Randy In Indy You Posed Some Questions to ME

WHW
WHW Member Posts: 189
edited March 2014 in Prostate Cancer #1
Randy,

I know that somewhere in the last week or so I saw a post where you posed some questions to me. I am at home this weekend and with a little clearer mind and a lot more energy, so I wanted to answer them for you.

The only problem now is that I can't find them. So either direct me to them or ask again and I will be glad to answer.

Thank you very much for the supporting words and blessings you have sent my way this last week or so.

We appreciate it very much,

Sonny

Comments

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Sonny, You do not need to rush and answer this
    You certainly have much more to deal with than I do. It was good news about your wifes situation...if that is even possible under those circumstances...better a spot in the bone than a lesion on the brain stem...at least it sounds better and with the comments you indicated from the Dr. they seem to think they can knock it out with pinpoint precision....were all pulling for that! Here's a copy of some of the posts where I asked questions.

    Sonny,

    I wrote below to Ira and in my book of a note I mentioned and wondered several things from reading all your posts....

    I would be interested in know how you recovered and when you started doing things after surgery...like driving, golfing if you golf...and your officiating...if that was even in season at the time of your surgery. I would also like to know if you were a competitive athlete growing up and if you felt that had anything to do with your recovery good or bad.

    thanks

    Randy

    Another one: sorry about the book but I value your opinion because I can tell how thorough you are at approaching everything.

    Well Ira...now it is....
    I am now officially a bonifide memeber of this PCa club. As I suspected and expected the nodgle they felt was cancer I had a real strong feeling...and it proved to be correct- biopsy results came back on 10-27-09.

    Stats:

    52 years old
    8-15-09 PSA 7.25 - got as a lark while at the Indiana State Fair
    10-2-09 PSA 6.125 - from Family Dr. vist also had DRE he didn't feel anything unusal
    10-14-09 DRE - Urologist felt Nodgle
    10-20-09 Biopsy
    10-27-09 Biopsy report
    17 gram prostate
    3 of 8 samples cancerous 50%, 20%, 20% all on right side where nodgle was none on left
    Gleason 3+3=6 T2a
    10-29-09 Consultation with Dr.
    Thinking best treatment is removal of what he believes is organ contained cancer
    Following discussion is more than happy to refer and get me in for second opinions
    from anyone I want. We spoke of Mani Mennon in MI - Sonny's Surgeon - he thought
    you had to make a donation to his insitute in order to get on his schedule - any
    any truth to that Sonny? Also talked of JA Smith at Vanderbilt considered one
    of the top ten in US. - still holding on to that option Have an Appt set 11/17 with
    Michael Koch - Indiana University Dept of Medicine - probably done more than 3,000
    Robotic Ops. Also seeing radiation Oncologist Dr. Dugan - Carmel, IN tomorrow.

    Some thoughts and questions for some of you having already gone through with your research. A comment my Urologist made was want to know what questions you have not asked yet and should? Dr. Greg Wahle teamed with Jeff Vaught for all robotic procedures said ask me how many times I had to dish out of a robotic and finish in open? ZERO How many blood transfusions have I had to give? Zero He's done over 300 and says his incontinence is at 2-5% as long as you don't consider incontinence when you leak with snezzing and coughing. My mother at 78 already has that. Says a young healthy guy like myself with only one side nerve sparred should be 70% but said he would only quote 50% for ED. He would take the right side nerve and swing wide with cut because thats the side of nodgle and suspects or wants to limit chances of nueroinvasion causing a reoccurance - makes sense to me - Anyone know something I should know about that? I too believe that I should have no issues with incontence because of my strength in legs from being a distance runner most of my life running over 100,000 miles in my lifetime. Also the ED part does not scare me too much as I have never ever had one issue with that except once when the one dating years back was a downer - partner I have been with the last 9 years has always spurred on exceptional outcomes. Also, I feel being the highly trained athlete in younger years should help in this area for recovery. Sonny looks to me like a person that was athletic all his life...probably at a very competitive level and he had a very quick recovery from the OP overall getting back to help his wife in 8 days...and no incontinence. Sonny if you read this can you comment. Hope all is well with all plans and recoveries and for the first time in my life in anything I want to shoot for a ZERO score once I have the mutated cells extracted from my body. OH, through some of my research I have found that men in the Rocky Mountains and Northeast are much more prevalent to contract prostate cancer...I grew up in Colo and lived in CT, and MN much of my life until settling here in Indiana for the past 12 years. Please everyone feel free to comment share with anything for about anything I've posted. I currently have surgery set for 12-9-9 with Dr. Wahle but may change based on my appointments with Dr's above or more. He said I do not have to rush but wouldn't want me to wait 6 months....Hey that reminds me ...does anyone have any information regarding the following:

    If you have a biopsy - punch 8 holes in prostate of which three went through the cancer...why would that not make an exit for cancer cells to move outside the prostate and or grow at a higher rate..that has been nagging at my mostly over analytical brain but makes complete sense to me from a logic perspective. Also, when ejaculation after the biopsy contains blood could not that semen contain cancer cells? I have not asked the dr these questions yet.

    Well God Bless all and thanks so much to all who write on these and other boards because its certainly a very positive force for and among all of us!!!

    Randy
  • WHW
    WHW Member Posts: 189

    Sonny, You do not need to rush and answer this
    You certainly have much more to deal with than I do. It was good news about your wifes situation...if that is even possible under those circumstances...better a spot in the bone than a lesion on the brain stem...at least it sounds better and with the comments you indicated from the Dr. they seem to think they can knock it out with pinpoint precision....were all pulling for that! Here's a copy of some of the posts where I asked questions.

    Sonny,

    I wrote below to Ira and in my book of a note I mentioned and wondered several things from reading all your posts....

    I would be interested in know how you recovered and when you started doing things after surgery...like driving, golfing if you golf...and your officiating...if that was even in season at the time of your surgery. I would also like to know if you were a competitive athlete growing up and if you felt that had anything to do with your recovery good or bad.

    thanks

    Randy

    Another one: sorry about the book but I value your opinion because I can tell how thorough you are at approaching everything.

    Well Ira...now it is....
    I am now officially a bonifide memeber of this PCa club. As I suspected and expected the nodgle they felt was cancer I had a real strong feeling...and it proved to be correct- biopsy results came back on 10-27-09.

    Stats:

    52 years old
    8-15-09 PSA 7.25 - got as a lark while at the Indiana State Fair
    10-2-09 PSA 6.125 - from Family Dr. vist also had DRE he didn't feel anything unusal
    10-14-09 DRE - Urologist felt Nodgle
    10-20-09 Biopsy
    10-27-09 Biopsy report
    17 gram prostate
    3 of 8 samples cancerous 50%, 20%, 20% all on right side where nodgle was none on left
    Gleason 3+3=6 T2a
    10-29-09 Consultation with Dr.
    Thinking best treatment is removal of what he believes is organ contained cancer
    Following discussion is more than happy to refer and get me in for second opinions
    from anyone I want. We spoke of Mani Mennon in MI - Sonny's Surgeon - he thought
    you had to make a donation to his insitute in order to get on his schedule - any
    any truth to that Sonny? Also talked of JA Smith at Vanderbilt considered one
    of the top ten in US. - still holding on to that option Have an Appt set 11/17 with
    Michael Koch - Indiana University Dept of Medicine - probably done more than 3,000
    Robotic Ops. Also seeing radiation Oncologist Dr. Dugan - Carmel, IN tomorrow.

    Some thoughts and questions for some of you having already gone through with your research. A comment my Urologist made was want to know what questions you have not asked yet and should? Dr. Greg Wahle teamed with Jeff Vaught for all robotic procedures said ask me how many times I had to dish out of a robotic and finish in open? ZERO How many blood transfusions have I had to give? Zero He's done over 300 and says his incontinence is at 2-5% as long as you don't consider incontinence when you leak with snezzing and coughing. My mother at 78 already has that. Says a young healthy guy like myself with only one side nerve sparred should be 70% but said he would only quote 50% for ED. He would take the right side nerve and swing wide with cut because thats the side of nodgle and suspects or wants to limit chances of nueroinvasion causing a reoccurance - makes sense to me - Anyone know something I should know about that? I too believe that I should have no issues with incontence because of my strength in legs from being a distance runner most of my life running over 100,000 miles in my lifetime. Also the ED part does not scare me too much as I have never ever had one issue with that except once when the one dating years back was a downer - partner I have been with the last 9 years has always spurred on exceptional outcomes. Also, I feel being the highly trained athlete in younger years should help in this area for recovery. Sonny looks to me like a person that was athletic all his life...probably at a very competitive level and he had a very quick recovery from the OP overall getting back to help his wife in 8 days...and no incontinence. Sonny if you read this can you comment. Hope all is well with all plans and recoveries and for the first time in my life in anything I want to shoot for a ZERO score once I have the mutated cells extracted from my body. OH, through some of my research I have found that men in the Rocky Mountains and Northeast are much more prevalent to contract prostate cancer...I grew up in Colo and lived in CT, and MN much of my life until settling here in Indiana for the past 12 years. Please everyone feel free to comment share with anything for about anything I've posted. I currently have surgery set for 12-9-9 with Dr. Wahle but may change based on my appointments with Dr's above or more. He said I do not have to rush but wouldn't want me to wait 6 months....Hey that reminds me ...does anyone have any information regarding the following:

    If you have a biopsy - punch 8 holes in prostate of which three went through the cancer...why would that not make an exit for cancer cells to move outside the prostate and or grow at a higher rate..that has been nagging at my mostly over analytical brain but makes complete sense to me from a logic perspective. Also, when ejaculation after the biopsy contains blood could not that semen contain cancer cells? I have not asked the dr these questions yet.

    Well God Bless all and thanks so much to all who write on these and other boards because its certainly a very positive force for and among all of us!!!

    Randy

    Answers
    Randy,

    First, recognize that every one who has ever had surgery is different and responds and recovers in their own individual way. It is just like the stats you read on surgeries and successes. You will chart your own path and in ways it will track with others and in ways you will set your own path.

    Okay, let me try to answer your questions by describing my journey.

    I am 61 years old, 195lbs and 17% body fat. Pretty good shape for a geezer. I played baseball through high school and softball as an adult until about age 52. I bike for pleasure with my wife. Walk about 2-3 miles a day because of the dog. I don't run at all except on the ball field because I have had 5 knee surgeries, all meniscus tears. I have been umpiring baseball and softball for 17 years. I average about 200 games per year. So yea I am pretty physically active.

    I think some of that helped with my recovery, but I think what I did before the surgery had more of an impact. I practiced the Kegels any time I thought about it for at least 4-6 weeks prior. And I upped my walks just a little too.

    Most of the issues guys report having with recovery revolve around the catheter and the digestive system. Take the stuff you hear about the digestive system seriously.

    The drugs they pump into you for the surgery put the system to sleep. And it takes a while for it to wake up and start functioning properly. My doctor's staff gave me a post surgery diet to follow. I started the diet about 10 days prior and was religious with it after for the first 10 days and then slowly went back to my old eating habits. Take the stool softeners they give you. If they don't give you any buy some. You need them.

    I did not have the traditional Foley Catheter. My doc uses a Supra Pubic. There is no tube out the penis. Instead a tube is placed during surgery in the lower abdomen that is connected to the collection bag. It made the walking after surgery so much easier. My cath was removed 6 days following surgery and I have been dry and in control ever since.

    I walked about 2-3 miles per day starting the day I was released from the hospital. But I did it in small increments. I walked 1/2 to 3/4 mile per trip, at least 4 times per day.

    I came home 8 days after surgery and when my wife met me at the airport I drove the car home. They will only tell you not to drive while you have the cath in. You don't want to imagine what could happen if you were driving with the cath and had an accident.

    I was on the field umpiring 3 weeks after surgery. But I took it easy, no more than 2 games per day. My only real concern was taking a shot in the abdomen when I was behind the plate. I was lucky. But I don't get hit there too often anyway. I do play golf, but haven't been on the course since the surgery. I have been to the range a few times and hit wedges, nothing too strenuous. But then again I have been a little busy the last few years and haven't been on the course much anyway. The only restriction I took seriously was the weight lifting one. Nothing over 10 pounds for first 6 weeks. Nothing that torques the torso or stresses the abs. Like running the vacuum.

    Incontinence is different for every guy I have talked to or read posts from, on the various forums I participate in. Some are dry from day one and some are still having issues many months or years later. It's a crap shoot and you never know.

    ED you never know about and there isn't much you can do to prepare. I had both side nerves spared and have seen a little improvement but nothing useable. I take 5mg Cialis daily to continue the blood flow. I have had a few surprise nocturnal erections. There are guys who have had all nerves spared and nothing and there are guys who lost all nerves and never had a problem. Go figure.

    I think I answered all of your questions. If I missed anything or you think of something new, let me know.

    Good luck brother and bless you and your family. See you on the other side,

    Sonny
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    WHW said:

    Answers
    Randy,

    First, recognize that every one who has ever had surgery is different and responds and recovers in their own individual way. It is just like the stats you read on surgeries and successes. You will chart your own path and in ways it will track with others and in ways you will set your own path.

    Okay, let me try to answer your questions by describing my journey.

    I am 61 years old, 195lbs and 17% body fat. Pretty good shape for a geezer. I played baseball through high school and softball as an adult until about age 52. I bike for pleasure with my wife. Walk about 2-3 miles a day because of the dog. I don't run at all except on the ball field because I have had 5 knee surgeries, all meniscus tears. I have been umpiring baseball and softball for 17 years. I average about 200 games per year. So yea I am pretty physically active.

    I think some of that helped with my recovery, but I think what I did before the surgery had more of an impact. I practiced the Kegels any time I thought about it for at least 4-6 weeks prior. And I upped my walks just a little too.

    Most of the issues guys report having with recovery revolve around the catheter and the digestive system. Take the stuff you hear about the digestive system seriously.

    The drugs they pump into you for the surgery put the system to sleep. And it takes a while for it to wake up and start functioning properly. My doctor's staff gave me a post surgery diet to follow. I started the diet about 10 days prior and was religious with it after for the first 10 days and then slowly went back to my old eating habits. Take the stool softeners they give you. If they don't give you any buy some. You need them.

    I did not have the traditional Foley Catheter. My doc uses a Supra Pubic. There is no tube out the penis. Instead a tube is placed during surgery in the lower abdomen that is connected to the collection bag. It made the walking after surgery so much easier. My cath was removed 6 days following surgery and I have been dry and in control ever since.

    I walked about 2-3 miles per day starting the day I was released from the hospital. But I did it in small increments. I walked 1/2 to 3/4 mile per trip, at least 4 times per day.

    I came home 8 days after surgery and when my wife met me at the airport I drove the car home. They will only tell you not to drive while you have the cath in. You don't want to imagine what could happen if you were driving with the cath and had an accident.

    I was on the field umpiring 3 weeks after surgery. But I took it easy, no more than 2 games per day. My only real concern was taking a shot in the abdomen when I was behind the plate. I was lucky. But I don't get hit there too often anyway. I do play golf, but haven't been on the course since the surgery. I have been to the range a few times and hit wedges, nothing too strenuous. But then again I have been a little busy the last few years and haven't been on the course much anyway. The only restriction I took seriously was the weight lifting one. Nothing over 10 pounds for first 6 weeks. Nothing that torques the torso or stresses the abs. Like running the vacuum.

    Incontinence is different for every guy I have talked to or read posts from, on the various forums I participate in. Some are dry from day one and some are still having issues many months or years later. It's a crap shoot and you never know.

    ED you never know about and there isn't much you can do to prepare. I had both side nerves spared and have seen a little improvement but nothing useable. I take 5mg Cialis daily to continue the blood flow. I have had a few surprise nocturnal erections. There are guys who have had all nerves spared and nothing and there are guys who lost all nerves and never had a problem. Go figure.

    I think I answered all of your questions. If I missed anything or you think of something new, let me know.

    Good luck brother and bless you and your family. See you on the other side,

    Sonny

    Thanks So much Sonny
    Lots of good advice...I would be interested in the diet...and if there is anything you can do to wake up the digestive system following surgery...I have been told about that from the doctors...if you don't pass gas...you don't get to go home...Honestly I don't think I'll have a problem there but who knows like you said...it's different for each body....years ago I was a very in shape athlete..with a morning resting heart rate of 35-38 upon waking...and usually in the 50's during the day walking around doing stuff...however since about 6 years ago I have done nothing for exercise except around the yard and projects....I inheritied my mothers arthritis in my hips...maybe running 100,000 miles added to that problem...but have not roller bladed or run since...have done some biking but nothing consistent. I'm starting to get more exercise now and doing kegels like a man possesed - doing 10 sets of 10 seconds each I try to do three times each day...like you whenever you think about it...like now..lol I will be asking about the Supra Pubic but I believe they are planning on the foley which they try to take out at 8 days. My doc says Mani Mennen doesn't do any bladder neck reconstruction and just leaves it the way it ends up in his surgery...seemed kinda audacious for him to comment about that...how could he know what Mani does or doesn't do?? Mine comes off kinda like a rock star of surgeons but has the reputation and numbers to back it up...they always get the cases no one else will touch and seem to come out on top everytime with success.

    I have a perfect 3/4 walk out and back from my house out in the country I plan on using and the driving home on day 8 sounds real good to me. I work for a Tomato Manufacture selling tomatoes and work from my home so hope to be back at the desk and computer in about 4 days or so. I am going to look into a donut cushion because I bet I will need one..perhaps a pillow.

    I will definitely take the stool softner and would really like the diet info if you felt it was a big help. I will be interested to hear exactly what radiation you are choosing and why as I suspect I will have positive margins...just another hunch....just like when this all started I thought I had cancer prior to the biopsy.

    Lots of good advice on here about every aspect...thank God we have this forum!

    Again thanks so much for your thoughtful response and info. I wish both you and your wife the best curing treatment and speedy recovery so you can get back to the joys of life.

    God Bless!

    Randy
  • WHW
    WHW Member Posts: 189

    Thanks So much Sonny
    Lots of good advice...I would be interested in the diet...and if there is anything you can do to wake up the digestive system following surgery...I have been told about that from the doctors...if you don't pass gas...you don't get to go home...Honestly I don't think I'll have a problem there but who knows like you said...it's different for each body....years ago I was a very in shape athlete..with a morning resting heart rate of 35-38 upon waking...and usually in the 50's during the day walking around doing stuff...however since about 6 years ago I have done nothing for exercise except around the yard and projects....I inheritied my mothers arthritis in my hips...maybe running 100,000 miles added to that problem...but have not roller bladed or run since...have done some biking but nothing consistent. I'm starting to get more exercise now and doing kegels like a man possesed - doing 10 sets of 10 seconds each I try to do three times each day...like you whenever you think about it...like now..lol I will be asking about the Supra Pubic but I believe they are planning on the foley which they try to take out at 8 days. My doc says Mani Mennen doesn't do any bladder neck reconstruction and just leaves it the way it ends up in his surgery...seemed kinda audacious for him to comment about that...how could he know what Mani does or doesn't do?? Mine comes off kinda like a rock star of surgeons but has the reputation and numbers to back it up...they always get the cases no one else will touch and seem to come out on top everytime with success.

    I have a perfect 3/4 walk out and back from my house out in the country I plan on using and the driving home on day 8 sounds real good to me. I work for a Tomato Manufacture selling tomatoes and work from my home so hope to be back at the desk and computer in about 4 days or so. I am going to look into a donut cushion because I bet I will need one..perhaps a pillow.

    I will definitely take the stool softner and would really like the diet info if you felt it was a big help. I will be interested to hear exactly what radiation you are choosing and why as I suspect I will have positive margins...just another hunch....just like when this all started I thought I had cancer prior to the biopsy.

    Lots of good advice on here about every aspect...thank God we have this forum!

    Again thanks so much for your thoughtful response and info. I wish both you and your wife the best curing treatment and speedy recovery so you can get back to the joys of life.

    God Bless!

    Randy

    Randy Send Me an Email
    Randy, send me an email and I'll be glad to forward the diet info and the entire post surgery package I received. As to you dr.s remarks about Dr. M. I have some very interesting info that you may wish to have for your future conversations and possible evaluations of other doctors. I do not believe that this subject matter is for open forum unless there are those that solicit it.

    Email: whwolfe3rd@yahoo.com

    Looking forward to talking with you,

    Sonny
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    WHW said:

    Randy Send Me an Email
    Randy, send me an email and I'll be glad to forward the diet info and the entire post surgery package I received. As to you dr.s remarks about Dr. M. I have some very interesting info that you may wish to have for your future conversations and possible evaluations of other doctors. I do not believe that this subject matter is for open forum unless there are those that solicit it.

    Email: whwolfe3rd@yahoo.com

    Looking forward to talking with you,

    Sonny

    Thanks Sonny!
    "you've got mail"

    Best to you and Lynn!

    I'm off to Chicago for an industry "Dog and Pony Show" I find this very ironic that I work for a tomato manufacturer and I eat tons of canned tomatoes...probably on average a can per day....Canned tomatos and cooked tomatos are supposed to be one of the best sources of Lycopene which supposedly has been linked to staving off prostate cancer....I have worked and been consuming canned tomatoes for the last ten years with this company....I guess may I should think about it in terms of ...what if I hadn't been eating all those tomatoes...may I would not be writing this right now....

    Randy