Didn't think i would be here but here I am

lewvino
lewvino Member Posts: 1,010
edited March 2014 in Prostate Cancer #1
Well I knew I would face this at some point in my life just not at 54. My dad was diagnosed with Prostate cancer at age 67 back in 1997 (still with us). A routine physical, elevated PSA 4.2 followed by another one 1 week later at 4.6. Dr. recommended biopsys to rule out cancer, not to rule it in. 5 of the 12 samples came back with Cancer all Gleason 7's with the majority being 4+3. Also signs of pernirual invasion. Yuck.

So now I have been exploring my options for the past month. Looked at my dads treatment which was Proton Treatment at Loma Linda California. So far I have been Greatly dissapointed in the way they are dealing with me.

Visited a Seed Implant/Radiation Dr. in atlanta that does some procedure called Prostercision.

Next on June 8th I visit a Dr. Joseph Smith at Vanderbilt in Nasvhille to discuss Robotic surgery and then will make up my mind.

Does any one have experience with either Dr. Smith or with the Robot?

I'm not scared of death but very afraid of the sexual impotence issue I read so much about. I've been going through highs and some very low lows of depresion the last one lasted 3 days. I talk to my spouse but dos she really understand all of these 'weird thoughts' and feelings?

Larry (lewvino)
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Comments

  • rogermoore
    rogermoore Member Posts: 264
    Didn't think I would be here
    Dear Lew,

    I'm sorry to learn you have become a member of the club no one wants to belong to. However, you will find this site to be invaluable in receiving input of actual experiences of men going through the same thing you are.

    I cannot say enough about the professionalism of Dr. Smith and his staff at Vanderbilt. When diagnosed, I asked my local surgeon who he would recommend I go to for a second opinion. He recommended Dr. Smith, who impressed me so much I elected to have him perform the surgery. That was in 2001 and I was 58 yrs old.

    At the time Robotics had not been fully developed and I had the option of "open" which Dr. Smith performed or "arthroscopic". I opted to allow Dr Smith to use the open method and have never regretted my decision. I was "extremely" concerned about nerve-sparing and expressed that to Dr. Smith. He did not disappoint me. My wife and I feel one of the luckiest things that has happened in our lives was that we were led to and, chose to have Dr. Smith do my surgery. His abilities far exceed his credentials

    If you would like to talk to me personally feel free to e-mail me at this site.

    Roger

    P.S. From what I have heard and read the Robotic surgery is now considered the "Gold Std"

    .
  • lewvino
    lewvino Member Posts: 1,010

    Didn't think I would be here
    Dear Lew,

    I'm sorry to learn you have become a member of the club no one wants to belong to. However, you will find this site to be invaluable in receiving input of actual experiences of men going through the same thing you are.

    I cannot say enough about the professionalism of Dr. Smith and his staff at Vanderbilt. When diagnosed, I asked my local surgeon who he would recommend I go to for a second opinion. He recommended Dr. Smith, who impressed me so much I elected to have him perform the surgery. That was in 2001 and I was 58 yrs old.

    At the time Robotics had not been fully developed and I had the option of "open" which Dr. Smith performed or "arthroscopic". I opted to allow Dr Smith to use the open method and have never regretted my decision. I was "extremely" concerned about nerve-sparing and expressed that to Dr. Smith. He did not disappoint me. My wife and I feel one of the luckiest things that has happened in our lives was that we were led to and, chose to have Dr. Smith do my surgery. His abilities far exceed his credentials

    If you would like to talk to me personally feel free to e-mail me at this site.

    Roger

    P.S. From what I have heard and read the Robotic surgery is now considered the "Gold Std"

    .

    Thought back to Roger
    I have heard many great things about Dr. Smith and am leaning towards the robot with Dr. Smith at the controls. I actually talked to a lady today in person whose mother was treated by Dr. Smith for Bladder Cancer. Her cancer eventually spread to her lungs and she passed away. But I was told that when Dr. Smith heard this news he took the time to personally write a handwritten note to the family expresssing his condolences.

    Even when I visit the Dr. in Atlanta a week ago I told him I would not make up my mind until after going to Nashville on June 8th. He asked "Are you going to see Dr. Smith at Vanderbilt?" When I replied yes, his next comment once "He is one of the best please give him my regards."

    A personal question for you Roger, It appears in your picture that you are in snow? Do you ski? I love to ski and was curious if you would have problems with urinary continence while skiing. I'm not talking about immediately but say 1 or 2 years down the road.
    Larry
  • rogermoore
    rogermoore Member Posts: 264
    lewvino said:

    Thought back to Roger
    I have heard many great things about Dr. Smith and am leaning towards the robot with Dr. Smith at the controls. I actually talked to a lady today in person whose mother was treated by Dr. Smith for Bladder Cancer. Her cancer eventually spread to her lungs and she passed away. But I was told that when Dr. Smith heard this news he took the time to personally write a handwritten note to the family expresssing his condolences.

    Even when I visit the Dr. in Atlanta a week ago I told him I would not make up my mind until after going to Nashville on June 8th. He asked "Are you going to see Dr. Smith at Vanderbilt?" When I replied yes, his next comment once "He is one of the best please give him my regards."

    A personal question for you Roger, It appears in your picture that you are in snow? Do you ski? I love to ski and was curious if you would have problems with urinary continence while skiing. I'm not talking about immediately but say 1 or 2 years down the road.
    Larry

    Lew,

    Yes, snow-skiing is my passion. Even though I live in MS, whenever possible I try to make a trip west to either Colorado or Utah.

    Incontinence has never been an issue for me since about the 3rd week following surgery. I had a few dribbles requiring "light days' pads on my undershorts for a couple of months. Within 6-8 weeks I was essentially dry. I must mention that prior to, and following surgery, I religiously practiced "kegel" exercises. To a point that they were natural. This is the training of your abdominal muscles to assume the control function of relieving your urine that the prostate normally performs.

    Also, and Dr. Smith will tell you this, each case is different! I was extremely fortunate and have been able to resume all my pre-surgery activities. ED has never been a problem since surgery for me.

    I hope I have set your mind a little at ease. I know you are apprehensive, but keep a positive attitude and select a surgeon, and procedure you are totally comfortable with and let God handle the rest.

    If you have any more questions don't hesitate to give me a call.

    Roger
  • lion1
    lion1 Member Posts: 241
    Just some perspective
    lewvino,

    When I was diagnosed at 46---I found a great doctor--did an LRP and got the cancer all out--3yrs later cancer free---sex life fairly normal----however, I have been incontinent ever since. I bring this up because I noticed in your post that you where concered at 54 about ED. I'll tell you when your surgeon does the nerve sparing surgery, you have a great chance of having good sex again--but it may take some time---be patience. Howvever, I wish I had paid more attention to the incontinence aspect---I didn't--I just wanted the cancer out and wanted to get back to having great sex--my mistake. I never even thought incontinence would be a factor. I should have learned all I could about incontinence and based my research and decisions on that. Someone told me recently, sonething I never thought of----you pee all the time---everyday---night and day----but you don't have sex everyday, even though you think about it everyday. I'm sure you see my point.

    So, although there's no guarantees, ask your surgeon how many of his patients suffer from incontinence 6 months after surgery----1yr-----2yrs----3yrs-----God Bless.

    Lion1
  • lewvino
    lewvino Member Posts: 1,010
    lion1 said:

    Just some perspective
    lewvino,

    When I was diagnosed at 46---I found a great doctor--did an LRP and got the cancer all out--3yrs later cancer free---sex life fairly normal----however, I have been incontinent ever since. I bring this up because I noticed in your post that you where concered at 54 about ED. I'll tell you when your surgeon does the nerve sparing surgery, you have a great chance of having good sex again--but it may take some time---be patience. Howvever, I wish I had paid more attention to the incontinence aspect---I didn't--I just wanted the cancer out and wanted to get back to having great sex--my mistake. I never even thought incontinence would be a factor. I should have learned all I could about incontinence and based my research and decisions on that. Someone told me recently, sonething I never thought of----you pee all the time---everyday---night and day----but you don't have sex everyday, even though you think about it everyday. I'm sure you see my point.

    So, although there's no guarantees, ask your surgeon how many of his patients suffer from incontinence 6 months after surgery----1yr-----2yrs----3yrs-----God Bless.

    Lion1

    Thought back to Lion1
    Don't get me wrong, I am also concerned about the incontinence but its not been in my mind as much as sex, I have actually read about the kegel exercises and have started doing them even though I haven't picked a treatment yet. I will follow your advice though and read some more about that aspect since I've been doing tons of research.

    Larry
  • lewvino
    lewvino Member Posts: 1,010

    Lew,

    Yes, snow-skiing is my passion. Even though I live in MS, whenever possible I try to make a trip west to either Colorado or Utah.

    Incontinence has never been an issue for me since about the 3rd week following surgery. I had a few dribbles requiring "light days' pads on my undershorts for a couple of months. Within 6-8 weeks I was essentially dry. I must mention that prior to, and following surgery, I religiously practiced "kegel" exercises. To a point that they were natural. This is the training of your abdominal muscles to assume the control function of relieving your urine that the prostate normally performs.

    Also, and Dr. Smith will tell you this, each case is different! I was extremely fortunate and have been able to resume all my pre-surgery activities. ED has never been a problem since surgery for me.

    I hope I have set your mind a little at ease. I know you are apprehensive, but keep a positive attitude and select a surgeon, and procedure you are totally comfortable with and let God handle the rest.

    If you have any more questions don't hesitate to give me a call.

    Roger

    I know that each case is different but hoping for the best when I make my treatment decision. I am very strongly leaning towards Dr. Smith at Vanderbilt. I have heard so many good things about him. Just wish June 8th would get here sooner.

    You are probably a better skier then I am. I didn't take up skiing until age 50. My wife's sister lives in Vermont so got tired of watching the kids ski and setting at the lodge so decided to take a lessson and loved it. I only ski green and blues due to my knees. We have skied several resorts in Vermont but Love the skiing Out west. Have been to Copper, Winter Park, Steam Boat Springs and Beckenridge in Colorado. Also have been to Several in Utah around Salt Lake city and out to Mt. Baker in Washington State.

    Again thanks for your thoughts back and happy ski days next winter!

    Larry
  • RRMCJIM
    RRMCJIM Member Posts: 149
    lewvino said:

    Thought back to Lion1
    Don't get me wrong, I am also concerned about the incontinence but its not been in my mind as much as sex, I have actually read about the kegel exercises and have started doing them even though I haven't picked a treatment yet. I will follow your advice though and read some more about that aspect since I've been doing tons of research.

    Larry

    sorry to welcome you
    Sorry to hear you had to join our club. I just had my surgery date Friday 22. Am home now getting ready for the next step. I was more focused on the incontinence issue with my surgeon. I had learned so much about nerve sparing with Di Vinci, and thru my surgeon, That that is the golden standard. So I learned all I could about the other. Keep doing research, it will come in handy. I also am 54, very active, etc...
    Best of luck to you larry
    Jim
  • rogermoore
    rogermoore Member Posts: 264
    lewvino said:

    I know that each case is different but hoping for the best when I make my treatment decision. I am very strongly leaning towards Dr. Smith at Vanderbilt. I have heard so many good things about him. Just wish June 8th would get here sooner.

    You are probably a better skier then I am. I didn't take up skiing until age 50. My wife's sister lives in Vermont so got tired of watching the kids ski and setting at the lodge so decided to take a lessson and loved it. I only ski green and blues due to my knees. We have skied several resorts in Vermont but Love the skiing Out west. Have been to Copper, Winter Park, Steam Boat Springs and Beckenridge in Colorado. Also have been to Several in Utah around Salt Lake city and out to Mt. Baker in Washington State.

    Again thanks for your thoughts back and happy ski days next winter!

    Larry

    Follow-up
    Larry,

    Talk about ironies, I had not visited this discussion board for several weeks and choose to do so within a couple of hours following your posting. Also, I was the same age when I was diagnosed and the fact you are considering the same surgeon I used. Then, the snow-skiing!!
    Next thing you know I will find out you are my neighbor! lol.

    Anyway, I have skied Snowbird, Park City, Brighton, Solitude, Alta, SnowBasin, Powder Mtn. Park West, Deer Valley, and Sundance in Utah. In Colorado I have skied Vail, Copper, Winter Park, Breckenridge, Keystone, Loveland, Arapahoe Basin, and Steamboat Springs. Skiing is my passion and I would throw away my golf clubs if I could ski anytime I wanted to.

    I just retired this last Feb 19 and my wife Susie (Breast Cancer survivor)and I plan on doing some camping in our 24' travel trailer, as soon as I get caught up on projects here at home.

    So much for my rambling on, just wanted to give you an insight on some of the ironies of your diagnosis.

    Good luck, my friend, keep me posted on your decisions.

    Roger
  • Mark58
    Mark58 Member Posts: 41
    Robotic Procedure
    I was also treated by Dr. Smith at Vanderbilt. My results were quite different. I have since had 39 radiation treatments and am now dreading harmone treatment as my PSA is rising again. I also have an implant for erections. My robotic procedure was 5 years ago (March 2004). I have not had any problems with incontenance. I imagine my cancer was already spread prior to the surgery, and he said the nerve sparing was successful after the surgery, but not from my point of view. I apologize for being so negative but the only good thing is no incontenance issues. He is however very professional and maybe I was on the lower end of his robotic learning curve. Good luck to you.
  • kreinholt
    kreinholt Member Posts: 35
    lewvino said:

    Thought back to Roger
    I have heard many great things about Dr. Smith and am leaning towards the robot with Dr. Smith at the controls. I actually talked to a lady today in person whose mother was treated by Dr. Smith for Bladder Cancer. Her cancer eventually spread to her lungs and she passed away. But I was told that when Dr. Smith heard this news he took the time to personally write a handwritten note to the family expresssing his condolences.

    Even when I visit the Dr. in Atlanta a week ago I told him I would not make up my mind until after going to Nashville on June 8th. He asked "Are you going to see Dr. Smith at Vanderbilt?" When I replied yes, his next comment once "He is one of the best please give him my regards."

    A personal question for you Roger, It appears in your picture that you are in snow? Do you ski? I love to ski and was curious if you would have problems with urinary continence while skiing. I'm not talking about immediately but say 1 or 2 years down the road.
    Larry

    Snowboarding and incontenance
    lewvino, I went to the dark side and am now a 48 yo snowboarder living in Salt Lake City, Utah. Being a local, I get up to the slopes any chance I can. I had my surgery on 5 March with a lot of good ski and boarding left to do. I could see the snow in the mountains from my living room. Two weeks after I had the catheter removed, I couldn't stand it any longer and had to take a chance to see how it would go. I went armed with many pads that day. I boarded for half a day and did a precautionary change of my pad once after a few runs, but probably could have gone longer. I think that I was so focused on my boarding, that I was not as aware of my leakage and ended up having a very enjoyable time that day. Needless to say, that gave me confidence to finish out the rest of the season. Now the season is over so I have till next winter to work on the incontenance. Good luck to you and keep everyone posted on your progress.
  • lewvino
    lewvino Member Posts: 1,010
    Mark58 said:

    Robotic Procedure
    I was also treated by Dr. Smith at Vanderbilt. My results were quite different. I have since had 39 radiation treatments and am now dreading harmone treatment as my PSA is rising again. I also have an implant for erections. My robotic procedure was 5 years ago (March 2004). I have not had any problems with incontenance. I imagine my cancer was already spread prior to the surgery, and he said the nerve sparing was successful after the surgery, but not from my point of view. I apologize for being so negative but the only good thing is no incontenance issues. He is however very professional and maybe I was on the lower end of his robotic learning curve. Good luck to you.

    Mark,
    So sorry to hear about your experience. Do you care to share with me what your Gleason numbers were if you recall from five years ago? I visited a radiation Dr. in Atlanta who told me based on the John Hopkins Partin Tables there is a 75% Chance that mine has spread into surronding soft tissue. So am curious what Dr. Smith will think and say.

    I understand there is a large learning curve on the robot but I don't think its the robotic procedure or even the doctor that 'cures you'. There are so many factors to consider as I'm sure you know. Though I would agree with you that your cancer had probably all ready started to spread. I can't imagine being told at 39 that you had prostate cancer. For me its been bad enough at age 54. I've read up on the implants for erections and have all ready decided if worse comes to worse that I would choose that somewhere down the road.

    Larry
  • lewvino
    lewvino Member Posts: 1,010
    RRMCJIM said:

    sorry to welcome you
    Sorry to hear you had to join our club. I just had my surgery date Friday 22. Am home now getting ready for the next step. I was more focused on the incontinence issue with my surgeon. I had learned so much about nerve sparing with Di Vinci, and thru my surgeon, That that is the golden standard. So I learned all I could about the other. Keep doing research, it will come in handy. I also am 54, very active, etc...
    Best of luck to you larry
    Jim

    Good luck on the next steps you mentioned. I have been reading your other posts under your profile. Since my Dad was diagnosed in his mid 60's that was when I assumed it would hit me. Not in my mid 50's. Oh well, my wife has been supportive and have some good friends that let me dump!

    larry
  • lewvino
    lewvino Member Posts: 1,010
    kreinholt said:

    Snowboarding and incontenance
    lewvino, I went to the dark side and am now a 48 yo snowboarder living in Salt Lake City, Utah. Being a local, I get up to the slopes any chance I can. I had my surgery on 5 March with a lot of good ski and boarding left to do. I could see the snow in the mountains from my living room. Two weeks after I had the catheter removed, I couldn't stand it any longer and had to take a chance to see how it would go. I went armed with many pads that day. I boarded for half a day and did a precautionary change of my pad once after a few runs, but probably could have gone longer. I think that I was so focused on my boarding, that I was not as aware of my leakage and ended up having a very enjoyable time that day. Needless to say, that gave me confidence to finish out the rest of the season. Now the season is over so I have till next winter to work on the incontenance. Good luck to you and keep everyone posted on your progress.

    snowboarding and incontenance
    I tried snowboarding lessons once, I might try again sometime but prefer the ski's since I didn't start learning till I was 50. We loved our trip to Utah for skiing about 3 years ago. I want to go back since I was still learning then and stuck to the green trails.
    Glad to hear that at least you didn't have much problem with the leakage. As you know you have so much gear on skiing or boarding, I was wondering about staying 'dry' and getting to the men's room in time if needed! I also have to wear knee braces when I ski do to bad knees but I will never give up skiing! My goal is to cash in on those discounts they give the old folks at some resorts! I think some let you ski for free if you are over 70 or something like that! Keep in touch and let me know how next season works for you since that will be my first season to try again after treatments.

    Larry
  • lewvino
    lewvino Member Posts: 1,010

    Lew,

    Yes, snow-skiing is my passion. Even though I live in MS, whenever possible I try to make a trip west to either Colorado or Utah.

    Incontinence has never been an issue for me since about the 3rd week following surgery. I had a few dribbles requiring "light days' pads on my undershorts for a couple of months. Within 6-8 weeks I was essentially dry. I must mention that prior to, and following surgery, I religiously practiced "kegel" exercises. To a point that they were natural. This is the training of your abdominal muscles to assume the control function of relieving your urine that the prostate normally performs.

    Also, and Dr. Smith will tell you this, each case is different! I was extremely fortunate and have been able to resume all my pre-surgery activities. ED has never been a problem since surgery for me.

    I hope I have set your mind a little at ease. I know you are apprehensive, but keep a positive attitude and select a surgeon, and procedure you are totally comfortable with and let God handle the rest.

    If you have any more questions don't hesitate to give me a call.

    Roger

    I have been practing the 'kegel' exercises also. Need to do more but at least I've started them. Glad things are working out good for you post treatment.
    Yes I knoticed the similarities with us and thought it was amazing you had replied since you were treated back in 2001 I believe it said.

    I live in the Chattanooga Tn area. So as you know No skiing around this. I've been to the few areas in NC. but after skiing out west it likes Ha, why waste the money in NC.

    Have fun with your travels.

    Larry
  • kreinholt
    kreinholt Member Posts: 35
    lewvino said:

    snowboarding and incontenance
    I tried snowboarding lessons once, I might try again sometime but prefer the ski's since I didn't start learning till I was 50. We loved our trip to Utah for skiing about 3 years ago. I want to go back since I was still learning then and stuck to the green trails.
    Glad to hear that at least you didn't have much problem with the leakage. As you know you have so much gear on skiing or boarding, I was wondering about staying 'dry' and getting to the men's room in time if needed! I also have to wear knee braces when I ski do to bad knees but I will never give up skiing! My goal is to cash in on those discounts they give the old folks at some resorts! I think some let you ski for free if you are over 70 or something like that! Keep in touch and let me know how next season works for you since that will be my first season to try again after treatments.

    Larry

    Snowboarding and incontenance
    Don't get me wrong, I didn't stay dry but it was not enough to keep me down. I would check occassionly when I got to the bottom where there was a restroom just to ensure that the pad was not getting close to leaking and if it did, I new it wouldn't be noticeable to anyone except me with the snow pants on, but that is why I did a precautionary change of my pad, to prevent that from happening.
  • 2ndBase
    2ndBase Member Posts: 220
    Treatment Options
    If there is a 75% chance the cancer has already spread, then surgery and its side effects can and should be avoided. I had Gleason of 9 and psa of 24 and was given a 50% chance to live 2 years in 2004. I had one shot of Lupron and a month later started 40 radiation treatments. That is the extent of my treatment other than for some pain. I have no incontinance issues at all. My biopsy last year showed no cancer left in the prostate so it is in the bones, ect. If cancer has spread out of the prostate there is NO reason to go through surgery and it should be avoided at all cost. I am a living example of this and if you want to talk about it call me @ 765-759-5841. I was 52 when given my dx.
  • lewvino
    lewvino Member Posts: 1,010
    2ndBase said:

    Treatment Options
    If there is a 75% chance the cancer has already spread, then surgery and its side effects can and should be avoided. I had Gleason of 9 and psa of 24 and was given a 50% chance to live 2 years in 2004. I had one shot of Lupron and a month later started 40 radiation treatments. That is the extent of my treatment other than for some pain. I have no incontinance issues at all. My biopsy last year showed no cancer left in the prostate so it is in the bones, ect. If cancer has spread out of the prostate there is NO reason to go through surgery and it should be avoided at all cost. I am a living example of this and if you want to talk about it call me @ 765-759-5841. I was 52 when given my dx.

    Thanks for the heads up. That is why I'm anxious to talk to this Dr. Vanderbilt to get the professional opionon on what he thinks.
    The Dr. In atlanta that does radiation and seed implants combo told me the 75% number on the spread. Though he also told me the Dr. I'm going to see June 8th is the Best.

    Larry
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    lewvino said:

    Thanks for the heads up. That is why I'm anxious to talk to this Dr. Vanderbilt to get the professional opionon on what he thinks.
    The Dr. In atlanta that does radiation and seed implants combo told me the 75% number on the spread. Though he also told me the Dr. I'm going to see June 8th is the Best.

    Larry

    mri and mrs
    good test to take to see if the cancer has spread outside the prostate. The MRS is considered investigational and not covered by insurance, but you will know where you stand
    Ira
  • Mark58
    Mark58 Member Posts: 41
    lewvino said:

    Mark,
    So sorry to hear about your experience. Do you care to share with me what your Gleason numbers were if you recall from five years ago? I visited a radiation Dr. in Atlanta who told me based on the John Hopkins Partin Tables there is a 75% Chance that mine has spread into surronding soft tissue. So am curious what Dr. Smith will think and say.

    I understand there is a large learning curve on the robot but I don't think its the robotic procedure or even the doctor that 'cures you'. There are so many factors to consider as I'm sure you know. Though I would agree with you that your cancer had probably all ready started to spread. I can't imagine being told at 39 that you had prostate cancer. For me its been bad enough at age 54. I've read up on the implants for erections and have all ready decided if worse comes to worse that I would choose that somewhere down the road.

    Larry

    Gleason Numbers
    Yes, I can remember my Gleason numbers. Pre surgery from the biopsy was 3+3=6. Post surgery pathology however was 4+3=7. That was a strong indicator that there might have been some spread. I was staged at T-3a which to me, is also an indicator that it was not caught as early as we had hoped. I wish the best of luck to you as you go down this rough and rocky road that none of us want to be on.
  • lwagner
    lwagner Member Posts: 5
    Didn't think i would be here but here I am
    Oh so many choices, I know where you are. I went through the same thing about 2 years ago and chose the robotic surgery. I was able to return to work after 2 weeks. The incontenence was not really a problem but too much coffee or caffene can really make life exciting. I learned to watch my coffee intake especially when traveling or any time I need to go several hours. On mine the tests during surgery showed spreading to the nerves so to clean up the cancer one set of nerves could not be spared. I tried several pills and ect but have found that the shots work. My PSA is still basicly zero so I am satisfied with the results and would do the same treatment today.