Making Decisions Regarding Surgery

pwright613
pwright613 Member Posts: 2
edited March 2014 in Prostate Cancer #1
TO EVERYONE OUT THERE, BEFORE YOU MAKE A DECISION TO DO SURGERY FOR PROSTATE CANCER THINK VERY VERY VERY VERY LONG AND HARD before you proceed. The quality of your like will be significantly down graded. TAKE IT FROM ME I am not speculating, I am stating a fact,this is a bad decision and if I had this insight that I am now proving I would not opt for surgery. I know it IS A bad DECISION. That was my decision and I think it was a terrible decision all because I bought into the hipe and I am yet to see any of the benefit. The hipe about robotic surgery is complete non-sence. I personally did not benefit from any of the benefit described.
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Comments

  • Trew
    Trew Member Posts: 932 Member
    Wish you had given us a
    Wish you had given us a little more background to your case. Personally, I am not a big fan of surgery any more, either. That is also after the fact.


    A lower gleason and proton therapy would have been my preferred route.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    pwright613
    Sorry to hear you had a bad experience with surgery. Many do not have a bad experience me for one. Most often it has a ton to do with the experience and skill of the surgeon....also at what stage you are with the desease. Can you give some further information...here's mine:

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores
    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%
    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
    da Vinci 12/29/09 - Dr. Hollensbee & Scott
    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
    Virtually Pad free 2-20-10
    Next PSA scheduled for 5-26 Results 6-2-10
    Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
    Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery had usable erections. Currently only need ¼ pill to get usable .
  • mrshisname
    mrshisname Member Posts: 186

    pwright613
    Sorry to hear you had a bad experience with surgery. Many do not have a bad experience me for one. Most often it has a ton to do with the experience and skill of the surgeon....also at what stage you are with the desease. Can you give some further information...here's mine:

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores
    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%
    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
    da Vinci 12/29/09 - Dr. Hollensbee & Scott
    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
    Virtually Pad free 2-20-10
    Next PSA scheduled for 5-26 Results 6-2-10
    Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
    Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery had usable erections. Currently only need ¼ pill to get usable .</p>

    how
    how experienced was your surgeon, how extensive was your cancer. Experience is an excellent teacher, perhaps you can enlighten us as to the details.
  • RRMCJIM
    RRMCJIM Member Posts: 149

    how
    how experienced was your surgeon, how extensive was your cancer. Experience is an excellent teacher, perhaps you can enlighten us as to the details.

    mrshisname
    You (hisname) made the right choice for you... I have no more cancer, because I had it removed....every less than zero PSA I get is confirmation of that...
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    I Agree!
    I haven't had any form of treatment yet, but I agree that the risks of surgery are so potentially debilitating that I'd only consider it as a LAST RESORT.

    I also think that the fact that the medical profession continues to promote surgery as the "gold standard" for the treatment of "young" men (like me) with early stage PCa (like me) is not only counter-intuitive (ie., it doesn't make sense) but is also borderline fraudulent, given proof that non-surgical treatments achieve equal results with such patients with fewer quality of life issues. I've stated this opinion here before and and I'm glad to hear from someone who has actually received the treatment who is willing to speak out against surgery as the "obvious" FIRST course of action.

    I'm not saying that surgery might not be necessary for some people, especially for those with more advanced cancers who are unlikely to be helped by less invasive procedures, but for early stage PCa patients, surgery is entirely unnecessary when there are other proven forms of radiation treatment that yield equal results without all of the negative quality of life risks that surgery presents -- namely prolonged incontinence (necessitating the wearing of pads and diapers) and ED (necessitating the use of ED drugs and penile injections) -- and, in the worst cases, the need for penile and/or urinary sphincter implants.

    So, I agree. If you are considering surgery to treat your cancer, think "LONG AND HARD BEFORE YOU PROCEED" because the "cure" of surgery can sometimes be much worse than the disease itself.
  • Kongo
    Kongo Member Posts: 1,166 Member

    I Agree!
    I haven't had any form of treatment yet, but I agree that the risks of surgery are so potentially debilitating that I'd only consider it as a LAST RESORT.

    I also think that the fact that the medical profession continues to promote surgery as the "gold standard" for the treatment of "young" men (like me) with early stage PCa (like me) is not only counter-intuitive (ie., it doesn't make sense) but is also borderline fraudulent, given proof that non-surgical treatments achieve equal results with such patients with fewer quality of life issues. I've stated this opinion here before and and I'm glad to hear from someone who has actually received the treatment who is willing to speak out against surgery as the "obvious" FIRST course of action.

    I'm not saying that surgery might not be necessary for some people, especially for those with more advanced cancers who are unlikely to be helped by less invasive procedures, but for early stage PCa patients, surgery is entirely unnecessary when there are other proven forms of radiation treatment that yield equal results without all of the negative quality of life risks that surgery presents -- namely prolonged incontinence (necessitating the wearing of pads and diapers) and ED (necessitating the use of ED drugs and penile injections) -- and, in the worst cases, the need for penile and/or urinary sphincter implants.

    So, I agree. If you are considering surgery to treat your cancer, think "LONG AND HARD BEFORE YOU PROCEED" because the "cure" of surgery can sometimes be much worse than the disease itself.

    Agree too, but...
    Like Swingshiftworker, I have yet to decide on a course of treatment but have determined that surgery is not a course I am likely to puruse. For men with early stage cancer (Stage T1, PSA < 10, Gleason <7, and small involvement) the literature is pretty clear that there is no difference in outcome between radiation and surgery with respect to survival rates at 15 years. Active surveillance also has high survival rates only slightly behind surgery and radiation. I have consulted with five specialists in the month since my diagnosis and they have all reiterated these facts yet my urologist and one oncologist both recommended surgery because of its ability to eliminate cancer with a low chance of recurrence.

    What the doctors I've consulted with are reluctant to talk about it unless pressed are the side effects of surgery. Almost 50% of men with surgery have some sort of incontinence issues, either outright loss of control or occasional stress incontinence. A high percentage have ED issues and many remain completely impotent, particularly if the cancer site is near the apex where most of the erectile nerves are. The measure of sexual potency following RP is "the ability to achieve an erection sufficient for penetration at least once a month." (Huh? Once a month?!!) As indicated by many, many posts in this forum many men cannot achieve an erection post surgery without pumps, injections, implants, or Viagra-like drugs. There are also issue with the atrophy of the penis, the apparent shrinkage of the penis due to the shortening of the urethea when the postrate is removed which tends to draw the penis up into the body. There's also the sterility issue, the dry orgasms, and the difference in orgasms without the prostate spasms that men without RP enjoy.

    I know many, if not most, men who post here have had the DaVinci surgical procedure and seem happy with it yet a recent study of over 9000 men in the Medicare database indicates that robotic surgery leads to higher incidences of incontinence, ED, and nearly twice as many urinary and genital issues as open surgery. http://www.webmd.com/prostate-cancer/news/20091013/robot-prostate-surgery-more-ed-incontinence

    One of my doctors told me that "this isn't going to kill you, but at your age you will eventually need to deal with it." At 59, she meant that given the histology of PCa and even the relatively long PSA doubling time and low PSA velocity that I have, at some point I will need treatment. I would rather have treatment while relatively young than later when some other unforseen issue may preclude an option.

    I am considering Novalis Tx 5-day radiation treatment, Cyberknife (both are essentially the same procedure), and Proton therapy and will complete my consultations this week and then make a decision about what I think is best for me. Certainly, radiation has its downsides with respect to incontinence and ED but at much, much lower rates than surgery. The new technologies represented by Novalis and Cyberknife deliver the radiation at sub-millimeter accuracy which minimizes the potential damage to the colon, seminal vessels, bladder, and erectile nerves surrounding the prostate. But there is still risk.

    I also investigated cryosurgery, hormone blockage, HIFU, tomotherapy, and homeopathic courses of therapy.

    I would never question a man's decision in combating this disease as long as it was made deliberately, with his eyes wide open after doing the requisite research. We are all different and each of our cancer paths is unique. We all view the world from different perspectives. One may want the cancer out of them while another is comfortable with it inside knowing that it is slow growing and though 1 in 6 men will get PCa, only about 1 in 35 will actually die from it.

    We don't get any Mulligan's on our decison so we need to be informed and knowledgable when we make it. But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen.

    Diagnosed March 23, 2010
    Dx PSA: 4.3
    Gleason: 3+3=6
    Stage: T1c
    1 of 12 biopsy cores positive with 15% involvement
    Perineural invasion not seen
    Prostate volume 47 ml
    Bone scan, chest x-ray, and blood panel negative
    DRE normal
    PSA density: 0.092 ng/ml/cm3
    PSA velocity: 0.23 ng/ml/yr
    PSA doubling time: 9.28 years
    No physical symptoms or issues with urinary or sexual function
  • jminnj
    jminnj Member Posts: 129 Member
    Kongo said:

    Agree too, but...
    Like Swingshiftworker, I have yet to decide on a course of treatment but have determined that surgery is not a course I am likely to puruse. For men with early stage cancer (Stage T1, PSA < 10, Gleason <7, and small involvement) the literature is pretty clear that there is no difference in outcome between radiation and surgery with respect to survival rates at 15 years. Active surveillance also has high survival rates only slightly behind surgery and radiation. I have consulted with five specialists in the month since my diagnosis and they have all reiterated these facts yet my urologist and one oncologist both recommended surgery because of its ability to eliminate cancer with a low chance of recurrence.

    What the doctors I've consulted with are reluctant to talk about it unless pressed are the side effects of surgery. Almost 50% of men with surgery have some sort of incontinence issues, either outright loss of control or occasional stress incontinence. A high percentage have ED issues and many remain completely impotent, particularly if the cancer site is near the apex where most of the erectile nerves are. The measure of sexual potency following RP is "the ability to achieve an erection sufficient for penetration at least once a month." (Huh? Once a month?!!) As indicated by many, many posts in this forum many men cannot achieve an erection post surgery without pumps, injections, implants, or Viagra-like drugs. There are also issue with the atrophy of the penis, the apparent shrinkage of the penis due to the shortening of the urethea when the postrate is removed which tends to draw the penis up into the body. There's also the sterility issue, the dry orgasms, and the difference in orgasms without the prostate spasms that men without RP enjoy.

    I know many, if not most, men who post here have had the DaVinci surgical procedure and seem happy with it yet a recent study of over 9000 men in the Medicare database indicates that robotic surgery leads to higher incidences of incontinence, ED, and nearly twice as many urinary and genital issues as open surgery. http://www.webmd.com/prostate-cancer/news/20091013/robot-prostate-surgery-more-ed-incontinence

    One of my doctors told me that "this isn't going to kill you, but at your age you will eventually need to deal with it." At 59, she meant that given the histology of PCa and even the relatively long PSA doubling time and low PSA velocity that I have, at some point I will need treatment. I would rather have treatment while relatively young than later when some other unforseen issue may preclude an option.

    I am considering Novalis Tx 5-day radiation treatment, Cyberknife (both are essentially the same procedure), and Proton therapy and will complete my consultations this week and then make a decision about what I think is best for me. Certainly, radiation has its downsides with respect to incontinence and ED but at much, much lower rates than surgery. The new technologies represented by Novalis and Cyberknife deliver the radiation at sub-millimeter accuracy which minimizes the potential damage to the colon, seminal vessels, bladder, and erectile nerves surrounding the prostate. But there is still risk.

    I also investigated cryosurgery, hormone blockage, HIFU, tomotherapy, and homeopathic courses of therapy.

    I would never question a man's decision in combating this disease as long as it was made deliberately, with his eyes wide open after doing the requisite research. We are all different and each of our cancer paths is unique. We all view the world from different perspectives. One may want the cancer out of them while another is comfortable with it inside knowing that it is slow growing and though 1 in 6 men will get PCa, only about 1 in 35 will actually die from it.

    We don't get any Mulligan's on our decison so we need to be informed and knowledgable when we make it. But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen.

    Diagnosed March 23, 2010
    Dx PSA: 4.3
    Gleason: 3+3=6
    Stage: T1c
    1 of 12 biopsy cores positive with 15% involvement
    Perineural invasion not seen
    Prostate volume 47 ml
    Bone scan, chest x-ray, and blood panel negative
    DRE normal
    PSA density: 0.092 ng/ml/cm3
    PSA velocity: 0.23 ng/ml/yr
    PSA doubling time: 9.28 years
    No physical symptoms or issues with urinary or sexual function</p>

    Kongo said something in his
    Kongo said something in his comments that I think we all need to keep in mind as we make our own posts:
    "But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen."

    This is so true. Each of us has our own circumstances, our own thought processes. For example, I could have gone the Active Surveillance route, but I know the way I am. Waiting for those test results every few months would have been brutal for me. Even though my numbers were low (2.9, one core positive), my post op path report showed that 35% of my gland was cancerous. So for me surgery was the right course. I am 47, married for 20+ years we have two kids (19 and 16), no plans for any more. I have had some minor incontinence issues and some minor ED issues (meds work great). So I am pleased with my choice.

    That may not be the right choice for everyone, we have so many factors to weigh. Age, general health, family, PSA level, biopsy results, what treatments are out there, what will give me the best chance for recovery with the least impact.

    We are all brothers from a different mother as they say, united by something that I know each of would rather not be dealing with, but yet here we are.

    Let us all continue to support one another, be there for one another, pray for one another. I thank God every day that I was able to find this group and talk to others who are experiencing these same problems.

    God Bless and Good Luck to all of you,

    Joe
  • chitown
    chitown Member Posts: 90 Member
    Very well said
    My father had massive mets by 57 and he died a very painful death at 61. My uncle (mother's brother) died before 60 in a similar way. I am 48, gleason at 3+3, had no symptoms, PSA of 2.1 and a palpable nodule during DRE led to a biopsy. Found 6 of 15 core cancerous. Left, center and right lobes.

    Going for a da vinci surgery in June. Am very healthy and athletic and going with a very positive mind for surgery and recovery, followed by long, fruitful and healthy life.

    We all have different stories and plans, but we are all brothers needing support for each other more than we think.
  • JR1949
    JR1949 Member Posts: 230
    jminnj said:

    Kongo said something in his
    Kongo said something in his comments that I think we all need to keep in mind as we make our own posts:
    "But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen."

    This is so true. Each of us has our own circumstances, our own thought processes. For example, I could have gone the Active Surveillance route, but I know the way I am. Waiting for those test results every few months would have been brutal for me. Even though my numbers were low (2.9, one core positive), my post op path report showed that 35% of my gland was cancerous. So for me surgery was the right course. I am 47, married for 20+ years we have two kids (19 and 16), no plans for any more. I have had some minor incontinence issues and some minor ED issues (meds work great). So I am pleased with my choice.

    That may not be the right choice for everyone, we have so many factors to weigh. Age, general health, family, PSA level, biopsy results, what treatments are out there, what will give me the best chance for recovery with the least impact.

    We are all brothers from a different mother as they say, united by something that I know each of would rather not be dealing with, but yet here we are.

    Let us all continue to support one another, be there for one another, pray for one another. I thank God every day that I was able to find this group and talk to others who are experiencing these same problems.

    God Bless and Good Luck to all of you,

    Joe

    Well Said
    I apree with what you said. Everybody has their own circumstances and you need to weigh all the factors like your age, the gravity of your PSA and involvement of the cancer monster, biopsy results, general health. I was 60, I had a PSA that rose from 19 to 22 in about 3 months and biopsy 12 pin with all 12 cancerous. Thus I decided on RP surgery. So for me it was quantity of life not quality of life. I have 3 grandchildren that love me and I want to see them grow up. I believe I can beat the incontincy and if I cannot beat ED, my wife of 36 years, God bless her, has told me that we have had a good sex life for 35 years and if we cannot have sex again, that she will still love me as much as she always has.

    I am thankful that I found this group for help, support, ideas, etcetera.

    Good luck to all of you in this discussion board
  • bdhilton
    bdhilton Member Posts: 846 Member
    P Wright?
    I was not going to comment on this one but perhaps this is some twisted entry…think about it “p wright”…Just negativity with no details or response to the groups inquiries…

    If not, sorry but I would suggest some counseling…just my 2 cents...best to all
  • pwright613
    pwright613 Member Posts: 2
    Making Decisions Regarding
    Making Decisions Regarding Surgery
    BDHILTON’s, ridiculing PWright’s comments regarding surgery as an option for prostate cancer treatment, is indicative of one who has something to lose, other than a prostate. BDHILTON, you need to be more prudent with your feedback and you can learn how to do so, by reading input from Kongo and Swingshiftworker. If I wrongly insinuated your prostate situation, my apologies and you can completely ignore the comments that you describe as negative, then proceed with you surgery option. Good luck. You may have better luck than I did.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Making Decisions Regarding
    Making Decisions Regarding Surgery
    BDHILTON’s, ridiculing PWright’s comments regarding surgery as an option for prostate cancer treatment, is indicative of one who has something to lose, other than a prostate. BDHILTON, you need to be more prudent with your feedback and you can learn how to do so, by reading input from Kongo and Swingshiftworker. If I wrongly insinuated your prostate situation, my apologies and you can completely ignore the comments that you describe as negative, then proceed with you surgery option. Good luck. You may have better luck than I did.

    pwright613
    I have to agree with BD....You offer nothing but negative about surgery yet you still have not told your whole story..when the rest of your story may be the cause of the outcome...what was your pre-surgery stats....how experienced was your doctor - How many da vinci's did he perform...if you say less than 300 or even 400 there is a huge learning curve on that which I am sorry you did not research out prior to choosing? See now, I am just assuming that...look how stupid that makes me look. However, those two things alone you fail to comment back to multiple inquires...based on that I guess no one has any reason to believe what you post - simple logic. It's pretty presumptious of you to say surgery IS a bad choice....when what you should have said was, "Surgery with who I choose and for me was a bad choice." Sorry I call it like I see...always have and always will ...life is too short. You can read many stories...on here and in factual books of successful surgeries with prostate cancer...I was one.

    Randy in Indy
  • steckley
    steckley Member Posts: 100
    Kongo said:

    Agree too, but...
    Like Swingshiftworker, I have yet to decide on a course of treatment but have determined that surgery is not a course I am likely to puruse. For men with early stage cancer (Stage T1, PSA < 10, Gleason <7, and small involvement) the literature is pretty clear that there is no difference in outcome between radiation and surgery with respect to survival rates at 15 years. Active surveillance also has high survival rates only slightly behind surgery and radiation. I have consulted with five specialists in the month since my diagnosis and they have all reiterated these facts yet my urologist and one oncologist both recommended surgery because of its ability to eliminate cancer with a low chance of recurrence.

    What the doctors I've consulted with are reluctant to talk about it unless pressed are the side effects of surgery. Almost 50% of men with surgery have some sort of incontinence issues, either outright loss of control or occasional stress incontinence. A high percentage have ED issues and many remain completely impotent, particularly if the cancer site is near the apex where most of the erectile nerves are. The measure of sexual potency following RP is "the ability to achieve an erection sufficient for penetration at least once a month." (Huh? Once a month?!!) As indicated by many, many posts in this forum many men cannot achieve an erection post surgery without pumps, injections, implants, or Viagra-like drugs. There are also issue with the atrophy of the penis, the apparent shrinkage of the penis due to the shortening of the urethea when the postrate is removed which tends to draw the penis up into the body. There's also the sterility issue, the dry orgasms, and the difference in orgasms without the prostate spasms that men without RP enjoy.

    I know many, if not most, men who post here have had the DaVinci surgical procedure and seem happy with it yet a recent study of over 9000 men in the Medicare database indicates that robotic surgery leads to higher incidences of incontinence, ED, and nearly twice as many urinary and genital issues as open surgery. http://www.webmd.com/prostate-cancer/news/20091013/robot-prostate-surgery-more-ed-incontinence

    One of my doctors told me that "this isn't going to kill you, but at your age you will eventually need to deal with it." At 59, she meant that given the histology of PCa and even the relatively long PSA doubling time and low PSA velocity that I have, at some point I will need treatment. I would rather have treatment while relatively young than later when some other unforseen issue may preclude an option.

    I am considering Novalis Tx 5-day radiation treatment, Cyberknife (both are essentially the same procedure), and Proton therapy and will complete my consultations this week and then make a decision about what I think is best for me. Certainly, radiation has its downsides with respect to incontinence and ED but at much, much lower rates than surgery. The new technologies represented by Novalis and Cyberknife deliver the radiation at sub-millimeter accuracy which minimizes the potential damage to the colon, seminal vessels, bladder, and erectile nerves surrounding the prostate. But there is still risk.

    I also investigated cryosurgery, hormone blockage, HIFU, tomotherapy, and homeopathic courses of therapy.

    I would never question a man's decision in combating this disease as long as it was made deliberately, with his eyes wide open after doing the requisite research. We are all different and each of our cancer paths is unique. We all view the world from different perspectives. One may want the cancer out of them while another is comfortable with it inside knowing that it is slow growing and though 1 in 6 men will get PCa, only about 1 in 35 will actually die from it.

    We don't get any Mulligan's on our decison so we need to be informed and knowledgable when we make it. But once we make our decision, those of us who participate in this forum owe it to each other to support our brothers in the course they have chosen.

    Diagnosed March 23, 2010
    Dx PSA: 4.3
    Gleason: 3+3=6
    Stage: T1c
    1 of 12 biopsy cores positive with 15% involvement
    Perineural invasion not seen
    Prostate volume 47 ml
    Bone scan, chest x-ray, and blood panel negative
    DRE normal
    PSA density: 0.092 ng/ml/cm3
    PSA velocity: 0.23 ng/ml/yr
    PSA doubling time: 9.28 years
    No physical symptoms or issues with urinary or sexual function</p>

    Questions on Novalis Tx 5-day radiation treatment, Cyberknife
    You mentioned that this method minimizes damage to the seminal vessels,erectile tissue, etc. I am guessing you feel, based on your biopsy, scans, et.al., that these areas are not cancerous.

    Based on what I've read, biopsies numbers are often times upgraded (ie. the cancer is more widespread, aggressive, in the seminal vessels, etc.). The biopsy numbers were low due to the limited extent of biopsy sampling. This is usually found post-op when the pathologist slices and dices the prostate .... and a back up plan is developed (i.e. SR).

    If PSA increases after Novalis what is the back up plan? SR?

    Also, I agree that you should treat the cancer while you are relatively young. Watchful waiting did not make sense to me .... In my mind it was like giving the cancer time to establish a beach head in my other organs ... while I grew old and less able to fight it.
  • Kongo
    Kongo Member Posts: 1,166 Member
    steckley said:

    Questions on Novalis Tx 5-day radiation treatment, Cyberknife
    You mentioned that this method minimizes damage to the seminal vessels,erectile tissue, etc. I am guessing you feel, based on your biopsy, scans, et.al., that these areas are not cancerous.

    Based on what I've read, biopsies numbers are often times upgraded (ie. the cancer is more widespread, aggressive, in the seminal vessels, etc.). The biopsy numbers were low due to the limited extent of biopsy sampling. This is usually found post-op when the pathologist slices and dices the prostate .... and a back up plan is developed (i.e. SR).

    If PSA increases after Novalis what is the back up plan? SR?

    Also, I agree that you should treat the cancer while you are relatively young. Watchful waiting did not make sense to me .... In my mind it was like giving the cancer time to establish a beach head in my other organs ... while I grew old and less able to fight it.

    Exactly
    I do believe based on the pathological evidence in my individual case that the cancer is confined to the prostate. With Gleason <7, PSA <10, and stage T1 the odds of it having moved beyond tghe prostate capusle are less than 1%. I am having a second opinion on the biopsy but I do realize that many cancers are upgraded after removal.

    If Novalis or Cyberknife "failed" I suppose a backup plan would be cryo but I am pretty confident that in my case at least, the radiation will get it the first time around.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Kongo said:

    Exactly
    I do believe based on the pathological evidence in my individual case that the cancer is confined to the prostate. With Gleason <7, PSA <10, and stage T1 the odds of it having moved beyond tghe prostate capusle are less than 1%. I am having a second opinion on the biopsy but I do realize that many cancers are upgraded after removal.

    If Novalis or Cyberknife "failed" I suppose a backup plan would be cryo but I am pretty confident that in my case at least, the radiation will get it the first time around.</p>

    Kongo, FYI, I was advised by
    Kongo, FYI, I was advised by my CK specialist that, if CK fails, he would recommend brachytherapy (BT) as opposed to Cyro because Cyro is certain to cause permanent ED.

    BT has it's own problems, of course, but between BT and Cyro, it is the least detrimental alternative. If BT fails, Cyro is still possible, as is, salvage surgery (depending upon the amount of tissue damage caused by the radiation) and HIFU (if you can afford to pay for it yourself since it is not yet covered by any insurance carrier in the USA).

    This all assumes the cancer is still confined to the prostate. If not, then chemo and EBRT would probably be mandated depending upon where and how far the cancer has advanced.

    Let's hope we never have to address these alternatives!
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    bdhilton said:

    P Wright?
    I was not going to comment on this one but perhaps this is some twisted entry…think about it “p wright”…Just negativity with no details or response to the groups inquiries…

    If not, sorry but I would suggest some counseling…just my 2 cents...best to all

    The initial post by P Wright
    The initial post by P Wright very well could have been a troll, but I don't see any point in attacking the the poster.

    Trolls are very common on all forums and, if you don't rise to the bait, nothing will come of it. In this case, it has just brought out comments that reflect our own biases (both positive and negative) about surgery as a treatment option, but this conversation has not been personally antagonistic (only the attacks on PW have been). If fact, a discussion of our "brotherhood" has developed out of it the thread, which I think is beneficial for all of us.

    So, rather than calling P Wright out, I think we should thank him for initiating the discussion about the risks of surgery and for the resulting conclusion that we are all in the same boat together, despite which treatment we individually choose (or chose) to use to fight our battle with prostate cancer.

    Thank-you, PW!
  • Kongo
    Kongo Member Posts: 1,166 Member

    Kongo, FYI, I was advised by
    Kongo, FYI, I was advised by my CK specialist that, if CK fails, he would recommend brachytherapy (BT) as opposed to Cyro because Cyro is certain to cause permanent ED.

    BT has it's own problems, of course, but between BT and Cyro, it is the least detrimental alternative. If BT fails, Cyro is still possible, as is, salvage surgery (depending upon the amount of tissue damage caused by the radiation) and HIFU (if you can afford to pay for it yourself since it is not yet covered by any insurance carrier in the USA).

    This all assumes the cancer is still confined to the prostate. If not, then chemo and EBRT would probably be mandated depending upon where and how far the cancer has advanced.

    Let's hope we never have to address these alternatives!

    Good Points
    All good points, Swing. I guess for me, I believe that the overwhelming research shows that for early detect, low grade cancers like mine seems to be, just about any type of radiation works fine achieving over a 93% success rate. While the long term evidence for Cyberknife is still sketchy, its comparison to HDR Brachy and other dosage protocols strongly suggest similar success.

    Interestingly, 23% of all surgeries require a radiation follow-up within two years.

    I'm leaning toward Cyberknife now after my consultation yesterday.
  • luckyman2
    luckyman2 Member Posts: 54

    pwright613
    I have to agree with BD....You offer nothing but negative about surgery yet you still have not told your whole story..when the rest of your story may be the cause of the outcome...what was your pre-surgery stats....how experienced was your doctor - How many da vinci's did he perform...if you say less than 300 or even 400 there is a huge learning curve on that which I am sorry you did not research out prior to choosing? See now, I am just assuming that...look how stupid that makes me look. However, those two things alone you fail to comment back to multiple inquires...based on that I guess no one has any reason to believe what you post - simple logic. It's pretty presumptious of you to say surgery IS a bad choice....when what you should have said was, "Surgery with who I choose and for me was a bad choice." Sorry I call it like I see...always have and always will ...life is too short. You can read many stories...on here and in factual books of successful surgeries with prostate cancer...I was one.

    Randy in Indy

    Bad decison for you
    Pwright613,

    Your advice to think long and hard really hit home. Thank you, because this forum helps everyone to do exactly that! I did indeed think long and hard about those options, including HIFU, radiation and watchful waiting (active surveillance)... which I was actually doing for about six months before settling on a choice that was right for me.

    I chose laparoscopy surgery to remove my prostate. That was done in November 2007. I'm sorry to find out that it was a bad decision for you. However, I'm thankful that it was certainly the right one for me. My wife is thankful too.

    Len
  • 07SHNNAC7081522
    07SHNNAC7081522 Member Posts: 17
    Wow...Making Decisions Regarding Surgery
    That's a pretty bold statement. I have seen (it seems like one million posts...) and I don't get this sentiment. I've tried to rationalize with this understanding and come to terms (and respect...) the decisions that many of us make. When you state that surgery is a bad decision...you arbitrarily are making a statement that I've made a bad decision. My decision was prostatectomy via Da Vinci. Worked best for me and my situation...trust...I did tons of research. ALL alternatives have their drawbacks. It is my belief that our jobs here are to help those that are uninformed become educated to make the well-informed decision. I was diagnosed in March 2010...Age 40 (...yes my jaw hit the floor on the diagnosis...utter disbelief...), PSA 2.2, Free PSA 10.3, positive biopsy (5/12 cores), right mid; 2 of 2 cores- 3+4 (13% of needle core tissue), right base; 1 of 3 core - 3+3 (7% of needle core tissue), and left mid; 2 of 2 cores - (2% of needle core tissue) - Pathological Report - Gleason 7, Clinical staging - T1C. Consultations stemmed from providers performing Proton Therapy, Radiation Therapy, Cryotherapy...from Miami Florida to New York City. All consultations resulted in this for my own well-being - I could have chosen ANY treatment, but if I elected removal as a second choice...there would have been no turning back to use it as an option later on. Surgery was performed 29 Apr...I was home on the 30...the following week on wednesday (7 days later...) the catheter out...life is good. As expected, I am experiencing incontinence, but each day it gets better and better...don't know about the ED yet... but currently "the man" appears responsive. (...Who wants to get with the "get down" a week after surgery anyway...) I continue to get better each day...(The day after the surgery...I walked for 1 1/2 miles....., I taught my 5 year old how to ride his bike the day after...) With the way things are going...i'm optimistic that this will be a success story. My only challenge initially...finding someone (the best) to perform the surgery and advocate my well-being for the best outcome. I was told...find someone who has done over 1000 of them...personally I don't think this is realistic. Da Vinci was approved for use in 2001...do the math...every hospital doesn't have one (a robot) with surgeon(s) who can perform over 100-120 a year (2-3 times a week)...divide that up between a couple of oncologists...those numbers go down pretty significantly. I think a realistic number for greatness regarding proficiency is around the 500 area. The only guy I know that has done 4/5x that many is Dr Samadi up in New York (and he's good...)...he's got over 2400 touches...I don't know how, but he has. My doctor had performed over 450...and had participated in over 900. He was realistic and explained ALL the facts. When it got right down to it...the radiation oncologist had a great sell, the proton therapy oncologist had a great sell...everyone advocated why their product was the best...and they are all good. I simply got back to the basics on what had been proven for total eradication. This is me though...I KNOW I made a well informed decision...one which was carefully thought out based on 6 or 7 consultations based on my own personal situation...I understand everyone is different...
  • DanKCMO
    DanKCMO Member Posts: 42

    Wow...Making Decisions Regarding Surgery
    That's a pretty bold statement. I have seen (it seems like one million posts...) and I don't get this sentiment. I've tried to rationalize with this understanding and come to terms (and respect...) the decisions that many of us make. When you state that surgery is a bad decision...you arbitrarily are making a statement that I've made a bad decision. My decision was prostatectomy via Da Vinci. Worked best for me and my situation...trust...I did tons of research. ALL alternatives have their drawbacks. It is my belief that our jobs here are to help those that are uninformed become educated to make the well-informed decision. I was diagnosed in March 2010...Age 40 (...yes my jaw hit the floor on the diagnosis...utter disbelief...), PSA 2.2, Free PSA 10.3, positive biopsy (5/12 cores), right mid; 2 of 2 cores- 3+4 (13% of needle core tissue), right base; 1 of 3 core - 3+3 (7% of needle core tissue), and left mid; 2 of 2 cores - (2% of needle core tissue) - Pathological Report - Gleason 7, Clinical staging - T1C. Consultations stemmed from providers performing Proton Therapy, Radiation Therapy, Cryotherapy...from Miami Florida to New York City. All consultations resulted in this for my own well-being - I could have chosen ANY treatment, but if I elected removal as a second choice...there would have been no turning back to use it as an option later on. Surgery was performed 29 Apr...I was home on the 30...the following week on wednesday (7 days later...) the catheter out...life is good. As expected, I am experiencing incontinence, but each day it gets better and better...don't know about the ED yet... but currently "the man" appears responsive. (...Who wants to get with the "get down" a week after surgery anyway...) I continue to get better each day...(The day after the surgery...I walked for 1 1/2 miles....., I taught my 5 year old how to ride his bike the day after...) With the way things are going...i'm optimistic that this will be a success story. My only challenge initially...finding someone (the best) to perform the surgery and advocate my well-being for the best outcome. I was told...find someone who has done over 1000 of them...personally I don't think this is realistic. Da Vinci was approved for use in 2001...do the math...every hospital doesn't have one (a robot) with surgeon(s) who can perform over 100-120 a year (2-3 times a week)...divide that up between a couple of oncologists...those numbers go down pretty significantly. I think a realistic number for greatness regarding proficiency is around the 500 area. The only guy I know that has done 4/5x that many is Dr Samadi up in New York (and he's good...)...he's got over 2400 touches...I don't know how, but he has. My doctor had performed over 450...and had participated in over 900. He was realistic and explained ALL the facts. When it got right down to it...the radiation oncologist had a great sell, the proton therapy oncologist had a great sell...everyone advocated why their product was the best...and they are all good. I simply got back to the basics on what had been proven for total eradication. This is me though...I KNOW I made a well informed decision...one which was carefully thought out based on 6 or 7 consultations based on my own personal situation...I understand everyone is different...

    No doubt the original post
    No doubt the original post was made out of frustration and disappointment. I hope he comes back and fills us in more. And I hope his situation turns around and goes in a more positive direction.

    I appreciate the follow up posts too. Although I don't expect (or even want) every post to be an inspirational 'feel good' account of things, with my surgery three weeks away the first post kind of upset me.

    Dan