Prostate treatment decisions?

halhester
halhester Member Posts: 1
edited March 2014 in Prostate Cancer #1
I have recently been diagnosed with prostate cancer. First discoverd with PSA of 5.5 followed by a transrectal biopsy. cancer size 2mm. I am currently having additional test to see if the cancer has spread to other areas of my body.

Comments

  • garystarbuck
    garystarbuck Member Posts: 1
    #2
    Hey, I, too, was recently diagnosed with prostate cancer. 5.1 PSA w/ a Gleason of 7. The cancer is contained in the prostate according to CT & bone scan. I would like to start a discussion group ... i wonder how to do that.
  • 2375dgg
    2375dgg Member Posts: 29
    #3
    garystarbuck said:

    Hey, I, too, was recently diagnosed with prostate cancer. 5.1 PSA w/ a Gleason of 7. The cancer is contained in the prostate according to CT & bone scan. I would like to start a discussion group ... i wonder how to do that.

    Almost a year ago, 12-31-99, my PSA was 6.5, up from 4.5 approx. had biopsy, Gleason 6, made the decision for hormonetreatment to shrink prostate and haveIodine 125 seeds. Anyone e-mailing me, will get my one yr. story of the experience.
  • 2375dgg
    2375dgg Member Posts: 29
    #4
    Be sure to consult with a cancer oncologist before you make a decision, urologists will want to do radical surgery. I suggest going to one of the CCC (comprehensive cancer centers to get evaluation and second opinion. e-mail me.
  • tiger
    tiger Member Posts: 277
    #5
    2375dgg said:

    Almost a year ago, 12-31-99, my PSA was 6.5, up from 4.5 approx. had biopsy, Gleason 6, made the decision for hormonetreatment to shrink prostate and haveIodine 125 seeds. Anyone e-mailing me, will get my one yr. story of the experience.

    Hi there, my name is Tiger and I am actually in the breast cancer chat myself, but I found out this evening that my friends dad has prostate cancer, his PSA is 7.4. At this point that is all the information that I have, apparently he is going for more tests next week, but i would like any information on treatments and what the PSA level numbers mean. We are in Northern Ontario and her dad is in New Brunswick, so I would like to try and help her out, her community down home is just a small town and she is concerned that her dad may not get the optimal treatments. I would greatly appreciate any information that anyone can give me, and I will log in again as I find things out. Thank you for your time.
    I wish you all the best for the future.
    Tiger.
  • ruger
    ruger Member Posts: 1
    #6
    garystarbuck said:

    Hey, I, too, was recently diagnosed with prostate cancer. 5.1 PSA w/ a Gleason of 7. The cancer is contained in the prostate according to CT & bone scan. I would like to start a discussion group ... i wonder how to do that.

    I am a survivor of radical prostate surgery and would be glad to discuss my experiences with this procedure if you are interested.
  • 2375dgg
    2375dgg Member Posts: 29
    #7
    tiger said:

    Hi there, my name is Tiger and I am actually in the breast cancer chat myself, but I found out this evening that my friends dad has prostate cancer, his PSA is 7.4. At this point that is all the information that I have, apparently he is going for more tests next week, but i would like any information on treatments and what the PSA level numbers mean. We are in Northern Ontario and her dad is in New Brunswick, so I would like to try and help her out, her community down home is just a small town and she is concerned that her dad may not get the optimal treatments. I would greatly appreciate any information that anyone can give me, and I will log in again as I find things out. Thank you for your time.
    I wish you all the best for the future.
    Tiger.

    Hi Tiger, A PSA of over 4.0 usually indicates either early stage cancer or a prostate infection. A person has to have a TRUS and biopsy to find out the stage of cancer. that determines the possible treatment options. I suggest you find the best comphrensive Cancer Center (CCC) and get immediate work-up, If you have to travel a distance for treatment do so, cancer requires the best in urologists and oncologists, the local family doctor will not be satisfactory. This site and others can give you detained information on available treatment options. 2375dgg
  • tiger
    tiger Member Posts: 277
    #8
    2375dgg said:

    Hi Tiger, A PSA of over 4.0 usually indicates either early stage cancer or a prostate infection. A person has to have a TRUS and biopsy to find out the stage of cancer. that determines the possible treatment options. I suggest you find the best comphrensive Cancer Center (CCC) and get immediate work-up, If you have to travel a distance for treatment do so, cancer requires the best in urologists and oncologists, the local family doctor will not be satisfactory. This site and others can give you detained information on available treatment options. 2375dgg

    Tiger here, thank you both for taking the time to answer me. It will not be until the new year that my friends dad will have any real answers, so I will stay updated with her and let you know to see if you have any suggestions.
    I wish you all the best in a Very Healthy and Happy New Year.
  • meadc
    meadc Member Posts: 25
    #9
    My doctor told me of all the treatments. He gave me imformation on these. O the next appointment we discussed them. We asked him if it was he that had to make a decision, what would it be? He said surgery. Less chance of reacurrence. So that is what happened. You did't mention age. I am not saying this is what to do in your case. The surgery must have worked, because my last PSA was 0.06 after almost 2 years. Good luck on your decision.
  • meadc
    meadc Member Posts: 25
    #10
    garystarbuck said:

    Hey, I, too, was recently diagnosed with prostate cancer. 5.1 PSA w/ a Gleason of 7. The cancer is contained in the prostate according to CT & bone scan. I would like to start a discussion group ... i wonder how to do that.

    I think you just did. I just found this site, that is why this is to late for you. What Did you have done and how are you doing now?
  • gadan1
    gadan1 Member Posts: 19
    #11
    2375dgg said:

    Hi Tiger, A PSA of over 4.0 usually indicates either early stage cancer or a prostate infection. A person has to have a TRUS and biopsy to find out the stage of cancer. that determines the possible treatment options. I suggest you find the best comphrensive Cancer Center (CCC) and get immediate work-up, If you have to travel a distance for treatment do so, cancer requires the best in urologists and oncologists, the local family doctor will not be satisfactory. This site and others can give you detained information on available treatment options. 2375dgg

    best advice
    I've probably read at least 500 posts on here and did about 10 posts myself. your comments are short and to the point. you don't give "your" opinions on treatment, only to get the best surgeon he can. that is the best advice out there.
  • ron rob
    ron rob Member Posts: 1
    #12
    garystarbuck said:

    Hey, I, too, was recently diagnosed with prostate cancer. 5.1 PSA w/ a Gleason of 7. The cancer is contained in the prostate according to CT & bone scan. I would like to start a discussion group ... i wonder how to do that.

    ct scan & bone scan
    I just bought DR PETER SCARDINO'S BOOK PROSTATE BOOK IT SAYS THAT WHILE IT IS COMMON FOR ADVANCED PROSTATE CANCER TO SPREAD TO BONES , IT'S VERY UNCOMMON FOR CANCER TO REGISTER ON A BONE SCAN IF THE PSA.IS LESS THAN 20 AND EXTREMELY RARE WITH A PSA UNDER 8 HE GOES ON TO SAY THAT HAVING A BONE SCAN MAKES LITTLE SENSE UNLESS YOU HAVE A HIGH RISK OF SERIOUS DISEASE.OTHERWISE YOU RUN A SERIOUS RISK OF FALSE POSITIVES...CHECK THIS OUT,I'M NO EXPERT IT,S ONLY WHAT I HAVE BEEN READING IN THE BOOK..PAGE 191 192...
  • Michael S
    Michael S Member Posts: 2
    #13
    tiger said:

    Hi there, my name is Tiger and I am actually in the breast cancer chat myself, but I found out this evening that my friends dad has prostate cancer, his PSA is 7.4. At this point that is all the information that I have, apparently he is going for more tests next week, but i would like any information on treatments and what the PSA level numbers mean. We are in Northern Ontario and her dad is in New Brunswick, so I would like to try and help her out, her community down home is just a small town and she is concerned that her dad may not get the optimal treatments. I would greatly appreciate any information that anyone can give me, and I will log in again as I find things out. Thank you for your time.
    I wish you all the best for the future.
    Tiger.

    Treatment
    I found out that I had prostate cancer in late Sept. 09 and just had surgery Dec. 3rd. My PSA was 10.5 and a the biopsy showed a high concentration of cancer. You didn't mention whether this gentleman had a biopsy or not, that will help determine his treatment options. You said your friend was in Canada so I would highly recomend that he get in touch with Maple Leaf HIFU in Toronto, PH# 905 648 4347 toll free # 1 877 370 4438. I spoke to the receptionist there and she sent me a packet along with dvds that explains the process. I certainly would have gone there for treatment but I did not have the money and my insurance wouldn't cover a US UNapproved treatment. Everything that I have read about HIFU sounds great, especially the recovery, there really doesn't seem to be one. Its a 2 hour treatment, you spend the night in a hotel near the clinic, go home the next day and your back to work. I had some complications with surgery, I spent 4 nights in the hospital and have been off work for a month, quite a difference. I hope everything works out well.
  • HIFUgal
    HIFUgal Member Posts: 58
    #14
    Michael S said:

    Treatment
    I found out that I had prostate cancer in late Sept. 09 and just had surgery Dec. 3rd. My PSA was 10.5 and a the biopsy showed a high concentration of cancer. You didn't mention whether this gentleman had a biopsy or not, that will help determine his treatment options. You said your friend was in Canada so I would highly recomend that he get in touch with Maple Leaf HIFU in Toronto, PH# 905 648 4347 toll free # 1 877 370 4438. I spoke to the receptionist there and she sent me a packet along with dvds that explains the process. I certainly would have gone there for treatment but I did not have the money and my insurance wouldn't cover a US UNapproved treatment. Everything that I have read about HIFU sounds great, especially the recovery, there really doesn't seem to be one. Its a 2 hour treatment, you spend the night in a hotel near the clinic, go home the next day and your back to work. I had some complications with surgery, I spent 4 nights in the hospital and have been off work for a month, quite a difference. I hope everything works out well.

    This is the bummer Michael,
    This is the bummer Michael, that HIFU can't be rushed through the approval process, as it's been in use in europe for 18 years and the americans have prefected the treatment, by using supra pubic catheters, etc.

    My husband had HIFU, it was a breeze, no pain, no side effects, I recommend it whole heartedly, and wish it was available to all. We spent $25,000. and went to Mexico, had an American doctor do the treatment, yes 2 hours and out to dinner that night. It was the best money we ever spent!

    This is such an old thread the advice here is outdated, no one even knew about HIFU (high intensity focused ultrasound).

    I feel the only way HIFU will be approved is if enough of us know about it! so, I try to spread the word, thanks for your help!!!!
  • HIFUgal
    HIFUgal Member Posts: 58
    #15
    meadc said:

    My doctor told me of all the treatments. He gave me imformation on these. O the next appointment we discussed them. We asked him if it was he that had to make a decision, what would it be? He said surgery. Less chance of reacurrence. So that is what happened. You did't mention age. I am not saying this is what to do in your case. The surgery must have worked, because my last PSA was 0.06 after almost 2 years. Good luck on your decision.

    This is the bummer Michael,
    This is the bummer Michael, that HIFU can't be rushed through the approval process, as it's been in use in europe for 18 years and the americans have prefected the treatment, by using supra pubic catheters, etc.

    My husband had HIFU, it was a breeze, no pain, no side effects, I recommend it whole heartedly, and wish it was available to all. We spent $25,000. and went to Mexico, had an American doctor do the treatment, yes 2 hours and out to dinner that night. It was the best money we ever spent!

    This is such an old thread the advice here is outdated, no one even knew about HIFU (high intensity focused ultrasound).

    I feel the only way HIFU will be approved is if enough of us know about it! so, I try to spread the word, thanks for your help!!!!
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #16
    HIFUgal said:

    This is the bummer Michael,
    This is the bummer Michael, that HIFU can't be rushed through the approval process, as it's been in use in europe for 18 years and the americans have prefected the treatment, by using supra pubic catheters, etc.

    My husband had HIFU, it was a breeze, no pain, no side effects, I recommend it whole heartedly, and wish it was available to all. We spent $25,000. and went to Mexico, had an American doctor do the treatment, yes 2 hours and out to dinner that night. It was the best money we ever spent!

    This is such an old thread the advice here is outdated, no one even knew about HIFU (high intensity focused ultrasound).

    I feel the only way HIFU will be approved is if enough of us know about it! so, I try to spread the word, thanks for your help!!!!

    HIFU
    I have heard about it from a friend in Boca Raton who has a surgeon that goes to Cancun to do the procedure. My concern is that if it's that good why hasn't the US goverment FDA approved it yet there has to be some reason...they don't just let viable options go untested and approved.

    Randy in indy
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #17
    HIFUgal said:

    This is the bummer Michael,
    This is the bummer Michael, that HIFU can't be rushed through the approval process, as it's been in use in europe for 18 years and the americans have prefected the treatment, by using supra pubic catheters, etc.

    My husband had HIFU, it was a breeze, no pain, no side effects, I recommend it whole heartedly, and wish it was available to all. We spent $25,000. and went to Mexico, had an American doctor do the treatment, yes 2 hours and out to dinner that night. It was the best money we ever spent!

    This is such an old thread the advice here is outdated, no one even knew about HIFU (high intensity focused ultrasound).

    I feel the only way HIFU will be approved is if enough of us know about it! so, I try to spread the word, thanks for your help!!!!

    HIFU-2
    I talked for about 3 hours with the HIFU International people in N. Carolina prior to making my decision for the Da Vinci and found some parts that I was not excited about enough to shell out my own money ($25,000 not covered by insurance). The Da Vinci has gone perfectly even better than expected so far for me and I am so glad I choose this path. Still waiting on my post op path report but not too worried. MRI with coil showed it contained. Hope all is well with your husband and he is cancer free forever!

    Randy in indy
  • HIFUgal
    HIFUgal Member Posts: 58
    #18
    randy_in_indy said:

    HIFU-2
    I talked for about 3 hours with the HIFU International people in N. Carolina prior to making my decision for the Da Vinci and found some parts that I was not excited about enough to shell out my own money ($25,000 not covered by insurance). The Da Vinci has gone perfectly even better than expected so far for me and I am so glad I choose this path. Still waiting on my post op path report but not too worried. MRI with coil showed it contained. Hope all is well with your husband and he is cancer free forever!

    Randy in indy

    Hi Randy,
    Yes, they have to
    Hi Randy,

    Yes, they have to inform you of all of the possible side effects and outcomes from HIFU, but in reality I know many men who have had HIFU and the complaints are hard to find. Most are from guys who didn't follow the rules after treatment, they tried to pee right away, and got junk caught in the urethra, then had to have a TURP (a HIFU TURP is less agonizing than a regular TURP), and there are stories from guys who saw a inexperienced doctor, as with anything--only see the most experienced doctor, burning or ED can happen if he is new to the treatment. It takes practice. No incontinence though.

    HIFU is in clinical trials, the doctor in Denver who is conducting them is telling men that don't have aggressive cancer to wait a year until it is FDA approved. He thinks it's great.

    Pronton Beam, seeds they didn't have to go through trials....HIFU is in the 5th year of them, it costs the manufacturer of the machine millions to fund them.

    It's my opinion that HIFU is not being well received by surgeons & radiologists who know they will lose a lot of money when it is approved, and the FDA is run by surgeons and radiologists.

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