Just found out I've got Prostate Cancer

SLONG1958
SLONG1958 Member Posts: 14
Hi everyone I just turned 53 3/2/11 on March 11 I was told I have Prostate Cancer. It all started when I went to the Doctor because my right testicle was hurting.Had blood,urine test done along with PSA test.Doctors nurse called and told me I needed to get and 2nd opinion because my PSA was slightly elevated.I talked to my Doctor and my PSA went from 3.1 to 4.9 took antibiotic for 10 day and had PSA check again it went down to 4.2.The urologist said I needed to get a biopsy.Had the biopsy the results was 1 of 12 samples had cancer cells Gleason score 3+3=6 stage T1C PSA 4.5 I don't know the percentage of cancer cells.The day I talked to the Doctor he explained everything pretty good gave me some books to read and a web site to check out and wants to see me in about 2 to 3 weeks to discuss treatment.Had ultra sound on testicle came back as something like a Varicose vein no lumps or mass Doctor said one is not related to the other. I need info on treatment oppositions for PC before I talk back with the Doctor.Also need to know if I should get a 2nd opinion on the Gleason score.
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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    All treatments would do fine in your case
    Slong

    Your diagnosis sets you in the low risk patients group. All treatments would do fine in your case.
    Do not rush into a treatment without knowing the side effects caused by each one.
    2 or 3 weeks may be not sufficient for you to reach to such a decision on a treatment option. You can gather information and prepare a list of questions for your next visit but you do not need to have a definite answer on that “date”.
    Second opinion is always a good advice if we are not comfortable with the laboratory where the samples were analysed. If you think in going through AS (active surveil-lance) I would suggest you to get a second opinion for a detailed report.

    When I was told that I had PC (a healthier 50 years old), I enter into denial and did two extra biopsy cores in another hospital to certify that in fact there were no mistake in the pathologist report, from that date I educated myself into prostate cancer treat-ments, got second opinions from urologists, radiologists and oncologists, and decided on a treatment 2.5 month later.

    I would suggest you google in the net “Treatments for Prostate Cancer” and to read about their side effects in this site;
    (http://books.google.com/books?id=osljPWfipEIC&pg=PA74&lpg=PA74&dq=side+effects+of+treatments+for+prostate+cancer&source=vrt&ots=RISj2siK4a&sig=vX0vzY0X3bNuTG8Iev2VS0dcnK4&hl=en&ei=9Zp-TfiFII2XhQfJn8ixBw&sa=X&oi=book_result&ct=result&resnum=13&ved=0CIIBEOgBMAw#v=onepage&q=side effects of treatments for prostate cancer&f=false)

    Hope that other guys here will feed in more opinions.

    Welcome to the board.
    Wishing you the best.
    VGama
  • Trew
    Trew Member Posts: 932 Member
    If you have good insurance-
    If you have good insurance- please do some research on proton Threapy. Your surgery/urologist won't like proton therapy, but the men with low- mid grade gleasons love proton therapy. You should contact Loma Linda University- proton therapy and at least get the free book they send out on request.

    Imagine a treatment with little to no side effects. surgery is always risky. leaking and sexual dysfunction are always a real possiblity, too. Please, check into proton therapy. You are in no immediate danger and you have the time to investigate and geet options.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    It's
    very important to send the slides to a different pathologist in order to get a second opinion of the biopsy slides so that you are not over or under treated....there are only a few in the country who are experts...Boswich is one.

    You need to have a written copy of all your records , so if you see other doctors , it will be available. Also you will be able to use this in your research.

    Tell us , what is the percent involvement of the core that was 3=3+6.

    What have your PSA results been during the last few years; has it been steady or rising, and at what rate. there are sites that will calculate this.

    You are in no rush to make a decision about treatment, but keep on doing your research....right now, they all want to treat you since you are a good candidate for all of them.....be cautioned that there are many who are money oriented, and really do not have your best interest at heart.

    you have come to a good site.
  • lewvino
    lewvino Member Posts: 1,010 Member
    Slong,
    Sorry to hear about

    Slong,
    Sorry to hear about your diagnosis but you have found a great forum! The good news is that they have found your cancer at an early state. I was age 54 when I found out about my cancer a gleason 7 and doing great post treatment. Each person has different opinions on treatment options and they all have the same goal....getting rid of the cancer.

    My dad had Proton treatment for his prostate cancer and I had the Davinci. Others are having great success with Cyperknife. Explore all the options and consider the side effects when making your decision.

    Larry
  • SLONG1958
    SLONG1958 Member Posts: 14
    lewvino said:

    Slong,
    Sorry to hear about

    Slong,
    Sorry to hear about your diagnosis but you have found a great forum! The good news is that they have found your cancer at an early state. I was age 54 when I found out about my cancer a gleason 7 and doing great post treatment. Each person has different opinions on treatment options and they all have the same goal....getting rid of the cancer.

    My dad had Proton treatment for his prostate cancer and I had the Davinci. Others are having great success with Cyperknife. Explore all the options and consider the side effects when making your decision.

    Larry

    UPDATE
    Hi to everyone
    Just received the Biopsy report in the mail.You guys wanted to know the percentage if I'm looking at this right it's 4%.Can somebody please explain this,and give me some treatment oppositions.The 4% is on the picture of the prostate along with 3+3 also looks like I have one core that was borderline.The cores are not together one is in the upper left corner the other is in the lower right corner this is the borderline one.

    Pathologists Analysis
    Summary Diagnosis
    Adenonocarcinoma involving LLB
    Gleason Score 3+3=6
    Tumor length/Core length 0.5mm/105mm (<1%)
    Core involved 1
    Core Examined 13

    Coments
    Immunoperoxidase stains for the prostate triple panel(p504s,p63 and cytokeratin 34be12)were
    performed on LLB and RLA.The immunostains conffirm the diagnosis of adenocarcinoma in LLB.
    The focus of atypical small acini in RLA shows lack of basic cells,however it is to small for a more definitive diagnosis. Control slides were performed and are satisfactory. The specimen was described and processed at Conrad Pearson Clinic, 125 Guthrie Drive, Southaven, MS 38671 and labeled as CP11-215. The specimen was received with Oncofix II fixative and is labeled with biopsy site(s) and patient's identification. All jars contain soft white cores of tissue. Each specimen is entirely submitted for sectioning and the fixative fluid is processed into cytospin slides. For a detailed description, please see the gross section. DNA testing is being performed on block LLB. The results of this DNA test will follow at a later date.
  • lewvino
    lewvino Member Posts: 1,010 Member
    SLONG1958 said:

    UPDATE
    Hi to everyone
    Just received the Biopsy report in the mail.You guys wanted to know the percentage if I'm looking at this right it's 4%.Can somebody please explain this,and give me some treatment oppositions.The 4% is on the picture of the prostate along with 3+3 also looks like I have one core that was borderline.The cores are not together one is in the upper left corner the other is in the lower right corner this is the borderline one.

    Pathologists Analysis
    Summary Diagnosis
    Adenonocarcinoma involving LLB
    Gleason Score 3+3=6
    Tumor length/Core length 0.5mm/105mm (<1%)
    Core involved 1
    Core Examined 13

    Coments
    Immunoperoxidase stains for the prostate triple panel(p504s,p63 and cytokeratin 34be12)were
    performed on LLB and RLA.The immunostains conffirm the diagnosis of adenocarcinoma in LLB.
    The focus of atypical small acini in RLA shows lack of basic cells,however it is to small for a more definitive diagnosis. Control slides were performed and are satisfactory. The specimen was described and processed at Conrad Pearson Clinic, 125 Guthrie Drive, Southaven, MS 38671 and labeled as CP11-215. The specimen was received with Oncofix II fixative and is labeled with biopsy site(s) and patient's identification. All jars contain soft white cores of tissue. Each specimen is entirely submitted for sectioning and the fixative fluid is processed into cytospin slides. For a detailed description, please see the gross section. DNA testing is being performed on block LLB. The results of this DNA test will follow at a later date.</p>

    Slong: As I'm sure you know
    Slong: As I'm sure you know your cancer has been found VERY, VERY Early. A typical core sampling is 12-13 cores and cancer only found in 1 of the cores. However remember that it's a hit and miss type of sampling. They might hit it or they might miss.
    You mention upper left corner and lower right corner. Assuming that the lower is at the bottom of the prostate this would be in the prostate bed area. This is a common area for the cancer to be found and can spread to the prostate bed and beyond. In my case this is the area where I had a positive margin post surgery. This means that cancer was found to the very edge of the speciman after removal.

    I'm not a doctor but in my opinion I would look at either the Proton therapy or the CyperKnife treatment. Proton involves about 35 or so treatments and is offered at about 15 or so centers around the USA with the original center being at Loma Linda California. You can google and find other areas of the country that offer this treatment.

    Several on the forum have recently had CyperKnife and all are reporting good news with this treatment which I believe involves 5 treatments. I had looked at Proton (My insurance would not cover) and also looked at CyperKnife (they wouldn't treat me since I had a gleason 4+3 (7). So I then chose the Davinci Surgery. I've had good results with Davinci but some men do experience side effects such as urinary control and loss of erections.

    Good luck on your journey and I'm sure some others will be offering their thoughs also.

    Larry age 56
  • Kongo
    Kongo Member Posts: 1,166 Member
    SLONG1958 said:

    UPDATE
    Hi to everyone
    Just received the Biopsy report in the mail.You guys wanted to know the percentage if I'm looking at this right it's 4%.Can somebody please explain this,and give me some treatment oppositions.The 4% is on the picture of the prostate along with 3+3 also looks like I have one core that was borderline.The cores are not together one is in the upper left corner the other is in the lower right corner this is the borderline one.

    Pathologists Analysis
    Summary Diagnosis
    Adenonocarcinoma involving LLB
    Gleason Score 3+3=6
    Tumor length/Core length 0.5mm/105mm (<1%)
    Core involved 1
    Core Examined 13

    Coments
    Immunoperoxidase stains for the prostate triple panel(p504s,p63 and cytokeratin 34be12)were
    performed on LLB and RLA.The immunostains conffirm the diagnosis of adenocarcinoma in LLB.
    The focus of atypical small acini in RLA shows lack of basic cells,however it is to small for a more definitive diagnosis. Control slides were performed and are satisfactory. The specimen was described and processed at Conrad Pearson Clinic, 125 Guthrie Drive, Southaven, MS 38671 and labeled as CP11-215. The specimen was received with Oncofix II fixative and is labeled with biopsy site(s) and patient's identification. All jars contain soft white cores of tissue. Each specimen is entirely submitted for sectioning and the fixative fluid is processed into cytospin slides. For a detailed description, please see the gross section. DNA testing is being performed on block LLB. The results of this DNA test will follow at a later date.</p>

    Early Detection
    Slong,

    Welcome to the forum and thanks for sharing the additional information from your biopsy pathology.

    Your diagnosis seems to show a very small amount of prostate cancer with a single core apparently having an involvement of 4%, meaning that 4% of the cells in that core showed adenocarcinoma (the most common form of prostate cancer). Frankly, your pathology could just as easily have missed that small amount of cancer and come back completely negative. Also, it is not uncommon for a biopsy to have one core considered "borderline" and is generally associated with some type of inflammation such as a mild case of prostatitus or some other condition that would have no symptoms.

    As others have pointed out you are in a position to choose between a wide variety of treatment options all of which would promise a high degree of success. Another option that might be appropriate given your pathology would be active surveillance although at your relatively young age I would suspect that at some point, perhaps years and years later (or maybe never) you will find yourself needing to address the cancer.

    At this point you should have enough information to gain some additional insight into your condition. First, calculate your PSA density which is the ration of PSA to prostate volume. The prostate volume should have been determined via the ultrasound probe when they performed the biopsy. A very low PSA density is generally indicative of low risk cancer. If you have a previous history of PSA readings you can calculate your PSA velocity (how quickly your PSA is increasing) and PSA doubling time (which is the length of time it should take for your PSA to double in value). A low PSA velocity and a long doubling time are also indicative of low risk cancer. There are nomograms available on the web at several places that enable you to calculate these values and PSA velocity and PSA doubling times are not strict algebraic relationships but are logarithmic.

    As you consider options please seek second opinions. Urologists are mostly surgeons and statistics show that over 90% of them recommend surgical treatment. Radiologists almost always recommend radiation. One of the frustrating aspects of this disease is the conflicting advice you will get from the various experts in the field. I believe it is important to seek several opinions in order to get a balanced view that will enable you to eventually reach a choice that is best for you, your lifestyle, your personal preferences, and the degree of side effects you’re willing to risk.

    Each treatment will have some degree of side effects that will affect every day for the rest of your life so it is very important that you understand these potential effects and choose according to your values and expectations.

    Besides surgery (open or robotic) and the many different types of radiation treatment (Proton, SBRT, IMRT, IGRT, Brachytherapy, HDR Brachtherapy, EBT, Tomography, and so forth) there are also HIFU (not available in the US), cryosurgery (freezing of the prostate), hormone therapy, as well as a few others. I would recommend reading about these from information readily available on the internet and discuss them with your doctor.

    I also highly recommend that you seek a second opinion on your biopsy. Your doctor can explain how to do this. Since your treatment decision is going to be based on the pathology of your biopsy, it is vital that you have confidence in the results. It is not uncommon for different pathologists to score your cancer cells differently and a different Gleason score or level of involvement can radically change your treatment choices although given your very low risk results I would be surprised if there was a change with a second opinion but it’s better to be safe than sorry in this regard.

    In my own case, I chose CyberKnife radiation treatment with a diagnosis similar to yours (PSA 4.3, Gleason 3+4=6, 1 of 12 cores postive with 15% involvement, negative DRE, no symptoms, no history of PCa in the family). I was diagnosed a year ago this month at age 59. I made my decision after consulting with six specialists which included surgeons, radiologists, and oncologists that specialize in prostate cancer. I also consulted with Loma Linda Medical Center about the proton treatment lewino mentioned. I also read about a dozen books about prostate cancer and dozens of studies about the various treatment methods. I had my treatment in June 2010 (5 radiation sessions, one every other day) and have had no side effects and the results appear to indicate that my cancer has been successfully treated.

    But please do not make a decision based on what someone else has done. Each cancer patient is different and each of us has different needs, expectations, and risk tolerance. Educate yourself and be an informed partner with your medical team.

    Best of luck in your journey,

    K
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    Kongo said:

    Early Detection
    Slong,

    Welcome to the forum and thanks for sharing the additional information from your biopsy pathology.

    Your diagnosis seems to show a very small amount of prostate cancer with a single core apparently having an involvement of 4%, meaning that 4% of the cells in that core showed adenocarcinoma (the most common form of prostate cancer). Frankly, your pathology could just as easily have missed that small amount of cancer and come back completely negative. Also, it is not uncommon for a biopsy to have one core considered "borderline" and is generally associated with some type of inflammation such as a mild case of prostatitus or some other condition that would have no symptoms.

    As others have pointed out you are in a position to choose between a wide variety of treatment options all of which would promise a high degree of success. Another option that might be appropriate given your pathology would be active surveillance although at your relatively young age I would suspect that at some point, perhaps years and years later (or maybe never) you will find yourself needing to address the cancer.

    At this point you should have enough information to gain some additional insight into your condition. First, calculate your PSA density which is the ration of PSA to prostate volume. The prostate volume should have been determined via the ultrasound probe when they performed the biopsy. A very low PSA density is generally indicative of low risk cancer. If you have a previous history of PSA readings you can calculate your PSA velocity (how quickly your PSA is increasing) and PSA doubling time (which is the length of time it should take for your PSA to double in value). A low PSA velocity and a long doubling time are also indicative of low risk cancer. There are nomograms available on the web at several places that enable you to calculate these values and PSA velocity and PSA doubling times are not strict algebraic relationships but are logarithmic.

    As you consider options please seek second opinions. Urologists are mostly surgeons and statistics show that over 90% of them recommend surgical treatment. Radiologists almost always recommend radiation. One of the frustrating aspects of this disease is the conflicting advice you will get from the various experts in the field. I believe it is important to seek several opinions in order to get a balanced view that will enable you to eventually reach a choice that is best for you, your lifestyle, your personal preferences, and the degree of side effects you’re willing to risk.

    Each treatment will have some degree of side effects that will affect every day for the rest of your life so it is very important that you understand these potential effects and choose according to your values and expectations.

    Besides surgery (open or robotic) and the many different types of radiation treatment (Proton, SBRT, IMRT, IGRT, Brachytherapy, HDR Brachtherapy, EBT, Tomography, and so forth) there are also HIFU (not available in the US), cryosurgery (freezing of the prostate), hormone therapy, as well as a few others. I would recommend reading about these from information readily available on the internet and discuss them with your doctor.

    I also highly recommend that you seek a second opinion on your biopsy. Your doctor can explain how to do this. Since your treatment decision is going to be based on the pathology of your biopsy, it is vital that you have confidence in the results. It is not uncommon for different pathologists to score your cancer cells differently and a different Gleason score or level of involvement can radically change your treatment choices although given your very low risk results I would be surprised if there was a change with a second opinion but it’s better to be safe than sorry in this regard.

    In my own case, I chose CyberKnife radiation treatment with a diagnosis similar to yours (PSA 4.3, Gleason 3+4=6, 1 of 12 cores postive with 15% involvement, negative DRE, no symptoms, no history of PCa in the family). I was diagnosed a year ago this month at age 59. I made my decision after consulting with six specialists which included surgeons, radiologists, and oncologists that specialize in prostate cancer. I also consulted with Loma Linda Medical Center about the proton treatment lewino mentioned. I also read about a dozen books about prostate cancer and dozens of studies about the various treatment methods. I had my treatment in June 2010 (5 radiation sessions, one every other day) and have had no side effects and the results appear to indicate that my cancer has been successfully treated.

    But please do not make a decision based on what someone else has done. Each cancer patient is different and each of us has different needs, expectations, and risk tolerance. Educate yourself and be an informed partner with your medical team.

    Best of luck in your journey,

    K

    slong
    Thanks for getting back to us with more information.

    I can only reinforce the information that is provided; the amount of your disease is very small. you need to get a second opinion on your biopsy slides, if you have previous PSA results(which you can get from your primary physician, you can do research with one of the nomograms, and feel free to post here.

    You are definitely a candidate for Active Surveillance.........there are actually doctors who specialize in treating those with Active Surveillance....I strongly suggest that you see one, as least for input. ...the advantage of active surveillance is that there you will not experience any side effects from treatment....there are many at your age who are in Active Surveillance programs.

    My treatment choice is Active Surveillance. I was diagnosed two years ago, at my 66 birthday.. If you click my name, you will see what I have done, and study documentation that support this treatment.....

    You are definately in no rush to treat....but, you neee to do a lot of research, so you know what you are doing, and are comfortable with your choice.

    Suggest that you go to local support group and read, read.....

    .
  • SLONG1958
    SLONG1958 Member Posts: 14

    slong
    Thanks for getting back to us with more information.

    I can only reinforce the information that is provided; the amount of your disease is very small. you need to get a second opinion on your biopsy slides, if you have previous PSA results(which you can get from your primary physician, you can do research with one of the nomograms, and feel free to post here.

    You are definitely a candidate for Active Surveillance.........there are actually doctors who specialize in treating those with Active Surveillance....I strongly suggest that you see one, as least for input. ...the advantage of active surveillance is that there you will not experience any side effects from treatment....there are many at your age who are in Active Surveillance programs.

    My treatment choice is Active Surveillance. I was diagnosed two years ago, at my 66 birthday.. If you click my name, you will see what I have done, and study documentation that support this treatment.....

    You are definately in no rush to treat....but, you neee to do a lot of research, so you know what you are doing, and are comfortable with your choice.

    Suggest that you go to local support group and read, read.....

    .

    2nd Opinion on biopsy
    Hi to everyone and thanks for all the support.I need to know other places I can send my biopsy slides to for 2nd opinion.I live near Memphis is there any close there and is there any Top notch Cancer Centers close.We've got the best in ST JUDE for children but I don't know of any for adults.How many of you went to a Cancer Center instead of a regular urologist office.I've been going to The Conrad/Pearson Group in Memphis.They seem to be good people and what I've learned they do alot with Prostate Cancer.I wake up at night with all sorts of questions.I've got a lawn company so I'm starting to work alot now it keeps my mind clear, but at night when I'm in bed is another question.The thing is I just don't know what to do.I'm married and my wife is great and she has been a big help.There is no PC at all in my family my Dad will turn 89 in April his dad was 86 before he passed my Mom was 84 before she passed last year her Mom was in her mid 80s.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    SLONG1958 said:

    2nd Opinion on biopsy
    Hi to everyone and thanks for all the support.I need to know other places I can send my biopsy slides to for 2nd opinion.I live near Memphis is there any close there and is there any Top notch Cancer Centers close.We've got the best in ST JUDE for children but I don't know of any for adults.How many of you went to a Cancer Center instead of a regular urologist office.I've been going to The Conrad/Pearson Group in Memphis.They seem to be good people and what I've learned they do alot with Prostate Cancer.I wake up at night with all sorts of questions.I've got a lawn company so I'm starting to work alot now it keeps my mind clear, but at night when I'm in bed is another question.The thing is I just don't know what to do.I'm married and my wife is great and she has been a big help.There is no PC at all in my family my Dad will turn 89 in April his dad was 86 before he passed my Mom was 84 before she passed last year her Mom was in her mid 80s.

    Slong
    All of us, including you go thru all the negative feeling for the first two or three months......try to be positive......go to religious services, only if the clergyman is UPBEAT.....exercise helps.....knowledge helps.....wake up each day, and say what can I do that is positive..keep focused on activities, such as your work, or a hobby...avoid negative people.....

    My Father and Male Grand Parents died at an early ages, so there was no PC noted in my family as well....although last year, my 91 year old mother was diagnosed with Breast Cancer...there is a gene that increases the likelihood of either disease....anyway, when I was diagnosed I let my family members who I am not in close contact with know about my diagnosis so they will be more likely to be tested and treated.

    I personally go to a major medical institution...a center of excellence......there are about 50 hopspitals in the USA that are designated cancer centers, and are better equipped than others......many urologists in private practice are not as experienced, especially when it comes to robotic surgery, where there is about a 250 operation learning curve....I don't know anything about the Conrad/Peearson group.

    Also, as far as treatment, you really want the best...so travel if you need to....I'm in CA. so I don't know who the "rock star" doctors are, and where the major centers are located in your area of the country.

    As far as pathology second opinions, there are only about 10 in the USA that excel.....as I mentioned Bostwick is one.......you wil see a list in the books that you read , or check on the internet for more...the pathologist does not have to be local.
  • mrspjd
    mrspjd Member Posts: 694 Member
    SLONG1958 said:

    2nd Opinion on biopsy
    Hi to everyone and thanks for all the support.I need to know other places I can send my biopsy slides to for 2nd opinion.I live near Memphis is there any close there and is there any Top notch Cancer Centers close.We've got the best in ST JUDE for children but I don't know of any for adults.How many of you went to a Cancer Center instead of a regular urologist office.I've been going to The Conrad/Pearson Group in Memphis.They seem to be good people and what I've learned they do alot with Prostate Cancer.I wake up at night with all sorts of questions.I've got a lawn company so I'm starting to work alot now it keeps my mind clear, but at night when I'm in bed is another question.The thing is I just don't know what to do.I'm married and my wife is great and she has been a big help.There is no PC at all in my family my Dad will turn 89 in April his dad was 86 before he passed my Mom was 84 before she passed last year her Mom was in her mid 80s.

    PCa Biopsy 2nd Opinion - Lab Info
    There are only a few labs nationally that are recommended for reviewing your PCa biopsy slides for the purpose of obtaining a 2nd opinion. These labs are well-respected and known for their expertise in reading nothing other than prostate biopsy lab slides--unlike most local labs that read all biopsy samples for every kind of cancer, etc. You only want to send your slides to one of the top rated labs for the 2nd opinion report.

    Here is a link to another recent thread where specific info was provided about several of the labs that specialize in analyzing PCa biopsy slides:

    http://csn.cancer.org/node/212732

    Hope it all works out.
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    mrspjd said:

    PCa Biopsy 2nd Opinion - Lab Info
    There are only a few labs nationally that are recommended for reviewing your PCa biopsy slides for the purpose of obtaining a 2nd opinion. These labs are well-respected and known for their expertise in reading nothing other than prostate biopsy lab slides--unlike most local labs that read all biopsy samples for every kind of cancer, etc. You only want to send your slides to one of the top rated labs for the 2nd opinion report.

    Here is a link to another recent thread where specific info was provided about several of the labs that specialize in analyzing PCa biopsy slides:

    http://csn.cancer.org/node/212732

    Hope it all works out.

    You couldn’t have better advice
    Slong

    You couldn’t have better advice than the ones above.
    Concentrate now on the list of questions to your doctor, and try to consult another specialist to widen your knowledge and possibilities in dealing with the problem. These first “steps” in your course of events with PCa can lead you to success.

    Your DNA results will also give you insights about the characteristics of your cancerous cells. There are certain genes associated with prostate cancer and some genes relate to “indolent” type of cancer. There are many studies on going to address this disease based on gene-therapy too. This is a promising way of treatment in the event of future cancer recurrence (failure of initial treatments), which I hope that it would not be your case.

    Wishing you the best.
    VGama
  • SLONG1958
    SLONG1958 Member Posts: 14

    You couldn’t have better advice
    Slong

    You couldn’t have better advice than the ones above.
    Concentrate now on the list of questions to your doctor, and try to consult another specialist to widen your knowledge and possibilities in dealing with the problem. These first “steps” in your course of events with PCa can lead you to success.

    Your DNA results will also give you insights about the characteristics of your cancerous cells. There are certain genes associated with prostate cancer and some genes relate to “indolent” type of cancer. There are many studies on going to address this disease based on gene-therapy too. This is a promising way of treatment in the event of future cancer recurrence (failure of initial treatments), which I hope that it would not be your case.

    Wishing you the best.
    VGama

    Quality of Life
    Hi to everyone
    Just one question for the guys that have had the Robotic Surgery.Just thinking ahead I haven't made a decision yet.I'm self employed I cut grass and I'll be on a mower for 5 or more hours a day will that be a problem.Its going on 2 weeks now I guess I need to go and talk to my Doctor and see what he has to say.I'm going to call what Family doctor today and get all my PSA Tests for the past 4 years.
  • jminnj
    jminnj Member Posts: 129 Member
    SLONG1958 said:

    Quality of Life
    Hi to everyone
    Just one question for the guys that have had the Robotic Surgery.Just thinking ahead I haven't made a decision yet.I'm self employed I cut grass and I'll be on a mower for 5 or more hours a day will that be a problem.Its going on 2 weeks now I guess I need to go and talk to my Doctor and see what he has to say.I'm going to call what Family doctor today and get all my PSA Tests for the past 4 years.

    Quality of Life
    Slong, welcome to the board, based on what you have said it appears the cancer was caught early.

    I am 48 years old and was diagnosed similar to your results in November of 2009. I was about 20-30 pounds overweight at the time. In prep for the surgery, lost some weight and was operated on Jan 21, 2010. I had the robotic procedure. Within 4 weeks I was able to go back to bowling, and since that time have been working out (walking, running, eliptical machine) for at least 30 min a day, at least 5 times a week. I do more stuff now outside than I used to do. With regard to the incontinence that comes along with the surgery, that pretty much cleared by about 2-3 months post surgery. They will give you exercises to do to strenghten the muscles and those really work. Now I will tell you that I still try to watch myself about how much I drink fluids, types of fluids based on what I am going to be doing. For example, if I am going out to play golf in the early morning, I may lay off that second cup of coffee just to be safe. I actually just came back from a road trip Tennessee to New Jersey (about 10 hours in the car) and stopped only twice.

    Good luck to you. Remember that each of us is different and there is not a one size fits all treatment. Do your research. We all must make our decision based on what is best for us.


    Joe
  • recordal
    recordal Member Posts: 5
    DaVinci Surgery 2 weeks ago
    Hello Slong:

    It is a tough decision for sure. The DVD the ACS sent me was quite helpful.

    My results were very similar to yours. In my case I didn't want surgery due to the incontinence and impotency. The seed implants looked the most attractive. I'm 56, quite healthy overall and sexually. The surgery seemed to be the highest risk for incontinence and impotency.

    However - my final decision was based on:

    1) My father and grandfather died from prostate cancer - ages 60 and 68. My family urged me to 'get rid of the cancer'.

    2) The radiation had higher risk of cancer returning after 10 years.

    3) The radiation would have been long and drawn out.

    4) The radiation causes fatigue. (I'm 'fatigued' enough as it is).

    5) My grandkids couldn't sit on my lap or get too close to me for several months (varying opinions but who wants to take the risk?)

    If it wasn't for reason number 1 I would have gone with the seed implants. The other 4 reasons were just enough to persuade me to choose surgery.

    I'm not happy about wearing 'pads' or about 'penile rehabilitation', but if I live another 20 years it probably was all worth it.

    Good luck and God bless
  • SLONG1958
    SLONG1958 Member Posts: 14
    recordal said:

    DaVinci Surgery 2 weeks ago
    Hello Slong:

    It is a tough decision for sure. The DVD the ACS sent me was quite helpful.

    My results were very similar to yours. In my case I didn't want surgery due to the incontinence and impotency. The seed implants looked the most attractive. I'm 56, quite healthy overall and sexually. The surgery seemed to be the highest risk for incontinence and impotency.

    However - my final decision was based on:

    1) My father and grandfather died from prostate cancer - ages 60 and 68. My family urged me to 'get rid of the cancer'.

    2) The radiation had higher risk of cancer returning after 10 years.

    3) The radiation would have been long and drawn out.

    4) The radiation causes fatigue. (I'm 'fatigued' enough as it is).

    5) My grandkids couldn't sit on my lap or get too close to me for several months (varying opinions but who wants to take the risk?)

    If it wasn't for reason number 1 I would have gone with the seed implants. The other 4 reasons were just enough to persuade me to choose surgery.

    I'm not happy about wearing 'pads' or about 'penile rehabilitation', but if I live another 20 years it probably was all worth it.

    Good luck and God bless

    Quality of Life
    Hi everyone and thanks for helping me.I must be stupid or something but everyone is saying do whats right for me.I'm 53 and I stay busy all the time if I'm not cutting grass I'm working around the house or on my 72 Nova project I'm doing something all the time.My wife and my children want me to get it removed and she understands about the impotency.She said she wants me to live a long life like my Dad and his Dad.I'm more worried about the leaking,is it alot or just a few drops which I do now.Somebody on here wanted to know what my psa levels have been.In 2008 1st psa test 3.1 09 and 10 didn't get one till 1/11 which was 4.9.I can't believe I did't get a blood test in those 2 years.I started going to the Chiropractor for neck and lower back and I told him of my PC diagnose and he said he thinks he can help me with getting adjusted along with vitamins and Alkaline water plus some kind of vitamin especially for the Prostate.He want me to do this for about 2 or 3 month and then get me PSA level checked again.What do you guys think of this.

    Again thanks.
  • Kongo
    Kongo Member Posts: 1,166 Member
    recordal said:

    DaVinci Surgery 2 weeks ago
    Hello Slong:

    It is a tough decision for sure. The DVD the ACS sent me was quite helpful.

    My results were very similar to yours. In my case I didn't want surgery due to the incontinence and impotency. The seed implants looked the most attractive. I'm 56, quite healthy overall and sexually. The surgery seemed to be the highest risk for incontinence and impotency.

    However - my final decision was based on:

    1) My father and grandfather died from prostate cancer - ages 60 and 68. My family urged me to 'get rid of the cancer'.

    2) The radiation had higher risk of cancer returning after 10 years.

    3) The radiation would have been long and drawn out.

    4) The radiation causes fatigue. (I'm 'fatigued' enough as it is).

    5) My grandkids couldn't sit on my lap or get too close to me for several months (varying opinions but who wants to take the risk?)

    If it wasn't for reason number 1 I would have gone with the seed implants. The other 4 reasons were just enough to persuade me to choose surgery.

    I'm not happy about wearing 'pads' or about 'penile rehabilitation', but if I live another 20 years it probably was all worth it.

    Good luck and God bless

    Welcome
    Recordal,

    Welcome to the forum and congratulations on treating your cancer. I hope that you quickly recover from your surgery, regain your continence and erectile function, and enjoy those grandchildren on your lap.

    Without knowing details of your diagnosis it's difficult to comment on your choice other than to say that you appear to have made it based on several priorities you laid out for yourself and that is what I think every man should do as well when facing treatment options.

    I would, however, like to comment on several of your statements from a different point of view. For some of the same priorities you cite, I chose a radiation therapy.

    My family also urged me to "get rid of the cancer" but I came to realize that this was my decision not theirs and that their opinions were driven by a gut-wrenching inate fear of the word "cancer" rather than any informed judgement on prostate cancer. So while I agree that family influences can be a powerful impetus during the decision making process, at the end of the day -- for me at least -- that was not a determining factor.

    Certainly family history plays a big role and the early death of your father and grandfather would weigh heavily on your decision. BTW, how did they treat their cancer?

    There are little comparative studies about prostate cancer biochemical recurrence other than a large study that looked at men who had either RP or radiation treatment in the early 90s. Those were the days before DaVinci or the newer forms of radiation treatment such as SBRT, IMRT, Tomography, HDR brcachtherapy, or IGRT. It makes little sense to compare the EBRT of the early 90s with its broad pelvic dosage patterns to modern radiation techniques that use fractional doses, compensate for prostate movement in real time, and deliver planned dosages with sub-millimeter accuracy. In any event, at the five year point that study shows almost exactly the same BCR rate with either RP or radiation (34% vs. 35%) The ten-year rates do indeed show a higher overall failure rate for radiation (46% to 37%) but there were several factors in this study that were not normalized and again, it was a completely different method of delivery than what is commonly used today.

    The good news with respect to BCR failure rates is that regardless of whether or not you had surgery or radiation treatment, the long term prognosis following recurrence remains very high and only a minority of these men actually die from prostate cancer. In fact, the number one cause of death for men who have been diagnosed with prostate cancer is heart disease.

    While I considered those older studies when I made my choices, it was not a determinant factor as the technology today had moved so far beyond what was in use then both in surgical techniques and radiology. In any case, my priority was in quality of life (not quantity of life) and I too wanted to avoid the risks of incontinence and impotence.

    HDR brachytherapy, a form of radiation that uses temporary radioactive wires inserted in the prostate has nearly a 90% BCR free survival rate at the 10-year point. CyberKnife (a from of SBRT and the method I used to treat my PCa) has 5-year success rates above 90% and since it is modeled on the HDR brachytherapy protocal, it is expected to have similar long term success rates.

    When you say that the radiation would be long and drawn out, I assume you are referring to an IMRT regimen that typically has 40-45 treatment sessions, each one lasting a few minutes. While that is a long time to be going back to the doctor each day, it seems to me it is over at about the same time most men recover from their surgery and get back to a normal life. In my treatment, it was over in 5 sessions and wasn't drawn out at all.

    With respect to fatigue, it is true that some radiation treatments have a mild degree of fatigue associated with the treatment, particularly near the end of a long treatment plan. Not every patient reacts the same way to radiation and some feel no fatigue at all. In my case, I never felt any fatigue. I think most men are pretty fatigued after the major surgery of RP as well. Fatigue from radiation passes within a week or so after treatment is complete.

    The only type of radiation where your grandchildren wouldn't be able to sit on your lap is if you had either the iodine or palladium isotopes inserted in your prostate. The half-life for these isotopes is about two months and the standard rule (at least at the Mayo Clinic) is that young children should not sit on the lap for "prolonged periods" for two months after treatment. I don't know about your grandchildren but mine are pretty hard to keep still for a "prolonged" period in any event. It seems to me that two months is more of an inconvenience rather than "several months" you stated but perhaps it just seems longer when you can't hold them as you would wish. I would also think that tenderness about scar tissue from your surgery will somewhat limit how much sitting or jumping around in your lap by grandchildren.

    I certainly respect your decisions and truly do hope they play out as you expect. But there are always two sides to the story about our treatment choices and I've learned to greatly discount over generalizatons about prostate cancer treatments and their effects.

    Best wishes for a full and speedy recovery and I look forward to your future posts.

    K
  • Kongo
    Kongo Member Posts: 1,166 Member
    SLONG1958 said:

    Quality of Life
    Hi everyone and thanks for helping me.I must be stupid or something but everyone is saying do whats right for me.I'm 53 and I stay busy all the time if I'm not cutting grass I'm working around the house or on my 72 Nova project I'm doing something all the time.My wife and my children want me to get it removed and she understands about the impotency.She said she wants me to live a long life like my Dad and his Dad.I'm more worried about the leaking,is it alot or just a few drops which I do now.Somebody on here wanted to know what my psa levels have been.In 2008 1st psa test 3.1 09 and 10 didn't get one till 1/11 which was 4.9.I can't believe I did't get a blood test in those 2 years.I started going to the Chiropractor for neck and lower back and I told him of my PC diagnose and he said he thinks he can help me with getting adjusted along with vitamins and Alkaline water plus some kind of vitamin especially for the Prostate.He want me to do this for about 2 or 3 month and then get me PSA level checked again.What do you guys think of this.

    Again thanks.

    What?
    Slong,

    Chiropractors are wonderful people (at least I think most of them are) but I wouldn't dream of trusting my prostate cancer treatment to someone who wanted to give me vitamins and Alkaline water. There are several threads on this forum over the past several months that disucss diet, exercise, and various supplements but almost every study I have read discount that any vitamins are a cure-all for prostate cancer. Eliminating dairy in my case (and other too) lowered my PSA and I believe that if you're eating a balanced a proper diet in moderation that you don't need supplements except for perhaps B12. I have no idea what the theory behind the alkaline water might be. I think there is a place for a holistic approach to treating cancer in conjunction with your expert medical team but I would suggest you discuss it in detail with your doctors and perhaps seek a certifed cancer nutritionist or homeopathic doctor in this area...not a chiopractor.

    Regarding levels of incontinence and impotency, I would suggest you read some of the recent threads on AUS or other artificial sphincters or various techniques men use to try to regain potency. While I haven't had to deal with those issues, from what I have read every man is different as well as their symptoms. The good news is that the majority of men regain continence and some degree of erectile function within a year of surgery but I would defer to someone dealing with that to give you more details.

    Families do indeed play a big role in the treatment decision. I know mine did. But I found that close family tends to make their wishes known from a very emotional point of view, not based on knowledge and research that only you can do and understand. I think all of us who have lived through a diagnosis, reasearch, and eventual treatment understand that only you can make the decision and it has to be based on your individual priorities and what you want. It's hard to grasp at first, but believe me, it will come.

    K
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    SLONG1958 said:

    Quality of Life
    Hi everyone and thanks for helping me.I must be stupid or something but everyone is saying do whats right for me.I'm 53 and I stay busy all the time if I'm not cutting grass I'm working around the house or on my 72 Nova project I'm doing something all the time.My wife and my children want me to get it removed and she understands about the impotency.She said she wants me to live a long life like my Dad and his Dad.I'm more worried about the leaking,is it alot or just a few drops which I do now.Somebody on here wanted to know what my psa levels have been.In 2008 1st psa test 3.1 09 and 10 didn't get one till 1/11 which was 4.9.I can't believe I did't get a blood test in those 2 years.I started going to the Chiropractor for neck and lower back and I told him of my PC diagnose and he said he thinks he can help me with getting adjusted along with vitamins and Alkaline water plus some kind of vitamin especially for the Prostate.He want me to do this for about 2 or 3 month and then get me PSA level checked again.What do you guys think of this.

    Again thanks.

    Quack
    Say this ten times, "my chiropractor is a quack"
  • recordal
    recordal Member Posts: 5
    Kongo said:

    Welcome
    Recordal,

    Welcome to the forum and congratulations on treating your cancer. I hope that you quickly recover from your surgery, regain your continence and erectile function, and enjoy those grandchildren on your lap.

    Without knowing details of your diagnosis it's difficult to comment on your choice other than to say that you appear to have made it based on several priorities you laid out for yourself and that is what I think every man should do as well when facing treatment options.

    I would, however, like to comment on several of your statements from a different point of view. For some of the same priorities you cite, I chose a radiation therapy.

    My family also urged me to "get rid of the cancer" but I came to realize that this was my decision not theirs and that their opinions were driven by a gut-wrenching inate fear of the word "cancer" rather than any informed judgement on prostate cancer. So while I agree that family influences can be a powerful impetus during the decision making process, at the end of the day -- for me at least -- that was not a determining factor.

    Certainly family history plays a big role and the early death of your father and grandfather would weigh heavily on your decision. BTW, how did they treat their cancer?

    There are little comparative studies about prostate cancer biochemical recurrence other than a large study that looked at men who had either RP or radiation treatment in the early 90s. Those were the days before DaVinci or the newer forms of radiation treatment such as SBRT, IMRT, Tomography, HDR brcachtherapy, or IGRT. It makes little sense to compare the EBRT of the early 90s with its broad pelvic dosage patterns to modern radiation techniques that use fractional doses, compensate for prostate movement in real time, and deliver planned dosages with sub-millimeter accuracy. In any event, at the five year point that study shows almost exactly the same BCR rate with either RP or radiation (34% vs. 35%) The ten-year rates do indeed show a higher overall failure rate for radiation (46% to 37%) but there were several factors in this study that were not normalized and again, it was a completely different method of delivery than what is commonly used today.

    The good news with respect to BCR failure rates is that regardless of whether or not you had surgery or radiation treatment, the long term prognosis following recurrence remains very high and only a minority of these men actually die from prostate cancer. In fact, the number one cause of death for men who have been diagnosed with prostate cancer is heart disease.

    While I considered those older studies when I made my choices, it was not a determinant factor as the technology today had moved so far beyond what was in use then both in surgical techniques and radiology. In any case, my priority was in quality of life (not quantity of life) and I too wanted to avoid the risks of incontinence and impotence.

    HDR brachytherapy, a form of radiation that uses temporary radioactive wires inserted in the prostate has nearly a 90% BCR free survival rate at the 10-year point. CyberKnife (a from of SBRT and the method I used to treat my PCa) has 5-year success rates above 90% and since it is modeled on the HDR brachytherapy protocal, it is expected to have similar long term success rates.

    When you say that the radiation would be long and drawn out, I assume you are referring to an IMRT regimen that typically has 40-45 treatment sessions, each one lasting a few minutes. While that is a long time to be going back to the doctor each day, it seems to me it is over at about the same time most men recover from their surgery and get back to a normal life. In my treatment, it was over in 5 sessions and wasn't drawn out at all.

    With respect to fatigue, it is true that some radiation treatments have a mild degree of fatigue associated with the treatment, particularly near the end of a long treatment plan. Not every patient reacts the same way to radiation and some feel no fatigue at all. In my case, I never felt any fatigue. I think most men are pretty fatigued after the major surgery of RP as well. Fatigue from radiation passes within a week or so after treatment is complete.

    The only type of radiation where your grandchildren wouldn't be able to sit on your lap is if you had either the iodine or palladium isotopes inserted in your prostate. The half-life for these isotopes is about two months and the standard rule (at least at the Mayo Clinic) is that young children should not sit on the lap for "prolonged periods" for two months after treatment. I don't know about your grandchildren but mine are pretty hard to keep still for a "prolonged" period in any event. It seems to me that two months is more of an inconvenience rather than "several months" you stated but perhaps it just seems longer when you can't hold them as you would wish. I would also think that tenderness about scar tissue from your surgery will somewhat limit how much sitting or jumping around in your lap by grandchildren.

    I certainly respect your decisions and truly do hope they play out as you expect. But there are always two sides to the story about our treatment choices and I've learned to greatly discount over generalizatons about prostate cancer treatments and their effects.

    Best wishes for a full and speedy recovery and I look forward to your future posts.

    K

    decisions - decisions - decisions
    K

    Thanks for your reply. I understand your desire to get all the facts straight so one can make an "informed" decision. My problem from the start was finding too much information. It's everywhere - internet, books and pamphlets supplied by treatment providers, men to men support groups, cancer survivors, advertisements and more. I couldn't understand why the doctors just didn't recommend a certain treatment.

    Speaking to as many relevant people as possible including speaking to doctors on a human to human level as opposed to a provider to consumer level I found even the most up to the minute information is subject to discretion.

    The final piece of information I received was from the American Cancer Society itself. I thought surely they know the bottom line. Their DVD was most helpful yet contained information that to me did not seem completely accurate and up to date.

    Having all this wonderful knowledge I still had many questions. I laid out all the "facts" in front of myself, the pros and the cons, and I was still left with a very difficult decision - mainly because there were no guarantees.

    The final decision probably came from my heart and not my head. I place more value on faith and prayer than on all the information in the world.

    My primary desire for posting on this forum is to help other men, on a human level, come to a final - good - decision. Keep up the good work and as you say there are always (at least) two sides to the story.

    Thanks again.

    Record Al