New Guidelines

jminnj
jminnj Member Posts: 129
edited March 2014 in Prostate Cancer #1
Okay everyone, did you see the new guidelines for testing? They are quite an eye opener. I just don't get it. They want guys to wait until they are 50 to have the test done unless they are having symptoms. Afraid that the screening will do more harm than good. They are concerned about the risks of incontinence and impotence.

HHHHMMM..... Lets see, I am 47, had no symptoms, a very slightly elevated PSA (2.9) and 35% of my gland was affected. Because of the early stage I was able to have Robotic Surgery. Now if I had waited until my physical at age 50, where would I be? I don't even want to think about it.

Some of us caught it very early, some of us not until much later. I am afraid that in 10 years we will be seeing way too many brothers who did not get treated early enough. I hope and pray I am wrong.

I feel so fortunate that my doctors were agressive in testing and I want every guy to be able to have that same opportunity. I really feel this is a step backwards.

God Bless,
Joe
«1

Comments

  • lewvino
    lewvino Member Posts: 1,010
    I agree with you Joe. I knew
    I agree with you Joe. I knew I was in a high risk category since my dad had PC but was still a shock to me to find out I had it at age 54. I really feel for the 'younger' guys like you.

    Larry
  • Susiebelle
    Susiebelle Member Posts: 15
    lewvino said:

    I agree with you Joe. I knew
    I agree with you Joe. I knew I was in a high risk category since my dad had PC but was still a shock to me to find out I had it at age 54. I really feel for the 'younger' guys like you.

    Larry

    These new guidelines....
    Gentlemen,

    If you would allow a lady to speak, these new guidelines are ridiculous.

    My husband was diagnosed at age 56 with PC. He had no symptoms, and it was found by accident. He was diagnosed at Stage IV. We are dealing with the changes to our lives as best we can.

    One of the young women that works with my daughter in health care, heard about my husband. She urged her husband to get tested. He isn't out of his 40's yet. But, he spoke to his doctor, got tested, and you know where this is going. He was found to have PC, very early stages thank goodness, and is now considering his options.

    Is this where men are headed? Do you have to insist with your doctor that you be tested regardless of your age? I can't see men having to beg to find out if this horrible disease is in their bodies.

    PC changes everyone's lives. Not just the one who has the cancer. And it changes everything about your lives. I have been reading all the posts on this forum for quite some time, and finally felt it was time to jump in.

    For those of you who found it early, thank goodness. For those of you who may not be able to be tested now until 50, I say it's unfair. A discussion between you and your doctor about what is right for you and when it is right for you should not be limited by some guidlines decided by a panel of professionals.

    I could get on my soapbox so easy, so I had best stop.

    Good luck to you all.

    Susiebelle
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    These new guidelines....
    Gentlemen,

    If you would allow a lady to speak, these new guidelines are ridiculous.

    My husband was diagnosed at age 56 with PC. He had no symptoms, and it was found by accident. He was diagnosed at Stage IV. We are dealing with the changes to our lives as best we can.

    One of the young women that works with my daughter in health care, heard about my husband. She urged her husband to get tested. He isn't out of his 40's yet. But, he spoke to his doctor, got tested, and you know where this is going. He was found to have PC, very early stages thank goodness, and is now considering his options.

    Is this where men are headed? Do you have to insist with your doctor that you be tested regardless of your age? I can't see men having to beg to find out if this horrible disease is in their bodies.

    PC changes everyone's lives. Not just the one who has the cancer. And it changes everything about your lives. I have been reading all the posts on this forum for quite some time, and finally felt it was time to jump in.

    For those of you who found it early, thank goodness. For those of you who may not be able to be tested now until 50, I say it's unfair. A discussion between you and your doctor about what is right for you and when it is right for you should not be limited by some guidlines decided by a panel of professionals.

    I could get on my soapbox so easy, so I had best stop.

    Good luck to you all.

    Susiebelle

    EVERYONE!
    THIS IS REDICULOUS! I had a dad that had PC and I was stupid enough not to get tested until it slapped me in the face at a state fair with a big sign "FREE PSA TEST". So I was tested basically on my 52 birthday...had a high reading 7.25 ..went to the family doc....he felt nothing in DRE..did another PSA ...elevated again 6.017 refered me to urologist who had longer and better fingers...felt a nodgle...set up a biopsy....3 of 8 postitive 20% 10% and 10% all 3+3 = 6 gleason....multiple opnions...decided on davinci...12/29/09....now on day 65...First full day of no pad...completed full intercourse at lunch today....and first PSA since surgery <0.1 non-detectable! YEah lets all wait until 50...mine almost broke through the capsle in two places both right and left side....GIVE ME A BREAK we need early testing and detection! I am the luckiest man on earth!!!!!

    Randy in Indy
  • Trew
    Trew Member Posts: 931 Member

    These new guidelines....
    Gentlemen,

    If you would allow a lady to speak, these new guidelines are ridiculous.

    My husband was diagnosed at age 56 with PC. He had no symptoms, and it was found by accident. He was diagnosed at Stage IV. We are dealing with the changes to our lives as best we can.

    One of the young women that works with my daughter in health care, heard about my husband. She urged her husband to get tested. He isn't out of his 40's yet. But, he spoke to his doctor, got tested, and you know where this is going. He was found to have PC, very early stages thank goodness, and is now considering his options.

    Is this where men are headed? Do you have to insist with your doctor that you be tested regardless of your age? I can't see men having to beg to find out if this horrible disease is in their bodies.

    PC changes everyone's lives. Not just the one who has the cancer. And it changes everything about your lives. I have been reading all the posts on this forum for quite some time, and finally felt it was time to jump in.

    For those of you who found it early, thank goodness. For those of you who may not be able to be tested now until 50, I say it's unfair. A discussion between you and your doctor about what is right for you and when it is right for you should not be limited by some guidlines decided by a panel of professionals.

    I could get on my soapbox so easy, so I had best stop.

    Good luck to you all.

    Susiebelle

    You Make a Man Proud!
    SusieB, you just make all th enoise you want. My family doc wasn't testing me for PC either, except for the old finger exam. When I insisted he marked it on a lab order and Presto! I too was a T4 with a gleason of 8 and heading for trouble.

    I told me two sons to start getting tested ASAP- they are just reaching their 40's now and they need to establish a baseline with both a grandfather and dad PC patients.

    Forget Obamacare! scares me to death- give be patients rights- like the right to be tested whenever!
  • Trew
    Trew Member Posts: 931 Member

    EVERYONE!
    THIS IS REDICULOUS! I had a dad that had PC and I was stupid enough not to get tested until it slapped me in the face at a state fair with a big sign "FREE PSA TEST". So I was tested basically on my 52 birthday...had a high reading 7.25 ..went to the family doc....he felt nothing in DRE..did another PSA ...elevated again 6.017 refered me to urologist who had longer and better fingers...felt a nodgle...set up a biopsy....3 of 8 postitive 20% 10% and 10% all 3+3 = 6 gleason....multiple opnions...decided on davinci...12/29/09....now on day 65...First full day of no pad...completed full intercourse at lunch today....and first PSA since surgery <0.1 non-detectable! YEah lets all wait until 50...mine almost broke through the capsle in two places both right and left side....GIVE ME A BREAK we need early testing and detection! I am the luckiest man on earth!!!!!

    Randy in Indy</p>

    Randy, congratulaitons on
    Randy, congratulaitons on the forward progress.
  • Susiebelle
    Susiebelle Member Posts: 15
    Trew said:

    You Make a Man Proud!
    SusieB, you just make all th enoise you want. My family doc wasn't testing me for PC either, except for the old finger exam. When I insisted he marked it on a lab order and Presto! I too was a T4 with a gleason of 8 and heading for trouble.

    I told me two sons to start getting tested ASAP- they are just reaching their 40's now and they need to establish a baseline with both a grandfather and dad PC patients.

    Forget Obamacare! scares me to death- give be patients rights- like the right to be tested whenever!

    Thanks
    Thanks Trew. When my husband was finally tested for PSA, it was 1910! That's right, One Thousand Nine Hundred and Ten.

    He went in for an MRI because they thought he had a ruptured disc causing all the pain in his legs and lower back. NOT! He had cancer in his entire lymph system, and almost every bone in his body. This Saturday, he has to go in for a brain scan. Some of the symptoms he is displaying make the oncologist think it might have spread to his brain. After all, he had cancer in his skull. He is currently on chemo in an effort to control the pain, and to stop the progression. His cancer is so aggressive that it was growing by leaps and bounds. He tried the Lupron thing. Only the first shot worked, after that, nothing. That's when we went to chemo.

    We have been married for 30 years this June. I cannot believe that my husband has this awful disease, and that our lives together will be cut short. Trust me Trew, I make more noise about PC to every man I meet than I think any of them care to hear! But, it's important. And unless you are touched by it, you just don't get how important it is.


    SB
  • Trew
    Trew Member Posts: 931 Member

    Thanks
    Thanks Trew. When my husband was finally tested for PSA, it was 1910! That's right, One Thousand Nine Hundred and Ten.

    He went in for an MRI because they thought he had a ruptured disc causing all the pain in his legs and lower back. NOT! He had cancer in his entire lymph system, and almost every bone in his body. This Saturday, he has to go in for a brain scan. Some of the symptoms he is displaying make the oncologist think it might have spread to his brain. After all, he had cancer in his skull. He is currently on chemo in an effort to control the pain, and to stop the progression. His cancer is so aggressive that it was growing by leaps and bounds. He tried the Lupron thing. Only the first shot worked, after that, nothing. That's when we went to chemo.

    We have been married for 30 years this June. I cannot believe that my husband has this awful disease, and that our lives together will be cut short. Trust me Trew, I make more noise about PC to every man I meet than I think any of them care to hear! But, it's important. And unless you are touched by it, you just don't get how important it is.


    SB

    Dear SusieB and Hubby, I am
    Dear SusieB and Hubby, I am on eligard- my emotions are all messed up and I am crying as I finish your post above.

    I would like to say more but I had such a crash and burn day emotionally yesterday I think I will just stop now. I am so sorry to hear aobut your husband.

    I will be praying for you.
    -Trew
  • fathersson
    fathersson Member Posts: 121
    Very important
    All,

    For me, the testing went beyond what three Drs recommended. According to all 3, current protocol for low volume/gleason cancer such as mine does not call for a CT or bone scan. Well, due to my nurse sisters and nieces insistance, both were eventually ordered for me. Unfortunately/fortunately a superficial bladder tumor was discovered and subsequently removed. My surgeon told me I was very lucky to find it as it was in a very early stage and that down the road it could have easily become dangerous. Another relative who is a research oncology exec at a major pharmaceutical company tells me that her group highly recommends bone and CT scans for any grade PC so as to check for any spreading and so that baseline scans are available if needed in the future.

    In my case, the additonal testing likely saved my life. So I am fortunate.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Trew said:

    Dear SusieB and Hubby, I am
    Dear SusieB and Hubby, I am on eligard- my emotions are all messed up and I am crying as I finish your post above.

    I would like to say more but I had such a crash and burn day emotionally yesterday I think I will just stop now. I am so sorry to hear aobut your husband.

    I will be praying for you.
    -Trew

    Trew - I pray for you...
    No one should have to endure what you have. I hope you get a reward in the end for all the BS you have had to deal with through the Eligard. It's just not right or fair!

    Randy in indy
  • jminnj
    jminnj Member Posts: 129

    Thanks
    Thanks Trew. When my husband was finally tested for PSA, it was 1910! That's right, One Thousand Nine Hundred and Ten.

    He went in for an MRI because they thought he had a ruptured disc causing all the pain in his legs and lower back. NOT! He had cancer in his entire lymph system, and almost every bone in his body. This Saturday, he has to go in for a brain scan. Some of the symptoms he is displaying make the oncologist think it might have spread to his brain. After all, he had cancer in his skull. He is currently on chemo in an effort to control the pain, and to stop the progression. His cancer is so aggressive that it was growing by leaps and bounds. He tried the Lupron thing. Only the first shot worked, after that, nothing. That's when we went to chemo.

    We have been married for 30 years this June. I cannot believe that my husband has this awful disease, and that our lives together will be cut short. Trust me Trew, I make more noise about PC to every man I meet than I think any of them care to hear! But, it's important. And unless you are touched by it, you just don't get how important it is.


    SB

    Susie, I am so sorry to hear
    Susie, I am so sorry to hear about your husband. You will be in my thoughts and prayers. I am very vocal about this disease. I feel that at my age, the Lord gave me this for a reason. I tell every guy I know to make sure they start getting tested early, and every woman I know to make sure their spouse/boyfriend are getting tested.

    Trew, I agree that if this is what National Healthcare is going to bring to us, it is not a good thing (okay so I have a gift for understatement).

    If anything we need to be more proactive with this disease, if it is caught early enough, it is potentially curable.

    Take care all,

    Joe
  • Trew
    Trew Member Posts: 931 Member

    Trew - I pray for you...
    No one should have to endure what you have. I hope you get a reward in the end for all the BS you have had to deal with through the Eligard. It's just not right or fair!

    Randy in indy

    Please, don't interupt me
    Please, don't interupt me right now, I am into the middle of a real good hot flash!!

    I just love those little beads of sweat that run down the face.....

    Weeeee!
  • mrshisname
    mrshisname Member Posts: 186

    Very important
    All,

    For me, the testing went beyond what three Drs recommended. According to all 3, current protocol for low volume/gleason cancer such as mine does not call for a CT or bone scan. Well, due to my nurse sisters and nieces insistance, both were eventually ordered for me. Unfortunately/fortunately a superficial bladder tumor was discovered and subsequently removed. My surgeon told me I was very lucky to find it as it was in a very early stage and that down the road it could have easily become dangerous. Another relative who is a research oncology exec at a major pharmaceutical company tells me that her group highly recommends bone and CT scans for any grade PC so as to check for any spreading and so that baseline scans are available if needed in the future.

    In my case, the additonal testing likely saved my life. So I am fortunate.

    SO true about the testing
    My hubby was diagnosed 2 weeks ago tomorrow, and our first urologist didn't want to order the CT and bone scans. Thankfully, second opinion urologist did. He had the bone scan yesterday and will get CT next week. We await the results, I'm not worried, but it will be nice to have (hopefully) piece of mind. I think any man diagnosed should have those tests. It is hard to truly determine how aggressive the cancer is, and why not use our modern medical tools to determine if there are more problems? I'm just so glad that I kept on hubby to continue getting his psa checked when it started to rise a bit. Though it was never THAT abnormal, these cancers do not all put off large amounts of PSA.
    As far as the "new" guidelines go, next thing these major insurers (Anthem, Cigna, Humana and the like) will stop paying for the PSA test unless you are 50. Just wait. Profits mean more to these vultures than anything...paying their CEO's bonuses and the stockholders dividends are more important than human lives.
  • mrshisname
    mrshisname Member Posts: 186
    Trew said:

    Please, don't interupt me
    Please, don't interupt me right now, I am into the middle of a real good hot flash!!

    I just love those little beads of sweat that run down the face.....

    Weeeee!

    Trew
    Trew, I'm so sorry you are going through all this. God bless you and I will be praying for you. Maria
  • mrshisname
    mrshisname Member Posts: 186

    Thanks
    Thanks Trew. When my husband was finally tested for PSA, it was 1910! That's right, One Thousand Nine Hundred and Ten.

    He went in for an MRI because they thought he had a ruptured disc causing all the pain in his legs and lower back. NOT! He had cancer in his entire lymph system, and almost every bone in his body. This Saturday, he has to go in for a brain scan. Some of the symptoms he is displaying make the oncologist think it might have spread to his brain. After all, he had cancer in his skull. He is currently on chemo in an effort to control the pain, and to stop the progression. His cancer is so aggressive that it was growing by leaps and bounds. He tried the Lupron thing. Only the first shot worked, after that, nothing. That's when we went to chemo.

    We have been married for 30 years this June. I cannot believe that my husband has this awful disease, and that our lives together will be cut short. Trust me Trew, I make more noise about PC to every man I meet than I think any of them care to hear! But, it's important. And unless you are touched by it, you just don't get how important it is.


    SB

    Susiebelle
    I am so sorry for what you are dealing with. Please know that you both will be in my prayers.
  • SO true about the testing
    My hubby was diagnosed 2 weeks ago tomorrow, and our first urologist didn't want to order the CT and bone scans. Thankfully, second opinion urologist did. He had the bone scan yesterday and will get CT next week. We await the results, I'm not worried, but it will be nice to have (hopefully) piece of mind. I think any man diagnosed should have those tests. It is hard to truly determine how aggressive the cancer is, and why not use our modern medical tools to determine if there are more problems? I'm just so glad that I kept on hubby to continue getting his psa checked when it started to rise a bit. Though it was never THAT abnormal, these cancers do not all put off large amounts of PSA.
    As far as the "new" guidelines go, next thing these major insurers (Anthem, Cigna, Humana and the like) will stop paying for the PSA test unless you are 50. Just wait. Profits mean more to these vultures than anything...paying their CEO's bonuses and the stockholders dividends are more important than human lives.

    on all the above mentioned
    My impression is that " The Profession" has decided to de-emphasize prolific early testing among masses of young men in an attempt to keep them from ruining their quality of life over unfounded fears of an immediate death. Surgeons and people of ethics are recoiling from the debauch and ensuing morbidity of past golden standard practices in OR s around the world . Truly these historical PC treatments have been an abomination !

    Sounds like everyone is echoing the need for Health-care reform which will play a big role in our survival .

    As far as I have read, men of all ages can always "request", onus on them , the PSA test.

    All of these cares begs for a spiritual and humane context of reflection.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    I wonder which organization came out with the new
    guidelines.........was it the american urological association.

    I was surprised that it was changed to 50 when there are men in their forties who have contracted this disease, and in many cases aggressive.

    I would thing that it would be a good idea to have a baseline test starting , say at age 35 or 40 especially for those who have a family history, or groups of individuals who are more likely to contract the disease, for example blacks in the united states.

    I agree with "active surveillance" above that there are many younger men who ruin their qualitiy of life by seeking out unnecessary aggressive treatment, however I still believe that its important to have the medical information with hopes that the correct treatment option will be followed.

    Ira
  • shane59
    shane59 Member Posts: 86
    prostate cancer test at any age
    Lucky here in Australia they are now saying test at 40 years i just found out
    just 6 months before my 50th and made my 2 boys and sun inlaw go for the test lucky they were all clear at present . They only got mine cause I insisted somthing was not right 3 months later I tell everyone I know or meet they may think I am crazy I dont care .If I can save just one then its all worth it . hope your journey is PSA free keep up the good work shane
  • jminnj
    jminnj Member Posts: 129
    shane59 said:

    prostate cancer test at any age
    Lucky here in Australia they are now saying test at 40 years i just found out
    just 6 months before my 50th and made my 2 boys and sun inlaw go for the test lucky they were all clear at present . They only got mine cause I insisted somthing was not right 3 months later I tell everyone I know or meet they may think I am crazy I dont care .If I can save just one then its all worth it . hope your journey is PSA free keep up the good work shane

    HealthCare Reform
    I believe that this is a lead in to the health care reform. I think the medical community is seeing that they may need to change their guidelines, not for the benefit of the patient, but rather, for where they think they are going to need to be if/when a health care reform bill is passed.

    Parts of the current proposal do not allow for annual testing but rather testing every other year or longer. That scares me for everyone, men and women alike. The other piece that frightens me a little is that one of the proposals out there that would include the "public option" would exclude "pre-existing conditions". Guess where that puts us?

    Do we need better healthcare in this country? Yes, without a doubt. I am just not sure that any of the proposals (from either side of the fence) are going to work. They really need to work together, not against each other. (sorry i will get off that soap box now)
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    jminnj said:

    HealthCare Reform
    I believe that this is a lead in to the health care reform. I think the medical community is seeing that they may need to change their guidelines, not for the benefit of the patient, but rather, for where they think they are going to need to be if/when a health care reform bill is passed.

    Parts of the current proposal do not allow for annual testing but rather testing every other year or longer. That scares me for everyone, men and women alike. The other piece that frightens me a little is that one of the proposals out there that would include the "public option" would exclude "pre-existing conditions". Guess where that puts us?

    Do we need better healthcare in this country? Yes, without a doubt. I am just not sure that any of the proposals (from either side of the fence) are going to work. They really need to work together, not against each other. (sorry i will get off that soap box now)

    Very interesting viewpoint Joe
    I think you may be onto something...if it's true it's a shame and very sad that the reform will then certainly end in a huge disadvantage to the patient...very sad indeed.
  • txbarton
    txbarton Member Posts: 89

    on all the above mentioned
    My impression is that " The Profession" has decided to de-emphasize prolific early testing among masses of young men in an attempt to keep them from ruining their quality of life over unfounded fears of an immediate death. Surgeons and people of ethics are recoiling from the debauch and ensuing morbidity of past golden standard practices in OR s around the world . Truly these historical PC treatments have been an abomination !

    Sounds like everyone is echoing the need for Health-care reform which will play a big role in our survival .

    As far as I have read, men of all ages can always "request", onus on them , the PSA test.

    All of these cares begs for a spiritual and humane context of reflection.

    My opinion is that "The
    My opinion is that "The Profession" is insurance executives and politicians who are in their back pocket.

    Medical professionals are in favor of testing. Those I know are not financially driven.

    VB