 weeks ago and they used a pelvic phased array coil, essentially an apron-like device resting on the pelvis.  The radiologist's report was conclusive ( no lesion of concern, thank goodness) and there hae been studies showing equivalent results using both PPA and ERC.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    Nine years ago, I had an endo-rctal coil used in conjunction with a tesla 1.5 for better accuracy; it was very uncomfortable.  Since then with the advent of the the tesla 3.0 mri , the endorectal coil is generally not used in practice.

  • Steve1961
    Steve1961 Member Posts: 301
    Okay

    so when I show up for the mri hopefully they will. Be using the apron but if not what then get up and leave or should I call to find out first 

  • Steve1961
    Steve1961 Member Posts: 301
    A lot of decisions to make

    It’s a bit confusing .my dr that diagosed me didn’t tell me anything at all needless to say if is fired ....but when I asked him all the questions I asked him if I was stage 2 he said yes..with I take with a grain of salt...now my new urologist whom I really like when going over everything told me I was t1 which I think is stage one...I thought automatically Gleason 7 is stage 2. My uro said even Gleason score 7 with small tumor sizees ,PSA under 10and a clean DRE puts me at stage 1 intermediate risk  because of Gleason score 7  if yhe score was 6 then it would be stage 1 low risk   .so is this right    any way I can tell for sure by looking at pathology report ..thanks     I have learned not to trust any drs sad but u just cantit sad to think they care more about money that your life   some of them