Just Diagnosed...

MCinNC
MCinNC Member Posts: 40 Member
edited March 2014 in Prostate Cancer #1
Hello Guys. Definitely not happy to be here, but after reading your posts for a couple of days I appreciate the wealth of experience represented here, and would welcome your thoughts.

Here is my deal: I'm 56, with recent biopsy results showing 1 of 12 positive, with 5-10% of the core tissue involved; Gleason of 3+3=6, last PSA I think was 2.3, nothing on DRE, but family history (father) with PC (which was the main reason my local uro recommended the biopsy). Stage is T1c. General health is good, other than having to take Crestor for cholesterol.

I'm going through Dr. Walsh's book, and have had the sit down talk with my local doctor. His is a surgical background and he is comfortable recommending open, non robotic surgery by his partner, who has 20 yrs of experience and averages one of these per week. I'm probably 1.5 to 2 hours away from medical centers with robotic capabilities, and my uro has offered to arrange a visit with the hot shot at one of those university centers that specializes in the RRP technique.

I'm still in the process of trying to absorb a lot of information, and don't want to exclude anything until I feel more informed and able to make a reasoned judgment. The idea of removing all the tissue is appealing. Sounds like the stage, my age and general health make me a good candidate. Yet, the possible side effects from doing exactly that scare the hell out of me, and nothing about my stage, age and general health guarantee me anything.

My dad's health (diabetes and previous small strokes) precluded surgery as an option for him back in the late 80's- early 90's, and his radiation treatments left him with some tissue damage and some re-occurring problems. I don't really know the details of his initial diagnosis.

Perhaps because of my dad's situation, radiation seems a bit less attractive to me. The potential side effects seem almost equally worrisome to those of surgery, but I'm still learning about the details. Don't know much at all yet about Cryo/Thermal, HIFU, CyberKnife, and lots of others that I've heard mentioned. Lots more work to do there. Watchful waiting for another 10 years - without the potential side effects - sounds good too, but I worry about the possibility of missing a chance to "cure" the disease while enjoying life without side effects in the interim.

Anyway, my current thinking, which is subject to change if a better plan comes along, is that I should talk to at least two other drs, looking for different perspectives and specialties. I'm not sure how to look for them in an organized way, particularly giving preference to any that might be nearer to me geographically, other than a hit and miss searches on the internet or webpages of the nearest major medical centers. I expect that I'll get lots of info that way - but processing it will be a challenge.

I'm also thinking at this point that I'm not going to rush the process. My impression is that while it is possible that immediate action is needed to keep the cancer from spreading out of the prostate, that that isn't probable in my situation and I should in the end be as comfortable and confident as possible about whatever choice is made.

(I think part of the "not rush" attitude is because I feel like my PC was found years before it otherwise would have due to a fairly random series of events that led me to change doctors, the new uro saying that due to the family history "if it were me I'd do the biopsy", and my reluctant willingness to go along and humor him with what I felt would surely amount to an unnecessary test. So, taking a month or two to figure things out doesn't seem unreasonable.)

So, there it is. Any comments, advice, thoughts, etc. are welcomed.


Mac
«13

Comments

  • Trew
    Trew Member Posts: 931 Member
    Do not neglect to look into
    Do not neglect to look into proton therapy. Please consider it- you are an ideal candiate for it.

    There is a thread down the line smewhere with all the proton centers in the US listed.

    Consider going to the Loma Linda Univeristy medical site and requesting there free book and DVD on proton treatment. You have so much to save....
  • dakotarunner
    dakotarunner Member Posts: 102 Member
    Hi MC.
    You are correct -

    Hi MC.
    You are correct - there is no hurry. There is a wealth of information out there, and many will chime in here with what they feel is the best way to go. Regardless of what you decide to do, you will find support at this site. None of the PC members are here just for the heck of it, but we all make the best of it, and go on with our lives.

    Take your time, sort the info out, talk it over with family and do what you feel is best for you. Keep coming back and let us know how things are going. Gods' blessing to you on your journey.

    DR
  • ob66
    ob66 Member Posts: 227 Member
    No rush, but
    MC in NC, I agree you need not rush to judgment. But on the other side of the coin, you must not procrastinate. Take judicious time to make an informed decision, but do not delay. Why? Pre surgical Gleasons have a way of being lower than post surgical Gleasons. Mine went from 7 to 8 which is all the difference in the world. Your 6 is favorable, but is it really a 6 (post surg.). None of this is said in any way to scare you. Those who know me on this site know I am "glass is half full".....You need to sit down, do your homework, ask any questions you need, and make a decision. Do not let your low numbers lull you in any way into a false sense of comfort. Hate to tell you, but you really don't know the whole picture right now. Hope this helps.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    No rush
    DR gave good advice.......your number is low so you do not have to rush to make a decision on treatment..since your numbers are low, you are an excellent candidate for every treatment type

    Some comments about one of the choices, Active Surveillance which I have choosen, the criteria is generally 3+3=6 with three cores or less positive with 50 percent or less involvement in each, and a low steady psa....Now I was diagnosed at 66 so I was 10 years older than you with to my knowledge no family history.

    Some questions and comments:

    How is your general health?

    Where do you live? There is a good chance that there are posters in your general area who can direct you to support group, which for the most part give very useful medical information and direction to medical expertise.

    For your information, here is information about what I have been doing, and a study which supports Active Surveillance which you may or may not be a candidate because of your age. On the other hand be advised that there are men who are younger than you with worse numbers who are on active surveillance. If active surveillance might be a treatment that is of interest, I suggest that you speak to a physician who specializes in active surveillance for prostate cancer.

    My doings/Study

    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(tesla 1.5) 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
    Entered in a research study for active surveillance at UCLA.
    PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
    June 2010 ...MRI(tesla 3.0)
    June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
    Johns Hopkins.......second opinion confirm no cancer

    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 slides 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.
  • Kongo
    Kongo Member Posts: 1,166 Member
    Welcome
    Welcome to the forum, Mac. I’m sorry that you’re here but this is a great place to begin learning about what options you have and learn from the experiences of others who have traveled a similar path.

    My pathology was very similar to yours, relatively low PSA, only a single biopsy core positive with 15% involvement, DRE normal, no physical symptoms and staged at T1c. As others have suggested, you have time to study and make an informed decision about which course of treatment is best for you. Your statistics are very positive in that you are probably an ideal candidate for almost any treatment option you choose.

    In my own case I read several books about prostate cancer, consulted with six specialists, and read dozens of papers and studies before making a decision. Since there are so many options to deal with this disease, it can sometimes be frustrating when comparing all the alternatives and you will be given plenty of conflicting advice from doctors and survivors alike about the best course of action.

    Many prostate cancer survivors are frequently quite passionate about the various choices of treatment so it is very important to be skeptical and do your own research. Only you can make the best decision for you.

    I found it useful to organize all of my medical records in a single folder and summarize all of the relevant information about prostate cancer so that it was readily available when doing my research or meeting with a specialist. I also found it absolutely essential to take along my wife during the consultations because there is so much information being put out you will need someone else to help you take notes. You may want to consider recording your consultations.

    I would suspend judgment on radiation based on your father’s situation until you have done your own research and met with specialists. The technology delivering radiation today is much more accurate than even a few years ago and while there are potential significant side effects with almost any treatment, many modern radiation treatments have less severe side effects that some other treatment modalities.

    I would also recommend that you talk to more than just two doctors. Keep in mind that most urologists have a surgical background and that over 90% of them will recommend surgery. Radiologists, not surprisingly, tend to want to put you in the microwave. As a minimum I would talk to or at least research thoroughly an open surgery advocate, a robotic advocate, a specialist in brachytherapy who is also familiar with HDR brachytherapy, proton options, IMRT/SGRT/XBRT/SBRT radiation options, HIFU, and cryosurgery. Many specialists with national renown will do telephone consultations but if possible, I think it’s best to meet them face-to-face. I would also suggest that you get a second opinion on your biopsy.

    Good luck to you in your research and keep us posted on your progress.

    ==========================================
    Age at Dx: 59. PSA 4.3 which dropped to 2.8 before treatment following the elimination of dairy in diet. 1 of 12 cores positive at 15% involvement. Gleason 3+3=6. DRE normal. Stage T1c. No physical symptoms or family history of PCa.

    Treatment: SBRT radiation delivered by CyberKnife system in June 2010. Side effects from treatment: None
  • Beau2
    Beau2 Member Posts: 261
    Side effects
    Mac,

    You indicated that that you were concerned about side effects. The following link will give you some pretty good information on Prostate Cancer treatment side effects. It contains three lectures by Dr. John P. Mulhall author of the book "Saving Your Sex Life, A guide for men with prostate cancer".

    www.mskcc.org/mskcc/html/94910.cfm
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Seriously Consider CyberKnife
    Your stats are very similar to mine and I did a tremendous amount of research that I had to hunt and peck for in order to find out about ALL of the currently available options.

    You already seem to have a good overview of what's available. Surgery (open or robotic) is still the most often recommended treatment BUT it is also the treatment with the greatest potential for negative side effects -- particularly urinary and ED related. You seem skeptical about radiation but Brachytherapy (BT) has now been used for years w/success with relatively few serious side effects. However, Proton Beam Therapy (PBT) and CyberKnife (CK) has also made huge advances in the application of radiation in order to treat PCa with minimal side effects. So, don't neglect to look into both of those methods.

    FWIW, I and a few others hear (including Kongo and ViperFred, whose stats are similar to ours) chose CK over all other methods. Of tThe 3 men I spoke w/personally who received CK in the past 2 years, experienced NO serious side effects; the 3rd man had some urinary tract problems after 18 months, which resolved themselves after additional treatment. ViperFred, who also received treatment about 2 years ago, also reports here that he has had NO negative side effects, as does Kongo who was treated just a month or so ago.

    I am going to begin my CK treatments on September 15th and hope to report similar results as the men above.

    Good luck!
  • MCinNC
    MCinNC Member Posts: 40 Member
    Trew said:

    Do not neglect to look into
    Do not neglect to look into proton therapy. Please consider it- you are an ideal candiate for it.

    There is a thread down the line smewhere with all the proton centers in the US listed.

    Consider going to the Loma Linda Univeristy medical site and requesting there free book and DVD on proton treatment. You have so much to save....

    Do not neglect
    Thanks for the suggestion... I'll definitely look into it and see where it is offered in my area. So far, I'm not sufficiently informed on proton therapy or cyberknife to know what the difference between the two is...

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member

    Hi MC.
    You are correct -

    Hi MC.
    You are correct - there is no hurry. There is a wealth of information out there, and many will chime in here with what they feel is the best way to go. Regardless of what you decide to do, you will find support at this site. None of the PC members are here just for the heck of it, but we all make the best of it, and go on with our lives.

    Take your time, sort the info out, talk it over with family and do what you feel is best for you. Keep coming back and let us know how things are going. Gods' blessing to you on your journey.

    DR

    You are correct -
    Thanks DR. I appreciate the good wishes. I can see why this board is an active one - lots of ideas and supportive members.

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member
    ob66 said:

    No rush, but
    MC in NC, I agree you need not rush to judgment. But on the other side of the coin, you must not procrastinate. Take judicious time to make an informed decision, but do not delay. Why? Pre surgical Gleasons have a way of being lower than post surgical Gleasons. Mine went from 7 to 8 which is all the difference in the world. Your 6 is favorable, but is it really a 6 (post surg.). None of this is said in any way to scare you. Those who know me on this site know I am "glass is half full".....You need to sit down, do your homework, ask any questions you need, and make a decision. Do not let your low numbers lull you in any way into a false sense of comfort. Hate to tell you, but you really don't know the whole picture right now. Hope this helps.

    No rush, but
    ob66,

    You make a good point. There seem to be a lot of folks whose post surgery Gleason was different than their pre surgery score. Guess if you don't choose the surgery, you will never know what the actual Gleason is (or would have been). So regardless of the course of treatment you choose, while you are making decisions using all the info you have, a pre surgery Gleason may not in fact reflect the complete picture? That's not a good thing, is it?

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member

    No rush
    DR gave good advice.......your number is low so you do not have to rush to make a decision on treatment..since your numbers are low, you are an excellent candidate for every treatment type

    Some comments about one of the choices, Active Surveillance which I have choosen, the criteria is generally 3+3=6 with three cores or less positive with 50 percent or less involvement in each, and a low steady psa....Now I was diagnosed at 66 so I was 10 years older than you with to my knowledge no family history.

    Some questions and comments:

    How is your general health?

    Where do you live? There is a good chance that there are posters in your general area who can direct you to support group, which for the most part give very useful medical information and direction to medical expertise.

    For your information, here is information about what I have been doing, and a study which supports Active Surveillance which you may or may not be a candidate because of your age. On the other hand be advised that there are men who are younger than you with worse numbers who are on active surveillance. If active surveillance might be a treatment that is of interest, I suggest that you speak to a physician who specializes in active surveillance for prostate cancer.

    My doings/Study

    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(tesla 1.5) 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
    Entered in a research study for active surveillance at UCLA.
    PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
    June 2010 ...MRI(tesla 3.0)
    June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
    Johns Hopkins.......second opinion confirm no cancer

    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 slides 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.

    No rush
    Hopeful, thanks for all the info. I can see you have put in the time to evaluate your situation and make choices that make sense to you. I can respect that. I'm sure that reaching a certain comfort level regarding your doctor's ability and effectiveness in monitoring your status is key to your AS choice. I would love to delay radical treatment for years and still feel that I'm not squandering my best opportunity to treat/cure PC.

    I have also found a local support group that will be meeting in the next week or so. I'm looking forward to hearing some of the local knowledge about drs and facilities.

    Thanks again for your input.

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member
    Kongo said:

    Welcome
    Welcome to the forum, Mac. I’m sorry that you’re here but this is a great place to begin learning about what options you have and learn from the experiences of others who have traveled a similar path.

    My pathology was very similar to yours, relatively low PSA, only a single biopsy core positive with 15% involvement, DRE normal, no physical symptoms and staged at T1c. As others have suggested, you have time to study and make an informed decision about which course of treatment is best for you. Your statistics are very positive in that you are probably an ideal candidate for almost any treatment option you choose.

    In my own case I read several books about prostate cancer, consulted with six specialists, and read dozens of papers and studies before making a decision. Since there are so many options to deal with this disease, it can sometimes be frustrating when comparing all the alternatives and you will be given plenty of conflicting advice from doctors and survivors alike about the best course of action.

    Many prostate cancer survivors are frequently quite passionate about the various choices of treatment so it is very important to be skeptical and do your own research. Only you can make the best decision for you.

    I found it useful to organize all of my medical records in a single folder and summarize all of the relevant information about prostate cancer so that it was readily available when doing my research or meeting with a specialist. I also found it absolutely essential to take along my wife during the consultations because there is so much information being put out you will need someone else to help you take notes. You may want to consider recording your consultations.

    I would suspend judgment on radiation based on your father’s situation until you have done your own research and met with specialists. The technology delivering radiation today is much more accurate than even a few years ago and while there are potential significant side effects with almost any treatment, many modern radiation treatments have less severe side effects that some other treatment modalities.

    I would also recommend that you talk to more than just two doctors. Keep in mind that most urologists have a surgical background and that over 90% of them will recommend surgery. Radiologists, not surprisingly, tend to want to put you in the microwave. As a minimum I would talk to or at least research thoroughly an open surgery advocate, a robotic advocate, a specialist in brachytherapy who is also familiar with HDR brachytherapy, proton options, IMRT/SGRT/XBRT/SBRT radiation options, HIFU, and cryosurgery. Many specialists with national renown will do telephone consultations but if possible, I think it’s best to meet them face-to-face. I would also suggest that you get a second opinion on your biopsy.

    Good luck to you in your research and keep us posted on your progress.

    ==========================================
    Age at Dx: 59. PSA 4.3 which dropped to 2.8 before treatment following the elimination of dairy in diet. 1 of 12 cores positive at 15% involvement. Gleason 3+3=6. DRE normal. Stage T1c. No physical symptoms or family history of PCa.

    Treatment: SBRT radiation delivered by CyberKnife system in June 2010. Side effects from treatment: None

    Welcome
    Thanks Kongo - lots of really good suggestions and info. I've already seen the need for organizing all the info and records, and no doubt that my wife is an essential companion for important meetings. I agree that my dad's treatment probably has little to do with radiation treatments of today, so I will give them a good look. I have found that there is a center with CyberKnife near me, so I will definitely talk to them about it and other options.

    If you don't mind my asking, with CyberKnife apparently being a fairly new option, how much info is available about future results? How many years out have they been able to study so far. Or, was your dr able to give you an opinion about the likely effectiveness of the treatment in your particular case? (Just trying to get a handle on how "speculative" the info you get is likely to be.)

    Thanks again.

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member
    Beau2 said:

    Side effects
    Mac,

    You indicated that that you were concerned about side effects. The following link will give you some pretty good information on Prostate Cancer treatment side effects. It contains three lectures by Dr. John P. Mulhall author of the book "Saving Your Sex Life, A guide for men with prostate cancer".

    www.mskcc.org/mskcc/html/94910.cfm

    Side effects
    Thanks. Those are very good. Simple enough to understand but detailed enough to explain how things work.

    Mac
  • MCinNC
    MCinNC Member Posts: 40 Member

    Seriously Consider CyberKnife
    Your stats are very similar to mine and I did a tremendous amount of research that I had to hunt and peck for in order to find out about ALL of the currently available options.

    You already seem to have a good overview of what's available. Surgery (open or robotic) is still the most often recommended treatment BUT it is also the treatment with the greatest potential for negative side effects -- particularly urinary and ED related. You seem skeptical about radiation but Brachytherapy (BT) has now been used for years w/success with relatively few serious side effects. However, Proton Beam Therapy (PBT) and CyberKnife (CK) has also made huge advances in the application of radiation in order to treat PCa with minimal side effects. So, don't neglect to look into both of those methods.

    FWIW, I and a few others hear (including Kongo and ViperFred, whose stats are similar to ours) chose CK over all other methods. Of tThe 3 men I spoke w/personally who received CK in the past 2 years, experienced NO serious side effects; the 3rd man had some urinary tract problems after 18 months, which resolved themselves after additional treatment. ViperFred, who also received treatment about 2 years ago, also reports here that he has had NO negative side effects, as does Kongo who was treated just a month or so ago.

    I am going to begin my CK treatments on September 15th and hope to report similar results as the men above.

    Good luck!

    Seriously
    Best of luck with the upcoming CK treatments. I bet it there is considerable relief once you have done your homework and are prepared to actually make a treatment decision and get on with it. I'll definitely give CK a good look. Hope you get great results.

    Mac
  • Kongo
    Kongo Member Posts: 1,166 Member
    MCinNC said:

    Welcome
    Thanks Kongo - lots of really good suggestions and info. I've already seen the need for organizing all the info and records, and no doubt that my wife is an essential companion for important meetings. I agree that my dad's treatment probably has little to do with radiation treatments of today, so I will give them a good look. I have found that there is a center with CyberKnife near me, so I will definitely talk to them about it and other options.

    If you don't mind my asking, with CyberKnife apparently being a fairly new option, how much info is available about future results? How many years out have they been able to study so far. Or, was your dr able to give you an opinion about the likely effectiveness of the treatment in your particular case? (Just trying to get a handle on how "speculative" the info you get is likely to be.)

    Thanks again.

    Mac

    SBRT
    Mac,

    CyberKnife is just one form of Stereotatic Body Radiation Treatment (SBRT) that is used to treat tumors in several parts of the body. Some confusion exists because of the names…CyberKnife is not a unique treatment per se, it is a method of delivery that uses a system called CyberKnife which was developed by the Accuray Company. Other trade names that provide essentially the same delivery methods include Novalis and there may be others as well that I am not as familiar with.

    The advantage of the CyberKnife and similar systems is that the medical team can deliver a higher dose of radiation in a shorter period of time because of its high degree of accuracy and its ability to track in real time organs that move in the body due to respiratory or other factors, such as the prostate, and adjust for that movement to minimize radiation to nearby organs and tissue. Typically, a SBRT dose is delivered in five fractions, or sessions, and delivers a relatively high radiation dose (35-38 Gy) to the prostate. It tracks the movement of the prostate in real time and shuts down the machine if the prostate moves beyond the limits it can compensate for and waits until the organ is back in a position where it can be safely irradiated without harming surround tissue or organs. Other methods of delivering radiation only adjust for prostate position once per session or uses other methods (like inserts in the colon) to attempt to stabilize prostate movement.

    The radiation plan used on my prostate emulates a procedure known as HDR brachytherapy, where tiny radioactive rods are inserted and then removed in the prostate based on the anatomy of the individual patient. This process also involves delivering a high dosage of radiation in a relatively short time but the delivery method requires a couple of hospital stays and the patient ends up with his legs in a stirrup for the weekend while the rods are inserted and removed based on the radiation plan. There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKinfie trials that emulate HDR brachytherapy show initial results virtually identical results. There are also less frequent and less severe side effects, compared to many other treatments, with respect to incontinence and erectile function with over 80% of the men who were potent before the procedure being potent afterward. Most incontinence issues, if any, involve a sense of urgency in needing to urinate which almost always resolve themselves within a few weeks of treatment.

    My doctor told me those men with potency issues before treatment will likely have some issues after treatment and those without issues, generally do not have post-treatment issues. Same with incontinence and that was the case in my situation.

    There are a number of published studies about the effectiveness of Cyberknife for prostate cancer since it was first developed at Stanford in 2004. The manufacturer of the system, Accuray, has many of the studies to date in one place but since it is the manufacturer and obviously has a vested interest, I would extend my search beyond the manufacturer, although I think this one is pretty balanced. It’s important when looking at this to keep in mind that SBRT, regardless of delivery method, is an enhanced form of radiation treatment which delivers a very precise dose to the prostate at levels that have proven to be very successful in the long term. What you are really comparing here is the use of ion radiation versus some other method such as surgery or HIFU, or proton radiation. Each has its pros and cons.

    I suggest you google HDR brachytherapy and read more about the long term prognosis of that treatment when you consider CyberKnife, Novalis, or other ways to deliver SBRT as several studies have shown that SBRT can deliver pretty much the same dosage to the prostate with less hassle.

    There is also a physician moderated forum at www.cyberknife.com that I found helpful in answering my technical questions. Of course they are CyberKnife doctors and have a bias, but I think if you read their comments to questions that you will appreciate the balanced approach.

    While I am obviously happy with my treatment choice so far, I would encourage you to look closely at several methods of treatment before narrowing down your choices. You are lucky in that your cancer was detected early and appears to be fairly low risk, at least at this point. Each modality has its advantages and disadvantages and you need to weigh those against your own priorities, health, outlook on life, and so forth.

    One thing about studies to keep in mind. If you're expecting to wait ten years to see if something works or not, you'll find yourself using ten year old technology. Technical improvements in this field are coming out every day and in many different forms. There are very few head-to-head comparisons of treatments because it is very expensive to do, and difficult to accomplish given the wide degree of factors. I think you should read all the studies you can, but use a high degree of common sense when evaluating the data. In my case, for example, I paid less attention to studies completed in the 90s or before 2005 than I did to studies afterward. I personally like technology but obviously you have to be careful and not buy any snake oil if you don't want snakes.

    Hope this helps.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Kongo said:

    SBRT
    Mac,

    CyberKnife is just one form of Stereotatic Body Radiation Treatment (SBRT) that is used to treat tumors in several parts of the body. Some confusion exists because of the names…CyberKnife is not a unique treatment per se, it is a method of delivery that uses a system called CyberKnife which was developed by the Accuray Company. Other trade names that provide essentially the same delivery methods include Novalis and there may be others as well that I am not as familiar with.

    The advantage of the CyberKnife and similar systems is that the medical team can deliver a higher dose of radiation in a shorter period of time because of its high degree of accuracy and its ability to track in real time organs that move in the body due to respiratory or other factors, such as the prostate, and adjust for that movement to minimize radiation to nearby organs and tissue. Typically, a SBRT dose is delivered in five fractions, or sessions, and delivers a relatively high radiation dose (35-38 Gy) to the prostate. It tracks the movement of the prostate in real time and shuts down the machine if the prostate moves beyond the limits it can compensate for and waits until the organ is back in a position where it can be safely irradiated without harming surround tissue or organs. Other methods of delivering radiation only adjust for prostate position once per session or uses other methods (like inserts in the colon) to attempt to stabilize prostate movement.

    The radiation plan used on my prostate emulates a procedure known as HDR brachytherapy, where tiny radioactive rods are inserted and then removed in the prostate based on the anatomy of the individual patient. This process also involves delivering a high dosage of radiation in a relatively short time but the delivery method requires a couple of hospital stays and the patient ends up with his legs in a stirrup for the weekend while the rods are inserted and removed based on the radiation plan. There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKinfie trials that emulate HDR brachytherapy show initial results virtually identical results. There are also less frequent and less severe side effects, compared to many other treatments, with respect to incontinence and erectile function with over 80% of the men who were potent before the procedure being potent afterward. Most incontinence issues, if any, involve a sense of urgency in needing to urinate which almost always resolve themselves within a few weeks of treatment.

    My doctor told me those men with potency issues before treatment will likely have some issues after treatment and those without issues, generally do not have post-treatment issues. Same with incontinence and that was the case in my situation.

    There are a number of published studies about the effectiveness of Cyberknife for prostate cancer since it was first developed at Stanford in 2004. The manufacturer of the system, Accuray, has many of the studies to date in one place but since it is the manufacturer and obviously has a vested interest, I would extend my search beyond the manufacturer, although I think this one is pretty balanced. It’s important when looking at this to keep in mind that SBRT, regardless of delivery method, is an enhanced form of radiation treatment which delivers a very precise dose to the prostate at levels that have proven to be very successful in the long term. What you are really comparing here is the use of ion radiation versus some other method such as surgery or HIFU, or proton radiation. Each has its pros and cons.

    I suggest you google HDR brachytherapy and read more about the long term prognosis of that treatment when you consider CyberKnife, Novalis, or other ways to deliver SBRT as several studies have shown that SBRT can deliver pretty much the same dosage to the prostate with less hassle.

    There is also a physician moderated forum at www.cyberknife.com that I found helpful in answering my technical questions. Of course they are CyberKnife doctors and have a bias, but I think if you read their comments to questions that you will appreciate the balanced approach.

    While I am obviously happy with my treatment choice so far, I would encourage you to look closely at several methods of treatment before narrowing down your choices. You are lucky in that your cancer was detected early and appears to be fairly low risk, at least at this point. Each modality has its advantages and disadvantages and you need to weigh those against your own priorities, health, outlook on life, and so forth.

    One thing about studies to keep in mind. If you're expecting to wait ten years to see if something works or not, you'll find yourself using ten year old technology. Technical improvements in this field are coming out every day and in many different forms. There are very few head-to-head comparisons of treatments because it is very expensive to do, and difficult to accomplish given the wide degree of factors. I think you should read all the studies you can, but use a high degree of common sense when evaluating the data. In my case, for example, I paid less attention to studies completed in the 90s or before 2005 than I did to studies afterward. I personally like technology but obviously you have to be careful and not buy any snake oil if you don't want snakes.

    Hope this helps.

    Mr. Kongo
    "There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKnfie trials that emulate HDR brachytherapy show initial results virtually identical results."

    Some questions,

    What is the treatment option for the patients who do not achieve success in Brachy and in Cyberknife?

    Is there a difference of successes among doctors who do these therapies?

    How long does it generally take to see negative side effects for brachy and for cyberknife?

    What are the differences between cyberknife and brachy, as far as side effects?

    Brachytherapy and IMRT are sometimes combined; is Cyberknife ever combined with other treatment?

    Thanks,

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    MCinNC said:

    No rush
    Hopeful, thanks for all the info. I can see you have put in the time to evaluate your situation and make choices that make sense to you. I can respect that. I'm sure that reaching a certain comfort level regarding your doctor's ability and effectiveness in monitoring your status is key to your AS choice. I would love to delay radical treatment for years and still feel that I'm not squandering my best opportunity to treat/cure PC.

    I have also found a local support group that will be meeting in the next week or so. I'm looking forward to hearing some of the local knowledge about drs and facilities.

    Thanks again for your input.

    Mac

    Mac
    " I would love to delay radical treatment for years and still feel that I'm not squandering my best opportunity to treat/cure PC."

    The study that I brought to your attention indicates that one can delay treatment with little risk to treatment when and if necessary. That is my intention. I hope to delay treatment for years, or indefinately if possible. As you can see my numbers are similar to yours.

    was told by two diffent docs that I probably
    have indolent cancer, not likely to spread. The first doc is a premier surgeon, who I initially came to with the intention of treating by surgery.....he refused to discuss surgery but told me that he believe that I had indolent cancer. He wanted me to get an MRI with a spectoscopy which showed no nodule involvement or extra capular involvement...staged t1.

    In order to be accepted to the active surveillance study that I am in, I was closely screened. The doc that runs this is very optimistic that I have indolent cancer as well.

    I strongly suggest that you have an MRI with a spectroscopy with a tesla machine which only some major hospitals have. This will really let you know where you stand so you can make the best choice in a treatment option.,

    Ira
  • Kongo
    Kongo Member Posts: 1,166 Member

    Mr. Kongo
    "There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKnfie trials that emulate HDR brachytherapy show initial results virtually identical results."

    Some questions,

    What is the treatment option for the patients who do not achieve success in Brachy and in Cyberknife?

    Is there a difference of successes among doctors who do these therapies?

    How long does it generally take to see negative side effects for brachy and for cyberknife?

    What are the differences between cyberknife and brachy, as far as side effects?

    Brachytherapy and IMRT are sometimes combined; is Cyberknife ever combined with other treatment?

    Thanks,

    Ira

    Great Questions
    Ira,

    Great questions and I’ll try to respond with what I know but you’re really plumbing the depths of my technical knowledge here. BTW, I know that you are tied into UCLA with your AS protocol and they have an excellent SBRT group there, including Dr. Christopher King who developed the CK protocol at Stanford and did the first CK study. I’d suggest that you talk to those guys the next time you go in for a visit. I believe UCLA uses the Novalis system not CK to deliver SBRT but the answers to your questions would pretty much be the same.

    First, a note about terminology. Brachytherapy is the permanent implant of radioactive seeds in the prostate using either iodine or palladium isotopes. HDR brachy involves the insertion and removal of tiny radioactive rods or wires in the prostate using a much more powerful isotope. Also, HDR brachy is frequently used for patients with a much later stage cancer than that typically treated with CK which mostly targets men with early detected, low risk cancer characterized by a PSA <= 10, Gleason <7, and Stage 1 or 2. This makes head-to-head comparisons awkward as they are used to treat different degrees of cancer.

    If radiation fails, follow on treatments include hormone therapy, chemotherapy, cryosurgery, and even orchiectomy. I suppose the new Provenge drug might also be an option. Surgery is an option but radiation frequently causes scarring which would make surgery more difficult and increase the likelihood of long term urinary and ED issues, although SBRT delivers dosage so accurately that I think it would be less of an issue than other forms of radiation. There is not much in the literature about surgery after SBRT or HDR brachytherapy as it has such a high success rate. The sad note here is that if this doesn't work, the patient may be one of the unfortunate oncs who has an aggressive type of PCa that is not going to respond well to any treatment modality.

    I think it’s obvious that any person seeking treatment will want to get the most experienced medical team possible to perform the procedure but I haven’t seen any studies that show a difference between centers performing SBRT like the studies showing the importance of the number of procedures performed with DaVinci, for example. SBRT involves a team approach involving your radiologist, a nuclear oncologist, and a dosimertrist. The delivery system, either CK or Novalis, or some other system pretty much does all the work in dose delivery and barring a major mechanical malfunction, they pretty much do what they’re programmed to do. One of the reasons I chose CK over Novalis is that the CK center had a lot more experience than the newly installed Novalis system at the center I consulted with.

    Typically, radiation side effects manifest themselves much further out from the procedure than with say surgery. Immediate side effects, if any, include a sense of urgency regarding urination which tends to resolve itself within a few weeks and can be treated with ibuprofen or other anti-swelling drugs, or Flomax. There is a small percentage of men who develop minor rectal toxicity (bleeding) that also tends to resolve itself rather quickly but sometimes needs treatment (similar to what they do if they find a polyp in a colonoscopy). There is also the potential for long term potency issues but these are treated with drugs like Viagra. A recent study out of a CK center in Naples, FL indicated that at three years, 82% of the men were fully potent but that there was an increase in the use of Viagra like drugs. This is one area that is really hard to measure. A man’s sexual function often decreases with age regardless of whether or not he has cancer and I seem to recall that the median age for men having CK is mid-60s. Increasingly, older men also have diabetes or obesity issues which can also affect sexual function so sorting out what caused what is a difficult issue. Brachytherapy (seeds) can have an additional side effect of having a seed migrate that can lay up against the urethra or colon wall causing more significant problems, although I believe this is pretty rare. I also seem to recall that ED and incontinence issues are more prevalent with seeds than SBRT but not by that much.

    CK is frequently used in conjunction with IMRT to treat prostate cancer. CK can also be used to treat identified METS that occur beyond the prostate region.

    Hope this answers your questions to some degree. Others who have had CK or some other form of SBRT may wish to chime in here. Again, with these very technical questions, I would consult with a specialist before going to the bank on any of these answers.
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Treatments
    I have been reading about the treatment options open to you.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member

    Mr. Kongo
    "There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKnfie trials that emulate HDR brachytherapy show initial results virtually identical results."

    Some questions,

    What is the treatment option for the patients who do not achieve success in Brachy and in Cyberknife?

    Is there a difference of successes among doctors who do these therapies?

    How long does it generally take to see negative side effects for brachy and for cyberknife?

    What are the differences between cyberknife and brachy, as far as side effects?

    Brachytherapy and IMRT are sometimes combined; is Cyberknife ever combined with other treatment?

    Thanks,

    Ira

    After CK What?
    Here's what my radiation oncologist (RO) told me when I asked him: "What if CK fails?"

    He told me would not re-administer CK but would recommend Brachytherapy (BT) as a followup to CK failure. However, you won't know if CK fails unitl at least 1-2 years after establishing a consistently rising (instead of declining) PSA over time and after a subsequent biopsy. After BT, surgery generally is not recommended (but not inconceivable) because of tissue damage caused by radiation. So, IMRT, EBRT, hormonal therapy and/or chemotherapy would be the more likely followup treatments to BT, depending on whether the cancer has spread or not. BTW, my RO would not recommend cyrotherapy, as a follow-up treatment, because of the substantial and indiscrinate tissue damage it causes; particularly to vascular structures (like the vascular bulb) critical to erectile function.

    The side effects for BT & CK are similar, but it appears based on anecdotal reports (that I've received) that CK side effects are minimal when compared w/BT.

    BT has potentially greater negative urinary, rectal and ED side effects than CK because the radiation in the seeds affects the surrounding area indiscriminately and improperly placed seeds (eg., too high a radiation amount placed too close to critical structures, such as the rectum, vascular bulb and urethra, may cause greater unintended tissue damage to those structures than CK will, given the greater precision of radiation delivery available w/CK. For example, if you can't pee immediately after the seeds are placed, you will have to wear a catheter for a couple of weeks (or more) until urinary function is restored; a catheter is not required for CK treatment because the trauma to urinary function is minimized by CK.

    Negative radiation side effects in BT and/or CK will be seen w/in 1-2 years, because it takes time for the radiation to break down the negatively affected tissues. This is also the time when you may see a PSA "bump" (increase) w/BT and/or CK, which should reverse itself if all is well or continue to increase if all is not well.

    I hope these additional comments are helpful.