Newbie's Wife - just diagnosed 3 days ago

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Comments

  • mrshisname
    mrshisname Member Posts: 186

    Mrshisname - Oncologist
    GO SEE HIM - Do NOT cancel - educate yourself and husband. It's an Option. My oncologist for second opinion here in Indy was DR. Dougan - He told me "I'd do surgery and come back to me if there are any positive margins or further cancer to kill." He was trained at one of the primer radiation hospitals in US General Mass. Your urologist is doing you right by recommending to get a second, third opinion. Noting your biopsy results it would suggest you do have time...however know this also. My biopsy only showed cancer in the right lobe 3 of 8 samples taken 4 from both sides. POST OP - I had cancer in both sides and tumors in both sides less than 1mm from breaking through the capsle and becoming a positive margin...scary...I was positively detected on OCT 27th and had surgery on 12/29. My first biopsy results would have suggested I had plenty of time...PSA's 7.25 and 6.17....soooooo... not everyone is the same nor is their cancer nor is it exactly what the biopsy results would indicate...again though looking back at my stats...Dr. Koch's lab used for second opinion was closer than the original lab to the actual post op path report.... more severe grading and perhaps a tad less volume. Here is what I do reco for your husband. Get and MRI with Coil - spectroscopy if you can..just another test and I like recomending that to everyone because whY? 1. can tell if the capsle has been broken through which would most likely alter your choices of method and 2. Armed with yet more information to make a better treatment decision. YOu may have heard this in one of my other posts...that the orginal surgeon signed up with in the same group I ended with...said no need for MRI with coil...would not change the surgery plan...he point blank told me I will swing wide and take the right side nerve...hey the nodgle was on that side...but hey wait a minute after the surgery...post op path...it was on both sides....If he knew that he would have taken both sides....now I have no nerves ...no erections...I"M 52..and far from dead especially in that area..hey one of the best reasons to fight to stay alive as far as I am concerned...that, a good beer and good food...I am happy for life. Ok as I slap myself to stay back on point here... so...the surgeon I chose...Says "Randy you get an MRI coil so I can see if its escaped...then when I am in there doing the surgery if the nerve peels off easily..nothing holding on to it...I'm saving it...both sides....Not only did he save both nerves 100%...he found what he said he has only seen in 3 or 4 other men...two extra pudental arteries running on the topside of the penis feeding blood....he smiled you and Annette will thank me for finding and saving them....Yeap...in my book...He's my type of ROCK STAR SURGEON...I love the guy! And wha-la...on day 56 post da vinci..usable erection...no leak on orgasm...it just doesn't get any better than that!!!!!!!!!!!!!!!!

    Crazy... Randy in indy - yeah...that's "good crazy" not "bad crazy"

    We need smiles & some laughter here...I try to provide that from time to time...even though I am a rambling horrible writer.

    Randy (again)
    We are specifically going back to original urologist on Friday to ask for the MRI both based on what I read here, and what the offices of Bell and then Koch asked me, has he had an MRI and bone scan. At the end of our conversation on Friday with original uro, after we got the diagnosis, I specifically asked him if hubby needed further testing, and he said 'no'. So Friday when we go back to talk to him again, he WILL be ordering those tests.
    Thanks for the recommendation to see the radiation doc. Sounds like a good idea, even if he just reinforces what we are leaning towards.
    Your surgeon sounds really good...have a feeling we may be seeing him after hubby reads your post (he is blissfully sleeping, has to get up at 5, I am still off work after surgery of my own).
    AND you are not a horrible writer at all and I SOOOO apppreciate your humor.
    Tonight my hubby said 'it sucks to be me' and then he laughed. He is trying to find the humor in whatever weird way he can right now. I just wish I could take it all away from him, hate hate hate seeing him go through this...take care. Is there anyway one can message back and forth privately on this board?
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Hopeful and Opt...
    Thanks for your comments. My hubbie is 51. I just found out today that my son's urologist in Indianapolis where he goes to college and (Michael Koch) reviews tissue slides, so they are being sent up there and we are going there on 3/16 for a third opinion. He is the department chair at IU Medical Center and he does second opinion review of tissue slides. He is also a DaVinci surgeon. We are getting a second opinion on Monday from a local DaVinci surgeon, Bradley Bell in Louisville, Kentucky.
    My husband does not want to wait. He can't stand the idea of having cancer in him. He is really leaning towards DaVinci.
    We are meeting with his urologist again on Friday.

    Individual treatment decision
    yes, each person needs to select a treatment that he is comfortable with.

    To share, after I was diagnosed, I did a lot of research and started to make the "rounds" I saw a radiation oncologist, who misdiagnosed me, saying that I had a 40to 50 percent chance that the cancer was outside the capsule, and that he thought that my cancer was was staged between 2c and 3b and wanted me take a couple of test, one of which I did not need and the ther would have been incomplete.....My good friend is an advanced practice nurse advised me not to take the tests and go to see a very experienced davinci surgeon at ucla, and I developed lots of questions to ask him about surgery.

    Anyway, after about two weeks I saw him......he asked me whats going on......I tell him my history for about 5 or 10 minutes......then he says to me "my turn" I excuse myself and shut up, and he tells me that I have indolent cancer, that I should go on active surveillance he did not discuss surgery at all......this all took about 5-10 minutes...as he was walking out of the room I asked him how many DaVinci he performed..he answer that he is a world class surgeon and he had done 550, but told me that I don't need surgery .....this meeting took maybe 15 minutes in total.............this hospital is over 30 miles from where I live, using the freeway which has lots of traffic jams.........anyway, as I'm driving back home, tears come to my eyes out of relief.........it was the best 15 minutes that I spent with any doctor

    I decided that since I feel that this doctor is briliant, caring, highly educated at top schools, experienced and ethical and did not push surgery to make a buck, like the radiation oncologist did, to stick with him like glue.....

    Ira
  • shane59
    shane59 Member Posts: 86

    FYI on Da Vinci Surgery
    I just had a fully usable erection with no leaks at Orgasm on a 1/4 pill of viagra 100mg.

    My stats are up above in this post - Day 56 following Da Vinci with zero cancer - Excellent surgeon team.

    randy in indy

    way to go randy and indy
    yes I am waiting for my meds to arrive hope i am as lucky as you . must have had surgery about the same time 4-12.09 keep posting i have left a new post regards viagra etc just awaiting replys hopefull for Ed recovery Shane 59
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    shane59 said:

    way to go randy and indy
    yes I am waiting for my meds to arrive hope i am as lucky as you . must have had surgery about the same time 4-12.09 keep posting i have left a new post regards viagra etc just awaiting replys hopefull for Ed recovery Shane 59

    Shane
    I am on day 66 and am now not using pads (as of yesterday) and have had full erections on 100mg generic Viagra.

    Randy in Indy
  • spacing out
    Hey guys I am looking at this old post and wondering why you haven't been considering
    IMRT non invasive successful RT ? ED is 30 to 50% and may not arrive for several years but then again you may be fine sexually. Also, The calypso treatment is the best targeting treatment in real time , out here, right now.
  • tr008
    tr008 Member Posts: 9
    just diagnosed
    I wish that I'd had numbers like your husbands. My plan would have been to watch carefully and wait but taking a very proactive plan on diet. As I wrote in another letter, there is much info stating that fat is what feeds cancer (particularly prostate cancer). I would read everything that you can get your hands on regarding a very low fat diet. Then have a psa test every three months and watch it very carefully. Until it went up consistently I wouldn't do a thing. And then before surgery I would have another biopsy if some time passes and the psa does go up. I am not a Dr. but this is what I would do.

    Read the "China Study", "Eat to Beat Prostate Cancer Cookbook" and start finding other low fat cookbooks, such as "Eating your way to better Health". There's a lot out there.

    Prostate cancer is so slow growing anyway and with your numbers I don't think that you would put yourself in any danger taking this approach as long as you're watching your psa closely.

    My Opinion!

    Tom
  • mrshisname
    mrshisname Member Posts: 186
    tr008 said:

    just diagnosed
    I wish that I'd had numbers like your husbands. My plan would have been to watch carefully and wait but taking a very proactive plan on diet. As I wrote in another letter, there is much info stating that fat is what feeds cancer (particularly prostate cancer). I would read everything that you can get your hands on regarding a very low fat diet. Then have a psa test every three months and watch it very carefully. Until it went up consistently I wouldn't do a thing. And then before surgery I would have another biopsy if some time passes and the psa does go up. I am not a Dr. but this is what I would do.

    Read the "China Study", "Eat to Beat Prostate Cancer Cookbook" and start finding other low fat cookbooks, such as "Eating your way to better Health". There's a lot out there.

    Prostate cancer is so slow growing anyway and with your numbers I don't think that you would put yourself in any danger taking this approach as long as you're watching your psa closely.

    My Opinion!

    Tom

    Thanks Tom/tr008
    Thanks Tom, i appreciate your opinion and input. Hubbie has followed a low fat diet for years, because of high cholesterol. It runs in his family. I'd say for 20 plus years he has done low fat. Yes, I'd be in favor of watching a bit longer, but he has already decided he wants it OUT! I have to support him in his decision. Thanks so much!
  • Evagirl
    Evagirl Member Posts: 60

    Mrshisname - Oncologist
    GO SEE HIM - Do NOT cancel - educate yourself and husband. It's an Option. My oncologist for second opinion here in Indy was DR. Dougan - He told me "I'd do surgery and come back to me if there are any positive margins or further cancer to kill." He was trained at one of the primer radiation hospitals in US General Mass. Your urologist is doing you right by recommending to get a second, third opinion. Noting your biopsy results it would suggest you do have time...however know this also. My biopsy only showed cancer in the right lobe 3 of 8 samples taken 4 from both sides. POST OP - I had cancer in both sides and tumors in both sides less than 1mm from breaking through the capsle and becoming a positive margin...scary...I was positively detected on OCT 27th and had surgery on 12/29. My first biopsy results would have suggested I had plenty of time...PSA's 7.25 and 6.17....soooooo... not everyone is the same nor is their cancer nor is it exactly what the biopsy results would indicate...again though looking back at my stats...Dr. Koch's lab used for second opinion was closer than the original lab to the actual post op path report.... more severe grading and perhaps a tad less volume. Here is what I do reco for your husband. Get and MRI with Coil - spectroscopy if you can..just another test and I like recomending that to everyone because whY? 1. can tell if the capsle has been broken through which would most likely alter your choices of method and 2. Armed with yet more information to make a better treatment decision. YOu may have heard this in one of my other posts...that the orginal surgeon signed up with in the same group I ended with...said no need for MRI with coil...would not change the surgery plan...he point blank told me I will swing wide and take the right side nerve...hey the nodgle was on that side...but hey wait a minute after the surgery...post op path...it was on both sides....If he knew that he would have taken both sides....now I have no nerves ...no erections...I"M 52..and far from dead especially in that area..hey one of the best reasons to fight to stay alive as far as I am concerned...that, a good beer and good food...I am happy for life. Ok as I slap myself to stay back on point here... so...the surgeon I chose...Says "Randy you get an MRI coil so I can see if its escaped...then when I am in there doing the surgery if the nerve peels off easily..nothing holding on to it...I'm saving it...both sides....Not only did he save both nerves 100%...he found what he said he has only seen in 3 or 4 other men...two extra pudental arteries running on the topside of the penis feeding blood....he smiled you and Annette will thank me for finding and saving them....Yeap...in my book...He's my type of ROCK STAR SURGEON...I love the guy! And wha-la...on day 56 post da vinci..usable erection...no leak on orgasm...it just doesn't get any better than that!!!!!!!!!!!!!!!!

    Crazy... Randy in indy - yeah...that's "good crazy" not "bad crazy"

    We need smiles & some laughter here...I try to provide that from time to time...even though I am a rambling horrible writer.

    Randy
    I dont think you

    Randy

    I dont think you mentioned the name of your Rock STAR Surgeon~~~


    Sounds like a great surgeon and it was the Da vinci right?
  • Evagirl
    Evagirl Member Posts: 60
    2ndBase said:

    Consider All Options
    My psa was 24 and gleason of 9 at age 52 and radiation treatmentrs killed All the cancer in my prostate. A lot less side effects too. I had to go with radiation due to it having already spread. The choice is personal but surgery is not any better than radiation in getting the cancer killed. It sounds like your case was discovered very early and any treatment you choose will work so think about the side-effects because the next day it will be to late to change your mind. All the best.

    to 2nd base

    those are pretty high stats and impressive that you were cured w/radiation..

    Would you care to share why type of radiation? Was it Beam? and did you
    have a higher dose than normal? Also what about your side effects,if any?



    I have been reading that surgery does not necessarily get all of the
    cancer....
  • mrshisname
    mrshisname Member Posts: 186
    Evagirl said:

    Randy
    I dont think you

    Randy

    I dont think you mentioned the name of your Rock STAR Surgeon~~~


    Sounds like a great surgeon and it was the Da vinci right?

    evagirl
    Hi eva, we have met Randy and his surgeon was Dr. Hollensbe in Indiana. We are seeing his co-surgeon, Dr. Scott, next wednesday and then hubby will decide which one to go with. I will post on our appointment likely on Thursday. Keep the faith girl.