Anyone with experience with Kaiser West LA or Dr Maynes for Robotic Procedure

tjsskier
tjsskier Member Posts: 11
edited March 2014 in Prostate Cancer #1
Hi everyone,
After PSA tests that have been slowly going up over the last two years (I am very happy with Kaiser Health Care) my Urologist suggested I have a biopsy even though my PSA 3.8 was only slightly high for my age (51) and my digital exam was inconclusive. 4 out of 12 samples had cancer with a gleason score of 6. I am healthy, run marathons, ride dirt bikes, snow ski and wakeboard and have rarely been sick my entire life. Although this is not what I wanted to hear.... I have gone after this with as much "knowledge seeking as possible".

I have spent a lot of time online and have a customer Dr. Hadley who is head of LLU Medical School and was head of Urology at LLU .... who has "backed up" my decision to have the Robotic Procedure at Kaiser over "watchful waiting" or any other treatments I have explored. My Dad had an open procedure at age 65 and my grandfather had PC at 80, but died of a stroke before it became an issue. Dr. Hadley said I have a 98% chance of never having cancer again by removing it now. It might not be an issue until later like for my Dad or Grandfather... but the cancer never tells you when it decides to leave your prostrate .... so I decided to remove the chance of dealing with cancer down the road.

I am engaged and getting married in Feb... so my timing isn't real good, but my fiance' is very supportive (she is a dietitian) and would not let me do life style changes with watchful waiting and said.... "get it out". So I am as comfortable as I can be about something like this.... but I am looking for some more advise from any an all.

My surgeon is highly recommended (and I like him personally) by all I have talked to and I understand that is the most important issue.... (how many he has done... over 100 in the last two years) but I have not spoken with anyone who has direct contact/knowledge with Kaiser West LA or Dr. Maynes. Has anyone on here had direct or first hand contact with Kaiser West LA or Dr Maynes?

Thanks in advance...
Tim

Comments

  • NM
    NM Member Posts: 214
    #2
    Sept 3rd
    Cant help you on your choice of hospital or doctors but I had Davinci on sept 3rd and am glad the cancer is out.

    I was lucky and had no positive margins and my first psa after waiting was .05 My doctor said anything under .2 is fine.

    With 4 out of 12 samples testing positive and a gleason score of 6 you do have some time before making any decision but watchful waiting with your family history doesnt make sense.

    My dad dies of prostate cancer at 73 and it seems each generation seems to get it earlier.

    Quality of life issues were a big deal to me and I have no incontinence and while ed is an issue I feel things improving there too.

    Like you I was healthy,showed absolutely no symptoms and only a yearly blood test showed a problem. This was my first major health issue and my doctor said my condition made for an easier recovery,which it was and more chance of a posititve outcome.

    Hoped this helped some good luck on any decision you make and congratulations on your upcoming wedding...By the way a second opinion is a good idea my slides went to John Hopkins.

    Nick.....age 52...Psa5...3+4=7gleason presurgery
  • lewvino
    lewvino Member Posts: 1,010 Member
    #3
    Tim, Good luck on your
    Tim, Good luck on your upcoming surgery. Did you look into the Proton at Loma Linda University? My dad was treated with proton back in 1996 and doing great. I just had my robotic surgery in Aug for my Prostate cancer. I chose the robotic since I had a gleason 7 and wanted the cancer out. Plus if needed I can have follow radiation if the need arises since I have a positive margin post surgery.
    I'm 55, love to snow and water ski and boating in general.

    Also best wishes on your upcoming honeymoon! I read of another man that spent his honeymoon at Loma Linda on the Proton Therapy.

    Keep a positive attitude! It helps!

    Larry
  • tjsskier
    tjsskier Member Posts: 11
    #4
    lewvino said:

    Tim, Good luck on your
    Tim, Good luck on your upcoming surgery. Did you look into the Proton at Loma Linda University? My dad was treated with proton back in 1996 and doing great. I just had my robotic surgery in Aug for my Prostate cancer. I chose the robotic since I had a gleason 7 and wanted the cancer out. Plus if needed I can have follow radiation if the need arises since I have a positive margin post surgery.
    I'm 55, love to snow and water ski and boating in general.

    Also best wishes on your upcoming honeymoon! I read of another man that spent his honeymoon at Loma Linda on the Proton Therapy.

    Keep a positive attitude! It helps!

    Larry

    Thanks for the encouragements
    Hey Larry and Nick,
    Thanks for the replies and sharing your experience and advise. I have heard about good results with proton.... but with my age and progression... if the cancer ever came back, I would have less options in the future if I choose proton radiation now. Dr Hadley who heads the Med School there (his dad was head of urology at LLUMC and so was he) said I have the opportunity to "get it out" and a 98% chance that I will never have cancer again doing the robotic route.

    Has anyone had experience with a "Catheter-free Recovery" where they put a tube in and you don't need a catheter? I was reading about it this a.m. and emailed my Dr. to see if that was an option for me.

    I just discovered this site this morning and find good information and encouragement. I'll keep up the contact as things progress. Thanks again.
    Tim
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #5
    Wasn't able to post, but another shorter try
    Kaiser sponsors groups for support, worth attending so you can meet others who have had experence with you doc..there is a steep learning curve...100 is not that great....I live just south of long beach...lots of support groups in so ca....Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #6
    hopeful and optimistic said:

    Wasn't able to post, but another shorter try
    Kaiser sponsors groups for support, worth attending so you can meet others who have had experence with you doc..there is a steep learning curve...100 is not that great....I live just south of long beach...lots of support groups in so ca....Ira

    more
    questons: what was the involvement of the four positive cores? Did you get a second opinion of the pathology outside kaiser, so that you are not under or overtreated, by an expert in the field since it is a complicated procedure...one expert is Dr Epstein, Johns hopkins..
  • lewvino
    lewvino Member Posts: 1,010 Member
    #7
    tjsskier said:

    Thanks for the encouragements
    Hey Larry and Nick,
    Thanks for the replies and sharing your experience and advise. I have heard about good results with proton.... but with my age and progression... if the cancer ever came back, I would have less options in the future if I choose proton radiation now. Dr Hadley who heads the Med School there (his dad was head of urology at LLUMC and so was he) said I have the opportunity to "get it out" and a 98% chance that I will never have cancer again doing the robotic route.

    Has anyone had experience with a "Catheter-free Recovery" where they put a tube in and you don't need a catheter? I was reading about it this a.m. and emailed my Dr. to see if that was an option for me.

    I just discovered this site this morning and find good information and encouragement. I'll keep up the contact as things progress. Thanks again.
    Tim

    Tim,
    I was glad I ended up
    Tim,
    I was glad I ended up choosing the Davinci and have been doing excellent at 2 months post surgery with Urine control and erections.

    Perhaps a man on here named Sonny will see the post and mention his experience. He had what is called a supra pubic cath I believe. I think all Doc's use a normal cath to line up the bladder and urinary tract after cutting out the prostate. Then some leave the normal cath in or use the cath out the side.

    Larry
  • tjsskier
    tjsskier Member Posts: 11
    #8
    hopeful and optimistic said:

    more
    questons: what was the involvement of the four positive cores? Did you get a second opinion of the pathology outside kaiser, so that you are not under or overtreated, by an expert in the field since it is a complicated procedure...one expert is Dr Epstein, Johns hopkins..

    I'm back home
    Yes hopeful... I talked with 4 different Urologists before I decided on my course of action.

    I had my Robotic procedure on Friday afternoon and came home on Saturday afternoon. I refused all narcotics and I am amazed how little pain I have. It hurts... but I can stand it without the heavy duty stuff.

    Dr Maynes said my healthy condition helped and the procedure was quick and both nerves were easily spared. I will get my path report when I go in for my cath removal.

    I don't like the cath, but it is not as bad as I thought it would be. My urine is clear with no blood, but I am getting a little blood leaking at the end of my penis where the cath goes in. I'm putting neosporin on it and drinking lots of water. I am finally getting some gas and anticipate a bowel movement soon. (Before surgery I would go every morning at 5:00 am... so it looks like I'm back on schedule with that again.

    I have read alot of posts on here that give me encouragement. I know I am at the beginning of a long road and I look forward to learning more from those of you willing to share your advise and encouragement with me.

    Thanks,
    Tim
  • jhagerup
    jhagerup Member Posts: 68
    #9
    tjsskier said:

    I'm back home
    Yes hopeful... I talked with 4 different Urologists before I decided on my course of action.

    I had my Robotic procedure on Friday afternoon and came home on Saturday afternoon. I refused all narcotics and I am amazed how little pain I have. It hurts... but I can stand it without the heavy duty stuff.

    Dr Maynes said my healthy condition helped and the procedure was quick and both nerves were easily spared. I will get my path report when I go in for my cath removal.

    I don't like the cath, but it is not as bad as I thought it would be. My urine is clear with no blood, but I am getting a little blood leaking at the end of my penis where the cath goes in. I'm putting neosporin on it and drinking lots of water. I am finally getting some gas and anticipate a bowel movement soon. (Before surgery I would go every morning at 5:00 am... so it looks like I'm back on schedule with that again.

    I have read alot of posts on here that give me encouragement. I know I am at the beginning of a long road and I look forward to learning more from those of you willing to share your advise and encouragement with me.

    Thanks,
    Tim

    Tim - I had my surgery on
    Tim - I had my surgery on Oct 19 so it's been 3 weeks since. For me, the worst part of it all was the catheter (far and away). I had swelling and general tenderness all the time. Oddly, I got relief from washing or showering, but I did keep things lubricated with antibiotic too. My catheter was removed 10 days after surgery and at the same time I received the pathology report. What a great day that was - huge relief getting the thing out, pathology was good (10% in size and fully contained), and I was dry the day they took it out and have been since (OK a few drips at times, but a "light days" womens pad takes care of that). I go back to work on Monday (office job). I'm getting my first post surgery PSA in a couple weeks. All in all, the first 10 days were "inconvenient" and a bit frustrating, but after that it was clear sailing for me. I attibute my good fortune to prayers from friends, doing Kegals for a couple months leading up to surgery, and running a couple miles leading up to surgery, and, of course, a good surgeon. Good luck and God bless. Jim
  • clrwtr
    clrwtr Member Posts: 9
    #10
    jhagerup said:

    Tim - I had my surgery on
    Tim - I had my surgery on Oct 19 so it's been 3 weeks since. For me, the worst part of it all was the catheter (far and away). I had swelling and general tenderness all the time. Oddly, I got relief from washing or showering, but I did keep things lubricated with antibiotic too. My catheter was removed 10 days after surgery and at the same time I received the pathology report. What a great day that was - huge relief getting the thing out, pathology was good (10% in size and fully contained), and I was dry the day they took it out and have been since (OK a few drips at times, but a "light days" womens pad takes care of that). I go back to work on Monday (office job). I'm getting my first post surgery PSA in a couple weeks. All in all, the first 10 days were "inconvenient" and a bit frustrating, but after that it was clear sailing for me. I attibute my good fortune to prayers from friends, doing Kegals for a couple months leading up to surgery, and running a couple miles leading up to surgery, and, of course, a good surgeon. Good luck and God bless. Jim

    Surgery Friday also
    Tim,
    I had my robotic surgery at 9am on Friday and came home yesterday as well. Had the surgery by Dr Patel in Orlando and live in Clearwater about an hour and a half away. I am 61 and in good health and pretty good shape. I ride a bike now rather than run since I had both knees replaced a few years ago. I agree that the pain is a lot less than I expected, I seem to be fine with tylenol, drinking lots of water and walking a lot. I was kind of surprised to hear he wanted me back Tuesday to do the cystogram and take out the catheter. I also agree about the catheter, I have had them in the past and they were very uncomfortable but this time it is not that bad. I am very anxious to get the pathology back as I am sure you are also. Good luck and lets hope things just continue to get better and better.

    Len
    61 yrs old
    gleason 4 + 3 = 7
    Surgery 11/6/09
    Psa 2 to 9.1 in 7 months
  • Flo
    Flo Member Posts: 1
    #11
    tjsskier said:

    I'm back home
    Yes hopeful... I talked with 4 different Urologists before I decided on my course of action.

    I had my Robotic procedure on Friday afternoon and came home on Saturday afternoon. I refused all narcotics and I am amazed how little pain I have. It hurts... but I can stand it without the heavy duty stuff.

    Dr Maynes said my healthy condition helped and the procedure was quick and both nerves were easily spared. I will get my path report when I go in for my cath removal.

    I don't like the cath, but it is not as bad as I thought it would be. My urine is clear with no blood, but I am getting a little blood leaking at the end of my penis where the cath goes in. I'm putting neosporin on it and drinking lots of water. I am finally getting some gas and anticipate a bowel movement soon. (Before surgery I would go every morning at 5:00 am... so it looks like I'm back on schedule with that again.

    I have read alot of posts on here that give me encouragement. I know I am at the beginning of a long road and I look forward to learning more from those of you willing to share your advise and encouragement with me.

    Thanks,
    Tim

    Dr Maynes
    Tim - just read your "I'm back home" comment. Awesome news!! I was recently (Nov 09) diagnosed as well. Very early stage of prostate cancer but cancer nonetheless. Dr. Maynes was assigned as my urologist and he is the one that performed the initial examine, followed by the biopsy. I have been attempting to do some background research on Dr. Maynes as part of normal due diligence. Thus far I have felt extrememly comfortable with Dr. Maynes. I stumbled upon your comments and found them to be encouraging.

    I am planning on having the robotic procedure at the end of April. I believe the procedure is performed out of Kaiser, West Los Angeles. Is that where you had your procedure?

    Wishing you continued good health and a full recovery.

    Florin
  • CaptainJ
    CaptainJ Member Posts: 1
    #12
    Flo said:

    Dr Maynes
    Tim - just read your "I'm back home" comment. Awesome news!! I was recently (Nov 09) diagnosed as well. Very early stage of prostate cancer but cancer nonetheless. Dr. Maynes was assigned as my urologist and he is the one that performed the initial examine, followed by the biopsy. I have been attempting to do some background research on Dr. Maynes as part of normal due diligence. Thus far I have felt extrememly comfortable with Dr. Maynes. I stumbled upon your comments and found them to be encouraging.

    I am planning on having the robotic procedure at the end of April. I believe the procedure is performed out of Kaiser, West Los Angeles. Is that where you had your procedure?

    Wishing you continued good health and a full recovery.

    Florin

    Kaiser, West Los Angeles
    Florin,

    I am going to have robotic prostate surgery at the end of May or beginning of June at Kaiser in West Los Angeles.

    Have you had your surgery as yet? If you had or are going to have the surgery at KPWLA, would you share some of your thoughts and experience to this date.

    All the best to you,

    Joel
  • RRMCJIM
    RRMCJIM Member Posts: 149
    #13
    Flo said:

    Dr Maynes
    Tim - just read your "I'm back home" comment. Awesome news!! I was recently (Nov 09) diagnosed as well. Very early stage of prostate cancer but cancer nonetheless. Dr. Maynes was assigned as my urologist and he is the one that performed the initial examine, followed by the biopsy. I have been attempting to do some background research on Dr. Maynes as part of normal due diligence. Thus far I have felt extrememly comfortable with Dr. Maynes. I stumbled upon your comments and found them to be encouraging.

    I am planning on having the robotic procedure at the end of April. I believe the procedure is performed out of Kaiser, West Los Angeles. Is that where you had your procedure?

    Wishing you continued good health and a full recovery.

    Florin

    Florin
    I also had my surgery done by Dr Maynes, in May of 2009....have my one year check up right around the corner...My surgery was done at West L A Kaiser..nice facility.. cath out in 9 days...that was the best part...I see him in Riverside for my check ups..
    Jim

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