Hello Bill,
Welcome to the forum. Sorry to hear you are struggling but glad you found us.
I'm not sure you were properly welcomed after your first post and the Welcome Wagon representative seems a bit late this time, so we'll see if we can't get you a bit more attention this time.
I am a fellow North Carolinian, and a fellow Triangle area resident. It doesn't seem like we overlap much on doctors or medical institutions but it may be handy to know during lulls in the conversation when we fall back on discussing the weather (which has been cool and wet although the last few days have been nice.) I am also a fellow member of the Gleason 9 club here to which you have not yet been properly inducted.
Your previous post contained a lot of information about
your treatments. Rather than linking to that previous post, I will quote it below. I also notice that you are struggling with your signature. The signature feature of our software is cantankerous. A new signature seldom appears on the first message where it is expected but will reliably appear on subsequent messages complaining that it is missing. If the problem persists let me know and I will try to help you figure it out.
In your previous post, you said...
I now know more about prostate cancer treatment than I ever wanted to know. After a few mistakes, and a few winners, I have a little experience to share.
The numbers of the original poster are similar to mine, and reflect a likelihood of advanced prostate cancer. That means, among other things, that it is going to be around for awhile and signfiicant treatment will be necessary over the remainder of the poster's life (which I hope is a long time). Accordingly, it is very important to find a good "medical oncologist" specializing in prostate cancer. Urologists know how to cut the cancer out; radiation oncologists know how to radiate the tumor. A "medical oncologist" knows how to manage the cancer and its treatment at all stages; he will refer an appropriate urologist and RO.
My oncologist happens to be at MD Anderson (I highly recommend); I have also consulted with oncologists at Duke (very good); and at UNC-CH (same). My friends I have met at MDA also claim that the Mayo Clinic and the Cleveland Clinic have excellent medical oncologists. This is not intended to be an exhaustive list, but it will give some places to start.
I also note that I live in NC, so MDA, Duke and UNC all coordinate treatment to cut down on my travel time. I spent about $6K in travel to Houston last year (12 trips), to give you an idea of the costs; I have been once this year, and will go twice more, I believe. Blue Cross Blue Shield has covered every treatment so far -- it has to be close to $1,000,000.
The reason that a "medical oncologist" is important is that he knows the various new drugs on the market, what they are likely to do to the cancer and how the various treatments interact; I am not sure that urologists and RO's are at the same level. At my initial diagnosis, the cancer was out of the capsule and inoperable. After 8 months of Lupron, and three months of Zytiga, the cancer had shrunk substantially and my oncologist referred me to a urologist who removed the tumor and the prostate. Sixty days later, my first bone metastases appeared, and the oncologist started Xgeva and docetaxel. He referred me to a radiation oncologist to treat further the metastases after the chemo.
My initial PSA was 60; I am an all-core Gleason 9 with metastasis and lymph node involvement; I was given two years to live two years ago by a local doc; I am now staring down the barrel of a substantial remission. I have no cancer on scans (other than two tiny metastases that are probably gone now) and my PSA was .3 and headed down before the radiation. Nobody really believes it, and I am just starting to get my head around the fact that I might live. The only doctors I deal with frequently and directly are the oncologists; I couldn't pick the radiologist or the urologist out of a lineup.
I have had a lot of the treatments on the list:
Firmagon
Lupron
Casodex
Zytiga and Prednisone
Xgeva
Neulasta
Docetaxel
Prostatectomy
Image guideded radiation therapy
And I am in line for preventive Xiofigo -- very uncommon.
I am still upright. If anyone has any questions about any of these, I am happy to answer. They all make me very tired; very, very tired. After that the side effects are manageable, at least to me.
And finally, I have one more comment. When I had my prostatectomy, I was really concerned about sexual function. That quickly faded into the background, and I became very concerned about incontinence. I could not imagine walking around leaking wee-wee for a long period. Men I talked to who had incontinence problems agreed that the incontinence was multiples worse than the impotence.
My experience at MDA is that I have had zero problems with urinary issues related to my prostatectomy. My catheter was removed in five days, and I have not done anything. No diapers, no exercises, nothing. And the prostatic resection was substantial. Other guys in my "class" have had similar experiences. I say that to emphasize the importance of the experience in choosing one to do a prostatectomy (as I said, I didn't choose, my onc did). The surgeon who operated on me had done over 2000 laporoscopic procedures; he did three the day he did mine. Finding a medical center urologist with that kind of experience is absolutely critical.
This is a long post, and it is mostly about my good decisions. The worst decision I made was trying to go with the "friends and family" approach. Advanced prostate cancer is a strange animal and not many docs are experts in it. Your well-being and your life are at risk when you pick a friend of a friend who has less than adequate experience with it.
I am certainly happy to discuss any of this with anyone who has been newly diagnosed or otherwise. Info is in my profile.
I have thought about this for awhile, and thank you for bearing with me.