Health Scare Starting Right After Retirement

[RetireeRobert]

Don't know. Did this guy get your prior medical records when you signed up with him? If I were you and felt uncomfortable--like you obviously feel---I would find another urologist for a second look, and also to see how they function.

Ultra Lift (I presume same as Uro-lift) I have read about. It is a somewhat common procedure that can alleviate many of the problems men get as they age from BPH. Helps you pee better and more completely. I think there is a thread here on this forum somewhere just about Urolift! Whether you are at the point of needing something like that is another "medical" question. You could also ask this current urologist why he is recommending Ultra Lift at this time. What will it supposedly do for you. What are complications or side effects. And so on.

[lawman]

Quote:

Originally Posted by RetireeRobert Don't know. Did this guy get your prior medical records when you signed up with him? If I were you and felt uncomfortable--like you obviously feel---I would find another urologist for a second look, and also to see how they function. Ultra Lift (I presume same as Uro-lift) I have read about. It is a somewhat common procedure that can alleviate many of the problems men get as they age from BPH. Helps you pee better and more completely. I think there is a thread here on this forum somewhere just about Urolift! Whether you are at the point of needing something like that is another "medical" question. You could also ask this current urologist why he is recommending Ultra Lift at this time. What will it supposedly do for you. What are complications or side effects. And so on.

I should have said Urolift...This urologist never asked for my records..

[RetireeRobert]

Quote:

Originally Posted by lawman I should have said Urolift...This urologist never asked for my records..

Well, all that he is suggesting for you then seems to just be the way he operates (no pun intended) for any client of his. The fact he has no prior medical history for you and is suggesting all that anyway would make me uncomfortable too.

I think perhaps trying out some other urologists and their modus operandi is in order post haste. You could let this current guy try to explain the "whys" and "whats" for his suggestions, but not sure I would give him even that chance. I would look for someone I was comfortable with and who would explain his rationales for anything they proposed.

One of the best pieces of "medical" advice I ever got concerned our infant son. I went to a general practitioner for help trying to make sense of some different pieces of medical proposals we had gotten from specialists. The wise old Doc advised--"whatever they propose, push them, and prod them, and make them explain and justify what they are proposing. Do this until "you" are satisfied."

As non-specific and non-comital as that advice might sound, it actually made a lot of sense and helped us decide how to handle our situation. I should look that guy up if he is still around and thank him for that advice.

[Koolau]

Quote:

Originally Posted by RetireeRobert One of the best pieces of "medical" advice I ever got concerned our infant son. I went to a general practitioner for help trying to make sense of some different pieces of medical proposals we had gotten from specialists. The wise old Doc advised--"whatever they propose, push them, and prod them, and make them explain and justify what they are proposing. Do this until "you" are satisfied."

Good advice. I had an "impinged shoulder" (according to the x-ray and symptoms.) Doc (an ortho guy) said I can fix that up with surgery. I said "what about trying physical therapy first?" He said, "Well, okay, if you want to try that." The PT therapist took one look at my movements and "diagnosed" the issue herself. "Yep. You've got a Yuppie disease. You sit at a computer all day and the muscles that hold your scapulas in place are weakened. We'll strengthen those and you'll be okay in a month." I was okay in a month. YMMV

[lawman]

My days of being a passive patient are over..

[watchman3135]

In the video clip I posted on the first page, the Doctor said that 40% - 50% of men 50 and older have some prostate cancer but only 3.5% die from it. And if you have a higher than normal PSA that leads to a biopsy which then finds PC in other words "If you look, you find".

Active Surveillance was derived out of data that the medical industry has been over threating Gleason 6 or lower for decades yet I'm not sure there is a clear easy answer and I would never fault someone with Gleason 6 who wants more aggressive treatment such as a RP or Radiation. I'm almost two weeks into my diagnosis and still feel I want my prostate out so I can move on. The hardest part is hearing you have CANCER and you are not doing anything about it other than waiting if and when it turns into something more aggressive.

[NewEnglander]

Sorry for your diagnosis Watchman3135, my case is very similar to yours, I was 55 years old at my cancer diagnosis with similar numbers to you.

My father and two uncles passed away from Prostate cancer so I started watching my PSA many years ago. Each year as part of my annual physical I’d have the digital exam as well as a PSA test. For years it was in the 1.6-2.0 range then in 2017 when it increased to 3.0. Three months later it was 3.4 so we decided upon a biopsy. I tried to get an MRI and/or MRI guided Biopsy but my insurance would not cover it. I did the normal Biopsy which came back 2 of 12 cores positive 3+3= Gleason 6. After positive cancer diagnosis the insurance then approved an MRI. The MRI was done on the newest technology MRI machine which was installed just months before my appointment. The MRI saw nothing, PIRADS 1.

I spoke to multiple Urologists and Radiation oncologists from Yale and Sloan Kettering in NY. I looked into all of the options but decided on Robotic Prostatectomy with a doctor who had done over 3500 robotic prostatectomies using the DaVinci machine. This decision is not to be taken lightly as the odds for permanent side effects are more common that not. Erectile deficiency and incontinence issues in many if not most cases.
I didn’t like Active Surveillance. The two friends of mine who were on Active Surveillance both had to eventually get treatment so what was gained by waiting, at least in their cases?

During/after my surgery it was found that the cancer tumor was about 8-9mm and it was already outside the prostate wall. But luckily there were “no margins” in my case as the doctor cuts outside the prostate wall and everything was contained within the area he cut out. I was surprised at the finding; how could the MRI completely miss the tumor? but it did in my case.

I followed all the post op suggested recovery walking a minimum of 5 miles per day starting less than a week after surgery, doing kegel exercises daily. I took a medical leave from work for 12 weeks.

I’m happy with how things turned out for me. I’ve got no side effects at all and my PSA numbers remain at zero. During the healing process I did have some minor urinary leakage, what they call stress incontinence, but this went away after a couple of months.

I swear that I’m without the common side effects because of the skill of my surgeon but he says it’s because I’m in relatively good shape and followed all his instructions. Who knows maybe I was just lucky, at least so far.

My brother had not been checking his PSA numbers so at my urging and his girlfriends too he finally got his checked. Unfortunately, he found cancer too. He selected Proton Radiation therapy and so far, he’s had no side effects and no further PSA increases.

I’d suggest that you get 2nd, 3rd and maybe even 4th opinions with Drs from differing treatment options, read as much as you can then decide for yourself. I wish you well with whatever option you chose.

Although I was already planning on retiring my cancer diagnosis definitely helped push me to retire on 12/31/20. And my DW joined me retiring the same week! We are very happily retired and loving life.

[bmcgonig]

Quote:

Originally Posted by NewEnglander Sorry for your diagnosis Watchman3135, my case is very similar to yours, I was 55 years old at my cancer diagnosis with similar numbers to you. My father and two uncles passed away from Prostate cancer so I started watching my PSA many years ago. Each year as part of my annual physical I’d have the digital exam as well as a PSA test. For years it was in the 1.6-2.0 range then in 2017 when it increased to 3.0. Three months later it was 3.4 so we decided upon a biopsy. I tried to get an MRI and/or MRI guided Biopsy but my insurance would not cover it. I did the normal Biopsy which came back 2 of 12 cores positive 3+3= Gleason 6. After positive cancer diagnosis the insurance then approved an MRI. The MRI was done on the newest technology MRI machine which was installed just months before my appointment. The MRI saw nothing, PIRADS 1. I spoke to multiple Urologists and Radiation oncologists from Yale and Sloan Kettering in NY. I looked into all of the options but decided on Robotic Prostatectomy with a doctor who had done over 3500 robotic prostatectomies using the DaVinci machine. This decision is not to be taken lightly as the odds for permanent side effects are more common that not. Erectile deficiency and incontinence issues in many if not most cases. I didn’t like Active Surveillance. The two friends of mine who were on Active Surveillance both had to eventually get treatment so what was gained by waiting, at least in their cases? During/after my surgery it was found that the cancer tumor was about 8-9mm and it was already outside the prostate wall. But luckily there were “no margins” in my case as the doctor cuts outside the prostate wall and everything was contained within the area he cut out. I was surprised at the finding; how could the MRI completely miss the tumor? but it did in my case. I followed all the post op suggested recovery walking a minimum of 5 miles per day starting less than a week after surgery, doing kegel exercises daily. I took a medical leave from work for 12 weeks. I’m happy with how things turned out for me. I’ve got no side effects at all and my PSA numbers remain at zero. During the healing process I did have some minor urinary leakage, what they call stress incontinence, but this went away after a couple of months. I swear that I’m without the common side effects because of the skill of my surgeon but he says it’s because I’m in relatively good shape and followed all his instructions. Who knows maybe I was just lucky, at least so far. My brother had not been checking his PSA numbers so at my urging and his girlfriends too he finally got his checked. Unfortunately, he found cancer too. He selected Proton Radiation therapy and so far, he’s had no side effects and no further PSA increases. I’d suggest that you get 2nd, 3rd and maybe even 4th opinions with Drs from differing treatment options, read as much as you can then decide for yourself. I wish you well with whatever option you chose. Although I was already planning on retiring my cancer diagnosis definitely helped push me to retire on 12/31/20. And my DW joined me retiring the same week! We are very happily retired and loving life.

What a great story with a happy ending. Well done. Can you share the name of your surgeon?

[bmcgonig]

Quote:

Originally Posted by lawman Reading this makes my head spin..I am 65 years old and have had BPH for many years. Last time it was checked My p.s.a. was either 1.2 or 1.4. I used to have regular urologist that I would see every year of two just to be able to refill my alfuzosin prescription..He would check my prostate digitally and check my blood and tell me he would see me in a year. We moved last year and I had to find a new urologist. I went in for a routine visit and answered the standard questions about how often i pee and how many times I get up at night etc. etc. and he insisted I schedule all kinds of tests where i measure my pee, get a urodynamics test and and biopsy and ultrasound. He did this without so much as p.s.a. test or a digital exam..I was alarmed but began to schedule the tests. I completed most of the tests but stopped just before doing the biopsies. Last time i saw him he wanted to do an Ultra Lift.. They scheduled me for another visit in April..I have no idea what for. Does any of this sound right to you guys?

All those tests wouldn’t bother me except for the biopsy. You give no clues as to why he would order that. I’m assuming it’s a prostate biopsy? If so I’d definitely recommend a new urologist. You need to have some suspicion to order one of those. They’re incredibly invasive.

[watchman3135]

Quote:

Originally Posted by NewEnglander Sorry for your diagnosis Watchman3135, my case is very similar to yours, I was 55 years old at my cancer diagnosis with similar numbers to you. My father and two uncles passed away from Prostate cancer so I started watching my PSA many years ago. Each year as part of my annual physical I’d have the digital exam as well as a PSA test. For years it was in the 1.6-2.0 range then in 2017 when it increased to 3.0. Three months later it was 3.4 so we decided upon a biopsy. I tried to get an MRI and/or MRI guided Biopsy but my insurance would not cover it. I did the normal Biopsy which came back 2 of 12 cores positive 3+3= Gleason 6. After positive cancer diagnosis the insurance then approved an MRI. The MRI was done on the newest technology MRI machine which was installed just months before my appointment. The MRI saw nothing, PIRADS 1. I spoke to multiple Urologists and Radiation oncologists from Yale and Sloan Kettering in NY. I looked into all of the options but decided on Robotic Prostatectomy with a doctor who had done over 3500 robotic prostatectomies using the DaVinci machine. This decision is not to be taken lightly as the odds for permanent side effects are more common that not. Erectile deficiency and incontinence issues in many if not most cases. I didn’t like Active Surveillance. The two friends of mine who were on Active Surveillance both had to eventually get treatment so what was gained by waiting, at least in their cases? During/after my surgery it was found that the cancer tumor was about 8-9mm and it was already outside the prostate wall. But luckily there were “no margins” in my case as the doctor cuts outside the prostate wall and everything was contained within the area he cut out. I was surprised at the finding; how could the MRI completely miss the tumor? but it did in my case. I followed all the post op suggested recovery walking a minimum of 5 miles per day starting less than a week after surgery, doing kegel exercises daily. I took a medical leave from work for 12 weeks. I’m happy with how things turned out for me. I’ve got no side effects at all and my PSA numbers remain at zero. During the healing process I did have some minor urinary leakage, what they call stress incontinence, but this went away after a couple of months. I swear that I’m without the common side effects because of the skill of my surgeon but he says it’s because I’m in relatively good shape and followed all his instructions. Who knows maybe I was just lucky, at least so far. My brother had not been checking his PSA numbers so at my urging and his girlfriends too he finally got his checked. Unfortunately, he found cancer too. He selected Proton Radiation therapy and so far, he’s had no side effects and no further PSA increases. I’d suggest that you get 2nd, 3rd and maybe even 4th opinions with Drs from differing treatment options, read as much as you can then decide for yourself. I wish you well with whatever option you chose. Although I was already planning on retiring my cancer diagnosis definitely helped push me to retire on 12/31/20. And my DW joined me retiring the same week! We are very happily retired and loving life.

Thanks for sharing your story. I'm nearly two weeks into my diagnosis and active surveillance is consuming my thoughts with worry and I don't see myself going the distance even if there is no change and like you said, It would seem sooner or later that treatment would become necessary but I know most in the field would say that's not true with every case and I have heard of Gleason 6 men on year 12 with no changes.

Disappointingly I did tons of research prior to my first Urology visit knowing I would likely be pushed towards a TRUS biopsy and everything and everyone pointed to 3T Multi Parametric Prostate MRI as the first next step rather than a biopsy and if nothing is found, no biopsy was needed or if something was found, a targeted biopsy could be performed. Yet in Europe, a prostate MRI is the "Gold Standard" and a stopping point for avoiding further testing like a biopsy. Can't help but wonder if there will be higher incidences of men getting PC although the following year PSA will still be high in those men where the MRI showed nothing and should be raising red flags for further testing. I've also read that some PC's can hide from MRI. Maybe Europe will be soon adopting America's protocol of that a biopsy is still necessary even if MRI shows nothing.

My urologist assistant called last Thursday on a question I had and when she asked If I had any other questions I asked for the name of the Surgeon the Doctor recommend at my prior visit if I consider AS to much to deal with and she paused and said hold on. The Doctor got on the phone and when I told him I don't think I'll be able to do AS for long he assured me that it was the right treatment now and it doesn't mean we aren't doing nothing, etc...and followed up by saying "I would recommend this for his Father or other Family members if it were the same". We discussed re-reading the slides which were originally read in Chicago and he said he could send them to UCLA who they use when patient's recommend a second verification. Still waiting on that.

I have had a colonoscopy in the past which as you may know are given a twilight drug and lay on your side but never had full general anesthetic surgery which ironically is my biggest fear I have having life long mild COPD (though never smoked) and sleep apnea and I cannot breath while laying flat on my back. I know I will be closely monitored and a breathing tube would be placed down my throat so I will be assisted breathing but the fear is very high ironically more so than the possibility of ED and some incontinence if you can believe that.

[sengsational]

Watchman, You seem very well informed. Keeping motivated to continue to learn more in the face of the issue is no small task, and I commend you. I'm reading a couple of books by Dr. Eric Topal and he has mentioned "patients like me", where people discuss stuff like what's in this thread. I'm not sure what the community is like over there (never used it), but might be worth checking out.

[donheff]

The Prostate Cancer forum on Inspire.com is pretty good. There is a lengthy discussion on 3+3=6.

[watchman3135]

Quote:

Originally Posted by NewEnglander Sorry for your diagnosis Watchman3135, my case is very similar to yours, I was 55 years old at my cancer diagnosis with similar numbers to you. My father and two uncles passed away from Prostate cancer so I started watching my PSA many years ago. Each year as part of my annual physical I’d have the digital exam as well as a PSA test. For years it was in the 1.6-2.0 range then in 2017 when it increased to 3.0. Three months later it was 3.4 so we decided upon a biopsy. I tried to get an MRI and/or MRI guided Biopsy but my insurance would not cover it. I did the normal Biopsy which came back 2 of 12 cores positive 3+3= Gleason 6. After positive cancer diagnosis the insurance then approved an MRI. The MRI was done on the newest technology MRI machine which was installed just months before my appointment. The MRI saw nothing, PIRADS 1. I spoke to multiple Urologists and Radiation oncologists from Yale and Sloan Kettering in NY. I looked into all of the options but decided on Robotic Prostatectomy with a doctor who had done over 3500 robotic prostatectomies using the DaVinci machine. This decision is not to be taken lightly as the odds for permanent side effects are more common that not. Erectile deficiency and incontinence issues in many if not most cases. I didn’t like Active Surveillance. The two friends of mine who were on Active Surveillance both had to eventually get treatment so what was gained by waiting, at least in their cases? During/after my surgery it was found that the cancer tumor was about 8-9mm and it was already outside the prostate wall. But luckily there were “no margins” in my case as the doctor cuts outside the prostate wall and everything was contained within the area he cut out. I was surprised at the finding; how could the MRI completely miss the tumor? but it did in my case. I followed all the post op suggested recovery walking a minimum of 5 miles per day starting less than a week after surgery, doing kegel exercises daily. I took a medical leave from work for 12 weeks. I’m happy with how things turned out for me. I’ve got no side effects at all and my PSA numbers remain at zero. During the healing process I did have some minor urinary leakage, what they call stress incontinence, but this went away after a couple of months. I swear that I’m without the common side effects because of the skill of my surgeon but he says it’s because I’m in relatively good shape and followed all his instructions. Who knows maybe I was just lucky, at least so far. My brother had not been checking his PSA numbers so at my urging and his girlfriends too he finally got his checked. Unfortunately, he found cancer too. He selected Proton Radiation therapy and so far, he’s had no side effects and no further PSA increases. I’d suggest that you get 2nd, 3rd and maybe even 4th opinions with Drs from differing treatment options, read as much as you can then decide for yourself. I wish you well with whatever option you chose. Although I was already planning on retiring my cancer diagnosis definitely helped push me to retire on 12/31/20. And my DW joined me retiring the same week! We are very happily retired and loving life.

Did you do Active surveillance for any given amount of time before deciding on a RP?

[NewEnglander]

Quote:

Originally Posted by bmcgonig What a great story with a happy ending. Well done. Can you share the name of your surgeon?

Dr Joseph Wagner, Farmington CT
Works out of Hartford Hospital

[NewEnglander]

Quote:

Originally Posted by watchman3135 Did you do Active surveillance for any given amount of time before deciding on a RP?

No I didn't. I'm glad I didn't as it turned out the cancer was already outside the prostate. If I had gone on active surveillance I'm sure my PSA numbers would have continued to increase and my surgery would have just been delayed.

[watchman3135]

Quote:

Originally Posted by NewEnglander No I didn't. I'm glad I didn't as it turned out the cancer was already outside the prostate. If I had gone on active surveillance I'm sure my PSA numbers would have continued to increase and my surgery would have just been delayed.

I'm 2 weeks into my diagnosis and have pretty much decided Active Surveillance is not going to mentally work for me either based on your story even though the Urologist assures me it's what he'd recommend for his Dad. So I have pretty much decided on a RP and just need to find a good surgeon with lots of experience in the Chicago area.

I see the wait after a biopsy is about two months so I'll spend the time researching.

[Koolau]

Quote:

Originally Posted by watchman3135 I'm 2 weeks into my diagnosis and have pretty much decided Active Surveillance is not going to mentally work for me either based on your story even though the Urologist assures me it's what he'd recommend for his Dad. So I have pretty much decided on a RP and just need to find a good surgeon with lots of experience in the Chicago area. I see the wait after a biopsy is about two months so I'll spend the time researching.

I hope all goes well. I'm sure you know the community here is pulling for you.

[watchman3135]

Quote:

Originally Posted by Koolau I hope all goes well. I'm sure you know the community here is pulling for you.

Thanks. The support really helps.

[bmcgonig]

Quote:

Originally Posted by watchman3135 I'm 2 weeks into my diagnosis and have pretty much decided Active Surveillance is not going to mentally work for me either based on your story even though the Urologist assures me it's what he'd recommend for his Dad. So I have pretty much decided on a RP and just need to find a good surgeon with lots of experience in the Chicago area. I see the wait after a biopsy is about two months so I'll spend the time researching.

I remember listening to this podcast of Ted Sheaffer with Peter Attia. I think he’s one of the top in the country. And he’s professor at Northwestern. If I remember correctly he did Ben Stillers prostatectomy. He talks about saving nerves and how difficult it can be but gave me the impression at the time that he was good at it. It’s been a while since I listened to it though.

https://peterattiamd.com/tedschaeffer/

https://www.feinberg.northwestern.ed...html?xid=34261

[watchman3135]

Quote:

Originally Posted by bmcgonig I remember listening to this podcast of Ted Sheaffer with Peter Attia. I think he’s one of the top in the country. And he’s professor at Northwestern. If I remember correctly he did Ben Stillers prostatectomy. He talks about saving nerves and how difficult it can be but gave me the impression at the time that he was good at it. It’s been a while since I listened to it though. https://peterattiamd.com/tedschaeffer/ https://www.feinberg.northwestern.ed...html?xid=34261

I was thinking of going with Dr. David B. Samadi as he is well known in Robotic Prostatectomy's but being in Illinois that would involve travel with the dogs and finding a hotel that would allow them.

I sometimes forget Chicago also has top notch surgeons so thanks for mentioning that. I also just realized Dr. Schaeffer was the one who treated Ben Stiller.

https://www.youtube.com/watch?v=CPH8JuGu8cc&t=27s