Too much...too much

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  • Kongo
    Kongo Member Posts: 1,166 Member
    #22
    blind referee said:

    Johns Hopkins
    Don't know if anyone is still reading this thread but...

    I finally got in touch with Johns Hopkins and I was transferred to four different lines before I got to the right one. While talking to them, they absolutely would not make an appointment until/unless I told them my Gleason and PSA. Since I was unsure (okay, my bad, I should have paid more attention when I met with my urologist), I had to hang up and call my urologist. Once I got them, I called JH back and gave them the info. As we discussed an appointment, I asked about insurance. I was told JH had three urologists, and none took Blue Cross/Blue Shield. Hello!?!? Johns Hopkins doctors don't take Blue Cross/Blue Shield? Okay, I can pay out of pocket for an appointment, but if I used them for surgery, I would have to pay the upfront costs then bill my insurance.

    The long and short of it is that, while I do believe Johns Hopkins is probably the best, they certainly did not make me feel very comfortable. I think I'll stick with my personal urologist, a great guy who actually recommended that I get a second opinion.

    Confused
    Blind,

    I can understand being confused as you start this process but as I recall, you were diagnosed a month ago and you still don't know your Gleason and PSA but are considering surgery? Frankly, none of the potential options a second opinion will give you will make any sense at all until you know what those numbers are and understand the implications with respect to treatment options. As frustrating as it may be, you can't just call up a hospital and say, 'hey, I've got prostate cancer I need an appointment to talk about surgery.' Depending on your Gleason and PSA and staging, surgery may not be a good option for you at all. On the other hand, there may be other options that offer equally excellent long term outcomes that could be more conducive to maintaining your quality of life.

    You really have to to your homework on this one. This discussion forum is a great place to start gathering information but there's other research you ought (need) to be doing as you prepare for appointments. You need to understand open versus robotic surgery, brachytherapy, HDR brachytherapy, XBRT, IMRT, hormone therapy, active surveillance, cyberknife, proton therapy, HIFU, and on and on.

    As unfair as it might seem to have to do all this, if you just go with whatever your urologist tells you to do, you can wake up one morning in two or three months (or yearas) and say: "What was I thinking?" It's too late then. We don't get any do overs in choosing our first treatment course.

    Beating prostate cancer takes a partnership between you and your medical team. They will do their part but you have to do yours too and be an informed patient who has enough information to ask intelligent questions. Several posters on this threat provided a superb list of reference materials. I hope you can read some of them before your appointments.

    Good luck to you
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #23
    blind referee said:

    Johns Hopkins
    Don't know if anyone is still reading this thread but...

    I finally got in touch with Johns Hopkins and I was transferred to four different lines before I got to the right one. While talking to them, they absolutely would not make an appointment until/unless I told them my Gleason and PSA. Since I was unsure (okay, my bad, I should have paid more attention when I met with my urologist), I had to hang up and call my urologist. Once I got them, I called JH back and gave them the info. As we discussed an appointment, I asked about insurance. I was told JH had three urologists, and none took Blue Cross/Blue Shield. Hello!?!? Johns Hopkins doctors don't take Blue Cross/Blue Shield? Okay, I can pay out of pocket for an appointment, but if I used them for surgery, I would have to pay the upfront costs then bill my insurance.

    The long and short of it is that, while I do believe Johns Hopkins is probably the best, they certainly did not make me feel very comfortable. I think I'll stick with my personal urologist, a great guy who actually recommended that I get a second opinion.

    Kongo is giving you excellent advice.. Additionally, get a copy of all tests that you have taken so you can bring them to any doctor that you might see. You also need this information for your research. A doctor has to release this information to you..........

    I'm sorry to tell you that this disease is life threatening....you need to get moving.

    It's ok to be a blind referee.......but do not be blind about this.

    we are here to help you

    Ira
  • Trew
    Trew Member Posts: 932 Member
    #24
    All I can say this might be
    All I can say this might be your only chance to get some of these tests done- so go for it. It'll give you something to talk about at family get to gethers.

    Really, don't fool with PC. If you see it in end stage, the pain, suffering, well, just get the scans. You are playing defense now- not the lottery.
  • janekirstine
    janekirstine Member Posts: 24 Member
    #25
    Great Thread
    I just quickly scanned this thread and there are so many great suggestions for all PC patients. I cannot stress the importance of keeping a NOTEBOOK - a three ringed binder - with all of your test results, doctor names, articles, etc. etc. Start today if you have not already. Request copies of every PSA test. Keep it organized. Hopefully you will not need it later, but you will be glad you have it. Take it to your appointments. It was one of the best things a neighbor told me to do 2 years ago, before she even knew "nuclearduck" had PC. A good idea for all people to do to keep track of their health.

    I am at the screaming stage right now where important treatment decisions will be made soon. So much information out there. I was going to start a thread just for screaming and relieving stress but just typing this helps! Laughter works too! I can only imagine how the men feel.

    Hugs for everyone!
  • Randall72
    Randall72 Member Posts: 34
    #26
    blind referee said:

    Johns Hopkins
    Don't know if anyone is still reading this thread but...

    I finally got in touch with Johns Hopkins and I was transferred to four different lines before I got to the right one. While talking to them, they absolutely would not make an appointment until/unless I told them my Gleason and PSA. Since I was unsure (okay, my bad, I should have paid more attention when I met with my urologist), I had to hang up and call my urologist. Once I got them, I called JH back and gave them the info. As we discussed an appointment, I asked about insurance. I was told JH had three urologists, and none took Blue Cross/Blue Shield. Hello!?!? Johns Hopkins doctors don't take Blue Cross/Blue Shield? Okay, I can pay out of pocket for an appointment, but if I used them for surgery, I would have to pay the upfront costs then bill my insurance.

    The long and short of it is that, while I do believe Johns Hopkins is probably the best, they certainly did not make me feel very comfortable. I think I'll stick with my personal urologist, a great guy who actually recommended that I get a second opinion.

    BC/BS
    Blind......Look into Abington Memeorial Hospital, Abington,Pa. ( about 3 hrs away just outside Philly) I had my robotic surgery there,everyone was great.Even from the beginning with insurance. My hospital bill was $66K,I have to pay only $2,700. And paid a $250 admission copay. I'll give you my surgeons#, and/or the prostate cancer centers # if you like. Good luck! Im a 3month survivor,post op PSA 0.05.

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