Waiting For Surgery

ejn
ejn Member Posts: 64
edited March 2014 in Prostate Cancer #1
I am new here and find this site very interesting. I was diagnosed in April and went to my second opinion on 6/11. I just got a call from the scheduler and my surgery is scheduled for 8/11. All of this waiting is driving me crazy but reading the posts on this site have given me a very good idea of what I can expect during and after the procedure (DaVinci) which is VERY helpful. I am so glad I found this site and I have actually read every post and response here. I plan to keep on board through it all. Thanks to all.

Ed
«13

Comments

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Welcome Ed
    But we all wish you did not have to be here....You will find many very knowledgeable people here that have been through what your about to so ask away and we will see if we can help. What were your biopsy stats?

    Randy in Indy
  • ejn
    ejn Member Posts: 64

    Welcome Ed
    But we all wish you did not have to be here....You will find many very knowledgeable people here that have been through what your about to so ask away and we will see if we can help. What were your biopsy stats?

    Randy in Indy

    Thanks Randy
    My first biopsy was 2 years ago and I am not sure the exact number but it was a low 5 PSA. The first came back negative but my doc said that doesnt mean it's not there. I went back in April (PSA about the same) and he put me out and took 36 samples. There were 3 positives 1%, 2%, 2% and a Gleason 6. I went to the 2nd opinion and now have surgery scheduled for 8/11. Sorry I dont have exact numbers right now, I am actually at work now. One of the questions that I really have in my mind is how much work can I expect to miss. I know that is something that cannot really be answered since everyone is different. I do have a desk job so that might help.

    Ed
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    ejn said:

    Thanks Randy
    My first biopsy was 2 years ago and I am not sure the exact number but it was a low 5 PSA. The first came back negative but my doc said that doesnt mean it's not there. I went back in April (PSA about the same) and he put me out and took 36 samples. There were 3 positives 1%, 2%, 2% and a Gleason 6. I went to the 2nd opinion and now have surgery scheduled for 8/11. Sorry I dont have exact numbers right now, I am actually at work now. One of the questions that I really have in my mind is how much work can I expect to miss. I know that is something that cannot really be answered since everyone is different. I do have a desk job so that might help.

    Ed

    Ed
    I work from home as I am as we type and I was at my desk pajamas and cath bag following on the 6 day from surgery. If I had to go into an office I would say the earliest you would feel like going is about 14 days out...but most places have to give you 6 weeks off if you need it. My employer was putting me on short term disability and I had the Doc/hostpital tell them to put me on half days for two weeks that way I could kinda work when I wanted and lay around when needed or go out and play also. We had a sales meeting I attended via telephone and gave a presentation on my Regions business instead of driving into the office. I was fully mobile with cath bag the second week driving around for errands (I had to keep my cath in an extra 6 days because they found a leak on day 7 when I went to get it pulled) Not sure you are supposed to drive with a cath bag on but did it anyway had things to do and places to go.

    Hope this helps.
  • ejn
    ejn Member Posts: 64

    Ed
    I work from home as I am as we type and I was at my desk pajamas and cath bag following on the 6 day from surgery. If I had to go into an office I would say the earliest you would feel like going is about 14 days out...but most places have to give you 6 weeks off if you need it. My employer was putting me on short term disability and I had the Doc/hostpital tell them to put me on half days for two weeks that way I could kinda work when I wanted and lay around when needed or go out and play also. We had a sales meeting I attended via telephone and gave a presentation on my Regions business instead of driving into the office. I was fully mobile with cath bag the second week driving around for errands (I had to keep my cath in an extra 6 days because they found a leak on day 7 when I went to get it pulled) Not sure you are supposed to drive with a cath bag on but did it anyway had things to do and places to go.

    Hope this helps.

    Vacation Time
    Yes this does help. I am actually going to take vacation time for sugery so I will get paid while I am off. I do have the ability to log in from home and work which will also help. I am hopeful to get the cath out in a week as the doctor stated but I guess that can vary also. I did get the CT results yesterday and they said it all looks good and negative which makes feel a little better.

    Thanks
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    ejn said:

    Vacation Time
    Yes this does help. I am actually going to take vacation time for sugery so I will get paid while I am off. I do have the ability to log in from home and work which will also help. I am hopeful to get the cath out in a week as the doctor stated but I guess that can vary also. I did get the CT results yesterday and they said it all looks good and negative which makes feel a little better.

    Thanks

    You have very little involvement (from the biopsy)
    This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

    Randy in Indy
  • ejn
    ejn Member Posts: 64

    You have very little involvement (from the biopsy)
    This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

    Randy in Indy

    100's
    He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.
  • ejn
    ejn Member Posts: 64

    You have very little involvement (from the biopsy)
    This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

    Randy in Indy

    100's
    He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.
  • ejn
    ejn Member Posts: 64

    You have very little involvement (from the biopsy)
    This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

    Randy in Indy

    100's
    He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.
  • lewvino
    lewvino Member Posts: 1,010
    Ed, Wishing you the best on
    Ed, Wishing you the best on this journey! I had my Davinci on 8/15 and was very happy with my choice. Hoping you can take over my spot in the 0 club and hoping that I can get back in at some point in time.

    Larry
    age 55

    Davinci 8/15/2009

    Gleason 7 (3+4)
    Stage T2B
    PSA 5.3 pre surgery
    Cancer - 20% prostate involved
    One positive margin noted in Right Apex
    3 month PSA 0
    6 month PSA 0
    10 month PSA .1
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    ejn said:

    100's
    He had a very impressive power point presentation with all of the stats allthough I cant recall any exact numbers right now. I do know a couple of people that have used him also with good results. I am in the St Louis area and getting DaVinci. I do have confidence in my choice and I see that as a positive.

    Hi Ed,
    A few comments and direct questions.

    It's a good idea to have a second opinion on your biopsy results, and send the parrifin blocks to an expert in the field.

    How old are you, and what is your general health.

    Randy gave you a very good suggestion to have an MRI with a spectrocopy.

    What is your surgeons name, and how many surgeries did he perform.

    Ira

    Active Surveillance
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0


    Here are some results of Lawernce Klotz,MD, well respected
    new
    active sureilance expert

    protocol:

    PSA and DRE every 3 months
    Prostate ultrasound every 12 months
    Repeat biopsy at month 12 and 36

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment(eventhough they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer

    ---------------------------------------------------
    Analysis of Bill Axelson by Lawernce Klotz, MD
    Journal of clinical Onchology 2005

    . lower gleason
    . less than 1/3 cores and none >50%
    . PSA < 10 and not rising
    . PSA density < 0.15
    . no palpable diesease
    . early treatment for any progression

    FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE




    What types of treatment(s) have occurred?
    In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.

    There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

    But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

    I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

    -----------------
    MRI

    There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

    The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

    The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

    The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    You have very little involvement (from the biopsy)
    This is a good thing...however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report. You are still at such a low invlolvement with extensive biopsy (36 samples) that I would expect a very good outcome with whatever treatment you choose. This beast is very peculiar though and has a mind of it's own. Did you consider getting an MRI with coil or spectroscopy...a test that can tell if the cancer is contained within the gland particularly when you have a palpaple nodgel. (tumor) You probably don't though.... Where and who is doing your DaVinci - how many has he done? What are his statistics with incontience and ED? These are all questions you might want to ask him prior to making a final determination of using him.

    Randy in Indy

    Hi Randy,
    I wonder , can you give a reference for your comment " however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report"..........Thanks......Ira
  • chitown
    chitown Member Posts: 90 Member
    surgery experience
    ed - i have posted my 6/15surgery experience and may be helpful. Also during the 3 month wait for mu surgery, I had followed a mental and physical regimen that I had learned from this forum and other sources. Some of it worked for me and some did not. Be happy to any questions from my experience
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Hi Randy,
    I wonder , can you give a reference for your comment " however most often based on my research (roughly 2/3 of the time) the involvment and grading (aggressiveness of cancer) is upgraded in the Post Op path report"..........Thanks......Ira

    Ira
    I questioned at length DR, Koch of Indiana University on this very topic who has done a mirad of studies with Joseph Smith of Vanderbit University - go to vanderbilt University prostate studies with Joe Smith and find huge volumes of studies they compiled while Koch was learning with Smith at Vanderbilt. His take was that most often and the percentage he used is 2/3 rds of the pathology reports after surgery have upgraded the grade of cancer...that is why I am so concerned about you and always have been with the active survellance. Just from my own experience of knowing the people on here that had surgery most have been upgraded. I was I believe Jesse was, and many more. He said about 20 % stay the same and the rest are actually downgraded..but the overwhelming majority are always upgraded.

    hope this helps. Randy
  • Kongo
    Kongo Member Posts: 1,166 Member

    Ira
    I questioned at length DR, Koch of Indiana University on this very topic who has done a mirad of studies with Joseph Smith of Vanderbit University - go to vanderbilt University prostate studies with Joe Smith and find huge volumes of studies they compiled while Koch was learning with Smith at Vanderbilt. His take was that most often and the percentage he used is 2/3 rds of the pathology reports after surgery have upgraded the grade of cancer...that is why I am so concerned about you and always have been with the active survellance. Just from my own experience of knowing the people on here that had surgery most have been upgraded. I was I believe Jesse was, and many more. He said about 20 % stay the same and the rest are actually downgraded..but the overwhelming majority are always upgraded.

    hope this helps. Randy

    Upgrades
    I have read that studies show a bit lower percentage...about 50% are upgraded but the point is still the same. A lot of pathologies are apparently more extensive than the standard biopsy cores show and tend to have more aggressive forms. All the more reason, in my opinion, to take a treatment step while the cancer is in it's earliest stages where it has the best chance of cure from either radiation or surgery. But I do know Ira's logic and he tracks it closely.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Kongo said:

    Upgrades
    I have read that studies show a bit lower percentage...about 50% are upgraded but the point is still the same. A lot of pathologies are apparently more extensive than the standard biopsy cores show and tend to have more aggressive forms. All the more reason, in my opinion, to take a treatment step while the cancer is in it's earliest stages where it has the best chance of cure from either radiation or surgery. But I do know Ira's logic and he tracks it closely.

    Ira has his method down
    I am convinced he is as concerned as us if not more about the cancer in his body...and I trust he is doing the right thing with his choosen path...I just finished a chapter in the book Maria gave me about how over diagnosis is very much a reality and possible which leads to unessassary treatment ....mine was a much different case - palpable nodgel...in fact since I had the heredity for it with my father having it I am now warning my older brother who probably has a 50% or greater chance he will have it...as a result he's taking yearly PSA's and knows his reading and has actually been doing it for about the last 7 or 8 years.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Ira has his method down
    I am convinced he is as concerned as us if not more about the cancer in his body...and I trust he is doing the right thing with his choosen path...I just finished a chapter in the book Maria gave me about how over diagnosis is very much a reality and possible which leads to unessassary treatment ....mine was a much different case - palpable nodgel...in fact since I had the heredity for it with my father having it I am now warning my older brother who probably has a 50% or greater chance he will have it...as a result he's taking yearly PSA's and knows his reading and has actually been doing it for about the last 7 or 8 years.

    Doing some thinking
    Trying to put thngs together

    The Klotz test comes up with this information,

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment(eventhough they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer
    --------------------------------------------------------
    As stated by Randy and Kongo, upgrading for the aggressiveness of the cancer for those having surgery is somewhere between 1/2 and 2/3.......now not all of those having surgery are candidates for active surveilance with low numbers........maybe those with more involvement or higher gleason will tend to have upgraded cancer aggressiveness.

    Also it seems that the Klotz study is pretty inclusive of all.....( of course the aggressiveness of individual cancer aggressiveness are not broken out)

    I guess there is a lot of room for thought.

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Ira has his method down
    I am convinced he is as concerned as us if not more about the cancer in his body...and I trust he is doing the right thing with his choosen path...I just finished a chapter in the book Maria gave me about how over diagnosis is very much a reality and possible which leads to unessassary treatment ....mine was a much different case - palpable nodgel...in fact since I had the heredity for it with my father having it I am now warning my older brother who probably has a 50% or greater chance he will have it...as a result he's taking yearly PSA's and knows his reading and has actually been doing it for about the last 7 or 8 years.

    Avodart
    What is are some opinions on Avodart for those who are high risk, but have not been diagnosed, like Randy brother and our some of our brothers.
  • ejn
    ejn Member Posts: 64
    chitown said:

    surgery experience
    ed - i have posted my 6/15surgery experience and may be helpful. Also during the 3 month wait for mu surgery, I had followed a mental and physical regimen that I had learned from this forum and other sources. Some of it worked for me and some did not. Be happy to any questions from my experience

    Chitown, I read your post and it sounds like all is going well for you. Like you, the wait is driving me crazy. I am 53 and active but I am not on any exercise program at this time. It sounds like your physical condition is contributing greatly to your recovery and if my wife reads any of this I am sure I will be exercising as soon as I get home tonight. Please keep us posted on the recovery.

    Ed
  • ejn
    ejn Member Posts: 64

    Hi Ed,
    A few comments and direct questions.

    It's a good idea to have a second opinion on your biopsy results, and send the parrifin blocks to an expert in the field.

    How old are you, and what is your general health.

    Randy gave you a very good suggestion to have an MRI with a spectrocopy.

    What is your surgeons name, and how many surgeries did he perform.

    Ira

    Active Surveillance
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0


    Here are some results of Lawernce Klotz,MD, well respected
    new
    active sureilance expert

    protocol:

    PSA and DRE every 3 months
    Prostate ultrasound every 12 months
    Repeat biopsy at month 12 and 36

    After 8 years:

    - 55% remain untreated with stable disease

    - 36% decided to have treatment(eventhough they did not have progression)

    - 9% treated with surgery or radiation for increase in psa or gleason score

    - none have metastatic disease
    < 1% men died of prostate cancer

    ---------------------------------------------------
    Analysis of Bill Axelson by Lawernce Klotz, MD
    Journal of clinical Onchology 2005

    . lower gleason
    . less than 1/3 cores and none >50%
    . PSA < 10 and not rising
    . PSA density < 0.15
    . no palpable diesease
    . early treatment for any progression

    FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE




    What types of treatment(s) have occurred?
    In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.

    There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

    But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

    I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

    -----------------
    MRI

    There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

    The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

    The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

    The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease

    Hopeful
    I am 53 and in decent shape but I have recently lost 20lbs and I have no idea why. Although I could stand to lose a few more I am certainly not trying or dieting. I did consider active surviellance but at my age I decided surgery was best for me and the thought of this inside of me and doing nothing about it just did not work for me. I do believe that if I was 10 years older I would have not opted surgery though. Sometimes all of this just gets so overwhelming and confusing and this site has helped me greatly.

    Thanks to All,

    Ed
  • ejn
    ejn Member Posts: 64
    lewvino said:

    Ed, Wishing you the best on
    Ed, Wishing you the best on this journey! I had my Davinci on 8/15 and was very happy with my choice. Hoping you can take over my spot in the 0 club and hoping that I can get back in at some point in time.

    Larry
    age 55

    Davinci 8/15/2009

    Gleason 7 (3+4)
    Stage T2B
    PSA 5.3 pre surgery
    Cancer - 20% prostate involved
    One positive margin noted in Right Apex
    3 month PSA 0
    6 month PSA 0
    10 month PSA .1

    Thanks Larry
    I am very hopeful to join the ZERO club, but I do believe your spot will be open and waiting for you to get back. My DaVinci will be on 8/11 so it will be a bit before I can get in.

    Thanks, Ed