Good luck to Ed and Trew

lewvino
lewvino Member Posts: 1,010
edited March 2014 in Prostate Cancer #1
Ed has a date with the Robot tomorrow and Trew has a doctor appt.

Wishing them both the best going forward!

Larry
«1

Comments

  • havit2
    havit2 Member Posts: 21
    good luck
    best wishes to you both, my thoughts and prayers are with you
  • chitown
    chitown Member Posts: 90
    second that
    best wishes to both of your to win this fight...my high school motto was 'Evil exists in every corner of the world...fight a good fight'.
  • Trew
    Trew Member Posts: 931 Member
    Larry, and everyone, thanks!
    Larry, and everyone, thanks! This has been a confusing day for me. I have urinated 4 times already today. Some days, once I am up I may not urinate at all, all day- just dribble. I try and nothing comes out. Some days I can- very confusing. Tomorrow I hope to get some answers and move forward. I am very excited right now. I anticipate a recommendation from the doctor that will move me forward.

    I do appreciate the support from this group. How real it really is! Thanks again.
  • griff 1
    griff 1 Member Posts: 114
    Trew said:

    Larry, and everyone, thanks!
    Larry, and everyone, thanks! This has been a confusing day for me. I have urinated 4 times already today. Some days, once I am up I may not urinate at all, all day- just dribble. I try and nothing comes out. Some days I can- very confusing. Tomorrow I hope to get some answers and move forward. I am very excited right now. I anticipate a recommendation from the doctor that will move me forward.

    I do appreciate the support from this group. How real it really is! Thanks again.

    luck
    goodluck to both of you. keep us informed. griff
  • CharlieG
    CharlieG Member Posts: 67
    griff 1 said:

    luck
    goodluck to both of you. keep us informed. griff

    Amen Brothers!
    Best of luck!
  • Trew
    Trew Member Posts: 931 Member
    I hope Ed is doing well.
    I

    I hope Ed is doing well.

    I posted this update in The Pad Diaries- I'll share it here, too. I am tired today. News was both good and bad. Here is the story:

    I think I might want to just go away for awhile. Dr. Latini at UM is such a nice person, and very sympathic. And probbly no urethroplasty for me. The scar tissue is in the wrong place in an area that has been heavily hit by radiation and only a few doctors in the country might take on such a case.

    The option would be to open up the stricture with a knife and then cath for 5 days or so and then back to self cath to see if that will contain the stricture/scar tissue. I am a mim of 6 months from an AUS, but maybe up to two years depending on how the strictues respond to the knifing. She is going to schedule that as soon as possible, maybe this coming week. The opening that is left is very narrow- her scope today could not even get close to my bladder but she did get a good X-ray with dye.

    Worst case senario is I end up by-passing the urethra altogether and get an external bag- remote possibilty but she just wanted to mention it, in case.....

    I was hoping for a straightforward urethroplasty and then on to the AUS. At this time the AUS is not even a certainity. Depends on how well the knifing works and few other factors. Somewhat sobbering day. So, looks like I will be back to being attached to a cath bag soon for a few days.

    I am very tired. I don't know if I want to respond much more. This just goes on and on....

    Everyone- thanks again for your support and well wishes. i know someday I will get a break for the better in all this.

    -hiker
  • Trew
    Trew Member Posts: 931 Member
    I hope Ed is doing well
    I hope Ed is doing well today.

    I must have crashed and burned pretty hard last night- I have been rather slow on the upbound today. I was hoping U of M would call today with a hospital date for me- but it didn't happen today.

    Larry, thanks for the note. I was on the chat today for awhile but overall, this is just a down and recovery day for me. I must confess, a few times, for the first time, I have sort of wished I was born a female. Please forgive me for that mental laspe.

    Also, Dr. LaTini told me every time the urethra is shortened the penis is shorten also by that much. We were looking at maybe (but ruled out for now)taking a section of the urethra out.

    Maybe tomorrow UM will call. But there are no quick fixes for me. This is going to take months and I think I now have a new, a 3rd, uro looking after me.

    so it goes.....

    Best wishes to Ed- you do have all my sympathies today.
  • ejn
    ejn Member Posts: 64
    I made it back home
    Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
    The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
    I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
    Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
    Time for me to get back to the chair and watch some new, take a pill, get a nap.

    Thanks Larry for all kind words and thoughts and to everyone here.

    Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

    Ed
  • Trew
    Trew Member Posts: 931 Member
    ejn said:

    I made it back home
    Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
    The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
    I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
    Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
    Time for me to get back to the chair and watch some new, take a pill, get a nap.

    Thanks Larry for all kind words and thoughts and to everyone here.

    Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

    Ed

    Ed, welcome home. It looks
    Ed, welcome home. It looks like everything worked out ok for you. I remember well the recliner camp-out.

    You are now on the mend.
  • lewvino
    lewvino Member Posts: 1,010
    ejn said:

    I made it back home
    Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
    The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
    I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
    Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
    Time for me to get back to the chair and watch some new, take a pill, get a nap.

    Thanks Larry for all kind words and thoughts and to everyone here.

    Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

    Ed

    Ed, Glad you are now on the
    Ed, Glad you are now on the healing side! The shoulder pain is normal. They put you in a semi upside down position for the surgery so their is lots of weight bearing on the shoulder during surgery. A few days and that will be gone!
    Push the fluids and walk. Don't worry if you have some urinary problems once the cath comes out. Hoping you are lucky like I was and only used 1 pad the first day and that was that. But It might take a few weeks or even a month or two.

    If you need to chat...you got my number!

    larry
  • JR1949
    JR1949 Member Posts: 230
    ejn said:

    I made it back home
    Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
    The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
    I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
    Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
    Time for me to get back to the chair and watch some new, take a pill, get a nap.

    Thanks Larry for all kind words and thoughts and to everyone here.

    Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

    Ed

    It Will Take Some Time
    Ed, It will take some time for the healing. Good news is that it does get better. Sounds like you've got some good help from your wife. Just take it easy and enjoy the rest time.

    JR
  • JR1949
    JR1949 Member Posts: 230
    Trew said:

    I hope Ed is doing well.
    I

    I hope Ed is doing well.

    I posted this update in The Pad Diaries- I'll share it here, too. I am tired today. News was both good and bad. Here is the story:

    I think I might want to just go away for awhile. Dr. Latini at UM is such a nice person, and very sympathic. And probbly no urethroplasty for me. The scar tissue is in the wrong place in an area that has been heavily hit by radiation and only a few doctors in the country might take on such a case.

    The option would be to open up the stricture with a knife and then cath for 5 days or so and then back to self cath to see if that will contain the stricture/scar tissue. I am a mim of 6 months from an AUS, but maybe up to two years depending on how the strictues respond to the knifing. She is going to schedule that as soon as possible, maybe this coming week. The opening that is left is very narrow- her scope today could not even get close to my bladder but she did get a good X-ray with dye.

    Worst case senario is I end up by-passing the urethra altogether and get an external bag- remote possibilty but she just wanted to mention it, in case.....

    I was hoping for a straightforward urethroplasty and then on to the AUS. At this time the AUS is not even a certainity. Depends on how well the knifing works and few other factors. Somewhat sobbering day. So, looks like I will be back to being attached to a cath bag soon for a few days.

    I am very tired. I don't know if I want to respond much more. This just goes on and on....

    Everyone- thanks again for your support and well wishes. i know someday I will get a break for the better in all this.

    -hiker

    Glad To Hear You've Started
    Trew, Glad to hear that you have started the journey towards taking care of your problem.
    Yes, someday you will get a break for the better in all of this. I know it has been tough for you and you have my sympathy. You have my support and well wishes. You continue to be in my thoughts and prayers.

    JR
  • griff 1
    griff 1 Member Posts: 114
    ejn said:

    I made it back home
    Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
    The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
    I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
    Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
    Time for me to get back to the chair and watch some new, take a pill, get a nap.

    Thanks Larry for all kind words and thoughts and to everyone here.

    Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

    Ed

    ED
    HOW ARE YOU DOING???? GRIFF
  • ejn
    ejn Member Posts: 64
    griff 1 said:

    ED
    HOW ARE YOU DOING???? GRIFF

    Griff
    I am doing great. I went back to work today. I am basically dry other than a few drips when I sit wrong. My path came back great, less than 5% total in the gland and everything clear for margins. It was more painful than I planned but good drugs fixed that. My worst pain was in the tops of my shoulders. I havent really started on the ED front but will be getting into that real soon. Both of the bundles were spared so I am hopeful in that department as well.

    Post Op Path:
    Gleason 3+3=6
    Tumor involves left lobe only
    Tumor constitutes less than 5% of gland volumne
    No vascular or neural invasion detected
    No capsular invasion detected
    Distal urethral margin of resection free of tumor
    Proximinal urethral margin of resection free of tumor
    Radial margin of resection free of tumor
    Seminal vesicles uninvolved by carcinoma
    TM stage T2a (unilateral less than 1/2 of one side), NX, MX
    ALL Margins uninvolved
    Extra Porsaatic extension: Absent
  • gumbyrun
    gumbyrun Member Posts: 58
    ejn said:

    Griff
    I am doing great. I went back to work today. I am basically dry other than a few drips when I sit wrong. My path came back great, less than 5% total in the gland and everything clear for margins. It was more painful than I planned but good drugs fixed that. My worst pain was in the tops of my shoulders. I havent really started on the ED front but will be getting into that real soon. Both of the bundles were spared so I am hopeful in that department as well.

    Post Op Path:
    Gleason 3+3=6
    Tumor involves left lobe only
    Tumor constitutes less than 5% of gland volumne
    No vascular or neural invasion detected
    No capsular invasion detected
    Distal urethral margin of resection free of tumor
    Proximinal urethral margin of resection free of tumor
    Radial margin of resection free of tumor
    Seminal vesicles uninvolved by carcinoma
    TM stage T2a (unilateral less than 1/2 of one side), NX, MX
    ALL Margins uninvolved
    Extra Porsaatic extension: Absent

    On the other side
    Congrats on being here. Back to work so soon? Randy - we got another rock star on our hands.
    My greatest pain (other than an elyis -spelling?) was in my quads due to the position during the surgery.
    I'm 6 months post daVinci and dry 99% of the time. Wear tight underwear!
    God bless and spread the word to others to keep an eye on their numbers...and if they should join the brotherhood, check out this website.
    Mike
  • gumbyrun
    gumbyrun Member Posts: 58
    Trew said:

    I hope Ed is doing well.
    I

    I hope Ed is doing well.

    I posted this update in The Pad Diaries- I'll share it here, too. I am tired today. News was both good and bad. Here is the story:

    I think I might want to just go away for awhile. Dr. Latini at UM is such a nice person, and very sympathic. And probbly no urethroplasty for me. The scar tissue is in the wrong place in an area that has been heavily hit by radiation and only a few doctors in the country might take on such a case.

    The option would be to open up the stricture with a knife and then cath for 5 days or so and then back to self cath to see if that will contain the stricture/scar tissue. I am a mim of 6 months from an AUS, but maybe up to two years depending on how the strictues respond to the knifing. She is going to schedule that as soon as possible, maybe this coming week. The opening that is left is very narrow- her scope today could not even get close to my bladder but she did get a good X-ray with dye.

    Worst case senario is I end up by-passing the urethra altogether and get an external bag- remote possibilty but she just wanted to mention it, in case.....

    I was hoping for a straightforward urethroplasty and then on to the AUS. At this time the AUS is not even a certainity. Depends on how well the knifing works and few other factors. Somewhat sobbering day. So, looks like I will be back to being attached to a cath bag soon for a few days.

    I am very tired. I don't know if I want to respond much more. This just goes on and on....

    Everyone- thanks again for your support and well wishes. i know someday I will get a break for the better in all this.

    -hiker

    Grease the tube
    Trew,
    If you should end up with another cath, pack a tube of neosporin in your overnight bag. Remember to wash the tube a few times a day and I coated mine with the neosporin to accommodate movement.
    Mike
  • Trew
    Trew Member Posts: 931 Member
    gumbyrun said:

    On the other side
    Congrats on being here. Back to work so soon? Randy - we got another rock star on our hands.
    My greatest pain (other than an elyis -spelling?) was in my quads due to the position during the surgery.
    I'm 6 months post daVinci and dry 99% of the time. Wear tight underwear!
    God bless and spread the word to others to keep an eye on their numbers...and if they should join the brotherhood, check out this website.
    Mike

    Sometimes I am so envious of
    Sometimes I am so envious of others.

    I am happy for your success, don't get me wrong, but I never imagined 18 months later I would still be trying to get things fixed.

    Tomorrow is an outpatient procedure. The doctor wants real up clsoe and personal view of what we are dealing with. Ideally, maybe I can get cleared for the urethroplasty and move on. Realisticly, well, I am a bit envious of many of you. It is a strange emotion for me and it makes me feel guilty at times, but it is almost too much for me to read how well many are doing and I am hoping to have an urethra when this is all done.

    Well, tonight I took a xanax and its time for bed. I'll be brave and couragous tomorrow and face what comes. What else is there to do?
  • gumbyrun
    gumbyrun Member Posts: 58
    Trew said:

    Sometimes I am so envious of
    Sometimes I am so envious of others.

    I am happy for your success, don't get me wrong, but I never imagined 18 months later I would still be trying to get things fixed.

    Tomorrow is an outpatient procedure. The doctor wants real up clsoe and personal view of what we are dealing with. Ideally, maybe I can get cleared for the urethroplasty and move on. Realisticly, well, I am a bit envious of many of you. It is a strange emotion for me and it makes me feel guilty at times, but it is almost too much for me to read how well many are doing and I am hoping to have an urethra when this is all done.

    Well, tonight I took a xanax and its time for bed. I'll be brave and couragous tomorrow and face what comes. What else is there to do?

    guilt
    On the other end of the spectrum...
    I believe this site is about about personal sharing and healing so here goes.
    I remember walking through the parking garage into the Cancer Center at Allegheny General in Pitt for my first appointment with the surgical urologist. A few cars passed us by and I saw a mom in one car and a 20-something in the next, both wearing head scarves over presumably hairless heads from chemo. I said to my wife, Becky, "I don't belong here...I'm not sick enough. I haven't paid my dues. " I didn't mean to imply that I lived a righteous life, etc., but that I sort of felt, and continue to feel, that I am sort of in the minor league of cancers. Please please please, I don't mean to minimize what we have been through and continue to go through.
    There is no doubt that I have changed mentally and emotionally since my diagnose and surgery. I referred to it to a friend as a "brain toilet flush."
    I leak. I only have good sex with Cialis. I sweat at least a gallon more a day then before the surgery. But, my stress level is down. I certainly don't go off the handle like pre-PC.
    But I still feel guilty at times. I'm just sayin'

    On a lighter note, I've suffered from smallcox all my life and since the surgery my testicles hang lower than my joint. Go figure.
  • gkoper
    gkoper Member Posts: 173
    gumbyrun said:

    guilt
    On the other end of the spectrum...
    I believe this site is about about personal sharing and healing so here goes.
    I remember walking through the parking garage into the Cancer Center at Allegheny General in Pitt for my first appointment with the surgical urologist. A few cars passed us by and I saw a mom in one car and a 20-something in the next, both wearing head scarves over presumably hairless heads from chemo. I said to my wife, Becky, "I don't belong here...I'm not sick enough. I haven't paid my dues. " I didn't mean to imply that I lived a righteous life, etc., but that I sort of felt, and continue to feel, that I am sort of in the minor league of cancers. Please please please, I don't mean to minimize what we have been through and continue to go through.
    There is no doubt that I have changed mentally and emotionally since my diagnose and surgery. I referred to it to a friend as a "brain toilet flush."
    I leak. I only have good sex with Cialis. I sweat at least a gallon more a day then before the surgery. But, my stress level is down. I certainly don't go off the handle like pre-PC.
    But I still feel guilty at times. I'm just sayin'

    On a lighter note, I've suffered from smallcox all my life and since the surgery my testicles hang lower than my joint. Go figure.

    Smallcox
    Gumbyrun, I got a chuckle from the last sentence of your post. We can't lose our sense of humor.
    Myself-----after surgery & radiation---I went from a 9mm to a BB gun.
  • Trew
    Trew Member Posts: 931 Member
    gkoper said:

    Smallcox
    Gumbyrun, I got a chuckle from the last sentence of your post. We can't lose our sense of humor.
    Myself-----after surgery & radiation---I went from a 9mm to a BB gun.

    Small What??
    At my first uro's office I only saw the PA after surgery. "He" would tell me it was only my imagination. "He" was one of the reasons i quit that doctor. And size has changed since surgery, hormone shots and radiation. I have this picture of todays procedure- evryone one in the OR room will be a female- I know the doctor is. And it is a bit embrassing. But I am basic a eunuch now, anyway, so what is the fuss about? (soft crying sounds........)

    I do appreciate the candid commentary today.

    And there is always someone worse off, that is true. It doens't diminish the fact that those with PC have a life changing experience, too, that hangs over our heads forever. Right now we don't look like the worst cases of ca- but we have the germ and further on down the line we could be the worst cases, too. I have seen end stage PCa and its not pretty.
    Its as hard and any cancer out there.