Advice for newly diagnosed

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  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #22
    john721 said:

    having a biopsy tommorrow

    will take valium and cipro in morning!!! Do you lay on table when they do this? The dr just had me bend over one for the initial exam!!!! How did you feel immediately afterward? were you able to sit comfortably? did you have to be catheterized? Were you able to eat normally that day? dr said results in two days, also doing bone scan!! any info will be helpful!!! Thanks John

    Probably a good idea to repost in a new thread
    and please tell, why are you doing a bone scan.

    Ira
  • bdhilton
    bdhilton Member Posts: 866 Member
    #23
    Lots of good advice given to
    Lots of good advice given to you and your husband but in the end it needs to be your husband’s decision on the treatment with your support (from my perspective) and as you see there is not one best treatment to keep this beast at bay. I would recommend that you and your husband check out the Prostate Cancer Foundation (the largest single donor to research on this beast) web site for all sort of great advise and relevant news..

    The best to you and your husband in this journey…
  • ob66
    ob66 Member Posts: 227 Member
    #24
    scout5000 said:

    interesting
    I had read a little about the mush factor but it wasn't mentioned much in the literature we've read. It seems like an important part to consider when deciding on which route to go. Thank you.

    Best advice I can give you
    Santa Cruz County is one of the most beautiful places in the world to live. I lived there for 7 years after 32 years in Los Gatos, CA. One thing I will say is that it is not a mecca for medicine----considered "rural" in it's payment schedules to MDs. Does not mean you cannot find a good MD there, but in my 7 years there I had 4 internists (not because I was such a bad patient, but because they could not earn a good enough living in the SC Medical Group). I would extend my second opinions to the silicon valley, but especially where you have gone to UCSF, one of the best medical institutions in the world. Stanford held higher esteem in the past but has fallen a bit. But then do understand, the quality of your care is no better, or no worse than your personal doctor (and that may even be in SC County, despite what I have said). As I got older I moved to Orange Co. for a warmer climate and better medical care (from SC County). Not meant to offend, but to inform.
  • scout5000
    scout5000 Member Posts: 94 Member
    #25
    bdhilton said:

    Lots of good advice given to
    Lots of good advice given to you and your husband but in the end it needs to be your husband’s decision on the treatment with your support (from my perspective) and as you see there is not one best treatment to keep this beast at bay. I would recommend that you and your husband check out the Prostate Cancer Foundation (the largest single donor to research on this beast) web site for all sort of great advise and relevant news..

    The best to you and your husband in this journey…

    agreed
    I agree that the decision for treatment must be my husband's, with me there to support that decision. My goal is to make this process easier for him by gathering information and letting him process it. Having just been through breast cancer I know that you need to become a specialist in your disease to really make wise decisions. Thanks for your help. Scout
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #26
    scout5000 said:

    agreed
    I agree that the decision for treatment must be my husband's, with me there to support that decision. My goal is to make this process easier for him by gathering information and letting him process it. Having just been through breast cancer I know that you need to become a specialist in your disease to really make wise decisions. Thanks for your help. Scout

    Surgery after radiation
    I don't want to start an argument about what radiation does prior to surgical intervention. However, my comments were based on what my surgeon told me at Johns Hopkins Hospital when I was deciding on a treatment. I know you'll do the research on this and I'm glad I at least created a question in your mind. I did find this on a cancer-related web site:


    Richard Whittington, MD, Associate Professor of Radiation Oncology at the University of Pennsylvania School of Medicine:

    There are few surgeons who will do prostatectomy after radiation therapy. The major problem is the fibrosis (scarring) caused by either surgery or radiation. It really does not matter what the first treatment is, the second treatment is typically always more difficult. After any surgery, it is much more difficult to do a second surgery in the same area because of the fibrosis from the first surgery. It is also more difficult to do surgery after radiation because of fibrosis.

    After radiation, a surgeon needs to put his hand through the fibrosis. It is difficult for him/her to distinguish the bladder from the prostate from the rectum. When a surgeon goes in to take the prostate out, he/she sees a large ball of scar tissue that the bladder, rectum, and prostate are in there somewhere. The tissue planes that allow you to separate one organ from another are obliterated. If you are aggressive in removing the prostate, you risk damaging the bladder or the rectum.
  • johnnyt617
    johnnyt617 Member Posts: 6
    #27
    64 post radical prostatecomy
    Hi ... I totally agree that this is where to get the "real scoop"... I just joined this website today and am already glad I did. I got diagnosed on April 1st and my numbers looked about the same as your husband's ... My wife was also very supportive like you and she attended my meetings witht he docs as we found out about the options... mine may have been a little more aggressive, but nevertheless...I chose (notice I said "I" and not "We" ... because my wife definitely had her thoughts and opinions - but knew that in the end, the decision had to be mine.)... I chose to have the radical prostatectomy... which I did on July 9th and have been told I'm cancer-free. I'm happy about that. The catheter was my biggest concern pre-surgery and it turned out to be a no-brainer post surgery... at first I didn't feel like I knew how to care for it - but my wife strapped on the rubber gloves and cleaned it the first time ... I then "manned up" and started taking care of it myself. I'm currently wearing pads in tighty-whitey's for the incontinence, which for me hasn't been bad. I do the "Kegel" exercises as much as I can and think of to keep the incontinence to a minimum too. I'm just getting ready to address the sexual dysfunction...but...that's a whole different story for me and my wife (we've been somewhat separated for the past 4 years...no regular sex anyway)... but... I want to get back to some sexual activity and I know she deserves that... don't mean to ramble...but..this is my first time on here so I'm finding that my fingers want to type a lot for now.. I wish you and your husband the very best of luck and God Bless you... Johnny T
  • johnnyt617
    johnnyt617 Member Posts: 6
    #28
    john721 said:

    having a biopsy tommorrow

    will take valium and cipro in morning!!! Do you lay on table when they do this? The dr just had me bend over one for the initial exam!!!! How did you feel immediately afterward? were you able to sit comfortably? did you have to be catheterized? Were you able to eat normally that day? dr said results in two days, also doing bone scan!! any info will be helpful!!! Thanks John

    Hang in there buddy
    Hey John (I'm John too)... the biopsy is not the most comfortable or enjoyable experience that you'll every have :-) but... certainly it's important for you to find out whether or not you have the cancer - so - I found myself realizing that and it helped me get through it... it will seem forever while you're lying on the table and the doc will do his best to get you through it...but... you will be glad you did it in the end (no pun intended)...
    I seem to remember eating regularly after the biopsy.. had to do the enema first thing in the a.m. and no food or drink for 12 hours before...
    My doc had me do a cat scan and bone scan too after the biopsy results were positive for the prostate cancer... that was to see if it had spread. (It hadn't).... it's worth knowing that to help make your choices... Good luck & God Bless (p.s. I'm cancer free after having the prostatectomy on July 9th).... Johnny T
  • scout5000
    scout5000 Member Posts: 94 Member
    #29
    Thanks
    Thanks everyone for all of the information, insight, and personal experiences. We are set for a second opinion at UCSF. We wish all of you health and happiness. Scout
  • mrspjd
    mrspjd Member Posts: 694 Member
    #30
    scout5000 said:

    Thanks
    Thanks everyone for all of the information, insight, and personal experiences. We are set for a second opinion at UCSF. We wish all of you health and happiness. Scout

    UCSF
    UCSF, University of California @ San Francisco, is a great place to go for a 2nd (or 1st) opinion--some very well respected, published, experienced, and skilled docs there. It's one of the institutions we (pjd) used for a consult and further testing. Their Rad Oncology Dept has the Tesla 3 MRI (only a few institutions nationwide have this newer '3' model). It gives a higher definition read of the images. If an endo-rectal MRI/MSRI is appropriate for your husbands PCa staging, you might want to ask if their clinical study using the Tesla 3 MRI with Spec is still recruiting & enrolling participants. Best to both of you.
    mrs pjd

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