66 yr old just found out and trying to make the best choice of treatments

2

Comments

  • Kentr
    Kentr Member Posts: 111
    #22
    gadan1 said:

    another question
    I had my biopsy September 30th I am somewhat concerned about bleeding from the biopsy. The Dr told me before the biopsy i would bleed for a few days and not to worry about it. I bled for 3 weeks gradually improving each day. I had a burning sensation when urinating and it too has gotten better, but it's still there. I have had 3 kidney stones, and it is a milder but similar feeling. I bled like a pig from my penis when i woke up from the biopsy but neither the nurse nor the Dr mentioned it. I am curious if anyone else experienced the same things.

    I have not forgotten all the advice and places to visit for more information,I am still searching for the best option for me, but I find the advice of those who have gone through it the most legitimate. Again Thanks

    Bleeding after biopsy
    Gadan,

    I did not experience bleeding after my biopsy but my doctor did tell me in advance it could happen and not to be overly concerned. If you are still experiencing some bleeding after three weeks, I would at least give him a call just to be on the safe side (it's probably nothing but it doesn;t hurt to check).

    Ah, kidney stones - now there's a fun little medical situation. I've had them three times as well and while I was going through the attack I was praying for the Angel of Death to show up so I could grab her by the throat and ask, "Where in the heck have you been?" :)
  • gadan1
    gadan1 Member Posts: 19
    #23
    Kentr said:

    Bleeding after biopsy
    Gadan,

    I did not experience bleeding after my biopsy but my doctor did tell me in advance it could happen and not to be overly concerned. If you are still experiencing some bleeding after three weeks, I would at least give him a call just to be on the safe side (it's probably nothing but it doesn;t hurt to check).

    Ah, kidney stones - now there's a fun little medical situation. I've had them three times as well and while I was going through the attack I was praying for the Angel of Death to show up so I could grab her by the throat and ask, "Where in the heck have you been?" :)

    i know how u felt
    Man do I know about wanting to die and just end the pain. My mother had 5 children and on kidney stone. She said if she had to choose between the two, she would go through 5 births instead of 1 stone.
    I"m no longer bleeding, but i have some remaining pain when i urinate. That is what i'm concerned about with that issue.
  • Kentr
    Kentr Member Posts: 111
    #24
    gadan1 said:

    i know how u felt
    Man do I know about wanting to die and just end the pain. My mother had 5 children and on kidney stone. She said if she had to choose between the two, she would go through 5 births instead of 1 stone.
    I"m no longer bleeding, but i have some remaining pain when i urinate. That is what i'm concerned about with that issue.

    Pain while urinating
    Gadan,

    I doubt that's a major issue but call your doctor anyway - it's probably a very minor infection. I'm sure you had to take an antibiotic like Cipro prior to, and after, the biopsy but maybe you needed to take it a little longer? Look at it this way. A bipopsy of your prostate is anything but a "normal" experience for your body so it has every right to protest a little. Ask the doctor.
  • gadan1
    gadan1 Member Posts: 19
    #25
    Kentr said:

    Pain while urinating
    Gadan,

    I doubt that's a major issue but call your doctor anyway - it's probably a very minor infection. I'm sure you had to take an antibiotic like Cipro prior to, and after, the biopsy but maybe you needed to take it a little longer? Look at it this way. A bipopsy of your prostate is anything but a "normal" experience for your body so it has every right to protest a little. Ask the doctor.

    today
    Today, i purchased the book by Dr. Walsh from Amazon and took the Sloan-Kettering PC Nomogr test.
    I was encouraged by the Current Model results, and less so bye the Historical Model. Bottom line is, I caught it early, and my odds are petty good of beating this. Another program says I can expect to live an additional 15 yrs on average. I plan on beating that score.
  • lewvino
    lewvino Member Posts: 1,010
    #26
    gadan1 said:

    today
    Today, i purchased the book by Dr. Walsh from Amazon and took the Sloan-Kettering PC Nomogr test.
    I was encouraged by the Current Model results, and less so bye the Historical Model. Bottom line is, I caught it early, and my odds are petty good of beating this. Another program says I can expect to live an additional 15 yrs on average. I plan on beating that score.

    Dr. Walsh is surgeon and
    Dr. Walsh is surgeon and talks from traditional surgery perspective but is an excellent book and would apply for Davinci if you go with that method.

    Remember on the historical models that treatments have changed greatly in the last 10 years!

    Larry
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #27
    gadan1 said:

    another question
    I had my biopsy September 30th I am somewhat concerned about bleeding from the biopsy. The Dr told me before the biopsy i would bleed for a few days and not to worry about it. I bled for 3 weeks gradually improving each day. I had a burning sensation when urinating and it too has gotten better, but it's still there. I have had 3 kidney stones, and it is a milder but similar feeling. I bled like a pig from my penis when i woke up from the biopsy but neither the nurse nor the Dr mentioned it. I am curious if anyone else experienced the same things.

    I have not forgotten all the advice and places to visit for more information,I am still searching for the best option for me, but I find the advice of those who have gone through it the most legitimate. Again Thanks

    Also, there will be blood in semen for
    a while
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #28
    gadan1 said:

    another question
    I had my biopsy September 30th I am somewhat concerned about bleeding from the biopsy. The Dr told me before the biopsy i would bleed for a few days and not to worry about it. I bled for 3 weeks gradually improving each day. I had a burning sensation when urinating and it too has gotten better, but it's still there. I have had 3 kidney stones, and it is a milder but similar feeling. I bled like a pig from my penis when i woke up from the biopsy but neither the nurse nor the Dr mentioned it. I am curious if anyone else experienced the same things.

    I have not forgotten all the advice and places to visit for more information,I am still searching for the best option for me, but I find the advice of those who have gone through it the most legitimate. Again Thanks

    Bleeding after biopsy
    gadan1, I guess I was lucky and did not bleed but was warned about it. If you are bleeding that long you definitely need to get that checked...that's just not right. I just had my biopsy yesterday my prostate was only 17 grams so they only took 8 samples 2 from a nodgle they found in a DRE exam. I have a PSA of 6.125 and am expecting to have cancer as my father did in his autopsey report at age 71. He had a gleason of 3+3=6 and a psa level reported of 31. He did not die from it though his death was a result of advanced alzhiemers most likely caused by a head injury in the Korean War.

    I took the antibiotics like clockwork because I did not want any complications... took my last pill of Ciprofloxacin Hcl tonight. I am already doing research on this so when I get my stats I will know or hope to know what I want to do. I like the Divinci robot method if it's an option for me for the many reasons it's touted however I do believe the most important factor wether you choose that method or any other surgery is the surgeon himself.

    I think I am going to try and take my biopsey results and go several places with it Mayo Clinic, perhaps John Hopkins and maybe one other place. I am only 52 and am in pretty good health from being a competitive distance runner most of my young life. I have put on some weight and become sedentary over the last 5 years due to arthritis in my hip joints...something I probably inherited from my mother. If I do have cancer it will probably provoke me into getting physical again despite the arthritis because it makes me mad I have it after being so healthy all my life. There are many things they can do for incontinence now ...after the fact with surgery etc...ED is not really and issue for me because I figure if it comes to that I will just channel my energies elsewhere....I'd rather have control over peeing than sexual function if I could choose. I like Sonny's approach in finding a surgeon that would be just as concerned about the incontinence and ed functions as erradicating the cancer. I may look into contacting his doctor at Henery Ford Medical Institute. I wish the best for you choosing your path....and I'm now preparing for that call from the uroligist to tell me my stats....no matter what it is, just got to deal with it...analyze it....determine the best path for my situation....and move on down the road making more of everyday I am alive with no regrets. One thing I know...I am in control of what I do with this choice and I am not going to let money determine that...I will go into debt if I have to in order to find the very best doctor and method for what I am handed in the biopsy results. I have done some reading on the Mayo Clinic....here is what I know...first hand from experience...my daughter had both her uereters surgically re-implanted because of reflux that was causing her many reocurring infections from an early age of 1 to 5 when she had it done at Mayo in Rochester. That hospital is simply amazing. Another thing I have learned - read on their site - they have 20,000 PROSTATE surgery patients with detailed pre and post records in their data base that allows them to build a treatment profile for best success based on that data. Mayo Clinic uses their own data from their own research and patients to guide and prognosticate current cases rather than relying on others research and cases to establish best practices - its a different approach that has been very successful for them. For this reason I want and value their oppinion and will seek it. Again the best for your search and decision process. I will post back here again once I get my results from the biopsey.

    GOD BLESS YOU ALL


    randy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #29
    randy_in_indy said:

    Bleeding after biopsy
    gadan1, I guess I was lucky and did not bleed but was warned about it. If you are bleeding that long you definitely need to get that checked...that's just not right. I just had my biopsy yesterday my prostate was only 17 grams so they only took 8 samples 2 from a nodgle they found in a DRE exam. I have a PSA of 6.125 and am expecting to have cancer as my father did in his autopsey report at age 71. He had a gleason of 3+3=6 and a psa level reported of 31. He did not die from it though his death was a result of advanced alzhiemers most likely caused by a head injury in the Korean War.

    I took the antibiotics like clockwork because I did not want any complications... took my last pill of Ciprofloxacin Hcl tonight. I am already doing research on this so when I get my stats I will know or hope to know what I want to do. I like the Divinci robot method if it's an option for me for the many reasons it's touted however I do believe the most important factor wether you choose that method or any other surgery is the surgeon himself.

    I think I am going to try and take my biopsey results and go several places with it Mayo Clinic, perhaps John Hopkins and maybe one other place. I am only 52 and am in pretty good health from being a competitive distance runner most of my young life. I have put on some weight and become sedentary over the last 5 years due to arthritis in my hip joints...something I probably inherited from my mother. If I do have cancer it will probably provoke me into getting physical again despite the arthritis because it makes me mad I have it after being so healthy all my life. There are many things they can do for incontinence now ...after the fact with surgery etc...ED is not really and issue for me because I figure if it comes to that I will just channel my energies elsewhere....I'd rather have control over peeing than sexual function if I could choose. I like Sonny's approach in finding a surgeon that would be just as concerned about the incontinence and ed functions as erradicating the cancer. I may look into contacting his doctor at Henery Ford Medical Institute. I wish the best for you choosing your path....and I'm now preparing for that call from the uroligist to tell me my stats....no matter what it is, just got to deal with it...analyze it....determine the best path for my situation....and move on down the road making more of everyday I am alive with no regrets. One thing I know...I am in control of what I do with this choice and I am not going to let money determine that...I will go into debt if I have to in order to find the very best doctor and method for what I am handed in the biopsy results. I have done some reading on the Mayo Clinic....here is what I know...first hand from experience...my daughter had both her uereters surgically re-implanted because of reflux that was causing her many reocurring infections from an early age of 1 to 5 when she had it done at Mayo in Rochester. That hospital is simply amazing. Another thing I have learned - read on their site - they have 20,000 PROSTATE surgery patients with detailed pre and post records in their data base that allows them to build a treatment profile for best success based on that data. Mayo Clinic uses their own data from their own research and patients to guide and prognosticate current cases rather than relying on others research and cases to establish best practices - its a different approach that has been very successful for them. For this reason I want and value their oppinion and will seek it. Again the best for your search and decision process. I will post back here again once I get my results from the biopsey.

    GOD BLESS YOU ALL


    randy

    Randy
    Good luck for the biopsy results.............my good thoughts and prayers are with you.......Ira
  • Kentr
    Kentr Member Posts: 111
    #30
    gadan1 said:

    Again, Thanks
    Your last reply about did it. I had tears in my eyes while reading it, this coming from a retired policeman. You sound so much like me and what I am feeling. As for the ED, the days of putting jellybeans in a jar each time are long past. Lately, it is more an event than a routine, but we are both OK with that since parts of performance have been negatively affected by the diabetes, high blood pressure meds and menopause.
    If there are others out there that have made the choice, gone through treatment, and have an opinion, please share them with me. I am going to give myself at least two weeks to research and decide. Your input would be invaluable to me.
    Again, Thanks

    You're most welcome Gadan and....
    ....There's nothing wrong with getting tears in your eyes! Maybe this will be a shock to you and maybe it won't but....police officers are people with feelings just like everyone else. I spent some time in military police and worked closely with law enforcement for several years in the past so I know what I'm talking about.
  • 2ndBase
    2ndBase Member Posts: 220
    #31
    Options
    Radiation and hormone treatment would be a good choice for your case. there is less problems going this way. It is what I did and I had a Gleason of 9 and psa of 24. Mine had already spread and though this did not cure it ( nothing does if it spreads) I have no cancer in the prostate today. My dad took just radiation years ago and lived to be 90. He was about your age when dx. All the best.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #32
    hopeful and optimistic said:

    Randy
    Good luck for the biopsy results.............my good thoughts and prayers are with you.......Ira

    Thanks Ira on Biopsy
    I just want a low Gleason Score and stage 2 at worse for containment. I have resolved that I have it.

    Randy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #33
    randy_in_indy said:

    Thanks Ira on Biopsy
    I just want a low Gleason Score and stage 2 at worse for containment. I have resolved that I have it.

    Randy

    A different viewpoint
    I tend to cross the bridge when I come to it, that is why you are being tested....Now depending on your results there are different options that you have.......for example if you do not have the disease, which I hope for, there are various options available.......there is a new drug out called avodart which is a preventive.....for those who have not been diagnosed, and are at a high risk........there are side effect for this drug...

    Now if you test positive , and your numbers are low, you can do active surveillance as I am doing.............it can be indefinate.........anyway, Randy please, please cross the bridge when you come to it....then make the best decision based on the information that you have.

    It ain't...till it is.

    Ira
  • gadan1
    gadan1 Member Posts: 19
    #34
    randy_in_indy said:

    Bleeding after biopsy
    gadan1, I guess I was lucky and did not bleed but was warned about it. If you are bleeding that long you definitely need to get that checked...that's just not right. I just had my biopsy yesterday my prostate was only 17 grams so they only took 8 samples 2 from a nodgle they found in a DRE exam. I have a PSA of 6.125 and am expecting to have cancer as my father did in his autopsey report at age 71. He had a gleason of 3+3=6 and a psa level reported of 31. He did not die from it though his death was a result of advanced alzhiemers most likely caused by a head injury in the Korean War.

    I took the antibiotics like clockwork because I did not want any complications... took my last pill of Ciprofloxacin Hcl tonight. I am already doing research on this so when I get my stats I will know or hope to know what I want to do. I like the Divinci robot method if it's an option for me for the many reasons it's touted however I do believe the most important factor wether you choose that method or any other surgery is the surgeon himself.

    I think I am going to try and take my biopsey results and go several places with it Mayo Clinic, perhaps John Hopkins and maybe one other place. I am only 52 and am in pretty good health from being a competitive distance runner most of my young life. I have put on some weight and become sedentary over the last 5 years due to arthritis in my hip joints...something I probably inherited from my mother. If I do have cancer it will probably provoke me into getting physical again despite the arthritis because it makes me mad I have it after being so healthy all my life. There are many things they can do for incontinence now ...after the fact with surgery etc...ED is not really and issue for me because I figure if it comes to that I will just channel my energies elsewhere....I'd rather have control over peeing than sexual function if I could choose. I like Sonny's approach in finding a surgeon that would be just as concerned about the incontinence and ed functions as erradicating the cancer. I may look into contacting his doctor at Henery Ford Medical Institute. I wish the best for you choosing your path....and I'm now preparing for that call from the uroligist to tell me my stats....no matter what it is, just got to deal with it...analyze it....determine the best path for my situation....and move on down the road making more of everyday I am alive with no regrets. One thing I know...I am in control of what I do with this choice and I am not going to let money determine that...I will go into debt if I have to in order to find the very best doctor and method for what I am handed in the biopsy results. I have done some reading on the Mayo Clinic....here is what I know...first hand from experience...my daughter had both her uereters surgically re-implanted because of reflux that was causing her many reocurring infections from an early age of 1 to 5 when she had it done at Mayo in Rochester. That hospital is simply amazing. Another thing I have learned - read on their site - they have 20,000 PROSTATE surgery patients with detailed pre and post records in their data base that allows them to build a treatment profile for best success based on that data. Mayo Clinic uses their own data from their own research and patients to guide and prognosticate current cases rather than relying on others research and cases to establish best practices - its a different approach that has been very successful for them. For this reason I want and value their oppinion and will seek it. Again the best for your search and decision process. I will post back here again once I get my results from the biopsey.

    GOD BLESS YOU ALL


    randy

    Thaks again guys
    Thanks everyone for the continued input. I know there have been many replies to my original post and I am very very appreciative. I may sound indecisive and may be, but I just don't want to have the surgery and regret my choice if there are problems. I also see in the many responses the thought processes used to decide on treatment. I hope that tomorrow, next week, next month, or next year, someone like us sees them and realizes there is no single reaction or deliberative process.
    In watching the news yesterday, hearing the American Medical Association issued a new position on cancer testing. If I understood it correctly, their research shows that after years of educating men and woman about early screening for cancers, specifically breast and prostate cancers, they have seen very minor drops in the success rates after treatments. They are asking if surgeries are being used way too often. It makes me rethink the Active Surveillance option. It is not my nature to rely on luck or chance, but I dread the possibility of living with incontinence.
  • muttsrule
    muttsrule Member Posts: 52
    #35
    which route to take?
    Hey, gadan1. What were the three choices your urologist gave? I can just recommend a couple of research sources, which somebody may have already suggested: 1) "100 Questions and Answers about Prostate Cancer," 2nd ed. 2) "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer," 2nd ed. Get this through Johns Hopkins (if I leave this site to get the reference for you, I'll lose my connection here). Google for Johns Hopkins prostate or some such phrase. I'll check in here with the url later, in any case. Both offer good insights on choosing treatment.
  • finbar
    finbar Member Posts: 26
    #36
    Good choices
    I'm 17 years older than you with a similar Gleason score and with Type 2 diabetes under control. My urologist gave me the bad news, said the cutoff age for surgery was 74 and promptly gave me a Lupron hormone shot. Then he recommended a radiologist who proceeded to outline a treatment program for me that included two years of Lupron, 26 weeks of radiation plus the insertion of multiple radiation seeds. I asked many questions about side effects
    and was seriouly disheartened to hear the long list. Seeking a second opinion, I met with a top surgeon urologist, experienced in radical prostectomy who said I'd be a candidate for surgery with my cardiologist's approval. I took some tests and was cleared. I then spoke to a number of the surgeon's patients who were very satisfied with their outcomes but seemed to
    side-step questions about their libido. Not fully satisfied, I learned of robotic prosectectomy thru the internet and sought further information from doctor friends.
    Determined to have the canceer excised from my body, I traveled to NYC to meet with Dr. Ash Tewari at Cornell NY Presbyterian Hospital. Dr. Tewari has done, not hundreds, but thousands of robotic pros. A 1-1/2 inch scar is testimony to a remarkable procedure - in one day and out the next with three three-month intervals of PSA testing of near zeros. The experience is vitally important in not only removing all cancerous tissue but in avoiding injury to surrounding organs and tissue. And added to this is the capability of implementing nerve-sparing techniques. I must add that the Lupron gave me a number of problems. Thank GD I avoided that treatment.
  • HIFUgal
    HIFUgal Member Posts: 58
    #37
    HIFU High Intensity Focused
    HIFU High Intensity Focused Ultrasound. It's been in use in Europe for 18 years, the rest of the world for 6 years.

    My husband had HIFU last year and no discomfort and no side effects, we've sent in 9 other guys who all report no problems too. We are all very happy! The major decision is to find a doctor who has done many procedures as it's a percise treatment. Dr. Scionti has been treating men with prostate cancer with HIFU for 5 or 6 years. He is also the doc who teaches other urologists around the world. He is the most caring doctor that I've ever met.

    It cost $25,000. and treatment must be out of the USA, Nassau or Puerto Vallarta. He brings his entire medical team with him each weekend. Go to HifuCareCenter.com or NYHifucenter.com HIFU is in clinical trials here in the USA. It's the best money we've ever spent!
  • gadan1
    gadan1 Member Posts: 19
    #38
    HIFUgal said:

    HIFU High Intensity Focused
    HIFU High Intensity Focused Ultrasound. It's been in use in Europe for 18 years, the rest of the world for 6 years.

    My husband had HIFU last year and no discomfort and no side effects, we've sent in 9 other guys who all report no problems too. We are all very happy! The major decision is to find a doctor who has done many procedures as it's a percise treatment. Dr. Scionti has been treating men with prostate cancer with HIFU for 5 or 6 years. He is also the doc who teaches other urologists around the world. He is the most caring doctor that I've ever met.

    It cost $25,000. and treatment must be out of the USA, Nassau or Puerto Vallarta. He brings his entire medical team with him each weekend. Go to HifuCareCenter.com or NYHifucenter.com HIFU is in clinical trials here in the USA. It's the best money we've ever spent!

    Emory
    I am in process of having my medical records sent to Emory University Hospital for review. I hoped to have them reviewed by Dr. Marshall but he is on medical leave. Does anyone have any experience with Emory's Cancer Center and can they suggest a surgeon or do you know anything about Dr. Peter Nieh, MD, Associate Professor of Urology, Director of Uro-oncology Center? Thanks
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #39
    hopeful and optimistic said:

    A different viewpoint
    I tend to cross the bridge when I come to it, that is why you are being tested....Now depending on your results there are different options that you have.......for example if you do not have the disease, which I hope for, there are various options available.......there is a new drug out called avodart which is a preventive.....for those who have not been diagnosed, and are at a high risk........there are side effect for this drug...

    Now if you test positive , and your numbers are low, you can do active surveillance as I am doing.............it can be indefinate.........anyway, Randy please, please cross the bridge when you come to it....then make the best decision based on the information that you have.

    It ain't...till it is.

    Ira

    This is frustrating typing a novel only for it to dissapear and
    never post! Oh now it works because I am only writing a meanial amount...Sheesh..hit the preview comment and it goes away never to return even after hitting back button...I poured my entire plan out...discussed dr's stats...asked questions..this sucks...it's too late now and I have to go to bed.
  • tpelle
    tpelle Member Posts: 184
    #40
    randy_in_indy said:

    This is frustrating typing a novel only for it to dissapear and
    never post! Oh now it works because I am only writing a meanial amount...Sheesh..hit the preview comment and it goes away never to return even after hitting back button...I poured my entire plan out...discussed dr's stats...asked questions..this sucks...it's too late now and I have to go to bed.

    Frustrations
    Randy, I lost two posts a couple days ago trying to "preview." Finally realized, like you, that "preview means delete". Then I tried to use "contact us." Everytime I tried to answer their security question like what is 4 + 2, when I entered 6 and then tried to send, I'd get another message that my "6" was incorrect. Then I'd get another math question. This went on and on and I was never able to get a complaint message off. They certainly don't make it easy. tpelle
  • bigxbadxjohn
    bigxbadxjohn Member Posts: 15
    #41
    gadan1 said:

    Emory
    I am in process of having my medical records sent to Emory University Hospital for review. I hoped to have them reviewed by Dr. Marshall but he is on medical leave. Does anyone have any experience with Emory's Cancer Center and can they suggest a surgeon or do you know anything about Dr. Peter Nieh, MD, Associate Professor of Urology, Director of Uro-oncology Center? Thanks

    Decision making
    Hello

    I faced pretty much the same decisions that you are faced with now ten years ago. I was 57 years old and in otherwise good health. My PSA was in the 5's and Gleason was 7.

    At that time, robotic surgery was not available so I chose the open surgery. It was an excellent choice for me. Today I remain 100% percent cancer free. The side affects have been totally manageable. I think it is very rewarding to return to a "cancer free" status if possible.

    For that reason, I would strongly consider the robotic option today. Just make certain the surgeon has performed many successful robotic prostate surgeries.

    If you are near a Cleveland Clinic, where you live, that could be a good place to inquire. Their Urology/Oncology continuously enjoys top ratings in the U.S. News comparison reports.

    Best wishes to you,

    John

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