new patient

abfbob
abfbob Member Posts: 8
edited March 2014 in Prostate Cancer #1
found out yesterday I have prostate cancer. doctor discovered problem thru blood work Im 45 with no other symptoms. my psa was 7. had biopsy 2 weeks ago and got results yesterday. doctor is recomending robotic removal,but ordered ct scan and bone scan. is this normal or should i be more worried. sorry i dont have more imfo but this kind of hit me hard. he did say that the numbers showed it was on the low side of aggressiveness.

Comments

  • Olee
    Olee Member Posts: 97
    #2
    New Survivor
    First I want to say you are among friends here and we all know what you are going through. If you have any questions, there is not a man here that hasn't experienced it, you can rest assured, please ask away. I came here in November of last year after being diagnosed at age 40 and found a wealth of information and support from the survivors here. I just had robotic surgery in February of this year and besides a little incontinence, I'm doing fine. My PSA was 5.4 with 9 of the 18 cores being positive. The tests that your Dr. ordered are perfectly normal and are done to ensure that the cancer hasn't spread. In the beginning we are just diagnosed, no one knows how long we've had cancer, the intensity etc. So the tests are done to access where things are in relation to the cancer. I would speak to a few survivors for advice,read some of the prostate cancer websites and set up a few consultations with surgeons if surgery is what you decide. There's a wealth of information out there, but it was overwhelming to me at times and even confusing, so sorting it out and making a decision can take some time. My personal advice is to think it through, lean on your loved ones, you're going through a stressful time right now, emotions will be like a rollercoaster. Don't rush into any decision, think it through, and remember are among friends who understand what you're going through.
  • abfbob
    abfbob Member Posts: 8
    #3
    Olee said:

    New Survivor
    First I want to say you are among friends here and we all know what you are going through. If you have any questions, there is not a man here that hasn't experienced it, you can rest assured, please ask away. I came here in November of last year after being diagnosed at age 40 and found a wealth of information and support from the survivors here. I just had robotic surgery in February of this year and besides a little incontinence, I'm doing fine. My PSA was 5.4 with 9 of the 18 cores being positive. The tests that your Dr. ordered are perfectly normal and are done to ensure that the cancer hasn't spread. In the beginning we are just diagnosed, no one knows how long we've had cancer, the intensity etc. So the tests are done to access where things are in relation to the cancer. I would speak to a few survivors for advice,read some of the prostate cancer websites and set up a few consultations with surgeons if surgery is what you decide. There's a wealth of information out there, but it was overwhelming to me at times and even confusing, so sorting it out and making a decision can take some time. My personal advice is to think it through, lean on your loved ones, you're going through a stressful time right now, emotions will be like a rollercoaster. Don't rush into any decision, think it through, and remember are among friends who understand what you're going through.

    Thank you for your reply,and
    Thank you for your reply,and your comments. Just being on this website and reading other stories has made me feel better than anything else.Im sure by the next time I talk to my urologist Ill be more level headed,and I think putting my questions on paper will help.Once again thank you
  • tonybear
    tonybear Member Posts: 90
    #4
    survivor
    i am 54 and found out last july right after my 54th birthday that i had prostate cancer. the news will shake you and those who love you. breath, relax and know that there are a lot of guys on here who have made it through. my cancer had just started but at my wifes insistance they ran a lot scans and test to ease her mind. it is a good thing to have the extra test run for our peace of mind and those who care about us. i had brachy therapy and tomo radiation for my treatment. but this was after discussing my options with my doctor. look at the options and with the doctors advise chose what you and your loved ones can live with. i have found a lot of support here and great advice on how to live and fight. you can do this and enjoy life again. go fishing or walking and breath easy. prayers and blessings for you and those close to you. tony
  • RRMCJIM
    RRMCJIM Member Posts: 149
    #5
    tonybear said:

    survivor
    i am 54 and found out last july right after my 54th birthday that i had prostate cancer. the news will shake you and those who love you. breath, relax and know that there are a lot of guys on here who have made it through. my cancer had just started but at my wifes insistance they ran a lot scans and test to ease her mind. it is a good thing to have the extra test run for our peace of mind and those who care about us. i had brachy therapy and tomo radiation for my treatment. but this was after discussing my options with my doctor. look at the options and with the doctors advise chose what you and your loved ones can live with. i have found a lot of support here and great advice on how to live and fight. you can do this and enjoy life again. go fishing or walking and breath easy. prayers and blessings for you and those close to you. tony

    next step
    I am 54, found out in March 09, and just had my surgery friday the 22nd. I cried, got mad, had a pity party for awhile, no symptoms, PSA 4.53. I am post op waiting for the cath to be removed mon. ASk questions, read, make phone calls, lean on your loved ones. My concerns were all the options available. How to pick which one is right for me. I relied on a lot of the guys on this site to get me thru it, one day at a time. We are all here for you, read our posts, ask as many questions as you can. You will find what is right for you. You are young, have lots of time ahead of you, you will be in our thoughts.
    Jim
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #6
    Hi
    We all have gone thru shock , and all kinds of negative feelings during the first month or so. Be aware that prostate cancer progresses in months and years, so speak to doctors in various specialties for treatment. Take your time to make the right decision with an artist, the best in the field.

    Geneally a bone scan is over diagnoses. The American Urological Association does not recommend for a gleason under 8. What is your Gleason. You need to have a copy of every test that you take for your records, so you can bring it with you to the various doc that you need to see, and answer questions. You need to be empowered. I would probably wait to take these tests. From what you are saying , this doc is pushing. What is the docs experience with robotic surgery, how many has he done?

    I is critical for you to get a second opinion on the pathology of the biopsy with an outside source. Jon Epstein at Johns Hopkins is an excellent choice.

    Qustions: How many cores were taken; how many positive? What percent involvement in each core? What is your Gleason? Get a copy of the biopsy pathology.

    I am doing "active surveillence". One of the docs that I saw told me that I had five weeks to make a decision, and wanted me to get a bone scan and an MRI. I did neither but saw another doc, and expert who specializes in prostate research and robotic surgery at a major hospital who basically told me that this guy was trying to take advantage of me. There are sharks out there, get a second opinion on this doc before doing anything.

    Good luck,

    Come back with your info

    Ira
  • lewvino
    lewvino Member Posts: 1,010
    #7
    We all know what you are going through. I am 54 and found out about 6 weeks ago about my Prostate Cancer. I have not started treatment yet but will most likely have the Robotic Surgery. I am meeting with that Dr. on June 8th. Finding out was devastating and i am still having high days and low days. I think once I have meet this surgeon and have an attack plan in place things will start settling down in my mind. Read about your cancer, Talk to others, talk to us. Find a local support group if you can.

    The tests are local, I've had the CT scan, Totally painless, and was told they will most likely schedule the Bone scan after I see the Dr. on June 8th. As all ready mentioned I think these are just normal tests they like to run.

    Larry
  • abfbob
    abfbob Member Posts: 8
    #8
    lewvino said:

    We all know what you are going through. I am 54 and found out about 6 weeks ago about my Prostate Cancer. I have not started treatment yet but will most likely have the Robotic Surgery. I am meeting with that Dr. on June 8th. Finding out was devastating and i am still having high days and low days. I think once I have meet this surgeon and have an attack plan in place things will start settling down in my mind. Read about your cancer, Talk to others, talk to us. Find a local support group if you can.

    The tests are local, I've had the CT scan, Totally painless, and was told they will most likely schedule the Bone scan after I see the Dr. on June 8th. As all ready mentioned I think these are just normal tests they like to run.

    Larry

    thank you
    once again I cant thank everyone enough.All the advice and support is overwhelming.I plan on contacting my doctor on monday to get all my numbers. Just waiting till then seems like forever.I understand that its just an everyday job to the doctors and office workers.Im still pissed that they didnt take the time to give me all this when I left the office on Friday.They should have known that after the initial shock I would start having these questions.I just wish I had come to this site before I went to get my results.Anyone who was smarter than me and is reading this before their results,please read what everyone has to say.Then sit down with a loved one and have alist of any question you can think of.Its not being negative its just being prepared. It will save you alot of anxiety,god forebid your test comes back positive.Because trust me you will not be able to think when youher those words.God bless everyone at this site,and once again thank you
  • lewvino
    lewvino Member Posts: 1,010
    #9
    abfbob said:

    thank you
    once again I cant thank everyone enough.All the advice and support is overwhelming.I plan on contacting my doctor on monday to get all my numbers. Just waiting till then seems like forever.I understand that its just an everyday job to the doctors and office workers.Im still pissed that they didnt take the time to give me all this when I left the office on Friday.They should have known that after the initial shock I would start having these questions.I just wish I had come to this site before I went to get my results.Anyone who was smarter than me and is reading this before their results,please read what everyone has to say.Then sit down with a loved one and have alist of any question you can think of.Its not being negative its just being prepared. It will save you alot of anxiety,god forebid your test comes back positive.Because trust me you will not be able to think when youher those words.God bless everyone at this site,and once again thank you

    Once you get your numbers make sure and share them with us. Get your PSA numbers and your biopsy's numbers which they call Gleason Score. Ask the Doctor if there was any perneural invasion noticed. Find out which lobes of the prostate the cancer was found in. When my Doctor told me it was by phone call,,,,You know the words you don't want to hear...We found cancer in the biopsys and please bring your wife with you to the appointment. The Appointment was several days later and I was to stunned during the initial phone call to even know what answers to ask! I've learned FAST though! The Doctor spent over 1 hr with my wife and me that day in his office going over treatment options. Then the tough part is deciding WHICH treatment option to go with. A good Book I found that you can most likely get at your local bookstores is Prostate Cancer for Dummies. Its written by a Doctor that came down with Prostate Cancer. He has lots of good information in the Book and he has been on both sides treating patients and then being treated himself.

    Larry
  • lewvino
    lewvino Member Posts: 1,010
    #10
    I read your post earlier and just reread it. Cancer is cancer but be glad its on the low side of aggressiveness. That means you don't have to rush into treatment. Thing about it and do your homework to find what you think will be best for you. My father was diagnosed with a Gleason 3 back in 1996 and is doing fine. Mine on the other hand was just diagnosed and a Gleason 7 and told it mine is bordeline aggressive.

    Larry
  • RRMCJIM
    RRMCJIM Member Posts: 149
    #11
    lewvino said:

    I read your post earlier and just reread it. Cancer is cancer but be glad its on the low side of aggressiveness. That means you don't have to rush into treatment. Thing about it and do your homework to find what you think will be best for you. My father was diagnosed with a Gleason 3 back in 1996 and is doing fine. Mine on the other hand was just diagnosed and a Gleason 7 and told it mine is bordeline aggressive.

    Larry

    My Gleason was 3+3=6, not the least aggressive , but middle of the chart. I had done so much research on my cancer, talked with everyone on this site, JoeMac had sent me links to site with open talks with those in the medical field. I did it all, even talked to my Dr about active survellance , But in the end, I had to do what was best for me and my family.I only had one sample of 12 taken showing positive. Still I know I have side effects to deal with, I know my life will change some, but my cancer is gone, I won't wonder if it is getting more aggressive, or if it is spreading outside the prostate. That for me was the deciding factor. I can't thank all the men on this site enough for their sharing with me , the exchanging of e-mail addys, of being there when needed. I have never felt alone in this very hard time of our lives.
    Jim
  • abfbob
    abfbob Member Posts: 8
    #12
    RRMCJIM said:

    My Gleason was 3+3=6, not the least aggressive , but middle of the chart. I had done so much research on my cancer, talked with everyone on this site, JoeMac had sent me links to site with open talks with those in the medical field. I did it all, even talked to my Dr about active survellance , But in the end, I had to do what was best for me and my family.I only had one sample of 12 taken showing positive. Still I know I have side effects to deal with, I know my life will change some, but my cancer is gone, I won't wonder if it is getting more aggressive, or if it is spreading outside the prostate. That for me was the deciding factor. I can't thank all the men on this site enough for their sharing with me , the exchanging of e-mail addys, of being there when needed. I have never felt alone in this very hard time of our lives.
    Jim

    got my numbers
    Talked to dr today and got my numbers. My gleason was 6 with 6 positives out of 12.He also said he ordered the scans because through the years there has been times although very seldom he was glad he did.Even with gleasons under 8.Theirs no reason to believe at this point that its spread. scans are scheduled for friday.Well Im getting ready to go to work, so Ill talk to everyone tommorrow. Bob
  • lewvino
    lewvino Member Posts: 1,010
    #13
    abfbob said:

    got my numbers
    Talked to dr today and got my numbers. My gleason was 6 with 6 positives out of 12.He also said he ordered the scans because through the years there has been times although very seldom he was glad he did.Even with gleasons under 8.Theirs no reason to believe at this point that its spread. scans are scheduled for friday.Well Im getting ready to go to work, so Ill talk to everyone tommorrow. Bob

    got my numbers
    Sounds like your mind has eased some. Cancer is cancer and we have to face it. I've seen lots on here with the Gleason 6. Mine is Gleason 7 with pernueral invasion noted.
    I was also told that after I visit this specialist on June 8th he will most like order a Bone scan. I've all ready had the Cat scan.

    Larry
  • abfbob
    abfbob Member Posts: 8
    #14
    lewvino said:

    got my numbers
    Sounds like your mind has eased some. Cancer is cancer and we have to face it. I've seen lots on here with the Gleason 6. Mine is Gleason 7 with pernueral invasion noted.
    I was also told that after I visit this specialist on June 8th he will most like order a Bone scan. I've all ready had the Cat scan.

    Larry

    waiting for results
    Had my cat scan and bone scan friday. I meet with surgeon on june 12.I think Ill wait till then to get my results,because if its bad news I probably wont feel like working for a couple of days.Knowing the results a few day earlier is not going to change anything.Any advice on questions I should ask the surgeon from anyone who has been through this would be great. Thanks,Bob
  • lewvino
    lewvino Member Posts: 1,010
    #15
    abfbob said:

    waiting for results
    Had my cat scan and bone scan friday. I meet with surgeon on june 12.I think Ill wait till then to get my results,because if its bad news I probably wont feel like working for a couple of days.Knowing the results a few day earlier is not going to change anything.Any advice on questions I should ask the surgeon from anyone who has been through this would be great. Thanks,Bob

    I've made a long list of
    I've made a long list of questions I will be asking the surgeon I am meeting on Monday June 8th. If you want send me your email address to lewvino@yahoo.com and i'll forward them to you.

    There are lots of the generic type questions, then I added these four questions yesterday.

    • Based on your experience, why is this the right approach for me?
    • What will you do if you find cancer outside of my prostate during the surgery?
    • Will that change my prognosis and future treatment?
    • What will we do to monitor my prostate cancer following the surgery?

    Also I have one curveball question I'm going to toss out to the Dr. I have heard so many good things about this Dr. So to find out what he is really like I'm going to point blank ask "I have heard and read many excellent things about you as a person and as a surgeon, Can you share with me something that you consider bad?" Just to see how he reacts to the question.

    Sometimes strange questions will tell you volumes about the person on how they react.

    Larry (lewvino)
  • RRMCJIM
    RRMCJIM Member Posts: 149
    #16
    lewvino said:

    I've made a long list of
    I've made a long list of questions I will be asking the surgeon I am meeting on Monday June 8th. If you want send me your email address to lewvino@yahoo.com and i'll forward them to you.

    There are lots of the generic type questions, then I added these four questions yesterday.

    • Based on your experience, why is this the right approach for me?
    • What will you do if you find cancer outside of my prostate during the surgery?
    • Will that change my prognosis and future treatment?
    • What will we do to monitor my prostate cancer following the surgery?

    Also I have one curveball question I'm going to toss out to the Dr. I have heard so many good things about this Dr. So to find out what he is really like I'm going to point blank ask "I have heard and read many excellent things about you as a person and as a surgeon, Can you share with me something that you consider bad?" Just to see how he reacts to the question.

    Sometimes strange questions will tell you volumes about the person on how they react.

    Larry (lewvino)

    prepared
    Sounds like your ready for your next step, information is the best stress reliever, it was for me. I have Kaiser ins, so options for me were limited to the Kaiser network. But within that network, there was plenty of options. I researched several Dr, and locations, until I found the right combination for me. People think with Kaiser, we don't have any choice, but that is not correct. Member services can assist you in many way, until you are comfortable, at least that is how it was in my case. Had I had a national health policy, with say Aetna, or similar, I would have probably gone to MD Anderson Univ Hospital in Houston. They have a #1 rating for cancer treatments in America. Most of their Dr's are also, professors, scientist, etc. But I am very happy with my Dr, my surgery was textbook, my recovery is constant, my outcome has been positive every day now. Everyday I seem to be improving, incontinence is down to just dripping when walking, sneezing, coughing. ED is a non-issue, working just fine. Keep us informed...
    Jim
  • abfbob
    abfbob Member Posts: 8
    #17
    RRMCJIM said:

    prepared
    Sounds like your ready for your next step, information is the best stress reliever, it was for me. I have Kaiser ins, so options for me were limited to the Kaiser network. But within that network, there was plenty of options. I researched several Dr, and locations, until I found the right combination for me. People think with Kaiser, we don't have any choice, but that is not correct. Member services can assist you in many way, until you are comfortable, at least that is how it was in my case. Had I had a national health policy, with say Aetna, or similar, I would have probably gone to MD Anderson Univ Hospital in Houston. They have a #1 rating for cancer treatments in America. Most of their Dr's are also, professors, scientist, etc. But I am very happy with my Dr, my surgery was textbook, my recovery is constant, my outcome has been positive every day now. Everyday I seem to be improving, incontinence is down to just dripping when walking, sneezing, coughing. ED is a non-issue, working just fine. Keep us informed...
    Jim

    post op
    hello everyone,its been awhile since Ive posted but I didnt feel i had much to offer.I had my davinci on july 22 and had catheter removed last friday.I now feel somewhat qualified to answer questions or offer advice and support to the men just starting this process.My surgery went better than most.My age and my surgeon has a lot to do with that.My total internal bleeding from my drain tube was 3 cc's.I had 2 partial erections while my catheter was still in,and have had full daily ones since removal.Incontinence is not an issue other than when I sneeze,cough,or get up too fast from the sitting position I leak a few dribbles.Biopsy came back showing all cells inside of prostate.If anyone has questions please ask or if you would like to talk in private just let me know.God bless everyone on this site.
  • lewvino
    lewvino Member Posts: 1,010
    #18
    abfbob said:

    post op
    hello everyone,its been awhile since Ive posted but I didnt feel i had much to offer.I had my davinci on july 22 and had catheter removed last friday.I now feel somewhat qualified to answer questions or offer advice and support to the men just starting this process.My surgery went better than most.My age and my surgeon has a lot to do with that.My total internal bleeding from my drain tube was 3 cc's.I had 2 partial erections while my catheter was still in,and have had full daily ones since removal.Incontinence is not an issue other than when I sneeze,cough,or get up too fast from the sitting position I leak a few dribbles.Biopsy came back showing all cells inside of prostate.If anyone has questions please ask or if you would like to talk in private just let me know.God bless everyone on this site.

    Glad to hear you are doing
    Glad to hear you are doing so well! My appt to meet the robot is next week. Shoot me your email address if you don't mind to lewvino@yahoo.com

    Sure I will have ton's of questions after surgery.

    Larry

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